0A4F4F9BD490A749D5437F821CF06DF1
Opinion No. 33: Somatic and Germinal Line Gene Modification (2005)
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Political / political affiliation
Searching for indicator political:
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p.000002: II.3.1. Historical summary – Medical status questionis
p.000002: II.3.2. Private negative eugenics: current situation
p.000002: II.3.3. Ethical considerations
p.000002: II.4. Positive eugenics by active intervention in the human germ cell line CHAPTERE III. SOMATIC GENE MODIFICATION
p.000002: III.1. Historical summary – Medical status questionis
p.000002: III.2. Therapeutic indications and difficulties
p.000002: III.3. Ethical discussion about somatic gene modification
p.000002: III.3.1. General considerations
p.000002: III.3.2. Specific ethical problems
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p.000002: CHAPTER IV. GERMINAL GENE MODIFICATION
p.000002:
p.000002: IV.1. Historical summary
p.000002: IV.1.1. Arguments of ‘bioprogressives’ with respect to the modification of the human genome
p.000002: IV.1.2. Arguments of ‘bioconservatives’ with respect to the modification of the human genome
p.000002: IV.2. Ethical discussion within the Committee concerning germinal gene modification
p.000002: IV.2.1. Standpoint A
p.000002: IV.2.2. Standpoint B
p.000002: IV.2.3. Standpoint C
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p.000002: CHAPTER V. CONCLUSIONS AND RECOMMENDATIONS
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p.000002: Opinion no 33 of 7 November 2005 - Final version
p.000002: 2
p.000002:
p.000002: Questions put to the Committee
p.000002: The Senate puts the following question.
p.000002: “[ … ] In view of various legislative proposals pending in the Senate concerning research into embryos and the
p.000002: protection of embryos in vitro;
p.000002: In view of the important social and ethical challenges for political decision making with respect to
p.000002: scientific research, the potential uses of modern biotechnology and the implications of this on the
p.000002: protection of the embryo;
p.000002: In view of article 18 of the Treaty of the Council of Europe relating to human rights and biology and medicine; [ … ]
p.000002:
p.000002: The undersigned request the Belgian Advisory Committee on Bioethics to, within the period determined in the
p.000002: aforementioned Agreement of Cooperation, present its recommendations in the light of the abovementioned
p.000002: legislative proposals concerning:
p.000002:
p.000002: - the concepts “embryo” and “pre-embryo”;
p.000002: - the concept “research” in the sense of article 18 of the aforementioned Treaty;
p.000002: - the concept of “adequate protection” of the embryo and pre-embryo;
p.000002: - the implications and risks of the uses of modern biotechnology with respect to the human embryo;
p.000002: - the implications and modalities of scientific research on the human embryo; More particularly:
p.000002: 1. the acceptability of scientific research with respect to somatic gene therapy and germinal gene
p.000002: therapy;
p.000002: 2. the distinction between corrective germinal gene therapy and enhancement germinal gene therapy;
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p.000009: counselling, the reducing of resistance to the termination of the pregnancy after pre-implantation diagnosis (PGD) or
p.000009: after the termination of the pregnancy after prenatal diagnosis (PD), etc.
p.000009:
p.000009: - Compelling macro-eugenics, sometimes called state eugenics. This involves
p.000009: the introduction of imperative measures at state level. Here the freedom of the individual or the couple is
p.000009: affected. One can interpret the prohibition of marriages between blood relations for genetic reasons as a form of
p.000009: this type of macro-eugenics.
p.000009:
p.000009:
p.000009: 4 The Descent of Man, General Summary, Publisher The Great Books, p. 596
p.000009:
p.000009: Opinion no 33 of 7 November 2005 - Final version
p.000010: 10
p.000010:
p.000010: The example of the policy of compulsory vaccinations indicates that the introduction of imperative measures within the
p.000010: context of public health and imperative measures by the state is therefore not always regarded as unacceptable.
p.000010: However, negative state eugenics was responsible for misuse in the sterilisation and elimination of the mentally ill in
p.000010: the XX century.
p.000010:
p.000010: Each type of eugenics can have a negative form: elimination or reduction of undesired characteristics or a
p.000010: positive form: the promoting of characteristics regarded as desirable.
p.000010:
p.000010: This terminological approach entails no value judgement, but can serve as a starting point for discussions about
p.000010: scientific results and ethical and political standpoints.
p.000010:
p.000010: II.3. Negative eugenics by the selection of embryos and/or foetus
p.000010: II.3.1. Historical summary – Medical status questionis
p.000010:
p.000010: A new medical discipline has developed since the end of the 60's: clinical genetics. Its importance has
p.000010: greatly increased due to scientific progress and reinforced cooperation with gynaecology and obstetrics
p.000010: departments. Pregnant women with an increased risk of a child with a genetic illness can increasingly make use of
p.000010: choriocentesis. 5(11th week) or of an amniocentesis
p.000010: 6 (16th week). These methods can be used to examine if the unborn child is affected by one of the sought
p.000010: abnormalities. Other methods for prenatal diagnosis, including echography, ensure that one can identify
p.000010: abnormalities in a later stage of the pregnancy. Tracing an illness or deformity always confronts the future
p.000010: parents with the decision of whether or not to terminate the pregnancy (VPT, voluntary pregnancy termination).7
p.000010:
p.000010: Resorting to VPT can be avoided in a number of cases by a new form of prenatal diagnosis: pre- implantation genetic
p.000010: diagnostics (PGD). This form of diagnosis assumes the use of in-vitro fertilisation (IVF was introduced
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p.000027: itself one day why it does not have better genes - just as good genes as his friend whose parents did not
p.000027: refuse enhancement intervention (memory, intelligence, health) in the name of respect for human nature and
p.000027: the genetic lottery. Here the wish is to justify the enormous actual inequalities of the individuals at genetic level
p.000027: under the pretence that the “natural lottery” is the condition for equality in law of people. But even in highly
p.000027: developed societies actual genetic inequalities are
p.000027:
p.000027: 44 Certain arguments in this paragraph in favour of Standpoint A have been developed further:
p.000027: - by G. Hottois, « Quel rôle pour les philosophes dans les débats bioéthiques ? », Présentation et
p.000027: discussion de G. Habermas, L’avenir de la nature humaine. Vers un eugénisme libéral ?, article à paraître
p.000027: - and by J.-N. Missa, « L’homme recombiné : les enjeux éthiques et philosophiques de la modification du génome de
p.000027: l’être humain » in J.-Y. Goffi, Regard sur les technosciences, Paris, Vrin, 2006 – sous presse.
p.000027:
p.000027: Opinion no 33 of 7 November 2005 - Final version
p.000028: 28
p.000028:
p.000028: not or poorly compensated. If on the contrary we accept that genetic intervention is not by definition
p.000028: a bad thing, the real but very difficult questions arise: those of the vigilant monitoring of eugenistic
p.000028: research and eugenistic development, and particularly that of rightful availability and fair access. It is exactly the
p.000028: political-philosophical questions that we must dare to tackle, instead of merely accepting the hypothesis that genetic
p.000028: recombination of the human being can be applied in the more or less near future. The questions of political philosophy
p.000028: are for that matter now already being widely discussed in Anglo-American literature: the genetic possibilities
p.000028: are taken seriously and the conclusions are rarely of the all-or-nothing type. On the contrary, it is attempted to
p.000028: determine balanced conditions and rules without minimising the risks, advantages and disadvantages, particularly
p.000028: based on the prevailing political philosophies (those of J. Rawls and R. Nozick)45.
p.000028:
p.000028: As regards the objection that the modification of the genome of a human being would be a threat to natural
p.000028: diversity (if you could design your children à la carte, certain beauty features and intelligence characteristics
p.000028: would be obtaining desirable natural diversity), it can be suggested that the opposite is rather the case. The
p.000028: realm of possibilities increases with DNA recombination. The diversity of tastes and cultures is large enough to
p.000028: ensure people would not all make the same choices. Furthermore, this concerns genetic modification. The weight of the
p.000028: environment and of epigenetic modification, where it is often forgotten that they are just as biological, may
p.000028: not be underestimated. The genes form the structure of the body and the brain. The environment models and changes the
p.000028: neuronal architecture. Nature and culture both have a biological base. The conceptual contrast between genetic
p.000028: conditioning and symbolic (culture-, environment- and education-related) conditioning must therefore be seen as
p.000028: a gradation difference and not as a difference in nature. Symbolic conditioning is not immaterial. It requires a
p.000028: dynamic structural change of the neuronal networks which originate due to education and interaction with the
p.000028: environment. As regards genetic conditioning, this is not necessarily irreversible. It cannot be ruled out
p.000028: that genetic engineering will be able to reverse what it has already done, or develop molecules that can allow the
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p.000029: genotype (formed by what is recorded in the DNA) and phenotype 46 - the physical and health situation of a living
p.000029: being at a given time in his existence, that is the result of the interaction of the genome and external factors - is
p.000029: however useful in considering the relative importance of genes with regard to the influence of the environment.
p.000029: These members suggest a pragmatic reflection on the – at the same time healing and baleful – consequences of the fact
p.000029: that “life” due to its genotypical aspect (i.e. modification of the human genome) is today a subject of modern
p.000029: technological science.
p.000029: The members do, however, want to immediately refute the biocatastrophic visions of the risk of the prospect of the
p.000029: total changing of the gene pool of a whole population. They would simply recall that to reduce the frequency of the
p.000029: so-called poor genes from one per hundred to one per thousand, twenty-two generations would in reality have to
p.000029: be subjected to more or less imperative sterilisation measures.47 Furthermore, it is today an absolute
p.000029: fantasy to want to “improve” the human species using a selection and sterilisation policy: to impose such a policy,
p.000029: imperative measures would inevitably be required that would come up against various “obstacles” in the path
p.000029: of the principle of a democratic society. The choice of whether or not to impose such measures would therefore in
p.000029: essence not be a technical-scientific choice but a political one. As far as germinal gene manipulations are
p.000029: concerned 48 , it is hardly probably that the gene pool of a population would change more efficiently
p.000029: (faster), unless this would be industrially and directed imperiously organised in a market economy that would feed
p.000029: the new “requirement” of improvement, after it has been elaborated from scratch.
p.000029:
p.000029: In general, gene therapy as a component of biomedical research and clinical care, is still in the experimental stage,
p.000029: both in its somatic and in its germinal form. The current debates about this form of therapy, that cover both its
p.000029: ethical and medical aspects, must consequently be seen in the context of uncertainty. At present specialists are
p.000029: simply not succeeding in reaching agreement about the medical-technical feasibility of that type of therapy, more
p.000029: specifically the therapeutic and enhancement genetic changes in the germ line; and just as little agreement is reached
p.000029: on the desirability of en masse allocating the poorly available resources to this research niche. Private
p.000029: finance has for that matter largely turned its back on gene therapy research since the emergence of
p.000029: the new eldorado of regenerative medicine. The ethical discussions on the public forum and in ‘civil society’
p.000029: would consequently better concentrate on the one hand on the question of justice as regards access to new therapeutic
p.000029: techniques – a question that befits a democratic society - and on the other hand the uncertainty concerning certain
p.000029: ethical implications of the carrying out of gene therapy in clinical research. Consequently, it
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p.000030: accent lies on the sick individual or on public health). Some members accordingly ask themselves if it is
p.000030: desirable to tolerate physicians departing from their traditional assignment for the purpose of improving
p.000030: life itself? Or whether it is desirable that we allow physicians to penetrate our privacy and make known our
p.000030: organic secrets
p.000030: – and even genetic defects – out of concern for public health? As far as the members are concerned,
p.000030: such questions form the actual starting points for debates about modern eugenics, now knowledge and new technical
p.000030: resources open possibilities of innovative (but not yet validated) germinal activities on “life” - that has
p.000030: become a technical-scientific subject - with the purpose of making life more healthy or “improving” it.
p.000030: Providing that the conditions for gene modification obtain a deontologic and legal framework that is strict, serene and
p.000030: evolutive, according to the members it must be possible to restrain any lapses and counter the argumentative
p.000030: automatisms in the style of the ‘slippery slope’ 52. They are very aware that the impression of a downward slide
p.000030: resonates against the traditional fear of the unknown, that is here accompanied by the modern fear of what
p.000030: we could cause amongst ourselves; so - sometimes unfounded - concern is aroused among public opinion.53
p.000030:
p.000030: The same members also believe (since the present opinion is an answer to an interpellation of the Advisory Committee on
p.000030: Bioethics by the political world) that we cannot pass the question as to what place handicaps of genetic origin have in
p.000030: our society in the light of the new possibilities of genetic modification in the germ line, because an argumentation
p.000030: continuum exists between
p.000030:
p.000030: 49 In the sense of politics based on actual, practical considerations, rather than on moral or ideological
p.000030: considerations.
p.000030: 50 D. Bourg, “Bioéthique: faut-il avoir peur?”, Esprit, May 1991.
p.000030: 51 Regarding the “manipulation of some people by others” it is interesting from this perspective to return to the
p.000030: extraordinary, irresponsible lack of caution, not to mention the deliberate intent with which soldiers and the
p.000030: population were exposed to genetic risks during the development of nuclear weapons (and during the first accidents
p.000030: with civil nuclear energy in the fifties). Only in 1955, at the Geneva conference on nuclear energy, did
p.000030: physicians and biologists really make a start on research into the consequences of radiation on the living world
p.000030: and in particular on gene mutations. At the conference it was also – finally – proposed to exactly determine to which
p.000030: level of radiation a person may be exposed without the integrity of the human species being affected. (see. J. Gallini.
p.000030: Cri d’alarme des généticiens. Le Monde, 17 August 1955).
p.000030: 52 If this style of argumentation had been applied to organ transplants, the development of this therapy would have
p.000030: been impeded in the sixties.
p.000030: 53 We will add a sentence by Paul Valéry here: “Just as Progress was idolised, the cursing of progress was idolised;
p.000030: that resulted in two commonplaces.”
p.000030:
p.000030: Opinion no 33 of 7 November 2005 - Final version
p.000031: 31
p.000031:
p.000031: the two questions. The members do not see this as a false debate, but propose concisely looking at
p.000031: what happens in reality, and what the pertinent basic questions are as possible assistance in making
p.000031: well-considered decisions as regards genetic changes in the germ line that demonstrate respect for the whole
p.000031: population.
p.000031: Formerly the “old” eugenics concentrated on stimulating the birth of the strongest at the expense of the
p.000031: weakest. Now things clearly go a step further, thanks to the possibilities that technical genetic science offers to
p.000031: avoid the implantation of an embryo that is regarded as defective or as a carrier of a chromosomal
p.000031: abnormality. But the ability to create new genes and consequently new biological functions takes us yet another step
p.000031: further, that can lead to the modification of the nature of the human species.
p.000031: A simple question then arises: To actually improve the human species?
p.000031: This is an awesome question, that should be preceded by other questions that according to some are
p.000031: relevant, according to others are iconoclastic, and according to yet others archaic: Where is the limit between
p.000031: what is pathological and what is normal? What is so-called human normality? Is it wise to contemplate a norm for the
p.000031: human species? Who can assume the right to define the norm? Converting the myth of the zero-defect baby with all the
p.000031: required properties into reality, is that really progress?
p.000031: Nevertheless, another more political question arises that automatically results from the last questions and
p.000031: from the answers that may or may not be given. What is the place of the disabled person in our society and how we can
p.000031: speak of enhancement genetic changes in the germ line without – even subconsciously – detracting from the dignity of
p.000031: disabled persons (and the people in their environment), in other words those who often suffer more due to the way in
p.000031: which they are looked down on by society than their actual disability? The question refers us to either
p.000031: hyperindividualistic or collective egoism, or to the capacity of compassion in the sense of co- living. This is
p.000031: therefore everything but a false debate without a view of reality. What is wrong is the widespread notion that a
p.000031: “genetic defect” and its phenotypical manifestation are by definition social non-values, a catastrophe for
p.000031: the families and a professional failure by the therapist.
p.000031:
p.000031: Even if there has not yet been a wide debate about the modern eugenistic risk, general prenatal screening is already
p.000031: a reality. Without wanting to take a step back in this evolution (that is highly beneficial to the health
p.000031: of individuals), we must determine that should matters come so far that PGD 54 and prenatal screening 55 of
p.000031: chromosomal anomalies or otherwise would be systematically proposed and even made compulsory, the nature of
p.000031: the medical action would fundamentally change: medical treatment would then no longer be a curative and
p.000031: preventive individual medical approach, but would de facto come under a more or less imperative public health approach.
p.000031: And because the concept of public health has evolved, we would remind that the public health approach has in principle
p.000031: two objectives: firstly to make the medical care market more efficient and therefore rationalise its operation,
p.000031: and secondly de facto reduce the risk that an illness occurs and therefore anticipate pathological
p.000031: phenomenon. The – medical and financial – risk and the knowledge of that risk are therefore central to the public
p.000031: health approach, and require epidemiological research and public action to reduce that risk.
p.000031: There are therefore three reasons to transfer the public health approach from the exclusive
p.000031: medical-scientific arena to the political arena.
p.000031: Firstly the health approach aims at social change: a return to normal by the elimination of a situation considered
p.000031: undesirable (the illness) thanks to a change in the pathogenic human
p.000031:
p.000031:
p.000031: 54 We must however add that PGD de facto reduces the need for the application of therapeutic germinal gene therapy.
p.000031: 55 What is the legal framework for PGD and prenatal screening? PGD enables the avoidance of the birth of a child with
p.000031: a genetic abnormality detected in the embryo in vitro by not implanting an embryo that is the carrier of the
p.000031: identified anomaly, and therefore prevents an abortion. The legitimacy of this practice results a
p.000031: contrario – as necessary – from article 5 of the law of 11 May 2003, that only allows the
p.000031: implantation of people with embryos on which research is conducted provided that that research brings a benefit to the
p.000031: embryo itself.
p.000031: But the law only concerns embryos in vitro and not embryos in utero. If a genetic illness is detected,
p.000031: prenatal screening enables abortion (voluntary pregnancy termination) to take place when “it is
p.000031: established that the child to be born will be suffering from an extremely serious illness that is recognised as
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p.000032: outside the private domain to map the “biological destiny” of a person to be potentially insured.
p.000032: Thirdly, an action by the authorities in answer to a public health problem (just like any social policy from an
p.000032: authority) is given shape by a redistribution of goods and services for populations defined by the
p.000032: characteristics of the problem to be solved: “who gets what and how does this happen?” And to answer the question, a
p.000032: minimum of scientific orthodoxy must be respected by requiring experimental proof that there is a causal
p.000032: connection between a risk factor and an illness (for example smoking and lung cancer, trisomy 21 and mongolism!).
p.000032: But one must also assess the impact of the health care expenses by the statistical or
p.000032: epidemiological improvement of a series of disorders. Such an evaluation of the goods and services
p.000032: subsequently makes it possible to more fairly redistribute the benefits 57 and share the costs, either (ideally) in an
p.000032: incentive form or in a more or less imperative form.
p.000032:
p.000032: Willingly or unwillingly, with regard to handicaps of genetic origin we must raise the question of whether the gradual
p.000032: transition of public health to a more imperative approach does not involve the risk that in the name of the
p.000032: public health a new eugenics originates, sometimes called “democratic eugenics”. This is “democratic eugenics”
p.000032: for which the scientific and the political world will have to assume responsibility because they will both
p.000032: have been at its basis: the scientist by discharging him/herself of the ethical aspect of his activity
p.000032: and discarding the social significance of the activity, and the politician by hiding behind the opinion
p.000032: of the scientific expert in a time of changing and increasingly segmented knowledge 58. It is exactly for this
p.000032: reason that we deliberately cite the example of the connection between smoking and lung cancer besides the example of
p.000032: the connection between trisomy 21 and mongolism. From the analogy it indeed appears how easily one could
p.000032: arrive at the application of “hygienically correct” 59 thinking to two totally different situations 60, in the
p.000032: name of the public health. We must therefore fundamentally dare to raise another question: how long will it be before
p.000032: on the one hand chronic disorders that are the consequence of individual or social irresponsibility, such
p.000032: as alcoholism or smoking, and on the other hand constitutionally determined handicaps of the genetically
p.000032: underprivileged, will be systematically mixed and deliberately thrown on the same heap (because this is
p.000032: economically cost-effective and socially desirable)?
p.000032: Let us continue with our analysis. The health approach can indeed (in the name of certain progress of
p.000032: technical science which one day may cover the possibilities of therapeutic and optimising/enhancement
p.000032: germinal line gene modification) sometimes stealthily apply a certain amount of force. Since the seventies,
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p.000038: experiments.
p.000038:
p.000038: These members are aware of the fact that the phenotype of a person is the result of interaction between the genome
p.000038: and the internal environment (cellular and somatic) and the external environment (the physical, biological
p.000038: and social-cultural environment) during a person's development. They do emphasise, however, that in an
p.000038: equivalent and stable environment an important part of interindividual variation can be attributed to genetic
p.000038: factors.
p.000038:
p.000038: These members are of the opinion that any reasoning based on all or nothing must be avoided. This reasoning gives
p.000038: support to people who are radically against the modification of the germinal genome in humans. Regulations
p.000038: that do not evolve and are rigid with an absolute and final prohibition of positive eugenics and a very restrictive
p.000038: list for negative eugenics can only push research to become clandestine and applications to join the black market. A
p.000038: prohibition would indeed not prevent technologies developing when highly desired.
p.000038: If one on the other hand accepts that genetic modification is not necessarily a bad thing, the real but very difficult
p.000038: questions arise: those concerning alertness with respect to research into the modification of the human genome
p.000038: remain, particularly where this concerns distributive justice and equal access to these possibilities. One
p.000038: must have the courage to tackle these political and philosophical questions, without immediately rejecting the
p.000038: hypothesis that in the nearish future genetic recombination of a person can take place. One would better
p.000038: regulate freedom of research and development, and under strict, public and reviewable procedures, permit
p.000038: experiments that some wish to prohibit in a general, absolute and final manner.
p.000038:
p.000038: Opinion no 33 of 7 November 2005 - Final version
p.000039: 39
p.000039:
p.000039: Standpoint B
p.000039:
p.000039: Other members are of the opinion that the question must again be raised in a context of scientific and
p.000039: operational uncertainty.
p.000039: For these members the ethical discussions about somatic or germinal gene modification should concentrate on access to
p.000039: new, therapeutic therapies, the transparency of the research and the psychosocial manipulation that may be applicable.
p.000039: These members also raise the inescapable problem of the place of a genetic disability in our society, and raise the
p.000039: concrete question as to who has the right to define what “a normal person” is. Or as a consequence of
p.000039: this, how one can actually define “improvement” when talking about genetic modification.
p.000039: They ask themselves about the opportunity to steer medicine in the direction of
p.000039: enhancement/optimising practices for non-pathological disorders, and point out the possible dangers of the
p.000039: interference of certain parties in public health relating to individual genetic profiles.
p.000039: They are of the opinion that the sector of public health should once again leave the exclusive medical-scientific
p.000039: circuit, and make its entry in the political and social arena. It is indeed naive to deny the possibility of a
p.000039: compelling form of “democratic eugenics” when science forgets its ethical and social significance and the
p.000039: political hides behind scientific expertise that is becoming increasingly segmented.
p.000039: They point out the risk of disguised eugenics by putting all responsibility for ethical choices at individual level,
p.000039: either in a context of instrumentalising the new social standards, in a context of pressure due to social-cultural
p.000039: conformism, or even in name of new regulations in public health. The human community cannot be reduced to
p.000039: genetic individualism and expression of phenotype. It is also language, feeling, exchange of symbolic presentations and
p.000039: right to differ.
p.000039:
p.000039: As far as these members are concerned, a simultaneously strict, serene and evolutive, deontological and
p.000039: legal environment for the techniques of genetic modification must enable the impeding of potential derailments. As
p.000039: regards the genetic modification of humans, these members wish to send out a message of caution.
p.000039:
p.000039: Standpoint C
p.000039:
p.000039: Other members, without wishing to associate themselves with doctrinal visions in the field of germinal gene
p.000039: modification, advocate cautious and open progressiveness with respect to scientific and social progress, but do
p.000039: acknowledge the risks and advantages involved.
p.000039: They observe that scientific progress in the field of the structure and functions of biosystems reveals the
p.000039: ever-increasing complexity of the processes which connect the genotype and the phenotype.
p.000039: At present, the result is that the effects caused by genetic modification and their impact on the different phases of
p.000039: the development of the person cannot be predicted.
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Health / Cognitive Impairment
Searching for indicator cognitive:
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p.000020: declarations about ethics and “human dignity”, and the emphasis is particularly placed on the fact that our current
p.000020: knowledge is still insufficient to be able to take account of the potential effects of these experiments. Based on such
p.000020: an attitude one can now already start the discussion about the basic problems arising from the possible
p.000020: developments of this recombinant biotechnology.
p.000020: Indeed, thanks to improvement of recombinant DNA techniques (homologous recombination, artificial chromosomes,
p.000020: etc.), one day it may be possible to make transgenic people using the application of changes to the germ cells
p.000020: (or in embryonic cells at the initial stage of their development). One should then be particularly alert to
p.000020: the possible crossing of specific lines in the direction of achieving an artificial human person. It cannot
p.000020: be excluded that one will gradually increasingly be involved with the weakening of taboos based on the
p.000020: recombination of the DNA of human germ cells, with the lines being gradually shifted. As a result, the natural person
p.000020: would disappear unnoticed to be replaced by the genetically modified person. The possible non-therapeutic
p.000020: applications of recombinant DNA techniques could form an example of the progressive blurring of the limits
p.000020: between treating medicine (correction) and enhancement medicine. In the contemporary biomedical
p.000020: sciences, the technological and scientific knowledge at the basis of these new therapies will almost
p.000020: inevitably lead to techniques aimed at the optimisation of certain bodily functions or cognitive functions of an
p.000020: individual. The members of the American committee for bio-ethics — The President’s Council on
p.000020:
p.000020:
p.000020: 21 Sinsheimer, R., Troubled down for genetic engineering, New scientist, 68, 1975, p.55.
p.000020: 22 Here we refer to article 24 of the “Universal Declaration on the Human Genome and Human Rights”
p.000020: (General Conference of the United Nations, 9/12/1998) that “condemns practices that could detract from human dignity,
p.000020: such as activities on the germ cell line”; article 13 of the “Convention on human rights and biomedicine” of the
p.000020: Council of Europe also agreed with this standpoint.
p.000020:
p.000020: Opinion no 33 of 7 November 2005 - Final version
p.000021: 21
p.000021:
p.000021: Bioethics — found this theme sufficiently important to compile a remarkably documented report with the title Beyond
p.000021: therapy: Biotechnology and the Pursuit of Happiness23. In recent years a great deal of literature has been
p.000021: published on this subject, particularly in the Anglo-Saxon countries. It represents both extremes of the
p.000021: contemporary biopolitical spectrum. On the one hand there are the ‘bioconservatives’ who want to forbid all
p.000021: recombination of the human genome in the name of “human dignity”, out of respect for the “naturally given” or the
p.000021: sacred nature of human nature. Then there are the ‘bioprogressives’ who are open to the cautious change
p.000021: of the biological given that the person is, including his genome. 24 25 But even if people will shortly have the
p.000021: possibility of remodelling their own nature, one can ask oneself if this evolution is indeed desirable. The
...
p.000023: children, an important part of the population seems to be in favour of this: 22 % in Israel, 43 % in the United States,
p.000023: 63 % in India and 83 % in Thailand, and these figures would without doubt be even higher in Singapore, Korea or China.
p.000023: These countries have indeed invested enormously in their biotechnology. When a relatively inexpensive technology is
p.000023: made available in thousands of laboratories across the whole world, use will be made of it. Without doubt,
p.000023: the limitations and prohibitory rules originating from national authorities or international ‘biopolitical’
p.000023: organisations will not suffice in preventing the genetic modification of the person being applied. Stock
p.000023: assumes that it is preferable for these experiments to take place in all transparency at university laboratories or
p.000023: within research units of large private biotechnological companies, than in the semi-
p.000023: clandestineness of laboratories of religious sects.
p.000023: The report specified above from the President’s Council on Bioethics studies the ethical problems relating
p.000023: to enhancement medicine. Thanks to biotechnology we have access to a number of experimental techniques (that
p.000023: indeed have already been tested on animals and some of them also on people) that indicate that in the more or less near
p.000023: future, techniques will be developed that go further than ordinary therapy: selection or the genetic
p.000023: modification of embryos, the enhancement of certain cognitive capacities of children and adults (attention,
p.000023: memory), enabling athletes to perform better (mainly by activities on the genome of the muscle cells), the retarding of
p.000023: aging and the lengthening of the working life, changing of the mood. Even if the clinical application of certain
p.000023: technologies still appears uncertain or distant, the members of the American committee still believe that
p.000023: it is important to today study the potential effects of this performance-related biotechnology on medicine and
p.000023: the community33.
p.000023:
p.000023:
p.000023:
p.000023: 31 Watson, J.D., DNA, The secret of life, Knopf, New York, 2003.
p.000023: 32 Stock, Gregory, Redesigning humans, Houghton Mifflin Company, 2002. “We know that Homo sapiens is not the final
p.000023: word in primate evolution, but few have yet grasped that we are on the cusp of profound biological change, poised to
p.000023: transcend our current form and character on a journey of new imagination”. “At first glance, the very notion that we
p.000023: might become more than human seems preposterous. After all, we are still biologically identical in virtually
p.000023: every respect to our cave dwelling ancestors. But this lack of change is deceptive. Never before have
p.000023: we had the power to manipulate human genetics to alter our biology in meaningful, predictable ways.
p.000023: Bioethicists and scientists alike worry about the consequences of coming genetic technologies, but few have thought
p.000023: through the larger implications of the wave of new developments arriving in reproductive biology. “
p.000023: 33 “This report offers less a list of many things to think about than a picture of one big thing to think
p.000023: about: the dawning age of biotechnology and the greatly augmented power it is providing us, not only for gaining
p.000023: better health but also for improving our natural capacities and pursuing our own happiness. The ambitious project for
p.000023: the mastery of nature, the project first envisioned by Francis Bacon and René Descartes in the early
p.000023: seventeenth century, is finally yielding its promised abilities to relieve man’s estate. Though our society will, as a
p.000023: matter of public practice, be required to deal with each of these techniques and possibilities as they arrive,
p.000023: piecemeal and independently of one another, we should, as a matter of public understanding, try to see what they might
p.000023: all add up to, taken together. The Council’s experience of considering these disparate subjects under this one
p.000023: big idea — beyond therapy, for the Pursuit of Happiness - and our discovery of overlapping ethical
p.000023: implications would seem to vindicate the starting assumption that led us to undertake this project in the first
p.000023: place: biotechnology beyond therapy deserves to be examined not in fragments, but as a whole” .
p.000023:
p.000023: Opinion no 33 of 7 November 2005 - Final version
p.000024: 24
p.000024:
p.000024: The report embraces four subjects: selection and modification of embryos (chapter 2 with as title “Better
p.000024: children”), enhancement of athletic performance (chapter 3: “Superior performance”), prolonging
p.000024: life (chapter 4: “Ageless bodies”), modification of emotive life and cognitive functions (chapter 5: “Happy
p.000024: souls”).
p.000024: Even if the conclusions of this document are cautious and invite moderateness, the reading of the reports of the
p.000024: different information sessions (during these sessions the members of the committee could enter into
p.000024: dialogue with scientific experts) prior to the drawing up of the document leaves little doubt about the
p.000024: unavoidable nature of the development of this non- therapeutic medicine34“.
p.000024: We note that even if the majority of the scientists interviewed by the American committee are convinced of the
p.000024: inescapable nature of the application of such optimising/enhancement biotechnological action on the person, the
p.000024: conclusions of the members of the committee are more reserved.
p.000024: The moderateness of the members of the President’s Council on Bioethics contrasts strongly with the
p.000024: ‘technophile’ enthusiasm of the supporters of transhumanism, a well-structured movement that originated
p.000024: in the United States and that argues for the biophysical transformation of the person. The
p.000024: transhumanists have the idiosyncrasy that they – sometimes with a certain naivety and simplism -develop a virulent
p.000024: technophile enthusiasm. Their purpose is to exceed the current form of the person. They want to leave the
p.000024: contemporary medical paradigm behind them, that is based on a distinction between therapeutic and non-therapeutic
p.000024: changes to the human body. The most widely argued defence of transhumanism is probably found in the work of the
p.000024: Oxford philosopher Nick Bostrom35. The transhumanist objective is the use of biotechnology in a rational way to be
...
p.000027: various abnormalities or serious malformations can, according to some members of the Advisory Committee on Bioethics,
p.000027: be answered with the following counter-arguments. There is no reason whatsoever to a priori believe that the genome of
p.000027: people will never be able to be combined with a minimum of risk. The regulation of experiments on people
p.000027: must protect figures from the medical world from too great risks. That is, however, no reason to prohibit
p.000027: experiments which comply with long-established deontological rules that are also respected today on a wide
p.000027: scale.
p.000027:
p.000027: As regards the objection that the development of reproductive-genetic experiments would have consequences as regards
p.000027: social justice (only the rich would have access to diagnoses and to DNA recombination), according to some members
p.000027: of the Advisory Committee on Bioethics, protection against unjust availability is in place to prevent some
p.000027: exploiting a technique at the deprivation of others. They also believe that gene therapy will in due course be able to
p.000027: help reduce inequalities between individuals. They reject the bioconservative reasoning in which positive
p.000027: eugenistic practices or practices seen as positive eugenistic practices and their consequences are
p.000027: systematically ignored or brought into discredit. They also dispute the idea that individuals with improved
p.000027: physical or cognitive capacities would be morally inferior to “natural people”. The modified individuals
p.000027: could, on the contrary, demonstrate a wider awareness, a sharper sense of justice and superior moral
p.000027: virtues. In a future context of the application of genetic recombination of the human being, a child could ask
p.000027: itself one day why it does not have better genes - just as good genes as his friend whose parents did not
p.000027: refuse enhancement intervention (memory, intelligence, health) in the name of respect for human nature and
p.000027: the genetic lottery. Here the wish is to justify the enormous actual inequalities of the individuals at genetic level
p.000027: under the pretence that the “natural lottery” is the condition for equality in law of people. But even in highly
p.000027: developed societies actual genetic inequalities are
p.000027:
p.000027: 44 Certain arguments in this paragraph in favour of Standpoint A have been developed further:
p.000027: - by G. Hottois, « Quel rôle pour les philosophes dans les débats bioéthiques ? », Présentation et
p.000027: discussion de G. Habermas, L’avenir de la nature humaine. Vers un eugénisme libéral ?, article à paraître
p.000027: - and by J.-N. Missa, « L’homme recombiné : les enjeux éthiques et philosophiques de la modification du génome de
p.000027: l’être humain » in J.-Y. Goffi, Regard sur les technosciences, Paris, Vrin, 2006 – sous presse.
p.000027:
p.000027: Opinion no 33 of 7 November 2005 - Final version
p.000028: 28
p.000028:
p.000028: not or poorly compensated. If on the contrary we accept that genetic intervention is not by definition
...
p.000035: in the germ line could result in. Here two types of changes are considered. The first type concerns
p.000035: the “correction” of monogenic genetic disorders such as mucoviscidosis, myopathy of Duchenne, chorea of
p.000035: Huntington. The second type concerns genetic modification of germ line cells for the purposes of “optimisation”.
p.000035:
p.000035: As far as monogenic genetic illnesses are concerned, information infers that IVF in combination with preimplantation
p.000035: diagnostics (PGD) strongly reduces the risk of the birth of a child with such a hereditary illness in
p.000035: families where the risk is real. The need for gene therapy on cells of the germ line is as a result very
p.000035: limited. Despite the possibilities of PGD, however, a small number of children will still be born with
p.000035: a hereditary illness. A mutation can indeed occur during the production of the cells of the germ line or in the
p.000035: course of the very first development stages. The children should be able to be helped with the therapeutic genetic
p.000035: modification of somatic cells (see chapter III of this opinion).
p.000035:
p.000035: Enhancement genetic modification in the germ line on its part would, according to literature, be particularly aimed
p.000035: at sporting, intellectual, cognitive, emotional, behaviour-bound and psychological performance (access to
p.000035: happiness). These parameters do not only depend on the genome, but mainly on epigenetic processes that
p.000035: function in extremely complex and particularly plastic networks. This also concerns factors loaded with
p.000035: individual and social values, with a strong cultural component.
p.000035: Assumptions about controlling physical, spiritual or behavioural performance in humans by gene manipulation
p.000035: in the germ line are currently based on pure conjecture. There is for that matter another transgenerational aspect:
p.000035: genetic modification would be forced upon certain individuals of the offspring whose nuclear and mitochondrial
p.000035: environment and epigenetic cell environment is still unknown, and that would have unpredictable consequences on the
p.000035: resulting phenotype, without account being able to be taken of the requirements and environment with which the
p.000035: offspring will be confronted.
p.000035:
p.000035: As regards collective eugenics the benefit of enhancement genetic modification in the germ line is yet more strongly
p.000035: disputable, because the consequences of such modification being carried out on an individual scale would be diluted
p.000035: during the consecutive crossings 69.
p.000035:
p.000035: 69 If, for example, we take a random sample of the Belgian population of 500,000 inhabitants within which a couple
p.000035: has decided have a child who in the initial stage of his/her development (zygote) received a specific
...
p.000038: In principle the Advisory Committee on Bioethics suggests a global, attendant and open vision in this field, and we
p.000038: invite alertness to the technical sciences and their applications.
p.000038: The Committee observes that at the current stage of research the possibilities of recombination within the germinal
p.000038: genome are largely speculative, and offer no explicit and controlled clinical applications.
p.000038: Without in principle being against scientific research on the subject, the Committee has developed three
p.000038: visions on the question of genetic modification of the germ cell line. Here one makes a clear distinction
p.000038: particularly as regards feasibility based on current scientific knowledge, as regards priorities at
p.000038: conceptual and social level, and as regards opportunities in the management of medical research and clinical
p.000038: applications.
p.000038:
p.000038: Standpoint A
p.000038:
p.000038: Certain members of the Advisory Committee on Bioethics are against a prohibition of recombinant DNA
p.000038: techniques for the human germ cell line. They are of the opinion that when these techniques have been refined, it must
p.000038: be decided case by case about the acceptability of the recombinant DNA technology, depending on the context and
p.000038: the characteristics of the intended experiments. There is no reason at all to assume in advance that at some time
p.000038: the recombination of the germinal genome among humans will not be able to take place in circumstances
p.000038: with a minimum risk.
p.000038:
p.000038: These members dispute the idea that individuals provided with improved physical and cognitive capabilities can only be
p.000038: morally inferior to “natural people”. These modified people could on the contrary have a ”broader” conscience, and
p.000038: accordingly show greater sensitivity to rightfulness and higher moral values.
p.000038:
p.000038: They are also of the opinion that if a reliable and relatively simple genetic modification technique is
p.000038: available, the consequences of not taking action are just as great as taking any action.
p.000038:
p.000038: These members are of the opinion that gene therapy will be able to contribute to the reduction of certain inequalities
p.000038: between individuals. In the context of the future application of genetic recombination among people, a child may ask
p.000038: him/herself at a certain time why he does not have better genes such as a friend whose parents have not
p.000038: refused optimisation (memory, intelligence, health) in the name of respect for “human nature” and the genetic
p.000038: lottery. These members are certain that one may not underestimate the advantages a person could gain from such
p.000038: experiments.
p.000038:
p.000038: These members are aware of the fact that the phenotype of a person is the result of interaction between the genome
p.000038: and the internal environment (cellular and somatic) and the external environment (the physical, biological
p.000038: and social-cultural environment) during a person's development. They do emphasise, however, that in an
p.000038: equivalent and stable environment an important part of interindividual variation can be attributed to genetic
...
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p.000007: nuclear DNA. Medical observations appear to demonstrate a connection between certain neurological disorders and
p.000007: mitochondrial defects.
p.000007: One believes that the interactions between nuclear DNA and mitochondrial DNA should be analysed for the
p.000007: purposes of future therapeutic programmes.
p.000007:
p.000007: Finally, we will discuss assisted reproduction by cytoplasm transfer, even if the technique does not really
p.000007: fall under gene therapy.
p.000007: Experiments have taken place with oocyte heteroplasmy to treat the syndrome of the moderate development of the human
p.000007: embryo. The transport of cytoplasm from a normal donor egg cell to a deficient receiving egg cell led in an
p.000007: experimental series to 13 births out of 30 implanted embryos. Two of the 13 children had chromosomal defects, and
p.000007: one appeared at 18 months to have the disorder “Pervasive Development Disorder”.
p.000007: Oocyte heteroplasmy, that since 1997 has resulted in some thirty births, could therefore be suitable to
p.000007: stimulate the reproductive capacity of deficient egg cells. Children born using this technique, however, all show
p.000007: signs of mitochondrial heteroplasmy, and little is still known about the effects of this. Epigenetic
p.000007: modification could also occur.
p.000007: At present we do not yet know which the factors work positively or negatively with oocyte heteroplasmy.
p.000007: The Food and Drug Administration has prohibited the continuation of testing in this field.3
p.000007:
p.000007: I.4. Current legal framework in Belgium
p.000007: The term ‘eugenic purpose’ is mentioned in the law of 11 May 2003 concerning research into embryos in vitro. In
p.000007: article 5, 4° the law takes a clear standpoint against eugenics: “It is forbidden to carry out research or
p.000007: treatments with a eugenic purpose, this means aimed at the selection or the improvement of non-pathological genetic
p.000007: properties of the human species.”
p.000007:
p.000007: This provision must be considered in relation to article 3 of the same law in which, under the conditions which must be
p.000007: met before research into embryos may start, it must be determined that this research has a therapeutic purpose.
p.000007:
p.000007: From the preparatory activities (statements from the legislative proposal concerning research into embryos in vitro,
p.000007: submitted by Messrs Monfils and Mahoux - Doc. Senate 2000-2001-2- 695) it appeared clear that as regards
p.000007: intervention with the human genome the legislator wanted to make a distinction between germ track therapy
p.000007: aimed at improving the human species (and that must be prohibited) and therapeutic germ track therapy aimed at
p.000007: combating a number of diseases such as chorea of Huntington, mucoviscidosis, haemophilia and various
p.000007: neurodegenerative illnesses.
p.000007:
p.000007: In that same perspective article 5, 5° of the abovementioned law does not allow research or treatments to
p.000007: be carried out for sex selection, with the exception of selection to prevent gender-bound diseases.
p.000007:
p.000007: Article 13 of the Convention of the Council of Europe on human rights and Biomedicine forbids
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p.000003: - RNA: ribonucleic acid. Molecular chains consisting of a sugar (ribose), the nitrogen bases (adenine,
p.000003: uracil, cytosine, guanine) and phosphorus. RNA has various functions in cells (see the different kinds of RNA below).
p.000003:
p.000003: - Precursor messenger RNA (pre-mRNA): RNA that results from the transcription of a coding DNA sequence.
p.000003: - Messenger RNA (mRNA): RNA that results from the splicing of a pmRNA. mRNA is used by the ribosomes
p.000003: as translation model with the synthesis of proteins.
p.000003: - Antisense RNA: RNA of which the sequences are complementary to the messenger RNA sequences.
p.000003: - Interfering RNA: small RNA coded by the genomic DNA with a regulatory function by attaching to
p.000003: complementary mRNA (inhibiting its translation) or to DNA sequences (of which the structure and the
p.000003: possibility of transcription changes).
p.000003: - Micro RNA: small RNA coded by the genomic DNA that after various modifications attaches to
p.000003: the mRNA (inhibiting its translation) and to the genomic DNA (inhibiting transcription). Some micro RNA finds
p.000003: its origin in the introns resulting from the splicing of pmRNA to mRNA.
p.000003: - Editing: mechanism where uracil molecules in messenger RNA are introduced with the
p.000003:
p.000003: Opinion no 33 of 7 November 2005 - Final version
p.000004: 4
p.000004:
p.000004: modification of its message.
p.000004: - Enzyme: molecule with catalysing property, usually a protein or ribonucleic acid.
p.000004: - Epigenesis - Epigenetic: describes the differentiated expression of the genes under the influence of factors
p.000004: within or outside the organism.
p.000004: - Splicing: process where precursor messenger RNA is transformed to messenger RNA by cutting away certain areas.
p.000004: - Eugenics: see item II.2.
p.000004: - Gene: DNA sequence (RNA sequence with certain viruses) that carries molecular information determined
p.000004: by the nucleotide sequences. Falls under the understanding of ‘hereditary factor’. The gene functions as a
p.000004: matrix model with the synthesis of premessenger RNA.
p.000004: - Genome: complete set of genes of an organism, an individual or a species. A distinction is made between the
p.000004: nuclear genome (DNA of the nucleus or cell nucleus) and the mitochondrial genome (DNA of the mitochondria).
p.000004: - Genotype - phenotype: the genotype forms the whole of genetic characteristics of an individual ensuing from
p.000004: the composition of its DNA (RNA with some viruses). The phenotype is the whole of observable
p.000004: characteristics (anatomical, morphological, physiological and biochemical characteristics) of an individual.
p.000004: - Heteroplasmy: hybrid cytoplasm that results from the fusion of the cytoplasm of two different organisms
p.000004: - Germ line: whole of the reproductive cells of an individual that ensure the transfer of the hereditary
p.000004: properties of that individual to its offspring.
p.000004: - Locus: place on a chromosome according to a specific gene.
p.000004: - Metabolom: system of all products of biochemical reactions taking place within an organism.
p.000004: - Mitochondrion: organelle of the cytoplasm specialised in energy conversion functions and that contains a DNA
p.000004: that is a carrier of genetic information.
...
p.000008: control their own evolution for a better future, because artificial selection apparently worked in both animals and
p.000008: plants.
p.000008:
p.000008: We can ask ourselves how a number of well-intentioned researchers and politicians came to consider the
p.000008: eugenistic movement as a contribution to public welfare, not only from the standpoint of the individual, but
p.000008: also as a whole of measures that must be encouraged by the State. To explain their attitude we must take
p.000008: account of the fact that the understanding of Public Health at the end of the 19th century had achieved an
p.000008: incontrovertible status. Facilities arrived such as collective provisions for waste disposal and sewer water,
p.000008: a drinking water supply, the halting of epidemics by vaccination and even compelling measures such as
p.000008: quarantines. This all created a mentality positive to collective activities that suggested a better future for society
p.000008: and even for what one called “the human race”. A double distinction must be made here: firstly a distinction between
p.000008: wthat science seemed to promise and the absence of a sound basis for these ‘scientific’ conceptions, and secondly a
p.000008: distinction between the perfectly worthy ethical ambition of those who wanted to improve the destiny of future
p.000008: humanity, and
p.000008:
p.000008:
p.000008: Opinion no 33 of 7 November 2005 - Final version
p.000009: 9
p.000009:
p.000009: the inclination of others to favour certain population classes or races. The growing influence of the second term of
p.000009: that double distinction explains the tragic lapses subsequently attributed to the eugenistic movement as a whole.
p.000009:
p.000009: Although Galton was the first to develop this vision, Darwin himself was not against it. In “The Descent of Man” he
p.000009: says: “The two sexes should refrain from marriage if they are in any marked degree inferior in body or mind. But such
p.000009: hopes will never be even partially realised until the laws of inheritance are thoroughly known.”4. One may remark that
p.000009: Darwin supported individual choice and refrained from promoting actual measures as long as the scientific
p.000009: knowledge required for this was absent. Very many people thought to have been inspired by him appeared not to act with
p.000009: such caution.
p.000009:
p.000009: II.2. Definitions
p.000009: Since the origin of the concept of eugenics there has always been much confusion, and all sorts of terms have been
p.000009: thrown together, particularly as regards terminology. As a result, opinions and standpoints concerning this
p.000009: concept have been falsified. The Committee therefore proposes introducing the following distinctions.
p.000009:
p.000009: It is true that the term eugenics originally referred to a general ‘improvement’ of the human species (the human
p.000009: ‘race’) with the purpose of spreading ‘desirable’ genetic characteristics by suppressing the number of ‘undesired’
p.000009: properties of the species. Since the Second World War all measures with the purpose of the ‘improvement’ of a
p.000009: whole population or the human species have generally been put to question, or even regarded as unacceptable. On the
p.000009: other hand, developments in human genetics have given individuals and families the resources to avoid the
...
p.000012: support in very many countries: Great Britain (1967), United States (1973), France (1975), the Netherlands (1981),
p.000012: Belgium (1990), etc.
p.000012:
p.000012: II.3.3. Ethical considerations
p.000012:
p.000012: II.3.3.1.
p.000012: Certain groups in society are completely against any form of eugenics, collective and private.
p.000012:
p.000012: - The essential argument is based on the consideration of the embryo to be a human person from fertilisation
p.000012: (standpoint mentioned by the Committee in opinion no. 18 of 16 September 2002, chapter IV, item 4.2.1.) or that
p.000012: it has sufficient personality characteristics so the termination of its further development should be completely
p.000012: forbidden. This implies that VPT is not acceptable, even in the case of illness or serious deformations.
p.000012: These people deem PGD unacceptable because this implies that selection has occurred, and that this has the
p.000012: inevitable effect of certain embryos being eliminated.
p.000012: - They also put forward the idea that the acceptance of private eugenics deviously puts pressure on women who refuse
p.000012: these techniques. This would lead to imperative collective eugenics that, due to economic or cultural pressure, would
p.000012: be similar to state eugenics.
p.000012: - Finally, they suggest that the importance attached to the avoidance of the birth of a child with an abnormality
p.000012: would have a negative influence on our attitude to disabled children already born, and the care they
p.000012: receive.13
p.000012:
p.000012: Some members have the following remarks.
p.000012: The first argument is based on an extreme standpoint about the status of the embryo and the foetus.
p.000012: The second argument refers to an unavoidable phenomenon. From the time of a value being accepted by the majority of the
p.000012: people, one perceives a tendency to follow the movement. The evaluation of this process depends on the value one
p.000012: attaches to one of the standpoints taken. For a number of years, some Dutch, strongly protestants villages did not
p.000012: accept vaccinations against poliomyelitis. After having seen the baleful consequences of their non-acceptance with
p.000012: their own eyes they moved behind the majority standpoint. It cannot be ruled out that a similar movement may form
p.000012: with respect to VPT, for example with trisomy 21. This involves an evolution in social attitudes, an
p.000012: evolution not seen as negative by everyone.
p.000012: The third argument can be rebutted by remembering the distinction between a human person (born living and viable) and
p.000012: an embryo, and the imperative obligation to guarantee the welfare of all persons and more specifically the least
p.000012: privileged.
p.000012:
p.000012: II.3.3.2.
p.000012: Among the population and specialists in genetics and medically assisted reproduction, there exists a certain
...
p.000013: very large number of embryos to be able to make a selection. From the concern to arrive at a reasonable decision,
p.000013: however, is it important that the democratic debate about this problem is deepened, so parents do not have to make such
p.000013: a fundamental decision without ethical support.
p.000013:
p.000013: II.3.3.5.
p.000013: A difficult problem in another area is due to physical or psychological characteristics that form a continuum, where
p.000013: certain serious forms occur that can be regarded as pathological, while the majority are considered more or less
p.000013: “normal” (for example different kinds of intelligence, characters, behaviour or affectivity of which serious
p.000013: forms are called neuroses or psychoses).
p.000013: If one establishes that the interaction of a number of genes corresponds to a more or less greater
p.000013: predisposition to different phenotypes, it is obvious that the “pathological/not pathological”
p.000013: dichotomy is difficult to maintain. For as long as it concerns a clearly described, deficient gene we remain in
p.000013: the medical domain and the actions are then private, corrective eugenics. On the other hand, from a certain
p.000013: point in the continuum between “damaged” and “optimal” gene we no longer have “correction” but “enhancement”. But we
p.000013: must honestly admit that it is very difficult or even impossible to reach a consensus about this dividing point. It
p.000013: then also follows that the line between therapeutic genetic modification and enhancement genetic modification is
p.000013: blurred. Consequently the following alternative arises: either a prohibition of all activities on genes that have an
p.000013: influence on characteristics, or admitting that sooner or later the Rubicon forming the line between therapeutic and
p.000013: optimising/enhancement activities will be crossed.
p.000013:
p.000013:
p.000013:
p.000013:
p.000013: Opinion no 33 of 7 November 2005 - Final version
p.000014: 14
p.000014:
p.000014: II.3.3.6.
p.000014: When multifactor genetic characteristics are concerned, it seems hardly likely that one can achieve
p.000014: “enhancement” by negative eugenics. In this case it is indeed so that one must possess a too large number of embryos
p.000014: for the selection of embryos with the beneficial genes.
p.000014:
p.000014: II.3.3.7.
p.000014: These technical problems add to the far-reaching changes in mentality as regards ethical questions, and
p.000014: this ensures that even suggestions of a negative state eugenics programme would now no longer be accepted in
p.000014: democratic societies (See the definitions: item II, 2).
p.000014: One can, however, defend the desirability that the number of hereditary diseases or
p.000014: malformations within the population is kept as low as possible. But it is unthinkable that a person can
p.000014: force a person to a VPT or even a PGD.
p.000014: However, according to certain members of the Committee, responsible ethics do not rule out promoting the necessary
p.000014: caution and respect, the recognition of the good basis of a eugenetic attitude if this concerns cases regarded as
p.000014: serious by everyone. Such a change in mentality can lead to non-compelling collective negative eugenics.
p.000014: As regards the “enhancement” of characteristics, this is only possible if positive eugenics i.e. the application of
...
p.000017: 17
p.000017:
p.000017: introduced gene or an adjacent gene as a consequence 17..
p.000017: The ideal option would consist of one preventing this risk by substituting the deficient gene by the healthy gene that
p.000017: one introduces by “genetic cibling”, or using “homologous recombination”. Up until the present one has still not been
p.000017: able to correctly introduce a transgene in the genome of a person, but this is being widely experimented.
p.000017:
p.000017: 5. A scientific key question for the success of gene therapies concerns the mechanism to supply the gene in the
p.000017: sick cell, in other words the vector. The most effective vectors are viruses, but they have their disadvantages as we
p.000017: have mentioned earlier. Research is taking place into other transport mechanisms (for example liposomes).
p.000017:
p.000017:
p.000017: To sum up
p.000017: After 30 years of research and 14 years of clinical applications the successes of somatic gene therapy still remains
p.000017: limited, but expectations remain high.
p.000017: We are still not far enough to properly assess somatic gene therapies. These techniques are still applied on a low
p.000017: scale, and their future development requires a rigorous scientific and clinical approach. To this end, just as in all
p.000017: medical research, rules of good practice must be observed to ensure the safety and effectiveness of the clinical
p.000017: applications. In particular, the relationship between benefit and risk to the patient must be meticulously explored,
p.000017: and great caution must be exercised in this domain that intervenes in the core of life itself, with an influence on
p.000017: the identity of the person him/herself.
p.000017: Analysis of the clinical trials of A. Fischer at the Necker hospital do, however, seem to demonstrate
p.000017: that the analysis of benefit and risk to the patient amply warrant the continuation of work relating to somatic gene
p.000017: therapies.
p.000017: It is indeed because this analysis remains positive that the Agence française de sécurité sanitaire des
p.000017: produits de santé (AFSSAPS) (that had suspended all abovementioned testing in October 2002 because of the side-effects)
p.000017: has allowed the team of Dr Alain Fischer and Marina Cabazzana-Calvo to resume the studies after modifications were
p.000017: applied to the study protocol as regards the administered doses and age of the treated patients 18. On the
p.000017: request of the team of Dr. A. Fischer the new attempt was suspended because a third complication arose; the team
p.000017: wishes to change the vector prior to starting testing again19.
p.000017:
p.000017: III.3. Ethical discussion about somatic gene modification
p.000017: III.3.1. General considerations
p.000017:
p.000017: Somatic gene therapy is situated in the same area as the issue of experiments on people, implying that
p.000017: it must comply with the same ethical expectations, attitudes and requirements.
p.000017: In its opinion no. 13 of 9 July 2001 concerning experiments on people, the Advisory Committee on Bioethics evaluated
p.000017: the then current normative framework, in particular the conditions of “Good Clinical Practice”, the
p.000017: deontological rules supporting them, as well as the ethical operations on which they must be based.
...
p.000018: continue her/his work according to rules of context and caution inherent to medical scientific research. He must
p.000018: supply objective and transparent information about the results achieved, and inform the public about both
p.000018: the probable risk and the proven risk. These understandings must be clearly distinguished because of the danger
p.000018: that this will lead to the blocking of any research and technological progress.
p.000018:
p.000018: III.3.2. Specific ethical problems
p.000018:
p.000018: Apart from formal requirements particular to all experiments on humans, one can question wether somatic
p.000018: gene therapy raises specific ethical problems.
p.000018:
p.000018: III.3.2.1.
p.000018: As regards actual gene therapy (i.e. therapeutic, so corrective) this does not appear to be the case. When we indeed
p.000018: assume that this concerns a clinical practice aimed at the curing or correcting of a poorly working organ
p.000018: or of certain aspects of an organ in a specific individual, one can compare this with an organ transplant (for example
p.000018: the correcting of a bone marrow gene versus the transplantation of bone marrow). The difference entails the lack of the
p.000018: problem for the donor.
p.000018:
p.000018: III.3.2.2.
p.000018: One has encountered reticence, however, for the following reasons.
p.000018: To certain authors this therapy is dangerous because the line with germinal gene therapy appears blurred.
p.000018: One indeed considers the possibility that a gene introduced by this technique can be communicated to the germ cells,
p.000018: that in turn would have an influence on the whole germ cell line. But as we have already stated, specialists
p.000018: consider this hypothesis extremely improbable.
p.000018: An objection is also raised that one encounters with very many new techniques: the slippery slope
p.000018: argument. The development of this technique of transferring genes could lead to more easily proceeding with the
p.000018: germ track technique that is considered unacceptable. One may respond to this assertion by stating that
p.000018: the use of a technique that can alleviate human suffering should not be prohibited because of hypothetical
p.000018: dangers that one could keep under control, should they actually arise.
p.000018:
p.000018: III.3.2.3.
p.000018: When in the near future one is able to manage this technique on a large scale, one will in any case not be able to
p.000018: evade the question of establishing the area of application.
p.000018: Even with a sympathetic attitude with respect to use of the technique for generally accepted diseases in
p.000018: medicine - therapy aimed at the correcting of defective genes - it will not be simply accepted that this technique
p.000018: may be used for the enhancement of the function of specific organs.
p.000018: For example, we will assume that one has developed a somatic gene therapy that changes the composition of the blood
p.000018: (so one can cure some forms of anaemia). The idea would quickly materialise that one will start using this
p.000018: technique to change the composition of the blood of
p.000018:
p.000018:
p.000018: Opinion no 33 of 7 November 2005 - Final version
p.000019: 19
p.000019:
p.000019: certain athletes. Once the new gene had been introduced we would have a new form of “natural” doping.
p.000019:
...
p.000029: conservative or technophobic morality that a priori forbids any change to the human genome. They see it as
p.000029: important to resist any form of paternalism that wants to enforce a general prohibition of recombination
p.000029: techniques which could have a positive impact on the life of people. They therefore argue for the regulated acceptance
p.000029: of genetic engineering, applied to people, regulation that opens the door to new possibilities of technological DNA
p.000029: sciences, to at the same time cause as little suffering as possible and create maximum opportunities for
p.000029: development.
p.000029: The members therefore agree with the development, in the course of evolution, of human capacity to
p.000029: technically intervene on its given biology.
p.000029:
p.000029: IV. 2.2. Standpoint B
p.000029:
p.000029: Other members of the committee do not agree with the idea that the gene pool of the human species is unchangeable;
p.000029: they consequently refute the idea that the human genome is sacrosanct. In the prohibition of any intervention
p.000029: on the genome they see the hard core of a contorted archaic reaction of a religious nature.
p.000029: It is true that the gene pool in the human species changes under the pressure of circumstances. The distinction between
p.000029: genotype (formed by what is recorded in the DNA) and phenotype 46 - the physical and health situation of a living
p.000029: being at a given time in his existence, that is the result of the interaction of the genome and external factors - is
p.000029: however useful in considering the relative importance of genes with regard to the influence of the environment.
p.000029: These members suggest a pragmatic reflection on the – at the same time healing and baleful – consequences of the fact
p.000029: that “life” due to its genotypical aspect (i.e. modification of the human genome) is today a subject of modern
p.000029: technological science.
p.000029: The members do, however, want to immediately refute the biocatastrophic visions of the risk of the prospect of the
p.000029: total changing of the gene pool of a whole population. They would simply recall that to reduce the frequency of the
p.000029: so-called poor genes from one per hundred to one per thousand, twenty-two generations would in reality have to
p.000029: be subjected to more or less imperative sterilisation measures.47 Furthermore, it is today an absolute
p.000029: fantasy to want to “improve” the human species using a selection and sterilisation policy: to impose such a policy,
p.000029: imperative measures would inevitably be required that would come up against various “obstacles” in the path
p.000029: of the principle of a democratic society. The choice of whether or not to impose such measures would therefore in
p.000029: essence not be a technical-scientific choice but a political one. As far as germinal gene manipulations are
p.000029: concerned 48 , it is hardly probably that the gene pool of a population would change more efficiently
p.000029: (faster), unless this would be industrially and directed imperiously organised in a market economy that would feed
p.000029: the new “requirement” of improvement, after it has been elaborated from scratch.
p.000029:
...
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p.000004: and of post-translational modification
p.000004: - Regulation: process that modulates the expression of a DNA sequence as a cascade. Some of the
p.000004: sequences, the so-called coding sequences, are transcribed in pre- messenger-RNA, that after splicing become
p.000004: messenger-RNA and that play a part in the synthesis of the proteins. Other sequences are transcribed in small
p.000004: regulating RNA (interfering RNA and Micro RNA).
p.000004: - Soma: all non-germinal cells that form the tissue and organs of an individual.
p.000004: - Gene therapy: introduction into a genome with a defective gene of a normal copy of that gene to correct the
p.000004: consequences of the defect.
p.000004: - Transcription: synthesis of RNA sequences on the basis of a DNA model.
p.000004: - Transcriptom: system of all RNA molecules that result from the transcription of the DNA of an
p.000004: organism.
p.000004: - Transgen: gene of an organism that is transferred to the genome of another organism
p.000004: - Transgenesis: process of transferring the gene of an organism into the genome of another organism
p.000004: - Translation: synthesis of protein-creating amino acid polymers from an mRNA model that is used by the
p.000004: ribosomes as example.
p.000004:
p.000004:
p.000004:
p.000004: Opinion no 33 of 7 November 2005 - Final version
p.000005: 5
p.000005:
p.000005: I. 2. Gene – genotype - genetics1
p.000005: I.2.1. Traditional conceptual genetics (1865-1945)
p.000005:
p.000005: We can have this phase symbolically start with the work of Mendel (1865) on the hereditariness of
p.000005: characteristics. Weismann (1892) distinguishes the hereditary substance he calls the germ line (“germen” in
p.000005: german), and the non-hereditary substance he called soma.
p.000005: In 1901 the botanist Correns identified the germ plasma that contains all hereditary elements. Johanssen
p.000005: described the elements as genes, which all together form the genotype
p.000005: . The characteristics resulting from the expression of the genotype determine the
p.000005: phenotype.
p.000005: In 1906 Bateson announced to the scientific world that he was working on hereditariness, or
p.000005: genetics.
p.000005: The nature of hereditary entities remained unclear for a long time. Morgan, who won the Nobel Prize in 1933,
p.000005: declared that it was unimportant as to whether the gene was considered a hypothetical unit or a
p.000005: material particle. What counted for him was that a modification in a gene changes a property of the phenotype.
p.000005: Müller (1927) observed genetic modification (mutations) induced by X-rays that passed from generation to generation, of
p.000005: which the phenotypical expression depended on the mutation on the chromosomes.
p.000005: Kühn (1941) showed that a characteristic (red eye of an insect) is induced by an enzyme that catalyses a cascade of
p.000005: metabolic reactions resulting in the phenotype. That is the first step towards the concept ‘a gene - an enzyme’
p.000005: (protein).
p.000005:
p.000005: I.2.2. Molecular or genomic genetics (1944 -2000)
p.000005:
p.000005: In 1944 Avery and his colleagues observed that the transfer of DNA from a virulent bacterium to a
p.000005: non-virulent bacterium made the latter virulent. This discovery passed generally unnoticed.
p.000005: In 1953 Watson and Crick clarified the DNA structure and the mechanism of DNA replication.
...
p.000006: As regards the application of the technique on people, in principle two kinds of gene therapy can be considered:
p.000006: somatic gene therapy, where the genome of the cells of the soma is changed, and germinal gene therapy
p.000006: that concerns the germ line. The second type of gene therapy will therefore also have consequences on the
p.000006: offspring of the treated individual.
p.000006: A distinction can be made between gene therapies and enhancement gene modification. The latter has no therapeutic
p.000006: purpose, but is aimed at modifying the genome to increase individual performance at phenotypical level.
p.000006:
p.000006: In the simplest case gene therapy consists of from a therapeutic perspective the introducing in a genome of a DNA
p.000006: fragment that codes for a protein, being the compensation of a congenital deficiency or making a deficient gene
p.000006: non-active.
p.000006: Transgenesis can take place whereby DNA that produces antisense-RNA (anti-messenger-RNA)
p.000006:
p.000006: 2 Busciglio, J., et. al. (2002) “Altered metabolism of the amyloid beta precursor protein is associated with
p.000006: mitochondrial dysfunction in Down’s syndrome”, Neuron 33, P. 677-688.
p.000006:
p.000006: Opinion no 33 of 7 November 2005 - Final version
p.000007: 7
p.000007:
p.000007: or interfering RNA is inserted to inhibit the expression of a gene, and in so doing impede the production of its
p.000007: protein product.
p.000007: To achieve the therapeutic transgenesis a ‘normal’ gene is isolated that is connected to a vector, so a
p.000007: recombinant DNA is formed, which the whole must be correctly inserted in the host genome to produce the sought
p.000007: substance.
p.000007:
p.000007: Another form of gene therapy concerns mitochondrial DNA.
p.000007: Each mitochondrion contains a DNA molecule that contains approximately 40 genes in constant dialogue with the
p.000007: nuclear DNA. Medical observations appear to demonstrate a connection between certain neurological disorders and
p.000007: mitochondrial defects.
p.000007: One believes that the interactions between nuclear DNA and mitochondrial DNA should be analysed for the
p.000007: purposes of future therapeutic programmes.
p.000007:
p.000007: Finally, we will discuss assisted reproduction by cytoplasm transfer, even if the technique does not really
p.000007: fall under gene therapy.
p.000007: Experiments have taken place with oocyte heteroplasmy to treat the syndrome of the moderate development of the human
p.000007: embryo. The transport of cytoplasm from a normal donor egg cell to a deficient receiving egg cell led in an
p.000007: experimental series to 13 births out of 30 implanted embryos. Two of the 13 children had chromosomal defects, and
p.000007: one appeared at 18 months to have the disorder “Pervasive Development Disorder”.
p.000007: Oocyte heteroplasmy, that since 1997 has resulted in some thirty births, could therefore be suitable to
p.000007: stimulate the reproductive capacity of deficient egg cells. Children born using this technique, however, all show
p.000007: signs of mitochondrial heteroplasmy, and little is still known about the effects of this. Epigenetic
p.000007: modification could also occur.
...
p.000015: her suffering. The girl suffered from a serious immunodeficiency as a result of a genetic abnormality. This
p.000015: was a deficiency of adenosine deaminase (ADA), so the person affected had practically no resistance to
p.000015: the pathogens to which she was exposed 14.
p.000015: - In January 1991, with the permission of the Recombinant DNA Advisory Committee of the NIH, the team of S. Rosenberg
p.000015: (Bethesda, VSA) used gene therapy to cure two patients who were suffering from a malignant melanoma in a
p.000015: terminal stage 15.
p.000015: The test had no positive result, but cancer became a preferential target for gene therapy.
p.000015:
p.000015: A first therapeutic success was recorded in 1993 in the US with a woman with serious family hypercholesterolaemia.
p.000015:
p.000015: In the course of the nineties numerous somatic gene therapy tests were conducted worldwide (in an experimental way) but
p.000015: the really prominent successes were recorded by the French team of Alain Fischer and Marina Cavazzana-Calvo. 16, from
p.000015: 1999. For the first time in the world the team successfully treated “bébés-bulle” (babies growing up in a
p.000015: sterile space) who were
p.000015:
p.000015:
p.000015: 14 The therapy of Anderson and Blaese consisted mainly in the changing of the genetic instructions of the T
p.000015: lymphocytes of the patient, to then restore normal production of the ADA enzyme and in turn have the immune functions
p.000015: again work satisfactorily. A clinical improvement was established as a result of this treatment.
p.000015: 15 In this therapeutic test protocol the gene that codes for the “tumour necrosis factor” – a substance with a
p.000015: powerful antitumoral effect – was introduced in a special class of lymphocytes, the “Tumour infiltrating lymphocytes”
p.000015: (TIL).
p.000015: 16 Fischer, A., Hacein-Bey, S and Cavazzana-Calvo, M 2002, “Gene therapy of severe combined
p.000015: immunodeficiencies”, Nat. Rev. Immunol. 2,615-21.
p.000015: Hacein-Bey-Abina, S., Le Deist, F., Carlier, F., Bouneaud, C., Hue, C., De Villartay, J.P., Thrasier,
p.000015: A.J., Wulfraat, N., Sorensen, R., Dupuis-Girod, S., Fischer A. and Cavazzana-Calvo, M. 2002, “Sustained
p.000015: correction of X-linked severe combined immunodeficiency by ex vivo gene therapy”, N. Engl. J. Med. 346, 1185-93.
p.000015:
p.000015: Opinion no 33 of 7 November 2005 - Final version
p.000016: 16
p.000016:
p.000016: suffering from a genetic immunodeficiency (serious combined immunodeficiency, abbreviation SCID), characterised by a
p.000016: complete absence of the development of T and B lymphocytes. Eight of the ten patients treated by A. Fischer between
p.000016: 1999 and 2002 are now leading a normal life.
p.000016:
p.000016: In Great Britain 4 identical cases were fully successfully treated. It is obviously too early to predict
p.000016: the long term effects of these treatments. But we may also not forget that apart from gene therapy the only
p.000016: possible treatment consists of a bone marrow transplant. And that is statistically impossible in 25 % of cases,
p.000016: meaning certain death for the sufferers.
p.000016:
p.000016: III.2. Therapeutic indications and difficulties
p.000016: At present numerous protocols relating to somatic gene therapy are being tested in the United States, Europe and Asia
p.000016: to treat different diseases.
...
Health / Mentally Disabled
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p.000009:
p.000009: Although Galton was the first to develop this vision, Darwin himself was not against it. In “The Descent of Man” he
p.000009: says: “The two sexes should refrain from marriage if they are in any marked degree inferior in body or mind. But such
p.000009: hopes will never be even partially realised until the laws of inheritance are thoroughly known.”4. One may remark that
p.000009: Darwin supported individual choice and refrained from promoting actual measures as long as the scientific
p.000009: knowledge required for this was absent. Very many people thought to have been inspired by him appeared not to act with
p.000009: such caution.
p.000009:
p.000009: II.2. Definitions
p.000009: Since the origin of the concept of eugenics there has always been much confusion, and all sorts of terms have been
p.000009: thrown together, particularly as regards terminology. As a result, opinions and standpoints concerning this
p.000009: concept have been falsified. The Committee therefore proposes introducing the following distinctions.
p.000009:
p.000009: It is true that the term eugenics originally referred to a general ‘improvement’ of the human species (the human
p.000009: ‘race’) with the purpose of spreading ‘desirable’ genetic characteristics by suppressing the number of ‘undesired’
p.000009: properties of the species. Since the Second World War all measures with the purpose of the ‘improvement’ of a
p.000009: whole population or the human species have generally been put to question, or even regarded as unacceptable. On the
p.000009: other hand, developments in human genetics have given individuals and families the resources to avoid the
p.000009: birth of genetically disabled individuals, to accordingly improve individual and family welfare. To help clarify the
p.000009: discussion it seems sensible to continue using the term ‘eugenics’ subject to the introduction of appropriate
p.000009: distinctions.
p.000009:
p.000009: Individual eugenics or micro-eugenics, private eugenics and even liberal eugenics.
p.000009: This involves a selection phenomenon at an individual level. We would mention the decision of a couple
p.000009: regarding the conception, implantation or birth of a child who is a carrier of a genetic disorder that leads to a
p.000009: physical or mental disability. Another example is research (currently with few promising results) into sperm
p.000009: or embryos of “superior quality” (for example as regards IQ) or possible future attempts to create
p.000009: genetically “optimised/enhanced” embryos. One can also add to this: the example of the informing of future spouses
p.000009: about being the carrier of the same harmful, recessive gene, to allow them to avoid an offspring affected by
p.000009: thalassemia, or pre-implantation or prenatal diagnosis during a pregnancy with a such a couple. Finally, there
p.000009: is the prenatal diagnosis of a pregnant woman from a certain age.
p.000009:
p.000009: Social eugenics or macro-eugenics or even collective eugenics.
p.000009: This is aimed at the introduction of measures with the purpose or consequence of reducing the number of
...
p.000012: Belgium (1990), etc.
p.000012:
p.000012: II.3.3. Ethical considerations
p.000012:
p.000012: II.3.3.1.
p.000012: Certain groups in society are completely against any form of eugenics, collective and private.
p.000012:
p.000012: - The essential argument is based on the consideration of the embryo to be a human person from fertilisation
p.000012: (standpoint mentioned by the Committee in opinion no. 18 of 16 September 2002, chapter IV, item 4.2.1.) or that
p.000012: it has sufficient personality characteristics so the termination of its further development should be completely
p.000012: forbidden. This implies that VPT is not acceptable, even in the case of illness or serious deformations.
p.000012: These people deem PGD unacceptable because this implies that selection has occurred, and that this has the
p.000012: inevitable effect of certain embryos being eliminated.
p.000012: - They also put forward the idea that the acceptance of private eugenics deviously puts pressure on women who refuse
p.000012: these techniques. This would lead to imperative collective eugenics that, due to economic or cultural pressure, would
p.000012: be similar to state eugenics.
p.000012: - Finally, they suggest that the importance attached to the avoidance of the birth of a child with an abnormality
p.000012: would have a negative influence on our attitude to disabled children already born, and the care they
p.000012: receive.13
p.000012:
p.000012: Some members have the following remarks.
p.000012: The first argument is based on an extreme standpoint about the status of the embryo and the foetus.
p.000012: The second argument refers to an unavoidable phenomenon. From the time of a value being accepted by the majority of the
p.000012: people, one perceives a tendency to follow the movement. The evaluation of this process depends on the value one
p.000012: attaches to one of the standpoints taken. For a number of years, some Dutch, strongly protestants villages did not
p.000012: accept vaccinations against poliomyelitis. After having seen the baleful consequences of their non-acceptance with
p.000012: their own eyes they moved behind the majority standpoint. It cannot be ruled out that a similar movement may form
p.000012: with respect to VPT, for example with trisomy 21. This involves an evolution in social attitudes, an
p.000012: evolution not seen as negative by everyone.
p.000012: The third argument can be rebutted by remembering the distinction between a human person (born living and viable) and
p.000012: an embryo, and the imperative obligation to guarantee the welfare of all persons and more specifically the least
p.000012: privileged.
p.000012:
p.000012: II.3.3.2.
p.000012: Among the population and specialists in genetics and medically assisted reproduction, there exists a certain
p.000012: consensus about the fact that one considers PD (followed by VPT) and PGD ethically acceptable in “severe”
p.000012: or “serious” cases.
p.000012:
...
p.000012: Senate of President Jean-Marie Le Mené: ‘Y a-t-il un eugénisme “clean”?’ on the site:
p.000012: www.généthique.org/doss_theme/dossiers/eugénisme/eugénisme_jmlm.htm
p.000012:
p.000012: Opinion no 33 of 7 November 2005 - Final version
p.000013: 13
p.000013:
p.000013: II.3.3.3.
p.000013: Agreement has not, however, been reached about the ethical question of what a “severe” or “serious”
p.000013: disorder or deformity is. Professional associations involving clinical geneticists, reproductive technology and
p.000013: bio-ethical advisers have still not yet agreed about the drawing up of a list of disorders which are accepted as
p.000013: serious enough to justify a PGD or PD. There are indeed more than 5,000 monogenetic disorders, and nearly all of these
p.000013: disorders show signs of variable severity and clinical evolution (see H. Galjaard, a.c.).
p.000013:
p.000013: It appears normal that specialists hesitate in stating their personal opinion about the question of the severity or
p.000013: gene disease or abnormality. It is indeed the future parents who must bare the responsibility for the child
p.000013: disorder. The estimation of the severity of this disorder is determined by the cultural and social environment
p.000013: (the geographic factor - such as e.g. in the Third World - or financial resources), by their family history (other
p.000013: disabled children), by their religious convictions and by their conviction about what a valuable life is for themselves
p.000013: and for their unborn child.
p.000013:
p.000013: If one takes account of the fact that in very many legal systems VPT is allowed for psychosocial reasons (which are
p.000013: difficult to define), it would be somewhat paradoxical that disorders, abnormalities or malformations
p.000013: originating from the medical domain would not be accepted as a justification for VPT or PGD.
p.000013:
p.000013: Certain members of the Committee therefore believe that the decision about the justification of the use of these
p.000013: techniques in essence must first be taken by the parents concerned (or by the mother), after of course they have
p.000013: received correct and complete information beforehand about the disorder, including the consequences in the medium and
p.000013: longer term.
p.000013:
p.000013: II.3.3.4.
p.000013: But even if one accepts to follow the decision of the parents as regards actions of a negative private eugenistic
p.000013: nature with disorders or malformations that are medically acknowledged as pathology, problems still exist.
p.000013: If on the one hand some disorders occur at birth or straight afterwards, there are on the other hand also disorders
p.000013: which only develop at 40, 60 or 80 years of age. And here there are disorders that everyone sees
...
p.000031: what happens in reality, and what the pertinent basic questions are as possible assistance in making
p.000031: well-considered decisions as regards genetic changes in the germ line that demonstrate respect for the whole
p.000031: population.
p.000031: Formerly the “old” eugenics concentrated on stimulating the birth of the strongest at the expense of the
p.000031: weakest. Now things clearly go a step further, thanks to the possibilities that technical genetic science offers to
p.000031: avoid the implantation of an embryo that is regarded as defective or as a carrier of a chromosomal
p.000031: abnormality. But the ability to create new genes and consequently new biological functions takes us yet another step
p.000031: further, that can lead to the modification of the nature of the human species.
p.000031: A simple question then arises: To actually improve the human species?
p.000031: This is an awesome question, that should be preceded by other questions that according to some are
p.000031: relevant, according to others are iconoclastic, and according to yet others archaic: Where is the limit between
p.000031: what is pathological and what is normal? What is so-called human normality? Is it wise to contemplate a norm for the
p.000031: human species? Who can assume the right to define the norm? Converting the myth of the zero-defect baby with all the
p.000031: required properties into reality, is that really progress?
p.000031: Nevertheless, another more political question arises that automatically results from the last questions and
p.000031: from the answers that may or may not be given. What is the place of the disabled person in our society and how we can
p.000031: speak of enhancement genetic changes in the germ line without – even subconsciously – detracting from the dignity of
p.000031: disabled persons (and the people in their environment), in other words those who often suffer more due to the way in
p.000031: which they are looked down on by society than their actual disability? The question refers us to either
p.000031: hyperindividualistic or collective egoism, or to the capacity of compassion in the sense of co- living. This is
p.000031: therefore everything but a false debate without a view of reality. What is wrong is the widespread notion that a
p.000031: “genetic defect” and its phenotypical manifestation are by definition social non-values, a catastrophe for
p.000031: the families and a professional failure by the therapist.
p.000031:
p.000031: Even if there has not yet been a wide debate about the modern eugenistic risk, general prenatal screening is already
p.000031: a reality. Without wanting to take a step back in this evolution (that is highly beneficial to the health
p.000031: of individuals), we must determine that should matters come so far that PGD 54 and prenatal screening 55 of
p.000031: chromosomal anomalies or otherwise would be systematically proposed and even made compulsory, the nature of
p.000031: the medical action would fundamentally change: medical treatment would then no longer be a curative and
p.000031: preventive individual medical approach, but would de facto come under a more or less imperative public health approach.
p.000031: And because the concept of public health has evolved, we would remind that the public health approach has in principle
p.000031: two objectives: firstly to make the medical care market more efficient and therefore rationalise its operation,
...
p.000033: to the public domain as it is under social and shortly also economic pressure.
p.000033: The circle is nearly complete. We could soon arrive unnoticed from a fear of eugenic totalitarism at “democratic
p.000033: eugenics”; voluntary and well-considered individual private eugenics that secretively transforms into individual
p.000033: eugenics with a compelling nature as a result of collective pressure (and the fear of subsequent stigmatisation).
p.000033: According to some, this evolution is all in all progress for public health and the quality of life of parents and
p.000033: baby. According to others, this “progress” is only possible at the expense of a scientific and medical
p.000033: failure: trisomy 21 for example is then not included or treated, but one limits oneself to establishing the
p.000033: existence of trisomy 21 before the birth of the child, and proposing the ending of the pregnancy to
p.000033: the woman concerned. A third group goes yet further: “proposing” is according to this group a euphemism 64,
p.000033: because the woman's society increasingly expects an “approach with a sense of public responsibility” to public health.
p.000033: Such an approach would then consist of bringing an end to her pregnancy and, again, in so doing accept the obligate
p.000033: norm reference concerning what responsible parenthood and a public sense of responsibility means! They add that the
p.000033: evolution will proceed all the faster if one organises the disappearance of pathologies of which one does not know the
p.000033: causes, and society does not make the necessary efforts to offer “persons disabled by the genome” and their nearest
p.000033: real possibilities of integration and development.
p.000033: The arguments of the respective supporters of the three standpoints about the so-called democratic or
p.000033: undemocratic character of new private eugenics (that must however be distinguished from the gruesome
p.000033: totalitarian state activities of former times) cannot shroud the persuasiveness of the prevailing social and
p.000033: cultural standards in our modern societies. Our personal existence is not merely resolvable to our
p.000033: biological individuality and our genetic patrimony, with ultimately the resulting more or less successful
p.000033: phenotypical development. In fact we also exist outside ourselves by our mutual participation in the sign and symbol
p.000033: world of a human society. And what distinguishes human society from animal society is exactly that is based on
p.000033: language, on feeling, on cultural products and presentations and symbolic forms. Just as for the abovementioned risks
p.000033: of democratic eugenics, it somewhat bears witness to wishful
p.000033:
p.000033: 62 J.-Y. Nau. “L’éradication programmée du mongolism”, in Le Monde, 13 March 1999.
p.000033: 63 The term genetic legal adviser would in itself warrant a long digression, particularly as regards
p.000033: itsneutrality claim. According to some, the neutral genetic advisor is indeed a fiction, invented to free
p.000033: clinical genetics of a very loaded past, and to discharge the physician of pressing ethical tasks with
p.000033: respect to the couple who must ultimately take responsibility for the decision. The physician would then provide the
...
Searching for indicator mentally:
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p.000009: genetic defects or increasing the number of advantageous characteristics in a specific population or
p.000009: within the whole human species. One can distinguish two kinds.
p.000009:
p.000009: - Non-compelling macro-eugenics meaning at the level of society information is made available about
p.000009: genetics, and one encourages and supports people taking eugenistic decisions without actually compelling
p.000009: them. In the current situation this can concern making tracing methods available for damaged genes, genetic
p.000009: counselling, the reducing of resistance to the termination of the pregnancy after pre-implantation diagnosis (PGD) or
p.000009: after the termination of the pregnancy after prenatal diagnosis (PD), etc.
p.000009:
p.000009: - Compelling macro-eugenics, sometimes called state eugenics. This involves
p.000009: the introduction of imperative measures at state level. Here the freedom of the individual or the couple is
p.000009: affected. One can interpret the prohibition of marriages between blood relations for genetic reasons as a form of
p.000009: this type of macro-eugenics.
p.000009:
p.000009:
p.000009: 4 The Descent of Man, General Summary, Publisher The Great Books, p. 596
p.000009:
p.000009: Opinion no 33 of 7 November 2005 - Final version
p.000010: 10
p.000010:
p.000010: The example of the policy of compulsory vaccinations indicates that the introduction of imperative measures within the
p.000010: context of public health and imperative measures by the state is therefore not always regarded as unacceptable.
p.000010: However, negative state eugenics was responsible for misuse in the sterilisation and elimination of the mentally ill in
p.000010: the XX century.
p.000010:
p.000010: Each type of eugenics can have a negative form: elimination or reduction of undesired characteristics or a
p.000010: positive form: the promoting of characteristics regarded as desirable.
p.000010:
p.000010: This terminological approach entails no value judgement, but can serve as a starting point for discussions about
p.000010: scientific results and ethical and political standpoints.
p.000010:
p.000010: II.3. Negative eugenics by the selection of embryos and/or foetus
p.000010: II.3.1. Historical summary – Medical status questionis
p.000010:
p.000010: A new medical discipline has developed since the end of the 60's: clinical genetics. Its importance has
p.000010: greatly increased due to scientific progress and reinforced cooperation with gynaecology and obstetrics
p.000010: departments. Pregnant women with an increased risk of a child with a genetic illness can increasingly make use of
p.000010: choriocentesis. 5(11th week) or of an amniocentesis
p.000010: 6 (16th week). These methods can be used to examine if the unborn child is affected by one of the sought
p.000010: abnormalities. Other methods for prenatal diagnosis, including echography, ensure that one can identify
...
Searching for indicator disability:
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p.000009: thrown together, particularly as regards terminology. As a result, opinions and standpoints concerning this
p.000009: concept have been falsified. The Committee therefore proposes introducing the following distinctions.
p.000009:
p.000009: It is true that the term eugenics originally referred to a general ‘improvement’ of the human species (the human
p.000009: ‘race’) with the purpose of spreading ‘desirable’ genetic characteristics by suppressing the number of ‘undesired’
p.000009: properties of the species. Since the Second World War all measures with the purpose of the ‘improvement’ of a
p.000009: whole population or the human species have generally been put to question, or even regarded as unacceptable. On the
p.000009: other hand, developments in human genetics have given individuals and families the resources to avoid the
p.000009: birth of genetically disabled individuals, to accordingly improve individual and family welfare. To help clarify the
p.000009: discussion it seems sensible to continue using the term ‘eugenics’ subject to the introduction of appropriate
p.000009: distinctions.
p.000009:
p.000009: Individual eugenics or micro-eugenics, private eugenics and even liberal eugenics.
p.000009: This involves a selection phenomenon at an individual level. We would mention the decision of a couple
p.000009: regarding the conception, implantation or birth of a child who is a carrier of a genetic disorder that leads to a
p.000009: physical or mental disability. Another example is research (currently with few promising results) into sperm
p.000009: or embryos of “superior quality” (for example as regards IQ) or possible future attempts to create
p.000009: genetically “optimised/enhanced” embryos. One can also add to this: the example of the informing of future spouses
p.000009: about being the carrier of the same harmful, recessive gene, to allow them to avoid an offspring affected by
p.000009: thalassemia, or pre-implantation or prenatal diagnosis during a pregnancy with a such a couple. Finally, there
p.000009: is the prenatal diagnosis of a pregnant woman from a certain age.
p.000009:
p.000009: Social eugenics or macro-eugenics or even collective eugenics.
p.000009: This is aimed at the introduction of measures with the purpose or consequence of reducing the number of
p.000009: genetic defects or increasing the number of advantageous characteristics in a specific population or
p.000009: within the whole human species. One can distinguish two kinds.
p.000009:
p.000009: - Non-compelling macro-eugenics meaning at the level of society information is made available about
p.000009: genetics, and one encourages and supports people taking eugenistic decisions without actually compelling
p.000009: them. In the current situation this can concern making tracing methods available for damaged genes, genetic
p.000009: counselling, the reducing of resistance to the termination of the pregnancy after pre-implantation diagnosis (PGD) or
p.000009: after the termination of the pregnancy after prenatal diagnosis (PD), etc.
p.000009:
p.000009: - Compelling macro-eugenics, sometimes called state eugenics. This involves
...
p.000012: their own eyes they moved behind the majority standpoint. It cannot be ruled out that a similar movement may form
p.000012: with respect to VPT, for example with trisomy 21. This involves an evolution in social attitudes, an
p.000012: evolution not seen as negative by everyone.
p.000012: The third argument can be rebutted by remembering the distinction between a human person (born living and viable) and
p.000012: an embryo, and the imperative obligation to guarantee the welfare of all persons and more specifically the least
p.000012: privileged.
p.000012:
p.000012: II.3.3.2.
p.000012: Among the population and specialists in genetics and medically assisted reproduction, there exists a certain
p.000012: consensus about the fact that one considers PD (followed by VPT) and PGD ethically acceptable in “severe”
p.000012: or “serious” cases.
p.000012:
p.000012: Some members of the Committee indeed consider that the status of the embryo and the foetus has no part in the status of
p.000012: the person, and that embryos and foetuses only gradually obtain the qualities of a human being according to
p.000012: intra-uterine development.
p.000012: Starting from this consideration, they consider that the distinctive weight assigned on the one hand to an embryo, and
p.000012: on the other hand to the possible or probable suffering of the unborn child arriving in the world with a serious
p.000012: disability, as well as the welfare and the health of future parents, justify resorting to this action.
p.000012:
p.000012:
p.000012: 13 These attitudes are defended, for example, by the Fondation Jérôme Lejeune. See the intervention in the French
p.000012: Senate of President Jean-Marie Le Mené: ‘Y a-t-il un eugénisme “clean”?’ on the site:
p.000012: www.généthique.org/doss_theme/dossiers/eugénisme/eugénisme_jmlm.htm
p.000012:
p.000012: Opinion no 33 of 7 November 2005 - Final version
p.000013: 13
p.000013:
p.000013: II.3.3.3.
p.000013: Agreement has not, however, been reached about the ethical question of what a “severe” or “serious”
p.000013: disorder or deformity is. Professional associations involving clinical geneticists, reproductive technology and
p.000013: bio-ethical advisers have still not yet agreed about the drawing up of a list of disorders which are accepted as
p.000013: serious enough to justify a PGD or PD. There are indeed more than 5,000 monogenetic disorders, and nearly all of these
p.000013: disorders show signs of variable severity and clinical evolution (see H. Galjaard, a.c.).
p.000013:
p.000013: It appears normal that specialists hesitate in stating their personal opinion about the question of the severity or
p.000013: gene disease or abnormality. It is indeed the future parents who must bare the responsibility for the child
p.000013: disorder. The estimation of the severity of this disorder is determined by the cultural and social environment
...
p.000031: abnormality. But the ability to create new genes and consequently new biological functions takes us yet another step
p.000031: further, that can lead to the modification of the nature of the human species.
p.000031: A simple question then arises: To actually improve the human species?
p.000031: This is an awesome question, that should be preceded by other questions that according to some are
p.000031: relevant, according to others are iconoclastic, and according to yet others archaic: Where is the limit between
p.000031: what is pathological and what is normal? What is so-called human normality? Is it wise to contemplate a norm for the
p.000031: human species? Who can assume the right to define the norm? Converting the myth of the zero-defect baby with all the
p.000031: required properties into reality, is that really progress?
p.000031: Nevertheless, another more political question arises that automatically results from the last questions and
p.000031: from the answers that may or may not be given. What is the place of the disabled person in our society and how we can
p.000031: speak of enhancement genetic changes in the germ line without – even subconsciously – detracting from the dignity of
p.000031: disabled persons (and the people in their environment), in other words those who often suffer more due to the way in
p.000031: which they are looked down on by society than their actual disability? The question refers us to either
p.000031: hyperindividualistic or collective egoism, or to the capacity of compassion in the sense of co- living. This is
p.000031: therefore everything but a false debate without a view of reality. What is wrong is the widespread notion that a
p.000031: “genetic defect” and its phenotypical manifestation are by definition social non-values, a catastrophe for
p.000031: the families and a professional failure by the therapist.
p.000031:
p.000031: Even if there has not yet been a wide debate about the modern eugenistic risk, general prenatal screening is already
p.000031: a reality. Without wanting to take a step back in this evolution (that is highly beneficial to the health
p.000031: of individuals), we must determine that should matters come so far that PGD 54 and prenatal screening 55 of
p.000031: chromosomal anomalies or otherwise would be systematically proposed and even made compulsory, the nature of
p.000031: the medical action would fundamentally change: medical treatment would then no longer be a curative and
p.000031: preventive individual medical approach, but would de facto come under a more or less imperative public health approach.
p.000031: And because the concept of public health has evolved, we would remind that the public health approach has in principle
p.000031: two objectives: firstly to make the medical care market more efficient and therefore rationalise its operation,
p.000031: and secondly de facto reduce the risk that an illness occurs and therefore anticipate pathological
...
p.000038: If one on the other hand accepts that genetic modification is not necessarily a bad thing, the real but very difficult
p.000038: questions arise: those concerning alertness with respect to research into the modification of the human genome
p.000038: remain, particularly where this concerns distributive justice and equal access to these possibilities. One
p.000038: must have the courage to tackle these political and philosophical questions, without immediately rejecting the
p.000038: hypothesis that in the nearish future genetic recombination of a person can take place. One would better
p.000038: regulate freedom of research and development, and under strict, public and reviewable procedures, permit
p.000038: experiments that some wish to prohibit in a general, absolute and final manner.
p.000038:
p.000038: Opinion no 33 of 7 November 2005 - Final version
p.000039: 39
p.000039:
p.000039: Standpoint B
p.000039:
p.000039: Other members are of the opinion that the question must again be raised in a context of scientific and
p.000039: operational uncertainty.
p.000039: For these members the ethical discussions about somatic or germinal gene modification should concentrate on access to
p.000039: new, therapeutic therapies, the transparency of the research and the psychosocial manipulation that may be applicable.
p.000039: These members also raise the inescapable problem of the place of a genetic disability in our society, and raise the
p.000039: concrete question as to who has the right to define what “a normal person” is. Or as a consequence of
p.000039: this, how one can actually define “improvement” when talking about genetic modification.
p.000039: They ask themselves about the opportunity to steer medicine in the direction of
p.000039: enhancement/optimising practices for non-pathological disorders, and point out the possible dangers of the
p.000039: interference of certain parties in public health relating to individual genetic profiles.
p.000039: They are of the opinion that the sector of public health should once again leave the exclusive medical-scientific
p.000039: circuit, and make its entry in the political and social arena. It is indeed naive to deny the possibility of a
p.000039: compelling form of “democratic eugenics” when science forgets its ethical and social significance and the
p.000039: political hides behind scientific expertise that is becoming increasingly segmented.
p.000039: They point out the risk of disguised eugenics by putting all responsibility for ethical choices at individual level,
p.000039: either in a context of instrumentalising the new social standards, in a context of pressure due to social-cultural
p.000039: conformism, or even in name of new regulations in public health. The human community cannot be reduced to
p.000039: genetic individualism and expression of phenotype. It is also language, feeling, exchange of symbolic presentations and
...
Health / Motherhood/Family
Searching for indicator family:
(return to top)
p.000009: says: “The two sexes should refrain from marriage if they are in any marked degree inferior in body or mind. But such
p.000009: hopes will never be even partially realised until the laws of inheritance are thoroughly known.”4. One may remark that
p.000009: Darwin supported individual choice and refrained from promoting actual measures as long as the scientific
p.000009: knowledge required for this was absent. Very many people thought to have been inspired by him appeared not to act with
p.000009: such caution.
p.000009:
p.000009: II.2. Definitions
p.000009: Since the origin of the concept of eugenics there has always been much confusion, and all sorts of terms have been
p.000009: thrown together, particularly as regards terminology. As a result, opinions and standpoints concerning this
p.000009: concept have been falsified. The Committee therefore proposes introducing the following distinctions.
p.000009:
p.000009: It is true that the term eugenics originally referred to a general ‘improvement’ of the human species (the human
p.000009: ‘race’) with the purpose of spreading ‘desirable’ genetic characteristics by suppressing the number of ‘undesired’
p.000009: properties of the species. Since the Second World War all measures with the purpose of the ‘improvement’ of a
p.000009: whole population or the human species have generally been put to question, or even regarded as unacceptable. On the
p.000009: other hand, developments in human genetics have given individuals and families the resources to avoid the
p.000009: birth of genetically disabled individuals, to accordingly improve individual and family welfare. To help clarify the
p.000009: discussion it seems sensible to continue using the term ‘eugenics’ subject to the introduction of appropriate
p.000009: distinctions.
p.000009:
p.000009: Individual eugenics or micro-eugenics, private eugenics and even liberal eugenics.
p.000009: This involves a selection phenomenon at an individual level. We would mention the decision of a couple
p.000009: regarding the conception, implantation or birth of a child who is a carrier of a genetic disorder that leads to a
p.000009: physical or mental disability. Another example is research (currently with few promising results) into sperm
p.000009: or embryos of “superior quality” (for example as regards IQ) or possible future attempts to create
p.000009: genetically “optimised/enhanced” embryos. One can also add to this: the example of the informing of future spouses
p.000009: about being the carrier of the same harmful, recessive gene, to allow them to avoid an offspring affected by
p.000009: thalassemia, or pre-implantation or prenatal diagnosis during a pregnancy with a such a couple. Finally, there
p.000009: is the prenatal diagnosis of a pregnant woman from a certain age.
p.000009:
p.000009: Social eugenics or macro-eugenics or even collective eugenics.
p.000009: This is aimed at the introduction of measures with the purpose or consequence of reducing the number of
p.000009: genetic defects or increasing the number of advantageous characteristics in a specific population or
p.000009: within the whole human species. One can distinguish two kinds.
p.000009:
...
p.000012:
p.000012:
p.000012: 13 These attitudes are defended, for example, by the Fondation Jérôme Lejeune. See the intervention in the French
p.000012: Senate of President Jean-Marie Le Mené: ‘Y a-t-il un eugénisme “clean”?’ on the site:
p.000012: www.généthique.org/doss_theme/dossiers/eugénisme/eugénisme_jmlm.htm
p.000012:
p.000012: Opinion no 33 of 7 November 2005 - Final version
p.000013: 13
p.000013:
p.000013: II.3.3.3.
p.000013: Agreement has not, however, been reached about the ethical question of what a “severe” or “serious”
p.000013: disorder or deformity is. Professional associations involving clinical geneticists, reproductive technology and
p.000013: bio-ethical advisers have still not yet agreed about the drawing up of a list of disorders which are accepted as
p.000013: serious enough to justify a PGD or PD. There are indeed more than 5,000 monogenetic disorders, and nearly all of these
p.000013: disorders show signs of variable severity and clinical evolution (see H. Galjaard, a.c.).
p.000013:
p.000013: It appears normal that specialists hesitate in stating their personal opinion about the question of the severity or
p.000013: gene disease or abnormality. It is indeed the future parents who must bare the responsibility for the child
p.000013: disorder. The estimation of the severity of this disorder is determined by the cultural and social environment
p.000013: (the geographic factor - such as e.g. in the Third World - or financial resources), by their family history (other
p.000013: disabled children), by their religious convictions and by their conviction about what a valuable life is for themselves
p.000013: and for their unborn child.
p.000013:
p.000013: If one takes account of the fact that in very many legal systems VPT is allowed for psychosocial reasons (which are
p.000013: difficult to define), it would be somewhat paradoxical that disorders, abnormalities or malformations
p.000013: originating from the medical domain would not be accepted as a justification for VPT or PGD.
p.000013:
p.000013: Certain members of the Committee therefore believe that the decision about the justification of the use of these
p.000013: techniques in essence must first be taken by the parents concerned (or by the mother), after of course they have
p.000013: received correct and complete information beforehand about the disorder, including the consequences in the medium and
p.000013: longer term.
p.000013:
p.000013: II.3.3.4.
p.000013: But even if one accepts to follow the decision of the parents as regards actions of a negative private eugenistic
p.000013: nature with disorders or malformations that are medically acknowledged as pathology, problems still exist.
p.000013: If on the one hand some disorders occur at birth or straight afterwards, there are on the other hand also disorders
p.000013: which only develop at 40, 60 or 80 years of age. And here there are disorders that everyone sees
...
p.000015: Rosenberg's team. It concerned patients in a terminal stage for whom no “therapeutic” effect was
p.000015: expected. The gene introduced coded for a protein that induced resistance to antibiotics. The purpose of
p.000015: this study was to examine whether this gene was functional and if a protein would be made by this gene.
p.000015:
p.000015: Gene therapy became a real experimental therapy from the 90's. In September 1990 the American NIH
p.000015: (National Institutes or Health) gave the team led by W.F. Anderson and M.B. Blaese (Bethesda, US)
p.000015: permission for the first tests relating to somatic gene therapy among people, in other words for the first,
p.000015: direct curative intervention on the human genome. With this intervention one aimed to cure a girl or at least alleviate
p.000015: her suffering. The girl suffered from a serious immunodeficiency as a result of a genetic abnormality. This
p.000015: was a deficiency of adenosine deaminase (ADA), so the person affected had practically no resistance to
p.000015: the pathogens to which she was exposed 14.
p.000015: - In January 1991, with the permission of the Recombinant DNA Advisory Committee of the NIH, the team of S. Rosenberg
p.000015: (Bethesda, VSA) used gene therapy to cure two patients who were suffering from a malignant melanoma in a
p.000015: terminal stage 15.
p.000015: The test had no positive result, but cancer became a preferential target for gene therapy.
p.000015:
p.000015: A first therapeutic success was recorded in 1993 in the US with a woman with serious family hypercholesterolaemia.
p.000015:
p.000015: In the course of the nineties numerous somatic gene therapy tests were conducted worldwide (in an experimental way) but
p.000015: the really prominent successes were recorded by the French team of Alain Fischer and Marina Cavazzana-Calvo. 16, from
p.000015: 1999. For the first time in the world the team successfully treated “bébés-bulle” (babies growing up in a
p.000015: sterile space) who were
p.000015:
p.000015:
p.000015: 14 The therapy of Anderson and Blaese consisted mainly in the changing of the genetic instructions of the T
p.000015: lymphocytes of the patient, to then restore normal production of the ADA enzyme and in turn have the immune functions
p.000015: again work satisfactorily. A clinical improvement was established as a result of this treatment.
p.000015: 15 In this therapeutic test protocol the gene that codes for the “tumour necrosis factor” – a substance with a
p.000015: powerful antitumoral effect – was introduced in a special class of lymphocytes, the “Tumour infiltrating lymphocytes”
p.000015: (TIL).
p.000015: 16 Fischer, A., Hacein-Bey, S and Cavazzana-Calvo, M 2002, “Gene therapy of severe combined
p.000015: immunodeficiencies”, Nat. Rev. Immunol. 2,615-21.
p.000015: Hacein-Bey-Abina, S., Le Deist, F., Carlier, F., Bouneaud, C., Hue, C., De Villartay, J.P., Thrasier,
p.000015: A.J., Wulfraat, N., Sorensen, R., Dupuis-Girod, S., Fischer A. and Cavazzana-Calvo, M. 2002, “Sustained
p.000015: correction of X-linked severe combined immunodeficiency by ex vivo gene therapy”, N. Engl. J. Med. 346, 1185-93.
p.000015:
p.000015: Opinion no 33 of 7 November 2005 - Final version
p.000016: 16
p.000016:
...
p.000033: of this. But in this respect it is important to really allow them the freedom to make a choice in all
p.000033: conscience. Otherwise the progress of prenatal diagnosis would no longer be indisputable.
p.000033: As for “democratic eugenics” things are very different to abortion for medical reasons, because in the name of
p.000033: individual freedom the State could introduce eugenics not in that name by putting the full weight of the
p.000033: choice – and of any associated guilt – with the individual, so with the woman expecting an “abnormal” child. If
p.000033: the woman actually has legal access to the knowledge without economic discrimination because all tests and
p.000033: diagnostic and therapeutic operations have been reimbursed, she could therefore be the tool of
p.000033: “biotechnological progress”. Ideally, abortion for medical reasons has the purpose of avoiding serious disorders, and
p.000033: it is a matter discussed at individual level between the physician and patient within an ambiguous legal
p.000033: framework (could this be otherwise?). But in reality the decision is increasingly less often left to the personal
p.000033: ethics of the patient and/or the physician-obstetric. The freedom of choice of the woman is in reality
p.000033: therefore less obvious than we think because it is determined by influential social models, by possible
p.000033: financial considerations, by the family or the general psychological environment, or by an advisor/client
p.000033: relationship that replaces a physician/patient relationship. The decision is gradually moved from the private domain
p.000033: to the public domain as it is under social and shortly also economic pressure.
p.000033: The circle is nearly complete. We could soon arrive unnoticed from a fear of eugenic totalitarism at “democratic
p.000033: eugenics”; voluntary and well-considered individual private eugenics that secretively transforms into individual
p.000033: eugenics with a compelling nature as a result of collective pressure (and the fear of subsequent stigmatisation).
p.000033: According to some, this evolution is all in all progress for public health and the quality of life of parents and
p.000033: baby. According to others, this “progress” is only possible at the expense of a scientific and medical
p.000033: failure: trisomy 21 for example is then not included or treated, but one limits oneself to establishing the
p.000033: existence of trisomy 21 before the birth of the child, and proposing the ending of the pregnancy to
p.000033: the woman concerned. A third group goes yet further: “proposing” is according to this group a euphemism 64,
p.000033: because the woman's society increasingly expects an “approach with a sense of public responsibility” to public health.
p.000033: Such an approach would then consist of bringing an end to her pregnancy and, again, in so doing accept the obligate
p.000033: norm reference concerning what responsible parenthood and a public sense of responsibility means! They add that the
p.000033: evolution will proceed all the faster if one organises the disappearance of pathologies of which one does not know the
...
p.000033: of democratic eugenics, it somewhat bears witness to wishful
p.000033:
p.000033: 62 J.-Y. Nau. “L’éradication programmée du mongolism”, in Le Monde, 13 March 1999.
p.000033: 63 The term genetic legal adviser would in itself warrant a long digression, particularly as regards
p.000033: itsneutrality claim. According to some, the neutral genetic advisor is indeed a fiction, invented to free
p.000033: clinical genetics of a very loaded past, and to discharge the physician of pressing ethical tasks with
p.000033: respect to the couple who must ultimately take responsibility for the decision. The physician would then provide the
p.000033: couple with sterile genetic information and serve in carrying out their decision. To which he inevitably gets the
p.000033: question: “And you doctor, what would you do if you were in our situation?” That is the question that humanly
p.000033: brings an end to the inhumanity of ethical neutrality. Lexique des termes ambigus et
p.000033: controversés sur la famille, la vie et les questions éthiques. Pierre Téqui éditeur, Parijs 2005, pp.137-146.
p.000033: 64 In such a context they can barely accept that the term therapeutic abortion is simply interchangeable with the
p.000033: term voluntary pregnancy termination.
p.000033:
p.000033: Opinion no 33 of 7 November 2005 - Final version
p.000034: 34
p.000034:
p.000034: thinking to maintain that the decision about this or gene enhancement germinal gene intervention would
p.000034: exclusively be a matter for the parties involved or their family! Wishful thinking, , because
p.000034: deliberately closing the eyes to the weight of (past, current or future) conformism and socio-cultural
p.000034: pressure so some subject themselves to the prevailing models of the time, or worse, cannot withstand the
p.000034: paternalism of the design of the look of the time. Because our societies are increasingly controlled by
p.000034: the media, public opinion and social mimicry, we do not have to refer to the other imperative force, that of
p.000034: social models, which relating to modern eugenics can push forward while they all have celebrated in fashion, sport,
p.000034: dietetics or language. We may not lose sight of what powerful “pressure to conform" individuals undergo (and often
p.000034: accept). Should new “valorising” genetic standards or hypothetical care for “improvement” of the human species emerge
p.000034: tomorrow, so-called private modern eugenics 65 could also de facto assume an imperative character in the name of the
p.000034: ideology of the fortune of the day, or in the name of new public health demands.
p.000034:
p.000034: Conclusion
p.000034: The message in the standpoint of these members is particularly one of caution and solidarity.
p.000034:
p.000034: IV. 2.3. Standpoint C
p.000034:
p.000034: Without identifying with doctrinal standpoints relating to germinal gene modification, other members are
p.000034: advocates of a cautious and gradual approach that is receptive to scientific and social progress.
p.000034:
p.000034: IV. 2.3.1.
p.000034: At a scientific level they observe the growing complexity of the processes that determine the phenotype of an
...
Health / Physically Disabled
Searching for indicator illness:
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p.000004: by the nucleotide sequences. Falls under the understanding of ‘hereditary factor’. The gene functions as a
p.000004: matrix model with the synthesis of premessenger RNA.
p.000004: - Genome: complete set of genes of an organism, an individual or a species. A distinction is made between the
p.000004: nuclear genome (DNA of the nucleus or cell nucleus) and the mitochondrial genome (DNA of the mitochondria).
p.000004: - Genotype - phenotype: the genotype forms the whole of genetic characteristics of an individual ensuing from
p.000004: the composition of its DNA (RNA with some viruses). The phenotype is the whole of observable
p.000004: characteristics (anatomical, morphological, physiological and biochemical characteristics) of an individual.
p.000004: - Heteroplasmy: hybrid cytoplasm that results from the fusion of the cytoplasm of two different organisms
p.000004: - Germ line: whole of the reproductive cells of an individual that ensure the transfer of the hereditary
p.000004: properties of that individual to its offspring.
p.000004: - Locus: place on a chromosome according to a specific gene.
p.000004: - Metabolom: system of all products of biochemical reactions taking place within an organism.
p.000004: - Mitochondrion: organelle of the cytoplasm specialised in energy conversion functions and that contains a DNA
p.000004: that is a carrier of genetic information.
p.000004: - PGD: pre-implantation genetic diagnosis of an embryo at the stage when the embryo is still made up of but a few
p.000004: cells to trace a hereditary illness before inserting the embryo in utero .
p.000004: - Proteome: system of all proteins of an organism that results from the translation of messenger RNA
p.000004: and of post-translational modification
p.000004: - Regulation: process that modulates the expression of a DNA sequence as a cascade. Some of the
p.000004: sequences, the so-called coding sequences, are transcribed in pre- messenger-RNA, that after splicing become
p.000004: messenger-RNA and that play a part in the synthesis of the proteins. Other sequences are transcribed in small
p.000004: regulating RNA (interfering RNA and Micro RNA).
p.000004: - Soma: all non-germinal cells that form the tissue and organs of an individual.
p.000004: - Gene therapy: introduction into a genome with a defective gene of a normal copy of that gene to correct the
p.000004: consequences of the defect.
p.000004: - Transcription: synthesis of RNA sequences on the basis of a DNA model.
p.000004: - Transcriptom: system of all RNA molecules that result from the transcription of the DNA of an
p.000004: organism.
p.000004: - Transgen: gene of an organism that is transferred to the genome of another organism
p.000004: - Transgenesis: process of transferring the gene of an organism into the genome of another organism
p.000004: - Translation: synthesis of protein-creating amino acid polymers from an mRNA model that is used by the
p.000004: ribosomes as example.
p.000004:
p.000004:
p.000004:
p.000004: Opinion no 33 of 7 November 2005 - Final version
p.000005: 5
p.000005:
p.000005: I. 2. Gene – genotype - genetics1
p.000005: I.2.1. Traditional conceptual genetics (1865-1945)
p.000005:
...
p.000005: genetic program. In the sixties Jacob and Monod established two classes of genes (structural genes and regulatory
p.000005: genes) that match signal sequences not translated into proteins.
p.000005: At a very early stage some authors saw that the genetic program interacted with its products. Only these
p.000005: products can interpret the programme, and the organism ultimately manages the working of the structural genes
p.000005: by activating or inhibiting the regulatory genes.
p.000005: Numerous interaction systems between genotype and phenotype have come to light.
p.000005: Today a protein product is no longer considered as the pure collinear reflection of the DNA sequences. The same DNA
p.000005: sequence can generate diverse messenger-RNA that induce various proteins with different phenotypical
p.000005: characteristics. This is because the messenger- RNA and the proteins of which messenger-RNA induces the
p.000005: synthesis undergo different modification (RNA-splicing, RNA-editing, methylation, glycosylation, etc).
p.000005: Sequences of separate messenger-RNA can join to cause the form a given protein. Interaction takes place at different
p.000005: levels:
p.000005:
p.000005:
p.000005: 1 Stanford Encyclopedia of Philosophy (2004)
p.000005:
p.000005: Opinion no 33 of 7 November 2005 - Final version
p.000006: 6
p.000006:
p.000006: - gene products which mutually interact;
p.000006: - nuclear genes that interact with mitochondrial genes (hence the divergence of the expression of
p.000006: the precursor gene of the protein amyloid that deposits in the brain with the Alzheimer illness, depending on the
p.000006: information contained in the mitochondrial genome)2 ;
p.000006: - the question of from which parent a gene comes can have an effect.
p.000006:
p.000006: A decisive role in that respect is played by regulating factors, consisting of RNA, proteins or molecules with a low
p.000006: molecular weight (which work as cofactors or inhibitors).
p.000006:
p.000006: 1.2.3. Post-genomic genetics (2000 - …)
p.000006:
p.000006: Paradoxically enough the decoding of the human genome (2001) has reinforced a paradigm change in the field of genetics.
p.000006: Except in a few cases in which the gene has an omnipotent effect, the relationship between genes and phenotypes follows
p.000006: a complicated determinism.
p.000006:
p.000006: The phenotype is regarded as tributary to the genome, the transcriptome, the proteome, the metabolom and ambient
p.000006: factors.
p.000006: Over a period of 50 years molecular genetics, that started from the reductionist dogma ‘DNA -> RNA ->
p.000006: protein -> phenotype’, has made clear that hereditariness and reproduction cannot be reduced to static
p.000006: genetics, but are evolutionary development processes. Genomics has taken a flexible and dynamic form, with a
p.000006: considerable capacity for molecular and structural evolution. Final integration takes place at the expense of the
p.000006: “reformatting” of the information in all steps that lead to the achievement of the phenotype.
p.000006:
p.000006: In the case of genetic modification induced by experiments using transgenesis (the case with gene
p.000006: therapy) current information shows that phenotypes resulting from the expression of a new gene or from
p.000006: the inactivation of an existing gene are unpredictable. This concerns the uncertainties about the
p.000006: molecular vectors, about the integration/inhibition mechanism and about the disturbances induced
p.000006: in the regulating systems of the organism concerned (micro RNA, interfering RNA).
p.000006: In 2005 the genome appears as something that functions in networks of multifunctional genes which express
p.000006: themselves differently depending on the development stages and the tissue. The networks are redundant and their working
p.000006: is buffered by internal and external regulating mechanisms of the epigenetic type.
p.000006:
p.000006: I. 3. Gene therapy
p.000006: An example of transgenesis is gene therapy, that has the purpose of correcting a genetic illness by integrating a new
p.000006: gene.
p.000006: The successful applications of transgenesis on a large scale concern micro-organisms and some plant and animal
p.000006: species. This concerns in this case organisms of which the populations underwent transgenesis by the
p.000006: incorporation of new genes, and then were subjected to thorough selection, whereby numerous individuals
p.000006: were eliminated until only one or a few individuals remained displaying the sought phenotype. The technique is
p.000006: successfully applied to have organisms produce medically useful molecules (insulin, growth hormone, etc.).
p.000006: As regards the application of the technique on people, in principle two kinds of gene therapy can be considered:
p.000006: somatic gene therapy, where the genome of the cells of the soma is changed, and germinal gene therapy
p.000006: that concerns the germ line. The second type of gene therapy will therefore also have consequences on the
p.000006: offspring of the treated individual.
p.000006: A distinction can be made between gene therapies and enhancement gene modification. The latter has no therapeutic
p.000006: purpose, but is aimed at modifying the genome to increase individual performance at phenotypical level.
p.000006:
p.000006: In the simplest case gene therapy consists of from a therapeutic perspective the introducing in a genome of a DNA
p.000006: fragment that codes for a protein, being the compensation of a congenital deficiency or making a deficient gene
p.000006: non-active.
p.000006: Transgenesis can take place whereby DNA that produces antisense-RNA (anti-messenger-RNA)
p.000006:
p.000006: 2 Busciglio, J., et. al. (2002) “Altered metabolism of the amyloid beta precursor protein is associated with
p.000006: mitochondrial dysfunction in Down’s syndrome”, Neuron 33, P. 677-688.
p.000006:
...
p.000010: 10
p.000010:
p.000010: The example of the policy of compulsory vaccinations indicates that the introduction of imperative measures within the
p.000010: context of public health and imperative measures by the state is therefore not always regarded as unacceptable.
p.000010: However, negative state eugenics was responsible for misuse in the sterilisation and elimination of the mentally ill in
p.000010: the XX century.
p.000010:
p.000010: Each type of eugenics can have a negative form: elimination or reduction of undesired characteristics or a
p.000010: positive form: the promoting of characteristics regarded as desirable.
p.000010:
p.000010: This terminological approach entails no value judgement, but can serve as a starting point for discussions about
p.000010: scientific results and ethical and political standpoints.
p.000010:
p.000010: II.3. Negative eugenics by the selection of embryos and/or foetus
p.000010: II.3.1. Historical summary – Medical status questionis
p.000010:
p.000010: A new medical discipline has developed since the end of the 60's: clinical genetics. Its importance has
p.000010: greatly increased due to scientific progress and reinforced cooperation with gynaecology and obstetrics
p.000010: departments. Pregnant women with an increased risk of a child with a genetic illness can increasingly make use of
p.000010: choriocentesis. 5(11th week) or of an amniocentesis
p.000010: 6 (16th week). These methods can be used to examine if the unborn child is affected by one of the sought
p.000010: abnormalities. Other methods for prenatal diagnosis, including echography, ensure that one can identify
p.000010: abnormalities in a later stage of the pregnancy. Tracing an illness or deformity always confronts the future
p.000010: parents with the decision of whether or not to terminate the pregnancy (VPT, voluntary pregnancy termination).7
p.000010:
p.000010: Resorting to VPT can be avoided in a number of cases by a new form of prenatal diagnosis: pre- implantation genetic
p.000010: diagnostics (PGD). This form of diagnosis assumes the use of in-vitro fertilisation (IVF was introduced
p.000010: in 1978) because this form of identification takes place on embryos fertilised in vitro. Couples of which the
p.000010: unborn child has a major risk of being affected by a hereditary illness (mucoviscidosis, Duchenne's disease, etc.) can
p.000010: resort to PGD. While the embryo is at a development stage of just a few cells (usually 8), the physicians take one or
p.000010: two cells and analyse the DNA or the karyotype (number and form of the chromosomes). In-vitro fertilisation leads to
p.000010: the formation of a number of embryos, and thanks to the test one can identify embryos carrying the
p.000010: abnormality. Embryos without the disorder can then again be implanted.
p.000010: This technique dates from the start of the 90's. In 1992 the team of Alan Handyside (Hammersmith
p.000010: Hospital, London) could therefore ensure the birth of a healthy child for a couple who previously had a child suffering
p.000010: from mucoviscidosis8. Without this technique the parents would have a theoretical risk of 25% of having a child with
p.000010: this disorder.
p.000010:
p.000010: Most centres proposing PGD accept the following categories of couples:
p.000010:
p.000010: - couples with a high risk of a child that would suffer from an illness or deformity of genetic origin and who have a
p.000010: sterility problem (i.e. already candidates for IVF);
p.000010: - couples with a high genetic risk who have already undergone “traditional” prenatal, diagnostic testing and who
p.000010: have already resorted a number of times to VPT after the detection of an
p.000010:
p.000010:
p.000010: 5 Chorionic villus sampling.
p.000010: 6 Taking of amniotic fluid (fluid from around the fœtus).
p.000010: 7 For this and other information we refer we to: Hans Galjaard, Rapport du CIB sur le diagnostic génétique
p.000010: pré-implantatoire et les interventions sur la lignée germinale, Comité International de Bioéthique de
p.000010: L’Unesco (CIB), Actes, November 2002.
p.000010: 8 In 1989 the first PGD by Handyside was already involved with gender-bound diseases; it was from a
p.000010: technical perspective easier than molecular diagnosis; see: Handyside AH, Kontogianni EH, Hardy K, Winston
p.000010: RM, « Pregnancies from biopsied human preimplantation embryos sexed by Y-specific DNA amplification »,
p.000010: Nature, 1990 Apr 19;344(6268):768-70; Handyside AH, Pattinson JK, Penketh RJ, Delhanty JD, Winston RM, Tuddenham
p.000010: EG, « Biopsy of human preimplantation embryos and sexing by DNA amplification », Lancet, 1989 Feb
p.000010: 18;1(8634):347-9. Handyside, A.H. et al., Birth of a normal girl after in vitro fertilization and preimplantation
p.000010: diagnostic testing for cystic fibrosis, The New England Journal of Medicine, 1992, 327, p.905-909.
p.000010:
p.000010: Opinion no 33 of 7 November 2005 - Final version
p.000011: 11
p.000011:
p.000011: affected foetus;
p.000011: - couples with a risk of a child affected by a genetic illness or deformity and who are against VPT.
p.000011:
p.000011: At international level PGD is increasingly applied for the screening of aneuploidy and for sex selection for
p.000011: non-medical reasons9.
p.000011:
p.000011: A recent extension of PGD indications is HLA blastomer profiling, a process wrongly labelled “designer baby” by the
p.000011: media10.
p.000011:
p.000011: Preimplantation diagnosis including the variant HLA blastomer profiling raises ethical questions for which opinion will
p.000011: have to be drawn up.
p.000011:
p.000011: II.3.2. Private negative eugenics: current situation
p.000011:
p.000011: Private eugenics is a form of eugenics connected to the use of prenatal identification techniques and
p.000011: pre-implantation diagnosis. As a result, one can avoid couples having children carrying a hereditary illness or
p.000011: disability11.
p.000011:
p.000011: Current biological and medical events (medically assisted reproduction, prenatal and pre- implantation
p.000011: diagnostics, genetic treatment attempts, programme for the mapping of and sequence-determining of the human
p.000011: genome) again brought the question of eugenics to the foreground. The idea of “eugenics” itself is again raising
p.000011: concern among some.
p.000011:
p.000011: But eugenics related to progress achieved in genetics and in new techniques of medically assisted
p.000011: reproduction is not of the same nature as state eugenics as developed in pre-war Germany and in the United
p.000011: States, and that is still currently being applied in China. We may therefore not use the same terminology for
p.000011: practices with such a totally different context and purposes. State eugenics has the purpose of enforcing “the
p.000011: enhancement of the human species”.12, and that is not the case with private eugenics. Because of the emotional
p.000011: charge of the term “eugenics”, some think that one can better not use this terminology in a situation that concerns
p.000011: the freedom and autonomy of the parents. Other people believe that instead of avoiding the term
p.000011: eugenics, one must rather draw attention to the fundamental distinction between “state eugenics” and its
p.000011: derivatives on the one hand, and on the other hand contemporary techniques for diagnosis and medically
p.000011: assisted reproduction, that one can callprivate eugenics. These are indeed terms concerning radically different
p.000011: circumstances and purposes
p.000011:
p.000011: Today biotechnology is developing in the context of respect for the autonomy of the individual. The techniques used in
p.000011: negative eugenics do not change the human species. They are simply the orientation of the future of a number of
p.000011: individuals. “New eugenics” is related to technical scientific advances in genetics and medically assisted
p.000011: reproduction. It respects the individual, the free choice of the parents who by resorting to these techniques want
p.000011: children and wish to keep the risk of disabilities with the birth as minimal as possible. Genetic
p.000011: counselling – preferably before the pregnancy - consists of determining the risk of having a child with
p.000011: a specific illness, and informing the parents about the possibility of prenatal diagnosis (PD) or
p.000011:
p.000011: 9 Sermon, K., Moutou, C., Harper, J. et al. (2004), “ESHRE PGD Consortium data collection IV: May -
p.000011: December 2001” in Human Reproduction 20 (1): 19-34.
p.000011: 10 For this technique: see G. Pennings, R. Schots and I. Liebaers, Ethical considerations on preimplantation genetic
p.000011: diagnosis for HLA typing to match a future child as a donor of haematopoietic stem cells to a sibling in Human
p.000011: Reproduction, Vol.17, nr. 3, 534-538, 2002.
p.000011: 11 Carol, Anne, « Histoire de l’eugénisme en France », Parijs, Seuil, 1995; Duster, T., « Retour à
p.000011: l’eugénisme », (traduit de l’anglais par Colette Estin), Paris, Kimé, 1992 ; Missa, J.-N. et Susanne, C., « De
p.000011: l’eugénisme d’Etat à l’eugénisme privé », De Boeck, 1999 ; Taguieff, P.-A., « Retour sur l’eugénisme,
p.000011: question de définition » in Esprit, n° 200, Paris, Mars-Avril 1994 ; Testart, J., « Le désir du gène », Editions
p.000011: François Bourin, 1992 ; Thomas, J.-P., « Les fondements de l’eugénisme », Presses Universitaires de France,
p.000011: Parijs, 1995.
p.000011: 12 “L’individu n’est rien, l’espèce est tout ”wrote eugenist, Nobel Prize winner and physiologist Charles
p.000011: Richet in 1922. This idea was later adopted in a racist form in the motto of the Nazis: “du bist nichts, dein Volk ist
p.000011: alles” “you are nothing, your people is everything”.
p.000011:
p.000011: Opinion no 33 of 7 November 2005 - Final version
p.000012: 12
p.000012:
p.000012: pre-implantation genetic diagnosis (PGD), and the implications of these diagnoses. If no therapeutic
p.000012: solution exists for the abnormality diagnosed during the pregnancy, and if the parents and professionals
p.000012: consider this a serious abnormality, the result will usually be voluntary pregnancy termination. Abortion
p.000012: can be applied with chromosomal aberrations (mongolism, etc.) or with serious metabolic disorders (Tay-Sachs
p.000012: Disease, etc.). The technique of prenatal diagnosis leads to the practice of negative eugenics, so one prevents
p.000012: children being born who suffer from serious abnormalities. Parallel to this the right to abortion is given legal
p.000012: support in very many countries: Great Britain (1967), United States (1973), France (1975), the Netherlands (1981),
p.000012: Belgium (1990), etc.
p.000012:
p.000012: II.3.3. Ethical considerations
p.000012:
p.000012: II.3.3.1.
p.000012: Certain groups in society are completely against any form of eugenics, collective and private.
p.000012:
p.000012: - The essential argument is based on the consideration of the embryo to be a human person from fertilisation
p.000012: (standpoint mentioned by the Committee in opinion no. 18 of 16 September 2002, chapter IV, item 4.2.1.) or that
p.000012: it has sufficient personality characteristics so the termination of its further development should be completely
p.000012: forbidden. This implies that VPT is not acceptable, even in the case of illness or serious deformations.
p.000012: These people deem PGD unacceptable because this implies that selection has occurred, and that this has the
p.000012: inevitable effect of certain embryos being eliminated.
p.000012: - They also put forward the idea that the acceptance of private eugenics deviously puts pressure on women who refuse
p.000012: these techniques. This would lead to imperative collective eugenics that, due to economic or cultural pressure, would
p.000012: be similar to state eugenics.
p.000012: - Finally, they suggest that the importance attached to the avoidance of the birth of a child with an abnormality
p.000012: would have a negative influence on our attitude to disabled children already born, and the care they
p.000012: receive.13
p.000012:
p.000012: Some members have the following remarks.
p.000012: The first argument is based on an extreme standpoint about the status of the embryo and the foetus.
p.000012: The second argument refers to an unavoidable phenomenon. From the time of a value being accepted by the majority of the
p.000012: people, one perceives a tendency to follow the movement. The evaluation of this process depends on the value one
p.000012: attaches to one of the standpoints taken. For a number of years, some Dutch, strongly protestants villages did not
p.000012: accept vaccinations against poliomyelitis. After having seen the baleful consequences of their non-acceptance with
...
p.000031: hyperindividualistic or collective egoism, or to the capacity of compassion in the sense of co- living. This is
p.000031: therefore everything but a false debate without a view of reality. What is wrong is the widespread notion that a
p.000031: “genetic defect” and its phenotypical manifestation are by definition social non-values, a catastrophe for
p.000031: the families and a professional failure by the therapist.
p.000031:
p.000031: Even if there has not yet been a wide debate about the modern eugenistic risk, general prenatal screening is already
p.000031: a reality. Without wanting to take a step back in this evolution (that is highly beneficial to the health
p.000031: of individuals), we must determine that should matters come so far that PGD 54 and prenatal screening 55 of
p.000031: chromosomal anomalies or otherwise would be systematically proposed and even made compulsory, the nature of
p.000031: the medical action would fundamentally change: medical treatment would then no longer be a curative and
p.000031: preventive individual medical approach, but would de facto come under a more or less imperative public health approach.
p.000031: And because the concept of public health has evolved, we would remind that the public health approach has in principle
p.000031: two objectives: firstly to make the medical care market more efficient and therefore rationalise its operation,
p.000031: and secondly de facto reduce the risk that an illness occurs and therefore anticipate pathological
p.000031: phenomenon. The – medical and financial – risk and the knowledge of that risk are therefore central to the public
p.000031: health approach, and require epidemiological research and public action to reduce that risk.
p.000031: There are therefore three reasons to transfer the public health approach from the exclusive
p.000031: medical-scientific arena to the political arena.
p.000031: Firstly the health approach aims at social change: a return to normal by the elimination of a situation considered
p.000031: undesirable (the illness) thanks to a change in the pathogenic human
p.000031:
p.000031:
p.000031: 54 We must however add that PGD de facto reduces the need for the application of therapeutic germinal gene therapy.
p.000031: 55 What is the legal framework for PGD and prenatal screening? PGD enables the avoidance of the birth of a child with
p.000031: a genetic abnormality detected in the embryo in vitro by not implanting an embryo that is the carrier of the
p.000031: identified anomaly, and therefore prevents an abortion. The legitimacy of this practice results a
p.000031: contrario – as necessary – from article 5 of the law of 11 May 2003, that only allows the
p.000031: implantation of people with embryos on which research is conducted provided that that research brings a benefit to the
p.000031: embryo itself.
p.000031: But the law only concerns embryos in vitro and not embryos in utero. If a genetic illness is detected,
p.000031: prenatal screening enables abortion (voluntary pregnancy termination) to take place when “it is
p.000031: established that the child to be born will be suffering from an extremely serious illness that is recognised as
p.000031: incurable at the time of the diagnosis” (art. 2,4° of the law of 3 April 1990 concerning pregnancy
p.000031: termination).
p.000031:
p.000031: Opinion no 33 of 7 November 2005 - Final version
p.000032: 32
p.000032:
p.000032: behaviour.56
p.000032: Secondly the public health approach entails the anticipation of the prevention of an illness where the
p.000032: illness must be defined as a public health problem of which the causes are scientifically and/or
p.000032: technically established. This is, however, with the understanding that the conscience of scientists or technical
p.000032: experts is not equal to the public conscience. At this stage we would like to remind of the terrible responsibility of
p.000032: experts in predictive medicine with its constantly more numerous genetic tests. Prediction is indeed a good
p.000032: aspect if it serves as prevention, but it is dangerous if there is an obligation to release the prediction
p.000032: outside the private domain to map the “biological destiny” of a person to be potentially insured.
p.000032: Thirdly, an action by the authorities in answer to a public health problem (just like any social policy from an
p.000032: authority) is given shape by a redistribution of goods and services for populations defined by the
p.000032: characteristics of the problem to be solved: “who gets what and how does this happen?” And to answer the question, a
p.000032: minimum of scientific orthodoxy must be respected by requiring experimental proof that there is a causal
p.000032: connection between a risk factor and an illness (for example smoking and lung cancer, trisomy 21 and mongolism!).
p.000032: But one must also assess the impact of the health care expenses by the statistical or
p.000032: epidemiological improvement of a series of disorders. Such an evaluation of the goods and services
p.000032: subsequently makes it possible to more fairly redistribute the benefits 57 and share the costs, either (ideally) in an
p.000032: incentive form or in a more or less imperative form.
p.000032:
p.000032: Willingly or unwillingly, with regard to handicaps of genetic origin we must raise the question of whether the gradual
p.000032: transition of public health to a more imperative approach does not involve the risk that in the name of the
p.000032: public health a new eugenics originates, sometimes called “democratic eugenics”. This is “democratic eugenics”
p.000032: for which the scientific and the political world will have to assume responsibility because they will both
p.000032: have been at its basis: the scientist by discharging him/herself of the ethical aspect of his activity
p.000032: and discarding the social significance of the activity, and the politician by hiding behind the opinion
p.000032: of the scientific expert in a time of changing and increasingly segmented knowledge 58. It is exactly for this
p.000032: reason that we deliberately cite the example of the connection between smoking and lung cancer besides the example of
p.000032: the connection between trisomy 21 and mongolism. From the analogy it indeed appears how easily one could
...
p.000034: gene of the protein amyloid that with Alzheimer deposits in the brain then diverges depending on the
p.000034: information contained in the mitochondrial genome;
p.000034: - the imprinting of the genome: the fact that the expression of a gene differs depending on if it originates
p.000034: from the father or the mother;
p.000034: - the modulation of the effects of the products of a gene by internal or external ambient factors.
p.000034:
p.000034: Opinion no 33 of 7 November 2005 - Final version
p.000035: 35
p.000035:
p.000035: others. The current development of functional genomics requires a greater sense of responsibility
p.000035: when using genetic instruments for curative or enhancement purposes. This can entail the inadequateness of eugenics
p.000035: that is based on germinal line gene modification.
p.000035:
p.000035: IV. 2.3.2.
p.000035: As regards private eugenics these members in the first instance consider it necessary to clarify what genetic changes
p.000035: in the germ line could result in. Here two types of changes are considered. The first type concerns
p.000035: the “correction” of monogenic genetic disorders such as mucoviscidosis, myopathy of Duchenne, chorea of
p.000035: Huntington. The second type concerns genetic modification of germ line cells for the purposes of “optimisation”.
p.000035:
p.000035: As far as monogenic genetic illnesses are concerned, information infers that IVF in combination with preimplantation
p.000035: diagnostics (PGD) strongly reduces the risk of the birth of a child with such a hereditary illness in
p.000035: families where the risk is real. The need for gene therapy on cells of the germ line is as a result very
p.000035: limited. Despite the possibilities of PGD, however, a small number of children will still be born with
p.000035: a hereditary illness. A mutation can indeed occur during the production of the cells of the germ line or in the
p.000035: course of the very first development stages. The children should be able to be helped with the therapeutic genetic
p.000035: modification of somatic cells (see chapter III of this opinion).
p.000035:
p.000035: Enhancement genetic modification in the germ line on its part would, according to literature, be particularly aimed
p.000035: at sporting, intellectual, cognitive, emotional, behaviour-bound and psychological performance (access to
p.000035: happiness). These parameters do not only depend on the genome, but mainly on epigenetic processes that
p.000035: function in extremely complex and particularly plastic networks. This also concerns factors loaded with
p.000035: individual and social values, with a strong cultural component.
p.000035: Assumptions about controlling physical, spiritual or behavioural performance in humans by gene manipulation
p.000035: in the germ line are currently based on pure conjecture. There is for that matter another transgenerational aspect:
p.000035: genetic modification would be forced upon certain individuals of the offspring whose nuclear and mitochondrial
p.000035: environment and epigenetic cell environment is still unknown, and that would have unpredictable consequences on the
p.000035: resulting phenotype, without account being able to be taken of the requirements and environment with which the
p.000035: offspring will be confronted.
p.000035:
...
p.000036:
p.000036: Conclusion
p.000036: The members are not in principle against genetic modification in the germ line with a therapeutic
p.000036: purpose, even if they see this as unrealistic in view of the current development of knowledge. They nevertheless
p.000036: believe that this area does not call for priority in applied research, medicine or specific legislation.
p.000036: Fundamental research in this rapidly changing sector should be continued.
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036: Opinion no 33 of 7 November 2005 - Final version
p.000037: 37
p.000037:
p.000037: CHAPTER V. CONCLUSIONS AND RECOMMENDATIONS
p.000037:
p.000037: The Advisory Committee on Bioethics has expanded its considerations on the “gene therapy” concept by discussing all
p.000037: modifications of the genome, with both a curative purpose and enhancing purpose. The Committee wishes to
p.000037: hereby answer the request for opinion from the Senate in which reference is made to pathological and non-pathological
p.000037: genetic characteristics.
p.000037:
p.000037: As regards eugenics, the members of the Committee are of the opinion that the private selection of
p.000037: eugenics related to the use of prenatal diagnosis (PD) or pre-implantation diagnosis (PGD) is in principle acceptable,
p.000037: providing that one applies certain standards in accordance with the severity of the illness (or abnormality). The
p.000037: informed consent of the parents (or the mother) must also be obtained, and there must be an adequate framework as
p.000037: regards follow-up and the provision of information. The ethical considerations raised by these techniques
p.000037: will be discussed in a separate report.
p.000037: This report therefore concerns the therapeutic or enhancement/optimising modification of the somatic or germinal
p.000037: genome.
p.000037:
p.000037: V. 1. Therapeutic somatic gene modification
p.000037: Therapeutic gene modification has up to the present barely seen successful application. Clinical applications and
p.000037: experience in this matter are insufficient to be able to evaluate its concrete perspectives.
p.000037: The most important clinical application concerns immune-deficient children in a sterile environment. The
p.000037: treatment was recently suspended for the second time because of side effects, and is currently being further
p.000037: investigated.
p.000037: The expectations of somatic gene therapy are, however, great, so great that research is being actively continued.
p.000037:
p.000037: For ethical considerations relating to the clinical application of this technique, the Committee refers to its report
p.000037: no. 13 of 9 July 2001 concerning experiments with persons.
p.000037: The Committee is of the opinion that its ethical evaluation is also applicable to therapeutic gene therapy.
p.000037: More specifically, the Committee considers it important to ensure the safety and efficiency of each clinical
...
Health / Physically Ill
Searching for indicator sick:
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p.000016: The chosen domain of gene therapies is made up of monogenic hereditary diseases which can be continuously better
p.000016: understood thanks to the development of genome analyses.
p.000016:
p.000016: Other potential domains are also being envisaged, representing an important scientific and medical challenge
p.000016: of our time. This concerns:
p.000016:
p.000016: - cancer (by the reinforcement of the immune system or destruction of the cancer cells, etc.);
p.000016: - neurodegenerative diseases (e.g. Parkinson's disease Alzheimer's);
p.000016: - heart and vascular diseases;
p.000016: - autoimmune diseases;
p.000016: - infectious diseases;
p.000016: - other disorders for which medical treatments are not yet satisfactory.
p.000016:
p.000016: All somatic cells of the organism should be able to be treated in a specific way with genetic treatments, and this
p.000016: depending on the disorder. Accordingly, muscle cells should be able to be corrected for patients with muscular
p.000016: dystrophy, the epithelium of the airways among patients suffering from mucoviscidosis, as well as stem cells of
p.000016: different cancers.
p.000016:
p.000016: Gene therapy could potentially be applied to all disorders. But with the current level of knowledge and
p.000016: practice these are still distant perspectives.
p.000016:
p.000016: Specific difficulties occur for each treated pathology, for each transferred gene sequence and for each vector type.
p.000016:
p.000016: 1. The choice of the gene to be transferred. This approach is simpler for monogenic diseases, but much
p.000016: more problematic for other, multigene and multifactor diseases (e.g. cancer).
p.000016:
p.000016: 2. The targeting of the sick cells which must receive the gene. The targeting of white blood
p.000016: corpuscles goes relatively smoothly, for example; but targeting adult stem cells of the epithelium of the pulmonary
p.000016: system for the purposes of treatment of mucoviscidosis is still a long way from reality.
p.000016:
p.000016: 3. Control of gene expression, this means obtaining the protein in the correct quantity and for the required
p.000016: duration. For example the treatment of diabetes type 1 with insulin of which production must be modulated by the
p.000016: sugar level in the blood. One should, among other things, prevent the therapeutic effect from being
p.000016: blocked by different mechanisms such as rejection or inhibition of the production of the protein.
p.000016:
p.000016: 4. The avoidance of side-effects. The most important side-effects observed so far:
p.000016: - unsuitable immune response
p.000016: Such a case occurred during an experimental gene therapy test treatment in the US, where the
p.000016: introduction of a vector originating from an adenovirus led to an inflammation from which the
p.000016: patient died.
p.000016: - « Mutagenesis by insertion » in other words the integration of the therapeutic gene in the sick cell at a
p.000016: certain place in the chromosome, with the deregulation of the
p.000016:
p.000016:
p.000016: Opinion no 33 of 7 November 2005 - Final version
p.000017: 17
p.000017:
p.000017: introduced gene or an adjacent gene as a consequence 17..
p.000017: The ideal option would consist of one preventing this risk by substituting the deficient gene by the healthy gene that
p.000017: one introduces by “genetic cibling”, or using “homologous recombination”. Up until the present one has still not been
p.000017: able to correctly introduce a transgene in the genome of a person, but this is being widely experimented.
p.000017:
p.000017: 5. A scientific key question for the success of gene therapies concerns the mechanism to supply the gene in the
p.000017: sick cell, in other words the vector. The most effective vectors are viruses, but they have their disadvantages as we
p.000017: have mentioned earlier. Research is taking place into other transport mechanisms (for example liposomes).
p.000017:
p.000017:
p.000017: To sum up
p.000017: After 30 years of research and 14 years of clinical applications the successes of somatic gene therapy still remains
p.000017: limited, but expectations remain high.
p.000017: We are still not far enough to properly assess somatic gene therapies. These techniques are still applied on a low
p.000017: scale, and their future development requires a rigorous scientific and clinical approach. To this end, just as in all
p.000017: medical research, rules of good practice must be observed to ensure the safety and effectiveness of the clinical
p.000017: applications. In particular, the relationship between benefit and risk to the patient must be meticulously explored,
p.000017: and great caution must be exercised in this domain that intervenes in the core of life itself, with an influence on
p.000017: the identity of the person him/herself.
p.000017: Analysis of the clinical trials of A. Fischer at the Necker hospital do, however, seem to demonstrate
p.000017: that the analysis of benefit and risk to the patient amply warrant the continuation of work relating to somatic gene
p.000017: therapies.
p.000017: It is indeed because this analysis remains positive that the Agence française de sécurité sanitaire des
p.000017: produits de santé (AFSSAPS) (that had suspended all abovementioned testing in October 2002 because of the side-effects)
...
p.000030: than the risk that therapeutic gene therapy moves towards optimising/enhancement gene modification. The latter
p.000030: has no therapeutic purpose, but consists of the application of changes to the human genome from which improvements are
p.000030: hoped for. In a nutshell, if we were to consent to potential therapeutic progress, meaning therapeutic
p.000030: somatic gene modification, would we then inevitably also consent to genetic changes in the germ line?
p.000030: It is not out of technophobia that contemporary culture and societies increasing seem to realise
p.000030: - or even desire – that medicine expands its traditional role and fits in a medicalised technical- industrial culture,
p.000030: that aims for the measured ‘improvement’ of physical and biological welfare in the name of an individualised consumer
p.000030: technology. Consequently, the lines between pure therapeutic or curative medicine and the so-called enhancing
p.000030: modification (‘enhancement technology’) fade – and that also applies a fortiori to the (still virtual) domain of
p.000030: germinal gene modification. Society in the broad sense – and not only the medical world – is therefore
p.000030: confronted with the question of if it is inevitable (casu quo desirable) that medicine exercises such a practice of
p.000030: optimisation (of the individual or of the human species), that contrasts with traditional medical ‘care’ (in which the
p.000030: accent lies on the sick individual or on public health). Some members accordingly ask themselves if it is
p.000030: desirable to tolerate physicians departing from their traditional assignment for the purpose of improving
p.000030: life itself? Or whether it is desirable that we allow physicians to penetrate our privacy and make known our
p.000030: organic secrets
p.000030: – and even genetic defects – out of concern for public health? As far as the members are concerned,
p.000030: such questions form the actual starting points for debates about modern eugenics, now knowledge and new technical
p.000030: resources open possibilities of innovative (but not yet validated) germinal activities on “life” - that has
p.000030: become a technical-scientific subject - with the purpose of making life more healthy or “improving” it.
p.000030: Providing that the conditions for gene modification obtain a deontologic and legal framework that is strict, serene and
p.000030: evolutive, according to the members it must be possible to restrain any lapses and counter the argumentative
p.000030: automatisms in the style of the ‘slippery slope’ 52. They are very aware that the impression of a downward slide
p.000030: resonates against the traditional fear of the unknown, that is here accompanied by the modern fear of what
p.000030: we could cause amongst ourselves; so - sometimes unfounded - concern is aroused among public opinion.53
p.000030:
p.000030: The same members also believe (since the present opinion is an answer to an interpellation of the Advisory Committee on
p.000030: Bioethics by the political world) that we cannot pass the question as to what place handicaps of genetic origin have in
...
Health / Pregnant
Searching for indicator pregnant:
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p.000009: whole population or the human species have generally been put to question, or even regarded as unacceptable. On the
p.000009: other hand, developments in human genetics have given individuals and families the resources to avoid the
p.000009: birth of genetically disabled individuals, to accordingly improve individual and family welfare. To help clarify the
p.000009: discussion it seems sensible to continue using the term ‘eugenics’ subject to the introduction of appropriate
p.000009: distinctions.
p.000009:
p.000009: Individual eugenics or micro-eugenics, private eugenics and even liberal eugenics.
p.000009: This involves a selection phenomenon at an individual level. We would mention the decision of a couple
p.000009: regarding the conception, implantation or birth of a child who is a carrier of a genetic disorder that leads to a
p.000009: physical or mental disability. Another example is research (currently with few promising results) into sperm
p.000009: or embryos of “superior quality” (for example as regards IQ) or possible future attempts to create
p.000009: genetically “optimised/enhanced” embryos. One can also add to this: the example of the informing of future spouses
p.000009: about being the carrier of the same harmful, recessive gene, to allow them to avoid an offspring affected by
p.000009: thalassemia, or pre-implantation or prenatal diagnosis during a pregnancy with a such a couple. Finally, there
p.000009: is the prenatal diagnosis of a pregnant woman from a certain age.
p.000009:
p.000009: Social eugenics or macro-eugenics or even collective eugenics.
p.000009: This is aimed at the introduction of measures with the purpose or consequence of reducing the number of
p.000009: genetic defects or increasing the number of advantageous characteristics in a specific population or
p.000009: within the whole human species. One can distinguish two kinds.
p.000009:
p.000009: - Non-compelling macro-eugenics meaning at the level of society information is made available about
p.000009: genetics, and one encourages and supports people taking eugenistic decisions without actually compelling
p.000009: them. In the current situation this can concern making tracing methods available for damaged genes, genetic
p.000009: counselling, the reducing of resistance to the termination of the pregnancy after pre-implantation diagnosis (PGD) or
p.000009: after the termination of the pregnancy after prenatal diagnosis (PD), etc.
p.000009:
p.000009: - Compelling macro-eugenics, sometimes called state eugenics. This involves
p.000009: the introduction of imperative measures at state level. Here the freedom of the individual or the couple is
p.000009: affected. One can interpret the prohibition of marriages between blood relations for genetic reasons as a form of
p.000009: this type of macro-eugenics.
p.000009:
p.000009:
p.000009: 4 The Descent of Man, General Summary, Publisher The Great Books, p. 596
p.000009:
p.000009: Opinion no 33 of 7 November 2005 - Final version
p.000010: 10
p.000010:
p.000010: The example of the policy of compulsory vaccinations indicates that the introduction of imperative measures within the
p.000010: context of public health and imperative measures by the state is therefore not always regarded as unacceptable.
p.000010: However, negative state eugenics was responsible for misuse in the sterilisation and elimination of the mentally ill in
p.000010: the XX century.
p.000010:
p.000010: Each type of eugenics can have a negative form: elimination or reduction of undesired characteristics or a
p.000010: positive form: the promoting of characteristics regarded as desirable.
p.000010:
p.000010: This terminological approach entails no value judgement, but can serve as a starting point for discussions about
p.000010: scientific results and ethical and political standpoints.
p.000010:
p.000010: II.3. Negative eugenics by the selection of embryos and/or foetus
p.000010: II.3.1. Historical summary – Medical status questionis
p.000010:
p.000010: A new medical discipline has developed since the end of the 60's: clinical genetics. Its importance has
p.000010: greatly increased due to scientific progress and reinforced cooperation with gynaecology and obstetrics
p.000010: departments. Pregnant women with an increased risk of a child with a genetic illness can increasingly make use of
p.000010: choriocentesis. 5(11th week) or of an amniocentesis
p.000010: 6 (16th week). These methods can be used to examine if the unborn child is affected by one of the sought
p.000010: abnormalities. Other methods for prenatal diagnosis, including echography, ensure that one can identify
p.000010: abnormalities in a later stage of the pregnancy. Tracing an illness or deformity always confronts the future
p.000010: parents with the decision of whether or not to terminate the pregnancy (VPT, voluntary pregnancy termination).7
p.000010:
p.000010: Resorting to VPT can be avoided in a number of cases by a new form of prenatal diagnosis: pre- implantation genetic
p.000010: diagnostics (PGD). This form of diagnosis assumes the use of in-vitro fertilisation (IVF was introduced
p.000010: in 1978) because this form of identification takes place on embryos fertilised in vitro. Couples of which the
p.000010: unborn child has a major risk of being affected by a hereditary illness (mucoviscidosis, Duchenne's disease, etc.) can
p.000010: resort to PGD. While the embryo is at a development stage of just a few cells (usually 8), the physicians take one or
...
p.000032: on the one hand chronic disorders that are the consequence of individual or social irresponsibility, such
p.000032: as alcoholism or smoking, and on the other hand constitutionally determined handicaps of the genetically
p.000032: underprivileged, will be systematically mixed and deliberately thrown on the same heap (because this is
p.000032: economically cost-effective and socially desirable)?
p.000032: Let us continue with our analysis. The health approach can indeed (in the name of certain progress of
p.000032: technical science which one day may cover the possibilities of therapeutic and optimising/enhancement
p.000032: germinal line gene modification) sometimes stealthily apply a certain amount of force. Since the seventies,
p.000032: thanks to the active association of feminism and liberalism the woman has clearly obtained the right to
p.000032: dispose of her own body. That is irrefutable progress. But what is less obvious is any eugenistic excrescence
p.000032: being avoided by putting the responsibility for abortion for medical reason (for example established
p.000032: trisomy) solely with the woman!61,62 The right of the woman to dispose of her own body and in all
p.000032:
p.000032: 56 What exactly does “changing the pathogenic human behaviour in the subject that we are concerned
p.000032: with” mean? Does pathogenic human behaviour in the case of, for example, trisomy 21 consist of the refusal
p.000032: to have a 45-year-old woman tested for the risk of trisomy, or the fact of her becoming pregnant at that age? The
p.000032: implicit risk of a health approach that would assume a more or less imperative definition of pathogenic human behaviour
p.000032: is quite clear.
p.000032: 57 The question of fairer redistribution of the limited health care resources raises another question: is the public
p.000032: financing of gene therapies a real priority at present, all the more as private financing is becoming increasingly
p.000032: rare?
p.000032: 58 The politician calls upon the expert because the politician does not have the knowledge; but he
p.000032: nevertheless remains the one who decides, because he will ultimately make the choice… and must therefore
p.000032: take responsibility.
p.000032: 59 “Hygiéniquement correct”, an expression used by Pierre Ronsanvallon in analogy of “politically correct” in his
p.000032: book La Nouvelle question sociale – Repenser L’Etat-Providence, Seuil, 1995.
p.000032: 60 Two totally different situations, medical and social, behavioural and chronological and toxicological and genetic.
p.000032: 61 B. Andrieu. Médecin de son corps, PUF, Parijs, 1999.
p.000032:
p.000032: Opinion no 33 of 7 November 2005 - Final version
p.000033: 33
p.000033:
p.000033: conscience decide to end her pregnancy may obviously not be a subject for discussion. It is very fortunate that the
p.000033: woman today has the right to decide about the quality of the child to be born, and all surveys confirm
...
Health / Terminally Ill
Searching for indicator terminal:
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p.000014:
p.000014: Opinion no 33 of 7 November 2005 - Final version
p.000015: 15
p.000015:
p.000015: CHAPTER III. SOMATIC GENE MODIFICATION
p.000015: Somatic gene therapy concentrates on somatic cells and has, in principle and according to our current knowledge, no
p.000015: consequences for the offspring. The damaged gene is corrected by using a DNA fragment as a ‘medicine’ or ‘gene
p.000015: prosthesis’. By placing this type of gene in the cells to be corrected one hopes to cure patients suffering from a
p.000015: genetic disorder.
p.000015:
p.000015: III.1. Historical summary - Medical status quaestionis
p.000015: It was soon very clear that one of the determining factors for the success of gene therapy would be the efficiency with
p.000015: which the corrective gene would penetrate the cells to be treated. Since 1977 retroviruses have been uses as vectors.
p.000015: These vectors contain a short genome that codes for proteins of which only a part is responsible for their virulence.
p.000015: In the vectors derived from these viruses the virulence genes are suppressed and replaced by a corrective DNA fragment.
p.000015: Because of the problems incontred with these vectors (see below), other transport systems such as synthetic lipids
p.000015: called liposomes (for respiratory disorders), other viruses (adenoviruses, AAV, etc.) or “plasmids”
p.000015: (circular DNA that autonomously replicates in bacteria and is often transferable to other cells) were used.
p.000015:
p.000015: After very many tests on cells in culture and on laboratory animals the first tests for the
p.000015: introduction of a gene in a live human took place in May 1989. It was carried out in the United States by Stuart
p.000015: Rosenberg's team. It concerned patients in a terminal stage for whom no “therapeutic” effect was
p.000015: expected. The gene introduced coded for a protein that induced resistance to antibiotics. The purpose of
p.000015: this study was to examine whether this gene was functional and if a protein would be made by this gene.
p.000015:
p.000015: Gene therapy became a real experimental therapy from the 90's. In September 1990 the American NIH
p.000015: (National Institutes or Health) gave the team led by W.F. Anderson and M.B. Blaese (Bethesda, US)
p.000015: permission for the first tests relating to somatic gene therapy among people, in other words for the first,
p.000015: direct curative intervention on the human genome. With this intervention one aimed to cure a girl or at least alleviate
p.000015: her suffering. The girl suffered from a serious immunodeficiency as a result of a genetic abnormality. This
p.000015: was a deficiency of adenosine deaminase (ADA), so the person affected had practically no resistance to
p.000015: the pathogens to which she was exposed 14.
p.000015: - In January 1991, with the permission of the Recombinant DNA Advisory Committee of the NIH, the team of S. Rosenberg
p.000015: (Bethesda, VSA) used gene therapy to cure two patients who were suffering from a malignant melanoma in a
p.000015: terminal stage 15.
p.000015: The test had no positive result, but cancer became a preferential target for gene therapy.
p.000015:
p.000015: A first therapeutic success was recorded in 1993 in the US with a woman with serious family hypercholesterolaemia.
p.000015:
p.000015: In the course of the nineties numerous somatic gene therapy tests were conducted worldwide (in an experimental way) but
p.000015: the really prominent successes were recorded by the French team of Alain Fischer and Marina Cavazzana-Calvo. 16, from
p.000015: 1999. For the first time in the world the team successfully treated “bébés-bulle” (babies growing up in a
p.000015: sterile space) who were
p.000015:
p.000015:
p.000015: 14 The therapy of Anderson and Blaese consisted mainly in the changing of the genetic instructions of the T
p.000015: lymphocytes of the patient, to then restore normal production of the ADA enzyme and in turn have the immune functions
p.000015: again work satisfactorily. A clinical improvement was established as a result of this treatment.
p.000015: 15 In this therapeutic test protocol the gene that codes for the “tumour necrosis factor” – a substance with a
p.000015: powerful antitumoral effect – was introduced in a special class of lymphocytes, the “Tumour infiltrating lymphocytes”
p.000015: (TIL).
p.000015: 16 Fischer, A., Hacein-Bey, S and Cavazzana-Calvo, M 2002, “Gene therapy of severe combined
p.000015: immunodeficiencies”, Nat. Rev. Immunol. 2,615-21.
p.000015: Hacein-Bey-Abina, S., Le Deist, F., Carlier, F., Bouneaud, C., Hue, C., De Villartay, J.P., Thrasier,
p.000015: A.J., Wulfraat, N., Sorensen, R., Dupuis-Girod, S., Fischer A. and Cavazzana-Calvo, M. 2002, “Sustained
...
Health / alcoholism
Searching for indicator alcoholism:
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p.000032: incentive form or in a more or less imperative form.
p.000032:
p.000032: Willingly or unwillingly, with regard to handicaps of genetic origin we must raise the question of whether the gradual
p.000032: transition of public health to a more imperative approach does not involve the risk that in the name of the
p.000032: public health a new eugenics originates, sometimes called “democratic eugenics”. This is “democratic eugenics”
p.000032: for which the scientific and the political world will have to assume responsibility because they will both
p.000032: have been at its basis: the scientist by discharging him/herself of the ethical aspect of his activity
p.000032: and discarding the social significance of the activity, and the politician by hiding behind the opinion
p.000032: of the scientific expert in a time of changing and increasingly segmented knowledge 58. It is exactly for this
p.000032: reason that we deliberately cite the example of the connection between smoking and lung cancer besides the example of
p.000032: the connection between trisomy 21 and mongolism. From the analogy it indeed appears how easily one could
p.000032: arrive at the application of “hygienically correct” 59 thinking to two totally different situations 60, in the
p.000032: name of the public health. We must therefore fundamentally dare to raise another question: how long will it be before
p.000032: on the one hand chronic disorders that are the consequence of individual or social irresponsibility, such
p.000032: as alcoholism or smoking, and on the other hand constitutionally determined handicaps of the genetically
p.000032: underprivileged, will be systematically mixed and deliberately thrown on the same heap (because this is
p.000032: economically cost-effective and socially desirable)?
p.000032: Let us continue with our analysis. The health approach can indeed (in the name of certain progress of
p.000032: technical science which one day may cover the possibilities of therapeutic and optimising/enhancement
p.000032: germinal line gene modification) sometimes stealthily apply a certain amount of force. Since the seventies,
p.000032: thanks to the active association of feminism and liberalism the woman has clearly obtained the right to
p.000032: dispose of her own body. That is irrefutable progress. But what is less obvious is any eugenistic excrescence
p.000032: being avoided by putting the responsibility for abortion for medical reason (for example established
p.000032: trisomy) solely with the woman!61,62 The right of the woman to dispose of her own body and in all
p.000032:
p.000032: 56 What exactly does “changing the pathogenic human behaviour in the subject that we are concerned
p.000032: with” mean? Does pathogenic human behaviour in the case of, for example, trisomy 21 consist of the refusal
p.000032: to have a 45-year-old woman tested for the risk of trisomy, or the fact of her becoming pregnant at that age? The
p.000032: implicit risk of a health approach that would assume a more or less imperative definition of pathogenic human behaviour
p.000032: is quite clear.
...
Health / ill
Searching for indicator ill:
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p.000009: within the whole human species. One can distinguish two kinds.
p.000009:
p.000009: - Non-compelling macro-eugenics meaning at the level of society information is made available about
p.000009: genetics, and one encourages and supports people taking eugenistic decisions without actually compelling
p.000009: them. In the current situation this can concern making tracing methods available for damaged genes, genetic
p.000009: counselling, the reducing of resistance to the termination of the pregnancy after pre-implantation diagnosis (PGD) or
p.000009: after the termination of the pregnancy after prenatal diagnosis (PD), etc.
p.000009:
p.000009: - Compelling macro-eugenics, sometimes called state eugenics. This involves
p.000009: the introduction of imperative measures at state level. Here the freedom of the individual or the couple is
p.000009: affected. One can interpret the prohibition of marriages between blood relations for genetic reasons as a form of
p.000009: this type of macro-eugenics.
p.000009:
p.000009:
p.000009: 4 The Descent of Man, General Summary, Publisher The Great Books, p. 596
p.000009:
p.000009: Opinion no 33 of 7 November 2005 - Final version
p.000010: 10
p.000010:
p.000010: The example of the policy of compulsory vaccinations indicates that the introduction of imperative measures within the
p.000010: context of public health and imperative measures by the state is therefore not always regarded as unacceptable.
p.000010: However, negative state eugenics was responsible for misuse in the sterilisation and elimination of the mentally ill in
p.000010: the XX century.
p.000010:
p.000010: Each type of eugenics can have a negative form: elimination or reduction of undesired characteristics or a
p.000010: positive form: the promoting of characteristics regarded as desirable.
p.000010:
p.000010: This terminological approach entails no value judgement, but can serve as a starting point for discussions about
p.000010: scientific results and ethical and political standpoints.
p.000010:
p.000010: II.3. Negative eugenics by the selection of embryos and/or foetus
p.000010: II.3.1. Historical summary – Medical status questionis
p.000010:
p.000010: A new medical discipline has developed since the end of the 60's: clinical genetics. Its importance has
p.000010: greatly increased due to scientific progress and reinforced cooperation with gynaecology and obstetrics
p.000010: departments. Pregnant women with an increased risk of a child with a genetic illness can increasingly make use of
p.000010: choriocentesis. 5(11th week) or of an amniocentesis
p.000010: 6 (16th week). These methods can be used to examine if the unborn child is affected by one of the sought
p.000010: abnormalities. Other methods for prenatal diagnosis, including echography, ensure that one can identify
p.000010: abnormalities in a later stage of the pregnancy. Tracing an illness or deformity always confronts the future
...
Health / stem cells
Searching for indicator stem cells:
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p.000002:
p.000002: The undersigned request the Belgian Advisory Committee on Bioethics to, within the period determined in the
p.000002: aforementioned Agreement of Cooperation, present its recommendations in the light of the abovementioned
p.000002: legislative proposals concerning:
p.000002:
p.000002: - the concepts “embryo” and “pre-embryo”;
p.000002: - the concept “research” in the sense of article 18 of the aforementioned Treaty;
p.000002: - the concept of “adequate protection” of the embryo and pre-embryo;
p.000002: - the implications and risks of the uses of modern biotechnology with respect to the human embryo;
p.000002: - the implications and modalities of scientific research on the human embryo; More particularly:
p.000002: 1. the acceptability of scientific research with respect to somatic gene therapy and germinal gene
p.000002: therapy;
p.000002: 2. the distinction between corrective germinal gene therapy and enhancement germinal gene therapy;
p.000002: 3. the concept of “treatments with a eugenic nature” and “treatments with a real eugenic purpose”: the distinction
p.000002: between pathological and non-pathological genetic characteristics;
p.000002: 4. the question of the necessity and acceptability of the creation of embryos for research purposes;
p.000002: 5. the question of the necessity and acceptability of the use of embryonic stem cells with therapeutic objectives
p.000002: (therapeutic cloning) and alternatives for the use of embryonic stem cells;
p.000002: 6. the implications of Belgian legislation;
p.000002: and this in the field of biology, medicine and health care, and in particular with respect to the ethical, social and
p.000002: legal aspects, more specifically concerning the observance of human rights.”.
p.000002:
p.000002: The plenary meeting of the Committee considered the issue on 9 July 2001. This question already gave rise to report no.
p.000002: 18 of 16 September 2002 concerning research into the human embryo in vitro and report no. 24 of 13 October
p.000002: 2003 concerning human stem cells and therapeutic cloning. The current report therefore covers the still pending
p.000002: questions, namely gene therapies in the broad sense.
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
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p.000002:
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p.000002:
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p.000002:
p.000002:
p.000002:
p.000002: Opinion no 33 of 7 November 2005 - Final version
p.000003: 3
p.000003:
p.000003: Foreword
p.000003:
p.000003: The present opinion concerns gene therapies in the broad sense of the term, being all genetic activities irrespective
p.000003: of whether they relate to the soma or the germ line, and irrespective of whether they have a therapeutic or
p.000003: optimising/enhancement purpose. In the hypotheses of activities ‘with therapeutic purpose’ the Committee will use
p.000003: both the terms ‘modification’ and ‘therapies’, but in the case of genetic activities ‘with
p.000003: optimising/enhancement purpose’, the Committee will only use the term ‘modification’.
p.000003: The Committee consequently proposes the following title:
...
p.000011: circumstances and purposes
p.000011:
p.000011: Today biotechnology is developing in the context of respect for the autonomy of the individual. The techniques used in
p.000011: negative eugenics do not change the human species. They are simply the orientation of the future of a number of
p.000011: individuals. “New eugenics” is related to technical scientific advances in genetics and medically assisted
p.000011: reproduction. It respects the individual, the free choice of the parents who by resorting to these techniques want
p.000011: children and wish to keep the risk of disabilities with the birth as minimal as possible. Genetic
p.000011: counselling – preferably before the pregnancy - consists of determining the risk of having a child with
p.000011: a specific illness, and informing the parents about the possibility of prenatal diagnosis (PD) or
p.000011:
p.000011: 9 Sermon, K., Moutou, C., Harper, J. et al. (2004), “ESHRE PGD Consortium data collection IV: May -
p.000011: December 2001” in Human Reproduction 20 (1): 19-34.
p.000011: 10 For this technique: see G. Pennings, R. Schots and I. Liebaers, Ethical considerations on preimplantation genetic
p.000011: diagnosis for HLA typing to match a future child as a donor of haematopoietic stem cells to a sibling in Human
p.000011: Reproduction, Vol.17, nr. 3, 534-538, 2002.
p.000011: 11 Carol, Anne, « Histoire de l’eugénisme en France », Parijs, Seuil, 1995; Duster, T., « Retour à
p.000011: l’eugénisme », (traduit de l’anglais par Colette Estin), Paris, Kimé, 1992 ; Missa, J.-N. et Susanne, C., « De
p.000011: l’eugénisme d’Etat à l’eugénisme privé », De Boeck, 1999 ; Taguieff, P.-A., « Retour sur l’eugénisme,
p.000011: question de définition » in Esprit, n° 200, Paris, Mars-Avril 1994 ; Testart, J., « Le désir du gène », Editions
p.000011: François Bourin, 1992 ; Thomas, J.-P., « Les fondements de l’eugénisme », Presses Universitaires de France,
p.000011: Parijs, 1995.
p.000011: 12 “L’individu n’est rien, l’espèce est tout ”wrote eugenist, Nobel Prize winner and physiologist Charles
p.000011: Richet in 1922. This idea was later adopted in a racist form in the motto of the Nazis: “du bist nichts, dein Volk ist
p.000011: alles” “you are nothing, your people is everything”.
p.000011:
p.000011: Opinion no 33 of 7 November 2005 - Final version
p.000012: 12
p.000012:
p.000012: pre-implantation genetic diagnosis (PGD), and the implications of these diagnoses. If no therapeutic
p.000012: solution exists for the abnormality diagnosed during the pregnancy, and if the parents and professionals
p.000012: consider this a serious abnormality, the result will usually be voluntary pregnancy termination. Abortion
p.000012: can be applied with chromosomal aberrations (mongolism, etc.) or with serious metabolic disorders (Tay-Sachs
p.000012: Disease, etc.). The technique of prenatal diagnosis leads to the practice of negative eugenics, so one prevents
...
p.000016: 1999 and 2002 are now leading a normal life.
p.000016:
p.000016: In Great Britain 4 identical cases were fully successfully treated. It is obviously too early to predict
p.000016: the long term effects of these treatments. But we may also not forget that apart from gene therapy the only
p.000016: possible treatment consists of a bone marrow transplant. And that is statistically impossible in 25 % of cases,
p.000016: meaning certain death for the sufferers.
p.000016:
p.000016: III.2. Therapeutic indications and difficulties
p.000016: At present numerous protocols relating to somatic gene therapy are being tested in the United States, Europe and Asia
p.000016: to treat different diseases.
p.000016: The chosen domain of gene therapies is made up of monogenic hereditary diseases which can be continuously better
p.000016: understood thanks to the development of genome analyses.
p.000016:
p.000016: Other potential domains are also being envisaged, representing an important scientific and medical challenge
p.000016: of our time. This concerns:
p.000016:
p.000016: - cancer (by the reinforcement of the immune system or destruction of the cancer cells, etc.);
p.000016: - neurodegenerative diseases (e.g. Parkinson's disease Alzheimer's);
p.000016: - heart and vascular diseases;
p.000016: - autoimmune diseases;
p.000016: - infectious diseases;
p.000016: - other disorders for which medical treatments are not yet satisfactory.
p.000016:
p.000016: All somatic cells of the organism should be able to be treated in a specific way with genetic treatments, and this
p.000016: depending on the disorder. Accordingly, muscle cells should be able to be corrected for patients with muscular
p.000016: dystrophy, the epithelium of the airways among patients suffering from mucoviscidosis, as well as stem cells of
p.000016: different cancers.
p.000016:
p.000016: Gene therapy could potentially be applied to all disorders. But with the current level of knowledge and
p.000016: practice these are still distant perspectives.
p.000016:
p.000016: Specific difficulties occur for each treated pathology, for each transferred gene sequence and for each vector type.
p.000016:
p.000016: 1. The choice of the gene to be transferred. This approach is simpler for monogenic diseases, but much
p.000016: more problematic for other, multigene and multifactor diseases (e.g. cancer).
p.000016:
p.000016: 2. The targeting of the sick cells which must receive the gene. The targeting of white blood
p.000016: corpuscles goes relatively smoothly, for example; but targeting adult stem cells of the epithelium of the pulmonary
p.000016: system for the purposes of treatment of mucoviscidosis is still a long way from reality.
p.000016:
p.000016: 3. Control of gene expression, this means obtaining the protein in the correct quantity and for the required
p.000016: duration. For example the treatment of diabetes type 1 with insulin of which production must be modulated by the
p.000016: sugar level in the blood. One should, among other things, prevent the therapeutic effect from being
p.000016: blocked by different mechanisms such as rejection or inhibition of the production of the protein.
p.000016:
p.000016: 4. The avoidance of side-effects. The most important side-effects observed so far:
p.000016: - unsuitable immune response
p.000016: Such a case occurred during an experimental gene therapy test treatment in the US, where the
p.000016: introduction of a vector originating from an adenovirus led to an inflammation from which the
p.000016: patient died.
p.000016: - « Mutagenesis by insertion » in other words the integration of the therapeutic gene in the sick cell at a
p.000016: certain place in the chromosome, with the deregulation of the
p.000016:
p.000016:
p.000016: Opinion no 33 of 7 November 2005 - Final version
p.000017: 17
p.000017:
p.000017: introduced gene or an adjacent gene as a consequence 17..
p.000017: The ideal option would consist of one preventing this risk by substituting the deficient gene by the healthy gene that
p.000017: one introduces by “genetic cibling”, or using “homologous recombination”. Up until the present one has still not been
...
p.000017: Villeval, J.L., Fraser, C.C., Cavazza-Calvo, M. and Fischer, A., 2003, “A serious adverse event after
p.000017: successful gene therapy for C-linked severe combined immunodeficiency ”, N. Engl. J. Med. 348, 255-6.
p.000017: 18 Decision of 9 June 2004 of the AFSSAPS
p.000017: 19 Information of Dr. A. Fischer of 12 September 2005
p.000017:
p.000017: Opinion no 33 of 7 November 2005 - Final version
p.000018: 18
p.000018:
p.000018: because they take place in the field of scientific and medical performance and are sometimes associated with conflicts
p.000018: of interest.
p.000018:
p.000018: Furthermore, there is the difficulty relating to the transition of the research into clinical application
p.000018: in a context in which the industry takes no initiatives. The industry no longer has interest in the subject because, as
p.000018: for the majority of rare diseases, technical development is too expensive proportionate to profits that very
p.000018: often remain hypothetical. Subsidisation therefore remains mainly public or charitable, and research remains
p.000018: in essence academic. Whether research into this domain takes place with public or private funds, it has the purpose
p.000018: of contributing to general welfare by the accumulation of new knowledge with the objective of alleviating human
p.000018: suffering. It therefore concerns sharing the benefits by granting access to all results, both positive and negative
p.000018: (see opinion no. 24 of 13 October 2003 of the Advisory Committee on Bioethics concerning human stem cells
p.000018: and therapeutic cloning, Chapter III., item 6).
p.000018:
p.000018: Finally gene therapy, in the light of certain failures inherent to any new domain, has resulted in unfounded statements
p.000018: by the media, companies and the scientists themselves.
p.000018: The role of the researcher in this domain is therefore fundamental. Nowadays she/he must accordingly
p.000018: continue her/his work according to rules of context and caution inherent to medical scientific research. He must
p.000018: supply objective and transparent information about the results achieved, and inform the public about both
p.000018: the probable risk and the proven risk. These understandings must be clearly distinguished because of the danger
p.000018: that this will lead to the blocking of any research and technological progress.
p.000018:
p.000018: III.3.2. Specific ethical problems
p.000018:
p.000018: Apart from formal requirements particular to all experiments on humans, one can question wether somatic
p.000018: gene therapy raises specific ethical problems.
p.000018:
p.000018: III.3.2.1.
p.000018: As regards actual gene therapy (i.e. therapeutic, so corrective) this does not appear to be the case. When we indeed
p.000018: assume that this concerns a clinical practice aimed at the curing or correcting of a poorly working organ
p.000018: or of certain aspects of an organ in a specific individual, one can compare this with an organ transplant (for example
p.000018: the correcting of a bone marrow gene versus the transplantation of bone marrow). The difference entails the lack of the
p.000018: problem for the donor.
p.000018:
p.000018: III.3.2.2.
p.000018: One has encountered reticence, however, for the following reasons.
...
p.000019: certain athletes. Once the new gene had been introduced we would have a new form of “natural” doping.
p.000019:
p.000019: It goes without saying that such applications would contravene all ethical and medical arguments
p.000019: concerning doping in sport. This is not only due to reasons of fair play, but particularly because of the
p.000019: risks associated with imbalances that can originate in the body, and because of life-threatening situations that could
p.000019: be a consequence.
p.000019: Furthermore, one cannot rule out similar problems occurring in other fields. An example here may be a technique
p.000019: that can cure Alzheimer's disease, and that could possibly be used to optimise the memory or the
p.000019: intelligence of people suffering from no illnesses at all.20. Such applications raise similar ethical problems
p.000019: to those mentioned above.
p.000019:
p.000019:
p.000019: Conclusion
p.000019: A social debate is therefore desirable on the subject of somatic gene modification to take account of
p.000019: the vague nature of the frontier between pathological and non-pathological characteristics, and therefore
p.000019: the possible acceptability of genetic modification for improvement compared to therapeutic gene therapy.
p.000019: This problem also arises in the domain of germinal gene therapy that will be covered in the next chapter.
p.000019: Somatic gene therapy does not differ fundamentally from other therapeutic inventions and scientific
p.000019: approaches in the medical field.
p.000019: The ethical arguments involved with research in the field of cell therapy were explained in our opinion no. 24 of 13
p.000019: October 2003 concerning research into human stem cells and therapeutic cloning.
p.000019:
p.000019:
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p.000019:
p.000019: 20 Apart from Alzheimer's, many older people suffer (not all to the same extent!) from memory problems. It this a
p.000019: ‘natural’ process (aging) or a more or less pathological process? If this is a natural process, the intervention will
p.000019: have to be described as optimising (somatic gene therapy); if it is a pathological process this then concerns a
p.000019: therapeutic intervention.
p.000019:
p.000019: Opinion no 33 of 7 November 2005 - Final version
p.000020: 20
p.000020:
p.000020: CHAPTER IV. GERMINAL GENE MODIFICATION
p.000020: Germinal gene therapy concentrates on the cells of the germ line (or reproductive cells) which transfer the hereditary
p.000020: characteristics of an individual to its offspring. Germinal gene therapy consists of the correction or modification of
p.000020: a gene of the reproductive cells or of the embryo cells in the initial development stage.
p.000020:
p.000020: IV. 1. Historical summary
p.000020: Since the start of the seventies attention has been devoted to the ethical aspects of the
p.000020: biotechnological revolution that related to the genetic recombination of the human genome. This debate
p.000020: particularly raged in the United States. In Asilomar already, not all scientists gathered to discuss the
...
p.000037: Therapeutic gene modification has up to the present barely seen successful application. Clinical applications and
p.000037: experience in this matter are insufficient to be able to evaluate its concrete perspectives.
p.000037: The most important clinical application concerns immune-deficient children in a sterile environment. The
p.000037: treatment was recently suspended for the second time because of side effects, and is currently being further
p.000037: investigated.
p.000037: The expectations of somatic gene therapy are, however, great, so great that research is being actively continued.
p.000037:
p.000037: For ethical considerations relating to the clinical application of this technique, the Committee refers to its report
p.000037: no. 13 of 9 July 2001 concerning experiments with persons.
p.000037: The Committee is of the opinion that its ethical evaluation is also applicable to therapeutic gene therapy.
p.000037: More specifically, the Committee considers it important to ensure the safety and efficiency of each clinical
p.000037: application by a far-reaching analysis of the advantages on the one hand, and of any risks to the patient on the other.
p.000037: The principle of caution should be applied with the choice of transport vector and the introduction of
p.000037: the repair gene. One will identify any side-effects of the treatment with care.
p.000037:
p.000037: Therapeutic, somatic gene modification is not distinguishable from other therapeutic innovations or
p.000037: other scientific research in medicine. The Committee has presented ethical arguments in this respect in its
p.000037: report no. 24 of 13 October 2003 concerning human stem cells and therapeutic cloning.
p.000037:
p.000037: It is to be noted that cell therapy (stem cells) is enjoying increasing interest beside gene therapy.
p.000037:
p.000037: V. 2. Enhancement/Optimising somatic gene modification
p.000037: The Committee observes that enhancement/optimising gene modification for non-pathological properties is at present
p.000037: still only a thing of the future without scientifically proven applications. One chiefly wants to improve the physical
p.000037: or mental performance of the person. Because the genetic determinism of these characteristics is very complex,
p.000037: applications in the short term are highly improbable.
p.000037: The general ethical considerations in sub V 1 are also applicable to this situation.
p.000037: A social debate is desirable to evaluate the feasibility, specificity and opportunities of genetic modification for
p.000037: enhancement. One should also devote great attention to the social and psychological consequences of any
p.000037: applications.
p.000037:
p.000037:
p.000037:
p.000037: Opinion no 33 of 7 November 2005 - Final version
p.000038: 38
p.000038:
p.000038: V. 3. Genetic modification of germ cells
p.000038: In principle the Advisory Committee on Bioethics suggests a global, attendant and open vision in this field, and we
p.000038: invite alertness to the technical sciences and their applications.
p.000038: The Committee observes that at the current stage of research the possibilities of recombination within the germinal
p.000038: genome are largely speculative, and offer no explicit and controlled clinical applications.
p.000038: Without in principle being against scientific research on the subject, the Committee has developed three
...
Social / Access to Social Goods
Searching for indicator access:
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p.000017:
p.000017:
p.000017: 17 Professor Fischer's team came up against the latter complication in two cases and suspended clinical applications
p.000017: to analyse the causes of it.
p.000017: Hacein-Bey-Abina, S., Von Kalle, C., Schmidt, M., Le Deist, F., Wulfraat, N.,Mcintyre, E., Radford, I.,
p.000017: Villeval, J.L., Fraser, C.C., Cavazza-Calvo, M. and Fischer, A., 2003, “A serious adverse event after
p.000017: successful gene therapy for C-linked severe combined immunodeficiency ”, N. Engl. J. Med. 348, 255-6.
p.000017: 18 Decision of 9 June 2004 of the AFSSAPS
p.000017: 19 Information of Dr. A. Fischer of 12 September 2005
p.000017:
p.000017: Opinion no 33 of 7 November 2005 - Final version
p.000018: 18
p.000018:
p.000018: because they take place in the field of scientific and medical performance and are sometimes associated with conflicts
p.000018: of interest.
p.000018:
p.000018: Furthermore, there is the difficulty relating to the transition of the research into clinical application
p.000018: in a context in which the industry takes no initiatives. The industry no longer has interest in the subject because, as
p.000018: for the majority of rare diseases, technical development is too expensive proportionate to profits that very
p.000018: often remain hypothetical. Subsidisation therefore remains mainly public or charitable, and research remains
p.000018: in essence academic. Whether research into this domain takes place with public or private funds, it has the purpose
p.000018: of contributing to general welfare by the accumulation of new knowledge with the objective of alleviating human
p.000018: suffering. It therefore concerns sharing the benefits by granting access to all results, both positive and negative
p.000018: (see opinion no. 24 of 13 October 2003 of the Advisory Committee on Bioethics concerning human stem cells
p.000018: and therapeutic cloning, Chapter III., item 6).
p.000018:
p.000018: Finally gene therapy, in the light of certain failures inherent to any new domain, has resulted in unfounded statements
p.000018: by the media, companies and the scientists themselves.
p.000018: The role of the researcher in this domain is therefore fundamental. Nowadays she/he must accordingly
p.000018: continue her/his work according to rules of context and caution inherent to medical scientific research. He must
p.000018: supply objective and transparent information about the results achieved, and inform the public about both
p.000018: the probable risk and the proven risk. These understandings must be clearly distinguished because of the danger
p.000018: that this will lead to the blocking of any research and technological progress.
p.000018:
p.000018: III.3.2. Specific ethical problems
p.000018:
p.000018: Apart from formal requirements particular to all experiments on humans, one can question wether somatic
p.000018: gene therapy raises specific ethical problems.
p.000018:
p.000018: III.3.2.1.
p.000018: As regards actual gene therapy (i.e. therapeutic, so corrective) this does not appear to be the case. When we indeed
p.000018: assume that this concerns a clinical practice aimed at the curing or correcting of a poorly working organ
p.000018: or of certain aspects of an organ in a specific individual, one can compare this with an organ transplant (for example
...
p.000023: Stock mentions a survey performed by Darryl Macer — director of the Eubios Ethics Institute in Japan — concerning the
p.000023: perception (about technology for selecting germ cells) of the general public in different countries. If one offers the
p.000023: general public the possibility of correcting genetic defects or enhancing the physical and mental capacities of their
p.000023: children, an important part of the population seems to be in favour of this: 22 % in Israel, 43 % in the United States,
p.000023: 63 % in India and 83 % in Thailand, and these figures would without doubt be even higher in Singapore, Korea or China.
p.000023: These countries have indeed invested enormously in their biotechnology. When a relatively inexpensive technology is
p.000023: made available in thousands of laboratories across the whole world, use will be made of it. Without doubt,
p.000023: the limitations and prohibitory rules originating from national authorities or international ‘biopolitical’
p.000023: organisations will not suffice in preventing the genetic modification of the person being applied. Stock
p.000023: assumes that it is preferable for these experiments to take place in all transparency at university laboratories or
p.000023: within research units of large private biotechnological companies, than in the semi-
p.000023: clandestineness of laboratories of religious sects.
p.000023: The report specified above from the President’s Council on Bioethics studies the ethical problems relating
p.000023: to enhancement medicine. Thanks to biotechnology we have access to a number of experimental techniques (that
p.000023: indeed have already been tested on animals and some of them also on people) that indicate that in the more or less near
p.000023: future, techniques will be developed that go further than ordinary therapy: selection or the genetic
p.000023: modification of embryos, the enhancement of certain cognitive capacities of children and adults (attention,
p.000023: memory), enabling athletes to perform better (mainly by activities on the genome of the muscle cells), the retarding of
p.000023: aging and the lengthening of the working life, changing of the mood. Even if the clinical application of certain
p.000023: technologies still appears uncertain or distant, the members of the American committee still believe that
p.000023: it is important to today study the potential effects of this performance-related biotechnology on medicine and
p.000023: the community33.
p.000023:
p.000023:
p.000023:
p.000023: 31 Watson, J.D., DNA, The secret of life, Knopf, New York, 2003.
p.000023: 32 Stock, Gregory, Redesigning humans, Houghton Mifflin Company, 2002. “We know that Homo sapiens is not the final
p.000023: word in primate evolution, but few have yet grasped that we are on the cusp of profound biological change, poised to
p.000023: transcend our current form and character on a journey of new imagination”. “At first glance, the very notion that we
p.000023: might become more than human seems preposterous. After all, we are still biologically identical in virtually
p.000023: every respect to our cave dwelling ancestors. But this lack of change is deceptive. Never before have
...
p.000027: have been fully refined, will have to be judged case by case in the light of the context and the nature of the intended
p.000027: experiment. They argue for an attitude of open and alert monitoring of the technological sciences. They believe it is
p.000027: better to avoid the everything-or-nothing reasoning of those who radically oppose the modification of the germinal
p.000027: genome in the human being. In the talk of the bioconservatives the market, individualism and liberal
p.000027: eugenics are all too often regarded as necessarily poorly or impossible to regulate. The only salutary reaction
p.000027: according to them consists of an absolute, final prohibition of positive eugenics and a list of very strict
p.000027: limitations for negative eugenics. Such non-evolutive and tight regulations will, however, inevitably lead to
p.000027: clandestine research and force the applications onto the black market. A prohibition will not be able to
p.000027: impede the development of highly-desired technologies that require no resources that the State alone can bring
p.000027: together. It would therefore be better to regulate the freedom of research and development, and
p.000027: nevertheless allow experiments for which some want an absolute and definitive prohibition under strict, public
p.000027: and reviewable procedural conditions.44
p.000027:
p.000027: Some members of the Committee think that an adequate answer can be given to the most important
p.000027: objections of the bioconservatives: objections relating to concern about the safety of the experiments, their
p.000027: consequences for health, social justice, equal access to optimising/enhancement biotechnologies,
p.000027: objections with respect to ontotheological concerns about a possible change to “human nature”.
p.000027:
p.000027: The objection that genetic research forms a great danger to future offspring that may be affected by
p.000027: various abnormalities or serious malformations can, according to some members of the Advisory Committee on Bioethics,
p.000027: be answered with the following counter-arguments. There is no reason whatsoever to a priori believe that the genome of
p.000027: people will never be able to be combined with a minimum of risk. The regulation of experiments on people
p.000027: must protect figures from the medical world from too great risks. That is, however, no reason to prohibit
p.000027: experiments which comply with long-established deontological rules that are also respected today on a wide
p.000027: scale.
p.000027:
p.000027: As regards the objection that the development of reproductive-genetic experiments would have consequences as regards
p.000027: social justice (only the rich would have access to diagnoses and to DNA recombination), according to some members
p.000027: of the Advisory Committee on Bioethics, protection against unjust availability is in place to prevent some
p.000027: exploiting a technique at the deprivation of others. They also believe that gene therapy will in due course be able to
p.000027: help reduce inequalities between individuals. They reject the bioconservative reasoning in which positive
p.000027: eugenistic practices or practices seen as positive eugenistic practices and their consequences are
p.000027: systematically ignored or brought into discredit. They also dispute the idea that individuals with improved
p.000027: physical or cognitive capacities would be morally inferior to “natural people”. The modified individuals
p.000027: could, on the contrary, demonstrate a wider awareness, a sharper sense of justice and superior moral
p.000027: virtues. In a future context of the application of genetic recombination of the human being, a child could ask
p.000027: itself one day why it does not have better genes - just as good genes as his friend whose parents did not
p.000027: refuse enhancement intervention (memory, intelligence, health) in the name of respect for human nature and
p.000027: the genetic lottery. Here the wish is to justify the enormous actual inequalities of the individuals at genetic level
p.000027: under the pretence that the “natural lottery” is the condition for equality in law of people. But even in highly
p.000027: developed societies actual genetic inequalities are
p.000027:
p.000027: 44 Certain arguments in this paragraph in favour of Standpoint A have been developed further:
p.000027: - by G. Hottois, « Quel rôle pour les philosophes dans les débats bioéthiques ? », Présentation et
p.000027: discussion de G. Habermas, L’avenir de la nature humaine. Vers un eugénisme libéral ?, article à paraître
p.000027: - and by J.-N. Missa, « L’homme recombiné : les enjeux éthiques et philosophiques de la modification du génome de
p.000027: l’être humain » in J.-Y. Goffi, Regard sur les technosciences, Paris, Vrin, 2006 – sous presse.
p.000027:
p.000027: Opinion no 33 of 7 November 2005 - Final version
p.000028: 28
p.000028:
p.000028: not or poorly compensated. If on the contrary we accept that genetic intervention is not by definition
p.000028: a bad thing, the real but very difficult questions arise: those of the vigilant monitoring of eugenistic
p.000028: research and eugenistic development, and particularly that of rightful availability and fair access. It is exactly the
p.000028: political-philosophical questions that we must dare to tackle, instead of merely accepting the hypothesis that genetic
p.000028: recombination of the human being can be applied in the more or less near future. The questions of political philosophy
p.000028: are for that matter now already being widely discussed in Anglo-American literature: the genetic possibilities
p.000028: are taken seriously and the conclusions are rarely of the all-or-nothing type. On the contrary, it is attempted to
p.000028: determine balanced conditions and rules without minimising the risks, advantages and disadvantages, particularly
p.000028: based on the prevailing political philosophies (those of J. Rawls and R. Nozick)45.
p.000028:
p.000028: As regards the objection that the modification of the genome of a human being would be a threat to natural
p.000028: diversity (if you could design your children à la carte, certain beauty features and intelligence characteristics
p.000028: would be obtaining desirable natural diversity), it can be suggested that the opposite is rather the case. The
p.000028: realm of possibilities increases with DNA recombination. The diversity of tastes and cultures is large enough to
p.000028: ensure people would not all make the same choices. Furthermore, this concerns genetic modification. The weight of the
p.000028: environment and of epigenetic modification, where it is often forgotten that they are just as biological, may
...
p.000029: of the principle of a democratic society. The choice of whether or not to impose such measures would therefore in
p.000029: essence not be a technical-scientific choice but a political one. As far as germinal gene manipulations are
p.000029: concerned 48 , it is hardly probably that the gene pool of a population would change more efficiently
p.000029: (faster), unless this would be industrially and directed imperiously organised in a market economy that would feed
p.000029: the new “requirement” of improvement, after it has been elaborated from scratch.
p.000029:
p.000029: In general, gene therapy as a component of biomedical research and clinical care, is still in the experimental stage,
p.000029: both in its somatic and in its germinal form. The current debates about this form of therapy, that cover both its
p.000029: ethical and medical aspects, must consequently be seen in the context of uncertainty. At present specialists are
p.000029: simply not succeeding in reaching agreement about the medical-technical feasibility of that type of therapy, more
p.000029: specifically the therapeutic and enhancement genetic changes in the germ line; and just as little agreement is reached
p.000029: on the desirability of en masse allocating the poorly available resources to this research niche. Private
p.000029: finance has for that matter largely turned its back on gene therapy research since the emergence of
p.000029: the new eldorado of regenerative medicine. The ethical discussions on the public forum and in ‘civil society’
p.000029: would consequently better concentrate on the one hand on the question of justice as regards access to new therapeutic
p.000029: techniques – a question that befits a democratic society - and on the other hand the uncertainty concerning certain
p.000029: ethical implications of the carrying out of gene therapy in clinical research. Consequently, it
p.000029: appears indispensable to draw up legal and deontological rules to make research into germinal genetic
p.000029: modification and as appropriate its therapeutic application more
p.000029:
p.000029: 46 Etymology of phenotype: from the Greek phainomai, appear, be visible; typos, stamp, form
p.000029: 47 R. Frydman. Dieu, la médecine et l’embryon. Odile Jacob, 1999.
p.000029: 48 The term “germinal gene manipulations” camouflages the reality of “optimising/enhancement gene
p.000029: modification” which are wrongly called optimising/enhancement gene ’therapies’; wrongly, because they have no
p.000029: therapeutic characteristics, but concern the changing of the human genome in the hope of enhancement.
p.000029:
p.000029: Opinion no 33 of 7 November 2005 - Final version
p.000030: 30
p.000030:
p.000030: transparent. At present any success or the ethical implications of the form of therapy appear difficult to determine,
p.000030: so the discussions in this area are inevitably a mixture of pessimism and optimism (from a medical standpoint) and of
p.000030: reservation and the will to go forward (from an ethical standpoint).
p.000030: Without portraying the situation without thought and in a gloomy light, the members simply remind of a pragmatic
p.000030: principle of Realpolitik 49: “We are not on the verge of the danger of the general subjecting of humans to science and
p.000030: technology, but the danger of some people being manipulated by others”.50 51
p.000030:
...
p.000032: 61 B. Andrieu. Médecin de son corps, PUF, Parijs, 1999.
p.000032:
p.000032: Opinion no 33 of 7 November 2005 - Final version
p.000033: 33
p.000033:
p.000033: conscience decide to end her pregnancy may obviously not be a subject for discussion. It is very fortunate that the
p.000033: woman today has the right to decide about the quality of the child to be born, and all surveys confirm
p.000033: that 90% of interviewed women would choose abortion in the case of a trisomic foetus. Here also lies the raison d'être
p.000033: for real genetic counselling 63: determining the risk that a foetus is the carrier an anomaly and informing the parents
p.000033: of this. But in this respect it is important to really allow them the freedom to make a choice in all
p.000033: conscience. Otherwise the progress of prenatal diagnosis would no longer be indisputable.
p.000033: As for “democratic eugenics” things are very different to abortion for medical reasons, because in the name of
p.000033: individual freedom the State could introduce eugenics not in that name by putting the full weight of the
p.000033: choice – and of any associated guilt – with the individual, so with the woman expecting an “abnormal” child. If
p.000033: the woman actually has legal access to the knowledge without economic discrimination because all tests and
p.000033: diagnostic and therapeutic operations have been reimbursed, she could therefore be the tool of
p.000033: “biotechnological progress”. Ideally, abortion for medical reasons has the purpose of avoiding serious disorders, and
p.000033: it is a matter discussed at individual level between the physician and patient within an ambiguous legal
p.000033: framework (could this be otherwise?). But in reality the decision is increasingly less often left to the personal
p.000033: ethics of the patient and/or the physician-obstetric. The freedom of choice of the woman is in reality
p.000033: therefore less obvious than we think because it is determined by influential social models, by possible
p.000033: financial considerations, by the family or the general psychological environment, or by an advisor/client
p.000033: relationship that replaces a physician/patient relationship. The decision is gradually moved from the private domain
p.000033: to the public domain as it is under social and shortly also economic pressure.
p.000033: The circle is nearly complete. We could soon arrive unnoticed from a fear of eugenic totalitarism at “democratic
p.000033: eugenics”; voluntary and well-considered individual private eugenics that secretively transforms into individual
p.000033: eugenics with a compelling nature as a result of collective pressure (and the fear of subsequent stigmatisation).
p.000033: According to some, this evolution is all in all progress for public health and the quality of life of parents and
...
p.000035: the “correction” of monogenic genetic disorders such as mucoviscidosis, myopathy of Duchenne, chorea of
p.000035: Huntington. The second type concerns genetic modification of germ line cells for the purposes of “optimisation”.
p.000035:
p.000035: As far as monogenic genetic illnesses are concerned, information infers that IVF in combination with preimplantation
p.000035: diagnostics (PGD) strongly reduces the risk of the birth of a child with such a hereditary illness in
p.000035: families where the risk is real. The need for gene therapy on cells of the germ line is as a result very
p.000035: limited. Despite the possibilities of PGD, however, a small number of children will still be born with
p.000035: a hereditary illness. A mutation can indeed occur during the production of the cells of the germ line or in the
p.000035: course of the very first development stages. The children should be able to be helped with the therapeutic genetic
p.000035: modification of somatic cells (see chapter III of this opinion).
p.000035:
p.000035: Enhancement genetic modification in the germ line on its part would, according to literature, be particularly aimed
p.000035: at sporting, intellectual, cognitive, emotional, behaviour-bound and psychological performance (access to
p.000035: happiness). These parameters do not only depend on the genome, but mainly on epigenetic processes that
p.000035: function in extremely complex and particularly plastic networks. This also concerns factors loaded with
p.000035: individual and social values, with a strong cultural component.
p.000035: Assumptions about controlling physical, spiritual or behavioural performance in humans by gene manipulation
p.000035: in the germ line are currently based on pure conjecture. There is for that matter another transgenerational aspect:
p.000035: genetic modification would be forced upon certain individuals of the offspring whose nuclear and mitochondrial
p.000035: environment and epigenetic cell environment is still unknown, and that would have unpredictable consequences on the
p.000035: resulting phenotype, without account being able to be taken of the requirements and environment with which the
p.000035: offspring will be confronted.
p.000035:
p.000035: As regards collective eugenics the benefit of enhancement genetic modification in the germ line is yet more strongly
p.000035: disputable, because the consequences of such modification being carried out on an individual scale would be diluted
p.000035: during the consecutive crossings 69.
p.000035:
p.000035: 69 If, for example, we take a random sample of the Belgian population of 500,000 inhabitants within which a couple
p.000035: has decided have a child who in the initial stage of his/her development (zygote) received a specific
p.000035: gene that is considered to develop a specific ability. All cells of the foetus, both the somatic cells and the germ
...
p.000038: lottery. These members are certain that one may not underestimate the advantages a person could gain from such
p.000038: experiments.
p.000038:
p.000038: These members are aware of the fact that the phenotype of a person is the result of interaction between the genome
p.000038: and the internal environment (cellular and somatic) and the external environment (the physical, biological
p.000038: and social-cultural environment) during a person's development. They do emphasise, however, that in an
p.000038: equivalent and stable environment an important part of interindividual variation can be attributed to genetic
p.000038: factors.
p.000038:
p.000038: These members are of the opinion that any reasoning based on all or nothing must be avoided. This reasoning gives
p.000038: support to people who are radically against the modification of the germinal genome in humans. Regulations
p.000038: that do not evolve and are rigid with an absolute and final prohibition of positive eugenics and a very restrictive
p.000038: list for negative eugenics can only push research to become clandestine and applications to join the black market. A
p.000038: prohibition would indeed not prevent technologies developing when highly desired.
p.000038: If one on the other hand accepts that genetic modification is not necessarily a bad thing, the real but very difficult
p.000038: questions arise: those concerning alertness with respect to research into the modification of the human genome
p.000038: remain, particularly where this concerns distributive justice and equal access to these possibilities. One
p.000038: must have the courage to tackle these political and philosophical questions, without immediately rejecting the
p.000038: hypothesis that in the nearish future genetic recombination of a person can take place. One would better
p.000038: regulate freedom of research and development, and under strict, public and reviewable procedures, permit
p.000038: experiments that some wish to prohibit in a general, absolute and final manner.
p.000038:
p.000038: Opinion no 33 of 7 November 2005 - Final version
p.000039: 39
p.000039:
p.000039: Standpoint B
p.000039:
p.000039: Other members are of the opinion that the question must again be raised in a context of scientific and
p.000039: operational uncertainty.
p.000039: For these members the ethical discussions about somatic or germinal gene modification should concentrate on access to
p.000039: new, therapeutic therapies, the transparency of the research and the psychosocial manipulation that may be applicable.
p.000039: These members also raise the inescapable problem of the place of a genetic disability in our society, and raise the
p.000039: concrete question as to who has the right to define what “a normal person” is. Or as a consequence of
p.000039: this, how one can actually define “improvement” when talking about genetic modification.
p.000039: They ask themselves about the opportunity to steer medicine in the direction of
p.000039: enhancement/optimising practices for non-pathological disorders, and point out the possible dangers of the
p.000039: interference of certain parties in public health relating to individual genetic profiles.
p.000039: They are of the opinion that the sector of public health should once again leave the exclusive medical-scientific
p.000039: circuit, and make its entry in the political and social arena. It is indeed naive to deny the possibility of a
p.000039: compelling form of “democratic eugenics” when science forgets its ethical and social significance and the
p.000039: political hides behind scientific expertise that is becoming increasingly segmented.
p.000039: They point out the risk of disguised eugenics by putting all responsibility for ethical choices at individual level,
p.000039: either in a context of instrumentalising the new social standards, in a context of pressure due to social-cultural
...
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p.000009: other hand, developments in human genetics have given individuals and families the resources to avoid the
p.000009: birth of genetically disabled individuals, to accordingly improve individual and family welfare. To help clarify the
p.000009: discussion it seems sensible to continue using the term ‘eugenics’ subject to the introduction of appropriate
p.000009: distinctions.
p.000009:
p.000009: Individual eugenics or micro-eugenics, private eugenics and even liberal eugenics.
p.000009: This involves a selection phenomenon at an individual level. We would mention the decision of a couple
p.000009: regarding the conception, implantation or birth of a child who is a carrier of a genetic disorder that leads to a
p.000009: physical or mental disability. Another example is research (currently with few promising results) into sperm
p.000009: or embryos of “superior quality” (for example as regards IQ) or possible future attempts to create
p.000009: genetically “optimised/enhanced” embryos. One can also add to this: the example of the informing of future spouses
p.000009: about being the carrier of the same harmful, recessive gene, to allow them to avoid an offspring affected by
p.000009: thalassemia, or pre-implantation or prenatal diagnosis during a pregnancy with a such a couple. Finally, there
p.000009: is the prenatal diagnosis of a pregnant woman from a certain age.
p.000009:
p.000009: Social eugenics or macro-eugenics or even collective eugenics.
p.000009: This is aimed at the introduction of measures with the purpose or consequence of reducing the number of
p.000009: genetic defects or increasing the number of advantageous characteristics in a specific population or
p.000009: within the whole human species. One can distinguish two kinds.
p.000009:
p.000009: - Non-compelling macro-eugenics meaning at the level of society information is made available about
p.000009: genetics, and one encourages and supports people taking eugenistic decisions without actually compelling
p.000009: them. In the current situation this can concern making tracing methods available for damaged genes, genetic
p.000009: counselling, the reducing of resistance to the termination of the pregnancy after pre-implantation diagnosis (PGD) or
p.000009: after the termination of the pregnancy after prenatal diagnosis (PD), etc.
p.000009:
p.000009: - Compelling macro-eugenics, sometimes called state eugenics. This involves
p.000009: the introduction of imperative measures at state level. Here the freedom of the individual or the couple is
p.000009: affected. One can interpret the prohibition of marriages between blood relations for genetic reasons as a form of
p.000009: this type of macro-eugenics.
p.000009:
p.000009:
p.000009: 4 The Descent of Man, General Summary, Publisher The Great Books, p. 596
p.000009:
p.000009: Opinion no 33 of 7 November 2005 - Final version
p.000010: 10
p.000010:
p.000010: The example of the policy of compulsory vaccinations indicates that the introduction of imperative measures within the
...
p.000013: disabled children), by their religious convictions and by their conviction about what a valuable life is for themselves
p.000013: and for their unborn child.
p.000013:
p.000013: If one takes account of the fact that in very many legal systems VPT is allowed for psychosocial reasons (which are
p.000013: difficult to define), it would be somewhat paradoxical that disorders, abnormalities or malformations
p.000013: originating from the medical domain would not be accepted as a justification for VPT or PGD.
p.000013:
p.000013: Certain members of the Committee therefore believe that the decision about the justification of the use of these
p.000013: techniques in essence must first be taken by the parents concerned (or by the mother), after of course they have
p.000013: received correct and complete information beforehand about the disorder, including the consequences in the medium and
p.000013: longer term.
p.000013:
p.000013: II.3.3.4.
p.000013: But even if one accepts to follow the decision of the parents as regards actions of a negative private eugenistic
p.000013: nature with disorders or malformations that are medically acknowledged as pathology, problems still exist.
p.000013: If on the one hand some disorders occur at birth or straight afterwards, there are on the other hand also disorders
p.000013: which only develop at 40, 60 or 80 years of age. And here there are disorders that everyone sees
p.000013: as very serious (Huntington's), serious (certain forms of Alzheimer's) or more acceptable (predisposition
p.000013: to hypertension or obesity).
p.000013: As regards these disorders occurring later in life, some members of the Committee believe that the decision to apply
p.000013: VPT or PGD is in essence the responsibility of the parents, to the extent this concerns disorders caused by only
p.000013: one gene or a very small number of genes. In other cases PGD cannot be carried out because one must possess a
p.000013: very large number of embryos to be able to make a selection. From the concern to arrive at a reasonable decision,
p.000013: however, is it important that the democratic debate about this problem is deepened, so parents do not have to make such
p.000013: a fundamental decision without ethical support.
p.000013:
p.000013: II.3.3.5.
p.000013: A difficult problem in another area is due to physical or psychological characteristics that form a continuum, where
p.000013: certain serious forms occur that can be regarded as pathological, while the majority are considered more or less
p.000013: “normal” (for example different kinds of intelligence, characters, behaviour or affectivity of which serious
p.000013: forms are called neuroses or psychoses).
p.000013: If one establishes that the interaction of a number of genes corresponds to a more or less greater
p.000013: predisposition to different phenotypes, it is obvious that the “pathological/not pathological”
p.000013: dichotomy is difficult to maintain. For as long as it concerns a clearly described, deficient gene we remain in
...
p.000017:
p.000017:
p.000017: To sum up
p.000017: After 30 years of research and 14 years of clinical applications the successes of somatic gene therapy still remains
p.000017: limited, but expectations remain high.
p.000017: We are still not far enough to properly assess somatic gene therapies. These techniques are still applied on a low
p.000017: scale, and their future development requires a rigorous scientific and clinical approach. To this end, just as in all
p.000017: medical research, rules of good practice must be observed to ensure the safety and effectiveness of the clinical
p.000017: applications. In particular, the relationship between benefit and risk to the patient must be meticulously explored,
p.000017: and great caution must be exercised in this domain that intervenes in the core of life itself, with an influence on
p.000017: the identity of the person him/herself.
p.000017: Analysis of the clinical trials of A. Fischer at the Necker hospital do, however, seem to demonstrate
p.000017: that the analysis of benefit and risk to the patient amply warrant the continuation of work relating to somatic gene
p.000017: therapies.
p.000017: It is indeed because this analysis remains positive that the Agence française de sécurité sanitaire des
p.000017: produits de santé (AFSSAPS) (that had suspended all abovementioned testing in October 2002 because of the side-effects)
p.000017: has allowed the team of Dr Alain Fischer and Marina Cabazzana-Calvo to resume the studies after modifications were
p.000017: applied to the study protocol as regards the administered doses and age of the treated patients 18. On the
p.000017: request of the team of Dr. A. Fischer the new attempt was suspended because a third complication arose; the team
p.000017: wishes to change the vector prior to starting testing again19.
p.000017:
p.000017: III.3. Ethical discussion about somatic gene modification
p.000017: III.3.1. General considerations
p.000017:
p.000017: Somatic gene therapy is situated in the same area as the issue of experiments on people, implying that
p.000017: it must comply with the same ethical expectations, attitudes and requirements.
p.000017: In its opinion no. 13 of 9 July 2001 concerning experiments on people, the Advisory Committee on Bioethics evaluated
p.000017: the then current normative framework, in particular the conditions of “Good Clinical Practice”, the
p.000017: deontological rules supporting them, as well as the ethical operations on which they must be based.
p.000017: The members of the Committee are of the opinion that the ethical assessments developed in this opinion no. 13, are
p.000017: applicable to the present opinion.
p.000017:
p.000017: Somatic gene therapy also belongs in a double context of fundamental and applied research. At the current stage this
p.000017: still concerns experimental research with a therapeutic purpose.
p.000017:
p.000017: In this area the transition from the laboratory to the human individual requires particularly strict ethical rules.
p.000017: They form the basis of scientific working in an innovative sector where the applications are aimed at the
p.000017: human genome. Debates about this matter are not neutral
p.000017:
p.000017:
...
p.000021: modification of the human genome. In 1984 the British philosopher Jonathan Glover published a book about the subject
p.000021: with the title What sort of people should there be?. The application of recombinant DNA techniques on humans is
p.000021: the most important theme: “Perhaps one day we shall be able to choose people’s genetic characteristics”,
p.000021: writes Glover. “How should we decide what sort of people there should be ? Or are there reasons for refusing to make
p.000021: such decisions? 26“. Very many people react with shock when one discusses the ability to change human nature. But this
p.000021: feeling of repugnance is not always paired with valid, rational objections. “May one change human nature?” is the
p.000021: central question in Glover's book. It is his intention to analyse and refute the arguments of those who are
p.000021: in principle opposed to changing human nature by means of genetic modification.
p.000021:
p.000021: 23 See the report of the American committee for bio-ethics Beyond Therapy: Biotechnology and the Pursuit of
p.000021: Happiness, The President’s Council on bioethics, Washington D.C., October 2003. This document is available
p.000021: on the committee's website: www.bioethics.gov. The report has also been published on paper: Beyond Therapy:
p.000021: Biotechnology and the Pursuit of Happiness, A report by the President’s Council on Bioethics, Regan Books,
p.000021: New York, 2003.
p.000021: 24 See for example the following works:
p.000021: 1.President’s Council on Bioethics (2003) Beyond therapy: Biotechnology and the pursuit of happiness. New York: Dana
p.000021: Press. 400 p.
p.000021: 2.McKibben W (2003) Enough: Staying human in an engineered age. New York: Times Books. 271 p. 3.Callahan D (2003) What
p.000021: price better health? Hazards of the research imperative. Berkeley: University of California Press. 329 p.
p.000021: 4.Elliott C (2003) Better than well: American medicine meets the American dream. New York: W. W. Norton. 357 p.
p.000021: 5.Fukuyama F (2003) Our posthuman future: Consequences of the biotechnology revolution. New York: Picador. 272 p.
p.000021: 6.Rothman S, Rothman D (2003) The pursuit of perfection: The promise and perils of medical enhancement.
p.000021: New York: Pantheon Books. 292 p.
p.000021: 7.Kass LR (2002) Life, liberty, and the defense of dignity: The challenge for bioethics. San Francisco: Encounter
p.000021: Books. 313 p.
p.000021: 8.Kristol W, Cohen E, editors (2002) The future is now: America confronts the new genetics. Lanham (Maryland): Rowman
p.000021: and Littlefield. 357 p.
p.000021: 9.Sandel S (2004 April) The case against perfection. Atlantic Monthly 51–62.
p.000021:
p.000021:
p.000025: 25
p.000025:
p.000025: 1. Stock, Gregory, Redesigning humans, Houghton Mifflin Company, 2002.
p.000025: 2. Hughes, J., Citizen Cyborg. Why democratic societies must respond to the redesigned human of the future, Westview
p.000025: Press, Cambridge (Mass.), 2004
p.000025: 26 Glover, J., What sort of people should there be?, Penguin Books, Harmondsworth, 1984, p. 13.
p.000025:
p.000025: Opinion no 33 of 7 November 2005 - Final version
p.000022: 22
p.000022:
p.000022: The strongest objection concerns the risks of genetic recombination among people. Unexpected
p.000022: results are possible, says Glover. If we create people with unanticipated characteristics we will
...
p.000023: memory), enabling athletes to perform better (mainly by activities on the genome of the muscle cells), the retarding of
p.000023: aging and the lengthening of the working life, changing of the mood. Even if the clinical application of certain
p.000023: technologies still appears uncertain or distant, the members of the American committee still believe that
p.000023: it is important to today study the potential effects of this performance-related biotechnology on medicine and
p.000023: the community33.
p.000023:
p.000023:
p.000023:
p.000023: 31 Watson, J.D., DNA, The secret of life, Knopf, New York, 2003.
p.000023: 32 Stock, Gregory, Redesigning humans, Houghton Mifflin Company, 2002. “We know that Homo sapiens is not the final
p.000023: word in primate evolution, but few have yet grasped that we are on the cusp of profound biological change, poised to
p.000023: transcend our current form and character on a journey of new imagination”. “At first glance, the very notion that we
p.000023: might become more than human seems preposterous. After all, we are still biologically identical in virtually
p.000023: every respect to our cave dwelling ancestors. But this lack of change is deceptive. Never before have
p.000023: we had the power to manipulate human genetics to alter our biology in meaningful, predictable ways.
p.000023: Bioethicists and scientists alike worry about the consequences of coming genetic technologies, but few have thought
p.000023: through the larger implications of the wave of new developments arriving in reproductive biology. “
p.000023: 33 “This report offers less a list of many things to think about than a picture of one big thing to think
p.000023: about: the dawning age of biotechnology and the greatly augmented power it is providing us, not only for gaining
p.000023: better health but also for improving our natural capacities and pursuing our own happiness. The ambitious project for
p.000023: the mastery of nature, the project first envisioned by Francis Bacon and René Descartes in the early
p.000023: seventeenth century, is finally yielding its promised abilities to relieve man’s estate. Though our society will, as a
p.000023: matter of public practice, be required to deal with each of these techniques and possibilities as they arrive,
p.000023: piecemeal and independently of one another, we should, as a matter of public understanding, try to see what they might
p.000023: all add up to, taken together. The Council’s experience of considering these disparate subjects under this one
p.000023: big idea — beyond therapy, for the Pursuit of Happiness - and our discovery of overlapping ethical
p.000023: implications would seem to vindicate the starting assumption that led us to undertake this project in the first
p.000023: place: biotechnology beyond therapy deserves to be examined not in fragments, but as a whole” .
p.000023:
p.000023: Opinion no 33 of 7 November 2005 - Final version
p.000024: 24
p.000024:
p.000024: The report embraces four subjects: selection and modification of embryos (chapter 2 with as title “Better
p.000024: children”), enhancement of athletic performance (chapter 3: “Superior performance”), prolonging
p.000024: life (chapter 4: “Ageless bodies”), modification of emotive life and cognitive functions (chapter 5: “Happy
p.000024: souls”).
...
p.000032: on the one hand chronic disorders that are the consequence of individual or social irresponsibility, such
p.000032: as alcoholism or smoking, and on the other hand constitutionally determined handicaps of the genetically
p.000032: underprivileged, will be systematically mixed and deliberately thrown on the same heap (because this is
p.000032: economically cost-effective and socially desirable)?
p.000032: Let us continue with our analysis. The health approach can indeed (in the name of certain progress of
p.000032: technical science which one day may cover the possibilities of therapeutic and optimising/enhancement
p.000032: germinal line gene modification) sometimes stealthily apply a certain amount of force. Since the seventies,
p.000032: thanks to the active association of feminism and liberalism the woman has clearly obtained the right to
p.000032: dispose of her own body. That is irrefutable progress. But what is less obvious is any eugenistic excrescence
p.000032: being avoided by putting the responsibility for abortion for medical reason (for example established
p.000032: trisomy) solely with the woman!61,62 The right of the woman to dispose of her own body and in all
p.000032:
p.000032: 56 What exactly does “changing the pathogenic human behaviour in the subject that we are concerned
p.000032: with” mean? Does pathogenic human behaviour in the case of, for example, trisomy 21 consist of the refusal
p.000032: to have a 45-year-old woman tested for the risk of trisomy, or the fact of her becoming pregnant at that age? The
p.000032: implicit risk of a health approach that would assume a more or less imperative definition of pathogenic human behaviour
p.000032: is quite clear.
p.000032: 57 The question of fairer redistribution of the limited health care resources raises another question: is the public
p.000032: financing of gene therapies a real priority at present, all the more as private financing is becoming increasingly
p.000032: rare?
p.000032: 58 The politician calls upon the expert because the politician does not have the knowledge; but he
p.000032: nevertheless remains the one who decides, because he will ultimately make the choice… and must therefore
p.000032: take responsibility.
p.000032: 59 “Hygiéniquement correct”, an expression used by Pierre Ronsanvallon in analogy of “politically correct” in his
p.000032: book La Nouvelle question sociale – Repenser L’Etat-Providence, Seuil, 1995.
p.000032: 60 Two totally different situations, medical and social, behavioural and chronological and toxicological and genetic.
p.000032: 61 B. Andrieu. Médecin de son corps, PUF, Parijs, 1999.
p.000032:
p.000032: Opinion no 33 of 7 November 2005 - Final version
p.000033: 33
p.000033:
p.000033: conscience decide to end her pregnancy may obviously not be a subject for discussion. It is very fortunate that the
p.000033: woman today has the right to decide about the quality of the child to be born, and all surveys confirm
p.000033: that 90% of interviewed women would choose abortion in the case of a trisomic foetus. Here also lies the raison d'être
...
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p.000009: such caution.
p.000009:
p.000009: II.2. Definitions
p.000009: Since the origin of the concept of eugenics there has always been much confusion, and all sorts of terms have been
p.000009: thrown together, particularly as regards terminology. As a result, opinions and standpoints concerning this
p.000009: concept have been falsified. The Committee therefore proposes introducing the following distinctions.
p.000009:
p.000009: It is true that the term eugenics originally referred to a general ‘improvement’ of the human species (the human
p.000009: ‘race’) with the purpose of spreading ‘desirable’ genetic characteristics by suppressing the number of ‘undesired’
p.000009: properties of the species. Since the Second World War all measures with the purpose of the ‘improvement’ of a
p.000009: whole population or the human species have generally been put to question, or even regarded as unacceptable. On the
p.000009: other hand, developments in human genetics have given individuals and families the resources to avoid the
p.000009: birth of genetically disabled individuals, to accordingly improve individual and family welfare. To help clarify the
p.000009: discussion it seems sensible to continue using the term ‘eugenics’ subject to the introduction of appropriate
p.000009: distinctions.
p.000009:
p.000009: Individual eugenics or micro-eugenics, private eugenics and even liberal eugenics.
p.000009: This involves a selection phenomenon at an individual level. We would mention the decision of a couple
p.000009: regarding the conception, implantation or birth of a child who is a carrier of a genetic disorder that leads to a
p.000009: physical or mental disability. Another example is research (currently with few promising results) into sperm
p.000009: or embryos of “superior quality” (for example as regards IQ) or possible future attempts to create
p.000009: genetically “optimised/enhanced” embryos. One can also add to this: the example of the informing of future spouses
p.000009: about being the carrier of the same harmful, recessive gene, to allow them to avoid an offspring affected by
p.000009: thalassemia, or pre-implantation or prenatal diagnosis during a pregnancy with a such a couple. Finally, there
p.000009: is the prenatal diagnosis of a pregnant woman from a certain age.
p.000009:
p.000009: Social eugenics or macro-eugenics or even collective eugenics.
p.000009: This is aimed at the introduction of measures with the purpose or consequence of reducing the number of
p.000009: genetic defects or increasing the number of advantageous characteristics in a specific population or
p.000009: within the whole human species. One can distinguish two kinds.
p.000009:
p.000009: - Non-compelling macro-eugenics meaning at the level of society information is made available about
p.000009: genetics, and one encourages and supports people taking eugenistic decisions without actually compelling
p.000009: them. In the current situation this can concern making tracing methods available for damaged genes, genetic
p.000009: counselling, the reducing of resistance to the termination of the pregnancy after pre-implantation diagnosis (PGD) or
p.000009: after the termination of the pregnancy after prenatal diagnosis (PD), etc.
...
p.000009:
p.000009: Opinion no 33 of 7 November 2005 - Final version
p.000010: 10
p.000010:
p.000010: The example of the policy of compulsory vaccinations indicates that the introduction of imperative measures within the
p.000010: context of public health and imperative measures by the state is therefore not always regarded as unacceptable.
p.000010: However, negative state eugenics was responsible for misuse in the sterilisation and elimination of the mentally ill in
p.000010: the XX century.
p.000010:
p.000010: Each type of eugenics can have a negative form: elimination or reduction of undesired characteristics or a
p.000010: positive form: the promoting of characteristics regarded as desirable.
p.000010:
p.000010: This terminological approach entails no value judgement, but can serve as a starting point for discussions about
p.000010: scientific results and ethical and political standpoints.
p.000010:
p.000010: II.3. Negative eugenics by the selection of embryos and/or foetus
p.000010: II.3.1. Historical summary – Medical status questionis
p.000010:
p.000010: A new medical discipline has developed since the end of the 60's: clinical genetics. Its importance has
p.000010: greatly increased due to scientific progress and reinforced cooperation with gynaecology and obstetrics
p.000010: departments. Pregnant women with an increased risk of a child with a genetic illness can increasingly make use of
p.000010: choriocentesis. 5(11th week) or of an amniocentesis
p.000010: 6 (16th week). These methods can be used to examine if the unborn child is affected by one of the sought
p.000010: abnormalities. Other methods for prenatal diagnosis, including echography, ensure that one can identify
p.000010: abnormalities in a later stage of the pregnancy. Tracing an illness or deformity always confronts the future
p.000010: parents with the decision of whether or not to terminate the pregnancy (VPT, voluntary pregnancy termination).7
p.000010:
p.000010: Resorting to VPT can be avoided in a number of cases by a new form of prenatal diagnosis: pre- implantation genetic
p.000010: diagnostics (PGD). This form of diagnosis assumes the use of in-vitro fertilisation (IVF was introduced
p.000010: in 1978) because this form of identification takes place on embryos fertilised in vitro. Couples of which the
p.000010: unborn child has a major risk of being affected by a hereditary illness (mucoviscidosis, Duchenne's disease, etc.) can
p.000010: resort to PGD. While the embryo is at a development stage of just a few cells (usually 8), the physicians take one or
p.000010: two cells and analyse the DNA or the karyotype (number and form of the chromosomes). In-vitro fertilisation leads to
p.000010: the formation of a number of embryos, and thanks to the test one can identify embryos carrying the
p.000010: abnormality. Embryos without the disorder can then again be implanted.
p.000010: This technique dates from the start of the 90's. In 1992 the team of Alan Handyside (Hammersmith
p.000010: Hospital, London) could therefore ensure the birth of a healthy child for a couple who previously had a child suffering
p.000010: from mucoviscidosis8. Without this technique the parents would have a theoretical risk of 25% of having a child with
p.000010: this disorder.
p.000010:
p.000010: Most centres proposing PGD accept the following categories of couples:
p.000010:
p.000010: - couples with a high risk of a child that would suffer from an illness or deformity of genetic origin and who have a
p.000010: sterility problem (i.e. already candidates for IVF);
p.000010: - couples with a high genetic risk who have already undergone “traditional” prenatal, diagnostic testing and who
p.000010: have already resorted a number of times to VPT after the detection of an
p.000010:
p.000010:
p.000010: 5 Chorionic villus sampling.
p.000010: 6 Taking of amniotic fluid (fluid from around the fœtus).
p.000010: 7 For this and other information we refer we to: Hans Galjaard, Rapport du CIB sur le diagnostic génétique
p.000010: pré-implantatoire et les interventions sur la lignée germinale, Comité International de Bioéthique de
p.000010: L’Unesco (CIB), Actes, November 2002.
p.000010: 8 In 1989 the first PGD by Handyside was already involved with gender-bound diseases; it was from a
p.000010: technical perspective easier than molecular diagnosis; see: Handyside AH, Kontogianni EH, Hardy K, Winston
p.000010: RM, « Pregnancies from biopsied human preimplantation embryos sexed by Y-specific DNA amplification »,
p.000010: Nature, 1990 Apr 19;344(6268):768-70; Handyside AH, Pattinson JK, Penketh RJ, Delhanty JD, Winston RM, Tuddenham
p.000010: EG, « Biopsy of human preimplantation embryos and sexing by DNA amplification », Lancet, 1989 Feb
p.000010: 18;1(8634):347-9. Handyside, A.H. et al., Birth of a normal girl after in vitro fertilization and preimplantation
p.000010: diagnostic testing for cystic fibrosis, The New England Journal of Medicine, 1992, 327, p.905-909.
p.000010:
p.000010: Opinion no 33 of 7 November 2005 - Final version
p.000011: 11
p.000011:
p.000011: affected foetus;
p.000011: - couples with a risk of a child affected by a genetic illness or deformity and who are against VPT.
p.000011:
p.000011: At international level PGD is increasingly applied for the screening of aneuploidy and for sex selection for
p.000011: non-medical reasons9.
p.000011:
p.000011: A recent extension of PGD indications is HLA blastomer profiling, a process wrongly labelled “designer baby” by the
p.000011: media10.
p.000011:
p.000011: Preimplantation diagnosis including the variant HLA blastomer profiling raises ethical questions for which opinion will
p.000011: have to be drawn up.
p.000011:
p.000011: II.3.2. Private negative eugenics: current situation
p.000011:
p.000011: Private eugenics is a form of eugenics connected to the use of prenatal identification techniques and
p.000011: pre-implantation diagnosis. As a result, one can avoid couples having children carrying a hereditary illness or
p.000011: disability11.
p.000011:
p.000011: Current biological and medical events (medically assisted reproduction, prenatal and pre- implantation
p.000011: diagnostics, genetic treatment attempts, programme for the mapping of and sequence-determining of the human
p.000011: genome) again brought the question of eugenics to the foreground. The idea of “eugenics” itself is again raising
p.000011: concern among some.
p.000011:
p.000011: But eugenics related to progress achieved in genetics and in new techniques of medically assisted
p.000011: reproduction is not of the same nature as state eugenics as developed in pre-war Germany and in the United
...
p.000011: the freedom and autonomy of the parents. Other people believe that instead of avoiding the term
p.000011: eugenics, one must rather draw attention to the fundamental distinction between “state eugenics” and its
p.000011: derivatives on the one hand, and on the other hand contemporary techniques for diagnosis and medically
p.000011: assisted reproduction, that one can callprivate eugenics. These are indeed terms concerning radically different
p.000011: circumstances and purposes
p.000011:
p.000011: Today biotechnology is developing in the context of respect for the autonomy of the individual. The techniques used in
p.000011: negative eugenics do not change the human species. They are simply the orientation of the future of a number of
p.000011: individuals. “New eugenics” is related to technical scientific advances in genetics and medically assisted
p.000011: reproduction. It respects the individual, the free choice of the parents who by resorting to these techniques want
p.000011: children and wish to keep the risk of disabilities with the birth as minimal as possible. Genetic
p.000011: counselling – preferably before the pregnancy - consists of determining the risk of having a child with
p.000011: a specific illness, and informing the parents about the possibility of prenatal diagnosis (PD) or
p.000011:
p.000011: 9 Sermon, K., Moutou, C., Harper, J. et al. (2004), “ESHRE PGD Consortium data collection IV: May -
p.000011: December 2001” in Human Reproduction 20 (1): 19-34.
p.000011: 10 For this technique: see G. Pennings, R. Schots and I. Liebaers, Ethical considerations on preimplantation genetic
p.000011: diagnosis for HLA typing to match a future child as a donor of haematopoietic stem cells to a sibling in Human
p.000011: Reproduction, Vol.17, nr. 3, 534-538, 2002.
p.000011: 11 Carol, Anne, « Histoire de l’eugénisme en France », Parijs, Seuil, 1995; Duster, T., « Retour à
p.000011: l’eugénisme », (traduit de l’anglais par Colette Estin), Paris, Kimé, 1992 ; Missa, J.-N. et Susanne, C., « De
p.000011: l’eugénisme d’Etat à l’eugénisme privé », De Boeck, 1999 ; Taguieff, P.-A., « Retour sur l’eugénisme,
p.000011: question de définition » in Esprit, n° 200, Paris, Mars-Avril 1994 ; Testart, J., « Le désir du gène », Editions
p.000011: François Bourin, 1992 ; Thomas, J.-P., « Les fondements de l’eugénisme », Presses Universitaires de France,
p.000011: Parijs, 1995.
p.000011: 12 “L’individu n’est rien, l’espèce est tout ”wrote eugenist, Nobel Prize winner and physiologist Charles
p.000011: Richet in 1922. This idea was later adopted in a racist form in the motto of the Nazis: “du bist nichts, dein Volk ist
p.000011: alles” “you are nothing, your people is everything”.
p.000011:
p.000011: Opinion no 33 of 7 November 2005 - Final version
p.000012: 12
p.000012:
p.000012: pre-implantation genetic diagnosis (PGD), and the implications of these diagnoses. If no therapeutic
p.000012: solution exists for the abnormality diagnosed during the pregnancy, and if the parents and professionals
p.000012: consider this a serious abnormality, the result will usually be voluntary pregnancy termination. Abortion
p.000012: can be applied with chromosomal aberrations (mongolism, etc.) or with serious metabolic disorders (Tay-Sachs
...
p.000012: support in very many countries: Great Britain (1967), United States (1973), France (1975), the Netherlands (1981),
p.000012: Belgium (1990), etc.
p.000012:
p.000012: II.3.3. Ethical considerations
p.000012:
p.000012: II.3.3.1.
p.000012: Certain groups in society are completely against any form of eugenics, collective and private.
p.000012:
p.000012: - The essential argument is based on the consideration of the embryo to be a human person from fertilisation
p.000012: (standpoint mentioned by the Committee in opinion no. 18 of 16 September 2002, chapter IV, item 4.2.1.) or that
p.000012: it has sufficient personality characteristics so the termination of its further development should be completely
p.000012: forbidden. This implies that VPT is not acceptable, even in the case of illness or serious deformations.
p.000012: These people deem PGD unacceptable because this implies that selection has occurred, and that this has the
p.000012: inevitable effect of certain embryos being eliminated.
p.000012: - They also put forward the idea that the acceptance of private eugenics deviously puts pressure on women who refuse
p.000012: these techniques. This would lead to imperative collective eugenics that, due to economic or cultural pressure, would
p.000012: be similar to state eugenics.
p.000012: - Finally, they suggest that the importance attached to the avoidance of the birth of a child with an abnormality
p.000012: would have a negative influence on our attitude to disabled children already born, and the care they
p.000012: receive.13
p.000012:
p.000012: Some members have the following remarks.
p.000012: The first argument is based on an extreme standpoint about the status of the embryo and the foetus.
p.000012: The second argument refers to an unavoidable phenomenon. From the time of a value being accepted by the majority of the
p.000012: people, one perceives a tendency to follow the movement. The evaluation of this process depends on the value one
p.000012: attaches to one of the standpoints taken. For a number of years, some Dutch, strongly protestants villages did not
p.000012: accept vaccinations against poliomyelitis. After having seen the baleful consequences of their non-acceptance with
p.000012: their own eyes they moved behind the majority standpoint. It cannot be ruled out that a similar movement may form
p.000012: with respect to VPT, for example with trisomy 21. This involves an evolution in social attitudes, an
p.000012: evolution not seen as negative by everyone.
p.000012: The third argument can be rebutted by remembering the distinction between a human person (born living and viable) and
p.000012: an embryo, and the imperative obligation to guarantee the welfare of all persons and more specifically the least
p.000012: privileged.
p.000012:
p.000012: II.3.3.2.
p.000012: Among the population and specialists in genetics and medically assisted reproduction, there exists a certain
p.000012: consensus about the fact that one considers PD (followed by VPT) and PGD ethically acceptable in “severe”
p.000012: or “serious” cases.
p.000012:
p.000012: Some members of the Committee indeed consider that the status of the embryo and the foetus has no part in the status of
p.000012: the person, and that embryos and foetuses only gradually obtain the qualities of a human being according to
p.000012: intra-uterine development.
p.000012: Starting from this consideration, they consider that the distinctive weight assigned on the one hand to an embryo, and
p.000012: on the other hand to the possible or probable suffering of the unborn child arriving in the world with a serious
p.000012: disability, as well as the welfare and the health of future parents, justify resorting to this action.
p.000012:
p.000012:
p.000012: 13 These attitudes are defended, for example, by the Fondation Jérôme Lejeune. See the intervention in the French
p.000012: Senate of President Jean-Marie Le Mené: ‘Y a-t-il un eugénisme “clean”?’ on the site:
p.000012: www.généthique.org/doss_theme/dossiers/eugénisme/eugénisme_jmlm.htm
p.000012:
p.000012: Opinion no 33 of 7 November 2005 - Final version
p.000013: 13
p.000013:
p.000013: II.3.3.3.
p.000013: Agreement has not, however, been reached about the ethical question of what a “severe” or “serious”
p.000013: disorder or deformity is. Professional associations involving clinical geneticists, reproductive technology and
p.000013: bio-ethical advisers have still not yet agreed about the drawing up of a list of disorders which are accepted as
p.000013: serious enough to justify a PGD or PD. There are indeed more than 5,000 monogenetic disorders, and nearly all of these
p.000013: disorders show signs of variable severity and clinical evolution (see H. Galjaard, a.c.).
p.000013:
p.000013: It appears normal that specialists hesitate in stating their personal opinion about the question of the severity or
p.000013: gene disease or abnormality. It is indeed the future parents who must bare the responsibility for the child
p.000013: disorder. The estimation of the severity of this disorder is determined by the cultural and social environment
p.000013: (the geographic factor - such as e.g. in the Third World - or financial resources), by their family history (other
p.000013: disabled children), by their religious convictions and by their conviction about what a valuable life is for themselves
p.000013: and for their unborn child.
p.000013:
p.000013: If one takes account of the fact that in very many legal systems VPT is allowed for psychosocial reasons (which are
p.000013: difficult to define), it would be somewhat paradoxical that disorders, abnormalities or malformations
p.000013: originating from the medical domain would not be accepted as a justification for VPT or PGD.
p.000013:
p.000013: Certain members of the Committee therefore believe that the decision about the justification of the use of these
p.000013: techniques in essence must first be taken by the parents concerned (or by the mother), after of course they have
p.000013: received correct and complete information beforehand about the disorder, including the consequences in the medium and
p.000013: longer term.
p.000013:
p.000013: II.3.3.4.
p.000013: But even if one accepts to follow the decision of the parents as regards actions of a negative private eugenistic
p.000013: nature with disorders or malformations that are medically acknowledged as pathology, problems still exist.
p.000013: If on the one hand some disorders occur at birth or straight afterwards, there are on the other hand also disorders
p.000013: which only develop at 40, 60 or 80 years of age. And here there are disorders that everyone sees
p.000013: as very serious (Huntington's), serious (certain forms of Alzheimer's) or more acceptable (predisposition
p.000013: to hypertension or obesity).
p.000013: As regards these disorders occurring later in life, some members of the Committee believe that the decision to apply
...
p.000025:
p.000025: Opinion no 33 of 7 November 2005 - Final version
p.000026: 26
p.000026:
p.000026: Certain members of the American committee, under the leadership of Leon Kass, are of the opinion that enhancement
p.000026: biotechnology raises more fundamental ethical questions, questions that go to the core of what it means to be human.
p.000026: These essential questions – raised by them possibly in the form of an initial feeling of aversion or
p.000026: rejection with respect to specific biotechnological applications42 — concern the question of human nature
p.000026: and human dignity. The “natural order” would therefore be threatened by the human hybris “playing God”.
p.000026: The dignity of human activity would be threatened by “non-natural” means. The preservation of our identity would also
p.000026: be threatened by attempts of self-transformation. Finally, the development of the person would be threatened by
p.000026: conformistic research into the artificial substitution of natural functions. These ontotheological arguments appeal
p.000026: to emotional factors based on an aversion to the person starting to play God while he is not in the possession of
p.000026: the wisdom of God43.
p.000026:
p.000026:
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p.000026: them for your child might be seen as a form of child neglect. If all the defensive linemen are on steroids, you risk
p.000026: mayhem if you go against them chemically pure. And, a point subtler still, some critics complain that, as with cosmetic
p.000026: surgery, Botox and breast implants, many of the enhancement technologies of the future will very likely be used
p.000026: in slavish adherence to certain socially defined and merely fashionable notions of ‘excellence’ or
p.000026: improvement, very likely shallow and conformist. If these fears are realized, such exercises of individual
p.000026: freedom, suitably multiplied, might compromise the freedom to be an individual” (Beyond Therapy:
p.000026: Biotechnology and the Pursuit of Happiness, The President’s Council of Bioethics, Washington D.C., October
p.000026: 2003, chapter 5).
p.000026: 42 “The subject being relatively novel, it is difficult to put this worry into words. We are in an area where initial
p.000026: revulsions are hard to translate into sound moral arguments. Many people are probably repelled by the idea of drugs
p.000026: that erase memories or that change personalities, or of interventions that enable seventy-year-olds to bear
p.000026: children or play professional sports, or, to engage in some wilder imaginings, of mechanical implants that would
p.000026: enable men to nurse infants or computer -brain hookups that would enable us to download the Oxford English
p.000026: Dictionary.” Beyond Therapy: Biotechnology and the Pursuit of Happiness, The President’s Council of Bioethics,
p.000026: Washington D.C., October 2003, chapter 5.
p.000026: 43 “The mere playing at being God, the hubris of acting with insufficient wisdom “ Beyond Therapy:
...
p.000027: must protect figures from the medical world from too great risks. That is, however, no reason to prohibit
p.000027: experiments which comply with long-established deontological rules that are also respected today on a wide
p.000027: scale.
p.000027:
p.000027: As regards the objection that the development of reproductive-genetic experiments would have consequences as regards
p.000027: social justice (only the rich would have access to diagnoses and to DNA recombination), according to some members
p.000027: of the Advisory Committee on Bioethics, protection against unjust availability is in place to prevent some
p.000027: exploiting a technique at the deprivation of others. They also believe that gene therapy will in due course be able to
p.000027: help reduce inequalities between individuals. They reject the bioconservative reasoning in which positive
p.000027: eugenistic practices or practices seen as positive eugenistic practices and their consequences are
p.000027: systematically ignored or brought into discredit. They also dispute the idea that individuals with improved
p.000027: physical or cognitive capacities would be morally inferior to “natural people”. The modified individuals
p.000027: could, on the contrary, demonstrate a wider awareness, a sharper sense of justice and superior moral
p.000027: virtues. In a future context of the application of genetic recombination of the human being, a child could ask
p.000027: itself one day why it does not have better genes - just as good genes as his friend whose parents did not
p.000027: refuse enhancement intervention (memory, intelligence, health) in the name of respect for human nature and
p.000027: the genetic lottery. Here the wish is to justify the enormous actual inequalities of the individuals at genetic level
p.000027: under the pretence that the “natural lottery” is the condition for equality in law of people. But even in highly
p.000027: developed societies actual genetic inequalities are
p.000027:
p.000027: 44 Certain arguments in this paragraph in favour of Standpoint A have been developed further:
p.000027: - by G. Hottois, « Quel rôle pour les philosophes dans les débats bioéthiques ? », Présentation et
p.000027: discussion de G. Habermas, L’avenir de la nature humaine. Vers un eugénisme libéral ?, article à paraître
p.000027: - and by J.-N. Missa, « L’homme recombiné : les enjeux éthiques et philosophiques de la modification du génome de
p.000027: l’être humain » in J.-Y. Goffi, Regard sur les technosciences, Paris, Vrin, 2006 – sous presse.
p.000027:
p.000027: Opinion no 33 of 7 November 2005 - Final version
p.000028: 28
p.000028:
p.000028: not or poorly compensated. If on the contrary we accept that genetic intervention is not by definition
p.000028: a bad thing, the real but very difficult questions arise: those of the vigilant monitoring of eugenistic
p.000028: research and eugenistic development, and particularly that of rightful availability and fair access. It is exactly the
...
p.000031: preventive individual medical approach, but would de facto come under a more or less imperative public health approach.
p.000031: And because the concept of public health has evolved, we would remind that the public health approach has in principle
p.000031: two objectives: firstly to make the medical care market more efficient and therefore rationalise its operation,
p.000031: and secondly de facto reduce the risk that an illness occurs and therefore anticipate pathological
p.000031: phenomenon. The – medical and financial – risk and the knowledge of that risk are therefore central to the public
p.000031: health approach, and require epidemiological research and public action to reduce that risk.
p.000031: There are therefore three reasons to transfer the public health approach from the exclusive
p.000031: medical-scientific arena to the political arena.
p.000031: Firstly the health approach aims at social change: a return to normal by the elimination of a situation considered
p.000031: undesirable (the illness) thanks to a change in the pathogenic human
p.000031:
p.000031:
p.000031: 54 We must however add that PGD de facto reduces the need for the application of therapeutic germinal gene therapy.
p.000031: 55 What is the legal framework for PGD and prenatal screening? PGD enables the avoidance of the birth of a child with
p.000031: a genetic abnormality detected in the embryo in vitro by not implanting an embryo that is the carrier of the
p.000031: identified anomaly, and therefore prevents an abortion. The legitimacy of this practice results a
p.000031: contrario – as necessary – from article 5 of the law of 11 May 2003, that only allows the
p.000031: implantation of people with embryos on which research is conducted provided that that research brings a benefit to the
p.000031: embryo itself.
p.000031: But the law only concerns embryos in vitro and not embryos in utero. If a genetic illness is detected,
p.000031: prenatal screening enables abortion (voluntary pregnancy termination) to take place when “it is
p.000031: established that the child to be born will be suffering from an extremely serious illness that is recognised as
p.000031: incurable at the time of the diagnosis” (art. 2,4° of the law of 3 April 1990 concerning pregnancy
p.000031: termination).
p.000031:
p.000031: Opinion no 33 of 7 November 2005 - Final version
p.000032: 32
p.000032:
p.000032: behaviour.56
p.000032: Secondly the public health approach entails the anticipation of the prevention of an illness where the
p.000032: illness must be defined as a public health problem of which the causes are scientifically and/or
p.000032: technically established. This is, however, with the understanding that the conscience of scientists or technical
p.000032: experts is not equal to the public conscience. At this stage we would like to remind of the terrible responsibility of
p.000032: experts in predictive medicine with its constantly more numerous genetic tests. Prediction is indeed a good
p.000032: aspect if it serves as prevention, but it is dangerous if there is an obligation to release the prediction
p.000032: outside the private domain to map the “biological destiny” of a person to be potentially insured.
p.000032: Thirdly, an action by the authorities in answer to a public health problem (just like any social policy from an
p.000032: authority) is given shape by a redistribution of goods and services for populations defined by the
p.000032: characteristics of the problem to be solved: “who gets what and how does this happen?” And to answer the question, a
...
p.000032: to have a 45-year-old woman tested for the risk of trisomy, or the fact of her becoming pregnant at that age? The
p.000032: implicit risk of a health approach that would assume a more or less imperative definition of pathogenic human behaviour
p.000032: is quite clear.
p.000032: 57 The question of fairer redistribution of the limited health care resources raises another question: is the public
p.000032: financing of gene therapies a real priority at present, all the more as private financing is becoming increasingly
p.000032: rare?
p.000032: 58 The politician calls upon the expert because the politician does not have the knowledge; but he
p.000032: nevertheless remains the one who decides, because he will ultimately make the choice… and must therefore
p.000032: take responsibility.
p.000032: 59 “Hygiéniquement correct”, an expression used by Pierre Ronsanvallon in analogy of “politically correct” in his
p.000032: book La Nouvelle question sociale – Repenser L’Etat-Providence, Seuil, 1995.
p.000032: 60 Two totally different situations, medical and social, behavioural and chronological and toxicological and genetic.
p.000032: 61 B. Andrieu. Médecin de son corps, PUF, Parijs, 1999.
p.000032:
p.000032: Opinion no 33 of 7 November 2005 - Final version
p.000033: 33
p.000033:
p.000033: conscience decide to end her pregnancy may obviously not be a subject for discussion. It is very fortunate that the
p.000033: woman today has the right to decide about the quality of the child to be born, and all surveys confirm
p.000033: that 90% of interviewed women would choose abortion in the case of a trisomic foetus. Here also lies the raison d'être
p.000033: for real genetic counselling 63: determining the risk that a foetus is the carrier an anomaly and informing the parents
p.000033: of this. But in this respect it is important to really allow them the freedom to make a choice in all
p.000033: conscience. Otherwise the progress of prenatal diagnosis would no longer be indisputable.
p.000033: As for “democratic eugenics” things are very different to abortion for medical reasons, because in the name of
p.000033: individual freedom the State could introduce eugenics not in that name by putting the full weight of the
p.000033: choice – and of any associated guilt – with the individual, so with the woman expecting an “abnormal” child. If
p.000033: the woman actually has legal access to the knowledge without economic discrimination because all tests and
p.000033: diagnostic and therapeutic operations have been reimbursed, she could therefore be the tool of
p.000033: “biotechnological progress”. Ideally, abortion for medical reasons has the purpose of avoiding serious disorders, and
p.000033: it is a matter discussed at individual level between the physician and patient within an ambiguous legal
p.000033: framework (could this be otherwise?). But in reality the decision is increasingly less often left to the personal
p.000033: ethics of the patient and/or the physician-obstetric. The freedom of choice of the woman is in reality
p.000033: therefore less obvious than we think because it is determined by influential social models, by possible
p.000033: financial considerations, by the family or the general psychological environment, or by an advisor/client
p.000033: relationship that replaces a physician/patient relationship. The decision is gradually moved from the private domain
p.000033: to the public domain as it is under social and shortly also economic pressure.
p.000033: The circle is nearly complete. We could soon arrive unnoticed from a fear of eugenic totalitarism at “democratic
p.000033: eugenics”; voluntary and well-considered individual private eugenics that secretively transforms into individual
p.000033: eugenics with a compelling nature as a result of collective pressure (and the fear of subsequent stigmatisation).
p.000033: According to some, this evolution is all in all progress for public health and the quality of life of parents and
p.000033: baby. According to others, this “progress” is only possible at the expense of a scientific and medical
p.000033: failure: trisomy 21 for example is then not included or treated, but one limits oneself to establishing the
p.000033: existence of trisomy 21 before the birth of the child, and proposing the ending of the pregnancy to
p.000033: the woman concerned. A third group goes yet further: “proposing” is according to this group a euphemism 64,
p.000033: because the woman's society increasingly expects an “approach with a sense of public responsibility” to public health.
p.000033: Such an approach would then consist of bringing an end to her pregnancy and, again, in so doing accept the obligate
p.000033: norm reference concerning what responsible parenthood and a public sense of responsibility means! They add that the
p.000033: evolution will proceed all the faster if one organises the disappearance of pathologies of which one does not know the
p.000033: causes, and society does not make the necessary efforts to offer “persons disabled by the genome” and their nearest
p.000033: real possibilities of integration and development.
p.000033: The arguments of the respective supporters of the three standpoints about the so-called democratic or
p.000033: undemocratic character of new private eugenics (that must however be distinguished from the gruesome
p.000033: totalitarian state activities of former times) cannot shroud the persuasiveness of the prevailing social and
p.000033: cultural standards in our modern societies. Our personal existence is not merely resolvable to our
p.000033: biological individuality and our genetic patrimony, with ultimately the resulting more or less successful
p.000033: phenotypical development. In fact we also exist outside ourselves by our mutual participation in the sign and symbol
p.000033: world of a human society. And what distinguishes human society from animal society is exactly that is based on
...
p.000034: - the dialogue between the nuclear genes and the mitochondrial genes. The expression of the coding
p.000034: gene of the protein amyloid that with Alzheimer deposits in the brain then diverges depending on the
p.000034: information contained in the mitochondrial genome;
p.000034: - the imprinting of the genome: the fact that the expression of a gene differs depending on if it originates
p.000034: from the father or the mother;
p.000034: - the modulation of the effects of the products of a gene by internal or external ambient factors.
p.000034:
p.000034: Opinion no 33 of 7 November 2005 - Final version
p.000035: 35
p.000035:
p.000035: others. The current development of functional genomics requires a greater sense of responsibility
p.000035: when using genetic instruments for curative or enhancement purposes. This can entail the inadequateness of eugenics
p.000035: that is based on germinal line gene modification.
p.000035:
p.000035: IV. 2.3.2.
p.000035: As regards private eugenics these members in the first instance consider it necessary to clarify what genetic changes
p.000035: in the germ line could result in. Here two types of changes are considered. The first type concerns
p.000035: the “correction” of monogenic genetic disorders such as mucoviscidosis, myopathy of Duchenne, chorea of
p.000035: Huntington. The second type concerns genetic modification of germ line cells for the purposes of “optimisation”.
p.000035:
p.000035: As far as monogenic genetic illnesses are concerned, information infers that IVF in combination with preimplantation
p.000035: diagnostics (PGD) strongly reduces the risk of the birth of a child with such a hereditary illness in
p.000035: families where the risk is real. The need for gene therapy on cells of the germ line is as a result very
p.000035: limited. Despite the possibilities of PGD, however, a small number of children will still be born with
p.000035: a hereditary illness. A mutation can indeed occur during the production of the cells of the germ line or in the
p.000035: course of the very first development stages. The children should be able to be helped with the therapeutic genetic
p.000035: modification of somatic cells (see chapter III of this opinion).
p.000035:
p.000035: Enhancement genetic modification in the germ line on its part would, according to literature, be particularly aimed
p.000035: at sporting, intellectual, cognitive, emotional, behaviour-bound and psychological performance (access to
p.000035: happiness). These parameters do not only depend on the genome, but mainly on epigenetic processes that
p.000035: function in extremely complex and particularly plastic networks. This also concerns factors loaded with
p.000035: individual and social values, with a strong cultural component.
p.000035: Assumptions about controlling physical, spiritual or behavioural performance in humans by gene manipulation
p.000035: in the germ line are currently based on pure conjecture. There is for that matter another transgenerational aspect:
p.000035: genetic modification would be forced upon certain individuals of the offspring whose nuclear and mitochondrial
p.000035: environment and epigenetic cell environment is still unknown, and that would have unpredictable consequences on the
p.000035: resulting phenotype, without account being able to be taken of the requirements and environment with which the
p.000035: offspring will be confronted.
p.000035:
p.000035: As regards collective eugenics the benefit of enhancement genetic modification in the germ line is yet more strongly
p.000035: disputable, because the consequences of such modification being carried out on an individual scale would be diluted
p.000035: during the consecutive crossings 69.
p.000035:
p.000035: 69 If, for example, we take a random sample of the Belgian population of 500,000 inhabitants within which a couple
p.000035: has decided have a child who in the initial stage of his/her development (zygote) received a specific
p.000035: gene that is considered to develop a specific ability. All cells of the foetus, both the somatic cells and the germ
p.000035: line cells, will carry the new gene. The child will possess the required property thanks to the activity of the gene
p.000035: that has its expression in the somatic cells. But a quick calculation based on the elementary genetics
p.000035: of Mendel shows that the share of individuals with the optimised phenotype (this means with the new
p.000035: characteristic) in the offspring will reduce in time.
p.000035: Let us assume that a phenotype is determined by gene a. The non-modified persons have 2 copies of gene a in each cell:
p.000035: one of paternal origin and one of maternal origin; we can say that the persons are a/a.
p.000035: We will call the gene that determines the desired phenotype gene B. The person receiving gene B has
p.000035: therefore obtained one gene B and one gene a; we can call the person B/a. Because gene B is dominant, the person will
p.000035: possess the required phenotype.
p.000035: The average number of children per couple in Belgium amounts to 1.2.
p.000035: Let us assume that the modification results in a selection advantage and that person B/a has 2 children. Because her
p.000035: partner is not modified (and therefore is a/a), each child of that couple has 1 chance in 2 of having received gene B.
p.000035: In other words, the parent with the required phenotype will have passed on the characteristic to half the offspring.
p.000035: Child B/a will in turn pass gene B to half the offspring.
p.000035: Grandchild B/a with the required phenotype will still only represent a quarter of the offspring of the
p.000035: progenitor.
p.000035: Gene B would therefore have to be introduced 5,000 times in generation 0 in order to have 1% of the population
p.000035: possess the required phenotype after 4 generations (5,000 out of 500,000 persons); this
p.000035:
p.000035:
p.000035: would therefore take approximately 100 years, despite the selection advantage of gene B.
p.000035:
p.000035: Opinion no 33 of 7 November 2005 - Final version
p.000036: 36
p.000036:
p.000036: According to the members, the modification of germ line cells will only have an impact on society if
p.000036: applied en masse (positive state eugenics), something that is impermissible and unrealistic.
p.000036:
p.000036: Finally, as regards the relationship between genotype and phenotype, the members emphasise the specific individuality
p.000036: of the human relating to mental epigenesis, which according to them falls under bio-ethics.
p.000036:
p.000036: Exceptions aside, human individuals , in the infinite diversity of their genomes, as regards their behaviour, are
p.000036: grosso modo tributary to physical and symbolic conditioning at very high level.
p.000036:
p.000036: Mental development, an important property linked to language, graphic image-forming and virtualised
p.000036: behaviour, is based on epigenetic foundations. These are to a large extent influenced by ambient
...
p.000038: applications.
p.000038:
p.000038: Standpoint A
p.000038:
p.000038: Certain members of the Advisory Committee on Bioethics are against a prohibition of recombinant DNA
p.000038: techniques for the human germ cell line. They are of the opinion that when these techniques have been refined, it must
p.000038: be decided case by case about the acceptability of the recombinant DNA technology, depending on the context and
p.000038: the characteristics of the intended experiments. There is no reason at all to assume in advance that at some time
p.000038: the recombination of the germinal genome among humans will not be able to take place in circumstances
p.000038: with a minimum risk.
p.000038:
p.000038: These members dispute the idea that individuals provided with improved physical and cognitive capabilities can only be
p.000038: morally inferior to “natural people”. These modified people could on the contrary have a ”broader” conscience, and
p.000038: accordingly show greater sensitivity to rightfulness and higher moral values.
p.000038:
p.000038: They are also of the opinion that if a reliable and relatively simple genetic modification technique is
p.000038: available, the consequences of not taking action are just as great as taking any action.
p.000038:
p.000038: These members are of the opinion that gene therapy will be able to contribute to the reduction of certain inequalities
p.000038: between individuals. In the context of the future application of genetic recombination among people, a child may ask
p.000038: him/herself at a certain time why he does not have better genes such as a friend whose parents have not
p.000038: refused optimisation (memory, intelligence, health) in the name of respect for “human nature” and the genetic
p.000038: lottery. These members are certain that one may not underestimate the advantages a person could gain from such
p.000038: experiments.
p.000038:
p.000038: These members are aware of the fact that the phenotype of a person is the result of interaction between the genome
p.000038: and the internal environment (cellular and somatic) and the external environment (the physical, biological
p.000038: and social-cultural environment) during a person's development. They do emphasise, however, that in an
p.000038: equivalent and stable environment an important part of interindividual variation can be attributed to genetic
p.000038: factors.
p.000038:
p.000038: These members are of the opinion that any reasoning based on all or nothing must be avoided. This reasoning gives
p.000038: support to people who are radically against the modification of the germinal genome in humans. Regulations
p.000038: that do not evolve and are rigid with an absolute and final prohibition of positive eugenics and a very restrictive
p.000038: list for negative eugenics can only push research to become clandestine and applications to join the black market. A
p.000038: prohibition would indeed not prevent technologies developing when highly desired.
p.000038: If one on the other hand accepts that genetic modification is not necessarily a bad thing, the real but very difficult
...
Searching for indicator children:
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p.000006: mitochondrial dysfunction in Down’s syndrome”, Neuron 33, P. 677-688.
p.000006:
p.000006: Opinion no 33 of 7 November 2005 - Final version
p.000007: 7
p.000007:
p.000007: or interfering RNA is inserted to inhibit the expression of a gene, and in so doing impede the production of its
p.000007: protein product.
p.000007: To achieve the therapeutic transgenesis a ‘normal’ gene is isolated that is connected to a vector, so a
p.000007: recombinant DNA is formed, which the whole must be correctly inserted in the host genome to produce the sought
p.000007: substance.
p.000007:
p.000007: Another form of gene therapy concerns mitochondrial DNA.
p.000007: Each mitochondrion contains a DNA molecule that contains approximately 40 genes in constant dialogue with the
p.000007: nuclear DNA. Medical observations appear to demonstrate a connection between certain neurological disorders and
p.000007: mitochondrial defects.
p.000007: One believes that the interactions between nuclear DNA and mitochondrial DNA should be analysed for the
p.000007: purposes of future therapeutic programmes.
p.000007:
p.000007: Finally, we will discuss assisted reproduction by cytoplasm transfer, even if the technique does not really
p.000007: fall under gene therapy.
p.000007: Experiments have taken place with oocyte heteroplasmy to treat the syndrome of the moderate development of the human
p.000007: embryo. The transport of cytoplasm from a normal donor egg cell to a deficient receiving egg cell led in an
p.000007: experimental series to 13 births out of 30 implanted embryos. Two of the 13 children had chromosomal defects, and
p.000007: one appeared at 18 months to have the disorder “Pervasive Development Disorder”.
p.000007: Oocyte heteroplasmy, that since 1997 has resulted in some thirty births, could therefore be suitable to
p.000007: stimulate the reproductive capacity of deficient egg cells. Children born using this technique, however, all show
p.000007: signs of mitochondrial heteroplasmy, and little is still known about the effects of this. Epigenetic
p.000007: modification could also occur.
p.000007: At present we do not yet know which the factors work positively or negatively with oocyte heteroplasmy.
p.000007: The Food and Drug Administration has prohibited the continuation of testing in this field.3
p.000007:
p.000007: I.4. Current legal framework in Belgium
p.000007: The term ‘eugenic purpose’ is mentioned in the law of 11 May 2003 concerning research into embryos in vitro. In
p.000007: article 5, 4° the law takes a clear standpoint against eugenics: “It is forbidden to carry out research or
p.000007: treatments with a eugenic purpose, this means aimed at the selection or the improvement of non-pathological genetic
p.000007: properties of the human species.”
p.000007:
p.000007: This provision must be considered in relation to article 3 of the same law in which, under the conditions which must be
p.000007: met before research into embryos may start, it must be determined that this research has a therapeutic purpose.
p.000007:
p.000007: From the preparatory activities (statements from the legislative proposal concerning research into embryos in vitro,
p.000007: submitted by Messrs Monfils and Mahoux - Doc. Senate 2000-2001-2- 695) it appeared clear that as regards
p.000007: intervention with the human genome the legislator wanted to make a distinction between germ track therapy
p.000007: aimed at improving the human species (and that must be prohibited) and therapeutic germ track therapy aimed at
p.000007: combating a number of diseases such as chorea of Huntington, mucoviscidosis, haemophilia and various
p.000007: neurodegenerative illnesses.
p.000007:
...
p.000010: Nature, 1990 Apr 19;344(6268):768-70; Handyside AH, Pattinson JK, Penketh RJ, Delhanty JD, Winston RM, Tuddenham
p.000010: EG, « Biopsy of human preimplantation embryos and sexing by DNA amplification », Lancet, 1989 Feb
p.000010: 18;1(8634):347-9. Handyside, A.H. et al., Birth of a normal girl after in vitro fertilization and preimplantation
p.000010: diagnostic testing for cystic fibrosis, The New England Journal of Medicine, 1992, 327, p.905-909.
p.000010:
p.000010: Opinion no 33 of 7 November 2005 - Final version
p.000011: 11
p.000011:
p.000011: affected foetus;
p.000011: - couples with a risk of a child affected by a genetic illness or deformity and who are against VPT.
p.000011:
p.000011: At international level PGD is increasingly applied for the screening of aneuploidy and for sex selection for
p.000011: non-medical reasons9.
p.000011:
p.000011: A recent extension of PGD indications is HLA blastomer profiling, a process wrongly labelled “designer baby” by the
p.000011: media10.
p.000011:
p.000011: Preimplantation diagnosis including the variant HLA blastomer profiling raises ethical questions for which opinion will
p.000011: have to be drawn up.
p.000011:
p.000011: II.3.2. Private negative eugenics: current situation
p.000011:
p.000011: Private eugenics is a form of eugenics connected to the use of prenatal identification techniques and
p.000011: pre-implantation diagnosis. As a result, one can avoid couples having children carrying a hereditary illness or
p.000011: disability11.
p.000011:
p.000011: Current biological and medical events (medically assisted reproduction, prenatal and pre- implantation
p.000011: diagnostics, genetic treatment attempts, programme for the mapping of and sequence-determining of the human
p.000011: genome) again brought the question of eugenics to the foreground. The idea of “eugenics” itself is again raising
p.000011: concern among some.
p.000011:
p.000011: But eugenics related to progress achieved in genetics and in new techniques of medically assisted
p.000011: reproduction is not of the same nature as state eugenics as developed in pre-war Germany and in the United
p.000011: States, and that is still currently being applied in China. We may therefore not use the same terminology for
p.000011: practices with such a totally different context and purposes. State eugenics has the purpose of enforcing “the
p.000011: enhancement of the human species”.12, and that is not the case with private eugenics. Because of the emotional
p.000011: charge of the term “eugenics”, some think that one can better not use this terminology in a situation that concerns
p.000011: the freedom and autonomy of the parents. Other people believe that instead of avoiding the term
p.000011: eugenics, one must rather draw attention to the fundamental distinction between “state eugenics” and its
p.000011: derivatives on the one hand, and on the other hand contemporary techniques for diagnosis and medically
p.000011: assisted reproduction, that one can callprivate eugenics. These are indeed terms concerning radically different
p.000011: circumstances and purposes
p.000011:
p.000011: Today biotechnology is developing in the context of respect for the autonomy of the individual. The techniques used in
p.000011: negative eugenics do not change the human species. They are simply the orientation of the future of a number of
p.000011: individuals. “New eugenics” is related to technical scientific advances in genetics and medically assisted
p.000011: reproduction. It respects the individual, the free choice of the parents who by resorting to these techniques want
p.000011: children and wish to keep the risk of disabilities with the birth as minimal as possible. Genetic
p.000011: counselling – preferably before the pregnancy - consists of determining the risk of having a child with
p.000011: a specific illness, and informing the parents about the possibility of prenatal diagnosis (PD) or
p.000011:
p.000011: 9 Sermon, K., Moutou, C., Harper, J. et al. (2004), “ESHRE PGD Consortium data collection IV: May -
p.000011: December 2001” in Human Reproduction 20 (1): 19-34.
p.000011: 10 For this technique: see G. Pennings, R. Schots and I. Liebaers, Ethical considerations on preimplantation genetic
p.000011: diagnosis for HLA typing to match a future child as a donor of haematopoietic stem cells to a sibling in Human
p.000011: Reproduction, Vol.17, nr. 3, 534-538, 2002.
p.000011: 11 Carol, Anne, « Histoire de l’eugénisme en France », Parijs, Seuil, 1995; Duster, T., « Retour à
p.000011: l’eugénisme », (traduit de l’anglais par Colette Estin), Paris, Kimé, 1992 ; Missa, J.-N. et Susanne, C., « De
p.000011: l’eugénisme d’Etat à l’eugénisme privé », De Boeck, 1999 ; Taguieff, P.-A., « Retour sur l’eugénisme,
p.000011: question de définition » in Esprit, n° 200, Paris, Mars-Avril 1994 ; Testart, J., « Le désir du gène », Editions
p.000011: François Bourin, 1992 ; Thomas, J.-P., « Les fondements de l’eugénisme », Presses Universitaires de France,
p.000011: Parijs, 1995.
p.000011: 12 “L’individu n’est rien, l’espèce est tout ”wrote eugenist, Nobel Prize winner and physiologist Charles
p.000011: Richet in 1922. This idea was later adopted in a racist form in the motto of the Nazis: “du bist nichts, dein Volk ist
p.000011: alles” “you are nothing, your people is everything”.
p.000011:
p.000011: Opinion no 33 of 7 November 2005 - Final version
p.000012: 12
p.000012:
p.000012: pre-implantation genetic diagnosis (PGD), and the implications of these diagnoses. If no therapeutic
p.000012: solution exists for the abnormality diagnosed during the pregnancy, and if the parents and professionals
p.000012: consider this a serious abnormality, the result will usually be voluntary pregnancy termination. Abortion
p.000012: can be applied with chromosomal aberrations (mongolism, etc.) or with serious metabolic disorders (Tay-Sachs
p.000012: Disease, etc.). The technique of prenatal diagnosis leads to the practice of negative eugenics, so one prevents
p.000012: children being born who suffer from serious abnormalities. Parallel to this the right to abortion is given legal
p.000012: support in very many countries: Great Britain (1967), United States (1973), France (1975), the Netherlands (1981),
p.000012: Belgium (1990), etc.
p.000012:
p.000012: II.3.3. Ethical considerations
p.000012:
p.000012: II.3.3.1.
p.000012: Certain groups in society are completely against any form of eugenics, collective and private.
p.000012:
p.000012: - The essential argument is based on the consideration of the embryo to be a human person from fertilisation
p.000012: (standpoint mentioned by the Committee in opinion no. 18 of 16 September 2002, chapter IV, item 4.2.1.) or that
p.000012: it has sufficient personality characteristics so the termination of its further development should be completely
p.000012: forbidden. This implies that VPT is not acceptable, even in the case of illness or serious deformations.
p.000012: These people deem PGD unacceptable because this implies that selection has occurred, and that this has the
p.000012: inevitable effect of certain embryos being eliminated.
p.000012: - They also put forward the idea that the acceptance of private eugenics deviously puts pressure on women who refuse
p.000012: these techniques. This would lead to imperative collective eugenics that, due to economic or cultural pressure, would
p.000012: be similar to state eugenics.
p.000012: - Finally, they suggest that the importance attached to the avoidance of the birth of a child with an abnormality
p.000012: would have a negative influence on our attitude to disabled children already born, and the care they
p.000012: receive.13
p.000012:
p.000012: Some members have the following remarks.
p.000012: The first argument is based on an extreme standpoint about the status of the embryo and the foetus.
p.000012: The second argument refers to an unavoidable phenomenon. From the time of a value being accepted by the majority of the
p.000012: people, one perceives a tendency to follow the movement. The evaluation of this process depends on the value one
p.000012: attaches to one of the standpoints taken. For a number of years, some Dutch, strongly protestants villages did not
p.000012: accept vaccinations against poliomyelitis. After having seen the baleful consequences of their non-acceptance with
p.000012: their own eyes they moved behind the majority standpoint. It cannot be ruled out that a similar movement may form
p.000012: with respect to VPT, for example with trisomy 21. This involves an evolution in social attitudes, an
p.000012: evolution not seen as negative by everyone.
p.000012: The third argument can be rebutted by remembering the distinction between a human person (born living and viable) and
p.000012: an embryo, and the imperative obligation to guarantee the welfare of all persons and more specifically the least
p.000012: privileged.
p.000012:
p.000012: II.3.3.2.
p.000012: Among the population and specialists in genetics and medically assisted reproduction, there exists a certain
p.000012: consensus about the fact that one considers PD (followed by VPT) and PGD ethically acceptable in “severe”
p.000012: or “serious” cases.
p.000012:
...
p.000012: www.généthique.org/doss_theme/dossiers/eugénisme/eugénisme_jmlm.htm
p.000012:
p.000012: Opinion no 33 of 7 November 2005 - Final version
p.000013: 13
p.000013:
p.000013: II.3.3.3.
p.000013: Agreement has not, however, been reached about the ethical question of what a “severe” or “serious”
p.000013: disorder or deformity is. Professional associations involving clinical geneticists, reproductive technology and
p.000013: bio-ethical advisers have still not yet agreed about the drawing up of a list of disorders which are accepted as
p.000013: serious enough to justify a PGD or PD. There are indeed more than 5,000 monogenetic disorders, and nearly all of these
p.000013: disorders show signs of variable severity and clinical evolution (see H. Galjaard, a.c.).
p.000013:
p.000013: It appears normal that specialists hesitate in stating their personal opinion about the question of the severity or
p.000013: gene disease or abnormality. It is indeed the future parents who must bare the responsibility for the child
p.000013: disorder. The estimation of the severity of this disorder is determined by the cultural and social environment
p.000013: (the geographic factor - such as e.g. in the Third World - or financial resources), by their family history (other
p.000013: disabled children), by their religious convictions and by their conviction about what a valuable life is for themselves
p.000013: and for their unborn child.
p.000013:
p.000013: If one takes account of the fact that in very many legal systems VPT is allowed for psychosocial reasons (which are
p.000013: difficult to define), it would be somewhat paradoxical that disorders, abnormalities or malformations
p.000013: originating from the medical domain would not be accepted as a justification for VPT or PGD.
p.000013:
p.000013: Certain members of the Committee therefore believe that the decision about the justification of the use of these
p.000013: techniques in essence must first be taken by the parents concerned (or by the mother), after of course they have
p.000013: received correct and complete information beforehand about the disorder, including the consequences in the medium and
p.000013: longer term.
p.000013:
p.000013: II.3.3.4.
p.000013: But even if one accepts to follow the decision of the parents as regards actions of a negative private eugenistic
p.000013: nature with disorders or malformations that are medically acknowledged as pathology, problems still exist.
p.000013: If on the one hand some disorders occur at birth or straight afterwards, there are on the other hand also disorders
p.000013: which only develop at 40, 60 or 80 years of age. And here there are disorders that everyone sees
...
p.000022: 30 Haldane, J.B.S., Daedalus or Science and the Future, London, Kegan Paul, 1925; Muller, H.J., Hors de la nuit,
p.000022: traduction française de Jean Rostand, Paris, Gallimard, 1938, p. 118 (original publication: Out of the Night, Vangard
p.000022: Press, 1935).
p.000022:
p.000022: Opinion no 33 of 7 November 2005 - Final version
p.000023: 23
p.000023:
p.000023: A number of scientists share the standpoints of the bioprogressive philosophers. James Watson, co-discoverer of the
p.000023: double helix structure of DNA, does not mince words in expressing the importance of the recombination of germ
p.000023: cell DNA. “No one has the nerve to say so, but if we could make better people because we know how we can add
p.000023: genes, why shouldn't we do this31?”. In his book Redesigning Humans, Gregory Stock, professor at the
p.000023: University of California in Los Angeles, tries to convince his readers of the inevitability of the
p.000023: genetic modification of human germ cells32. Stock is convinced that the genetic modification of the person
p.000023: is a logical consequence of progress achieved in the different sectors of the research: in vitro fertilisation, somatic
p.000023: gene therapy, the mapping of the human genome, experiments with the introduction of artificial chromosomes.
p.000023: Stock mentions a survey performed by Darryl Macer — director of the Eubios Ethics Institute in Japan — concerning the
p.000023: perception (about technology for selecting germ cells) of the general public in different countries. If one offers the
p.000023: general public the possibility of correcting genetic defects or enhancing the physical and mental capacities of their
p.000023: children, an important part of the population seems to be in favour of this: 22 % in Israel, 43 % in the United States,
p.000023: 63 % in India and 83 % in Thailand, and these figures would without doubt be even higher in Singapore, Korea or China.
p.000023: These countries have indeed invested enormously in their biotechnology. When a relatively inexpensive technology is
p.000023: made available in thousands of laboratories across the whole world, use will be made of it. Without doubt,
p.000023: the limitations and prohibitory rules originating from national authorities or international ‘biopolitical’
p.000023: organisations will not suffice in preventing the genetic modification of the person being applied. Stock
p.000023: assumes that it is preferable for these experiments to take place in all transparency at university laboratories or
p.000023: within research units of large private biotechnological companies, than in the semi-
p.000023: clandestineness of laboratories of religious sects.
p.000023: The report specified above from the President’s Council on Bioethics studies the ethical problems relating
p.000023: to enhancement medicine. Thanks to biotechnology we have access to a number of experimental techniques (that
p.000023: indeed have already been tested on animals and some of them also on people) that indicate that in the more or less near
p.000023: future, techniques will be developed that go further than ordinary therapy: selection or the genetic
p.000023: modification of embryos, the enhancement of certain cognitive capacities of children and adults (attention,
p.000023: memory), enabling athletes to perform better (mainly by activities on the genome of the muscle cells), the retarding of
p.000023: aging and the lengthening of the working life, changing of the mood. Even if the clinical application of certain
p.000023: technologies still appears uncertain or distant, the members of the American committee still believe that
p.000023: it is important to today study the potential effects of this performance-related biotechnology on medicine and
p.000023: the community33.
p.000023:
p.000023:
p.000023:
p.000023: 31 Watson, J.D., DNA, The secret of life, Knopf, New York, 2003.
p.000023: 32 Stock, Gregory, Redesigning humans, Houghton Mifflin Company, 2002. “We know that Homo sapiens is not the final
p.000023: word in primate evolution, but few have yet grasped that we are on the cusp of profound biological change, poised to
p.000023: transcend our current form and character on a journey of new imagination”. “At first glance, the very notion that we
p.000023: might become more than human seems preposterous. After all, we are still biologically identical in virtually
p.000023: every respect to our cave dwelling ancestors. But this lack of change is deceptive. Never before have
p.000023: we had the power to manipulate human genetics to alter our biology in meaningful, predictable ways.
p.000023: Bioethicists and scientists alike worry about the consequences of coming genetic technologies, but few have thought
p.000023: through the larger implications of the wave of new developments arriving in reproductive biology. “
p.000023: 33 “This report offers less a list of many things to think about than a picture of one big thing to think
p.000023: about: the dawning age of biotechnology and the greatly augmented power it is providing us, not only for gaining
p.000023: better health but also for improving our natural capacities and pursuing our own happiness. The ambitious project for
p.000023: the mastery of nature, the project first envisioned by Francis Bacon and René Descartes in the early
p.000023: seventeenth century, is finally yielding its promised abilities to relieve man’s estate. Though our society will, as a
p.000023: matter of public practice, be required to deal with each of these techniques and possibilities as they arrive,
p.000023: piecemeal and independently of one another, we should, as a matter of public understanding, try to see what they might
p.000023: all add up to, taken together. The Council’s experience of considering these disparate subjects under this one
p.000023: big idea — beyond therapy, for the Pursuit of Happiness - and our discovery of overlapping ethical
p.000023: implications would seem to vindicate the starting assumption that led us to undertake this project in the first
p.000023: place: biotechnology beyond therapy deserves to be examined not in fragments, but as a whole” .
p.000023:
p.000023: Opinion no 33 of 7 November 2005 - Final version
p.000024: 24
p.000024:
p.000024: The report embraces four subjects: selection and modification of embryos (chapter 2 with as title “Better
p.000024: children”), enhancement of athletic performance (chapter 3: “Superior performance”), prolonging
p.000024: life (chapter 4: “Ageless bodies”), modification of emotive life and cognitive functions (chapter 5: “Happy
p.000024: souls”).
p.000024: Even if the conclusions of this document are cautious and invite moderateness, the reading of the reports of the
p.000024: different information sessions (during these sessions the members of the committee could enter into
p.000024: dialogue with scientific experts) prior to the drawing up of the document leaves little doubt about the
p.000024: unavoidable nature of the development of this non- therapeutic medicine34“.
p.000024: We note that even if the majority of the scientists interviewed by the American committee are convinced of the
p.000024: inescapable nature of the application of such optimising/enhancement biotechnological action on the person, the
p.000024: conclusions of the members of the committee are more reserved.
p.000024: The moderateness of the members of the President’s Council on Bioethics contrasts strongly with the
p.000024: ‘technophile’ enthusiasm of the supporters of transhumanism, a well-structured movement that originated
p.000024: in the United States and that argues for the biophysical transformation of the person. The
p.000024: transhumanists have the idiosyncrasy that they – sometimes with a certain naivety and simplism -develop a virulent
p.000024: technophile enthusiasm. Their purpose is to exceed the current form of the person. They want to leave the
p.000024: contemporary medical paradigm behind them, that is based on a distinction between therapeutic and non-therapeutic
...
p.000025: despite the cautious, favourable opinion of the different scientific experts heard by the committee. In the
p.000025: conclusions of its report the President’s Council on Bioethics mentions two reasons for concern with
p.000025: respect to non- therapeutic medicine. First of all there are the traditional reasons for concern, related to the
p.000025: safety of the experiments, to their effects on health, social justice and equal accessibility to these
p.000025: improved biotechnologies. More specifically the risk is emphasised of the occurrence of a “biotechnologically improved
p.000025: aristocracy40“. As a result, the gap between the privileged and the underprivileged within American society
p.000025: could be made still wider. Biotechnological developments could also limit individual freedoms and create
p.000025: social conformism with respect to certain developments made possible by the new medicine41.
p.000025:
p.000025:
p.000025: 37 Habermas, J., The future of human nature, Polity Press, Cambridge (UK), 2001.
p.000025: 38 Kass, L.R., Life, liberty and the defense of dignity, Encounter Books, San Francisco, 2001.
p.000025: 39 Fukuyama, F., Our posthuman future, Farrar, Straus and Giroux, New York, 2002.
p.000025: 40 Beyond Therapy: Biotechnology and the Pursuit of Happiness, The President’s Council of Bioethics,
p.000025: Washington D.C., October 2003, chapter 5.
p.000025: 41 “What is freely permitted and widely used may, under certain circumstances, become practically
p.000025: mandatory. If most children are receiving memory enhancement or stimulant drugs, failure to provide
p.000025:
p.000025: Opinion no 33 of 7 November 2005 - Final version
p.000026: 26
p.000026:
p.000026: Certain members of the American committee, under the leadership of Leon Kass, are of the opinion that enhancement
p.000026: biotechnology raises more fundamental ethical questions, questions that go to the core of what it means to be human.
p.000026: These essential questions – raised by them possibly in the form of an initial feeling of aversion or
p.000026: rejection with respect to specific biotechnological applications42 — concern the question of human nature
p.000026: and human dignity. The “natural order” would therefore be threatened by the human hybris “playing God”.
p.000026: The dignity of human activity would be threatened by “non-natural” means. The preservation of our identity would also
p.000026: be threatened by attempts of self-transformation. Finally, the development of the person would be threatened by
p.000026: conformistic research into the artificial substitution of natural functions. These ontotheological arguments appeal
p.000026: to emotional factors based on an aversion to the person starting to play God while he is not in the possession of
p.000026: the wisdom of God43.
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026:
p.000026: them for your child might be seen as a form of child neglect. If all the defensive linemen are on steroids, you risk
p.000026: mayhem if you go against them chemically pure. And, a point subtler still, some critics complain that, as with cosmetic
p.000026: surgery, Botox and breast implants, many of the enhancement technologies of the future will very likely be used
p.000026: in slavish adherence to certain socially defined and merely fashionable notions of ‘excellence’ or
p.000026: improvement, very likely shallow and conformist. If these fears are realized, such exercises of individual
p.000026: freedom, suitably multiplied, might compromise the freedom to be an individual” (Beyond Therapy:
p.000026: Biotechnology and the Pursuit of Happiness, The President’s Council of Bioethics, Washington D.C., October
p.000026: 2003, chapter 5).
p.000026: 42 “The subject being relatively novel, it is difficult to put this worry into words. We are in an area where initial
p.000026: revulsions are hard to translate into sound moral arguments. Many people are probably repelled by the idea of drugs
p.000026: that erase memories or that change personalities, or of interventions that enable seventy-year-olds to bear
p.000026: children or play professional sports, or, to engage in some wilder imaginings, of mechanical implants that would
p.000026: enable men to nurse infants or computer -brain hookups that would enable us to download the Oxford English
p.000026: Dictionary.” Beyond Therapy: Biotechnology and the Pursuit of Happiness, The President’s Council of Bioethics,
p.000026: Washington D.C., October 2003, chapter 5.
p.000026: 43 “The mere playing at being God, the hubris of acting with insufficient wisdom “ Beyond Therapy:
p.000026: Biotechnology and the Pursuit of Happiness, The President’s Council of Bioethics, Washington D.C., October
p.000026: 2003, chapter 5.
p.000026:
p.000026: Opinion no 33 of 7 November 2005 - Final version
p.000027: 27
p.000027:
p.000027: IV. 2. Ethical discussion within the Committee concerning germinal gene modification
p.000027: IV. 2.1. Standpoint A
p.000027:
p.000027: Some members of the Advisory Committee on Bioethics are against a principle prohibition of the techniques for
p.000027: recombination of human germinal DNA. They believe that the acceptability of DNA recombination techniques, when they
p.000027: have been fully refined, will have to be judged case by case in the light of the context and the nature of the intended
p.000027: experiment. They argue for an attitude of open and alert monitoring of the technological sciences. They believe it is
p.000027: better to avoid the everything-or-nothing reasoning of those who radically oppose the modification of the germinal
p.000027: genome in the human being. In the talk of the bioconservatives the market, individualism and liberal
p.000027: eugenics are all too often regarded as necessarily poorly or impossible to regulate. The only salutary reaction
...
p.000027:
p.000027: Opinion no 33 of 7 November 2005 - Final version
p.000028: 28
p.000028:
p.000028: not or poorly compensated. If on the contrary we accept that genetic intervention is not by definition
p.000028: a bad thing, the real but very difficult questions arise: those of the vigilant monitoring of eugenistic
p.000028: research and eugenistic development, and particularly that of rightful availability and fair access. It is exactly the
p.000028: political-philosophical questions that we must dare to tackle, instead of merely accepting the hypothesis that genetic
p.000028: recombination of the human being can be applied in the more or less near future. The questions of political philosophy
p.000028: are for that matter now already being widely discussed in Anglo-American literature: the genetic possibilities
p.000028: are taken seriously and the conclusions are rarely of the all-or-nothing type. On the contrary, it is attempted to
p.000028: determine balanced conditions and rules without minimising the risks, advantages and disadvantages, particularly
p.000028: based on the prevailing political philosophies (those of J. Rawls and R. Nozick)45.
p.000028:
p.000028: As regards the objection that the modification of the genome of a human being would be a threat to natural
p.000028: diversity (if you could design your children à la carte, certain beauty features and intelligence characteristics
p.000028: would be obtaining desirable natural diversity), it can be suggested that the opposite is rather the case. The
p.000028: realm of possibilities increases with DNA recombination. The diversity of tastes and cultures is large enough to
p.000028: ensure people would not all make the same choices. Furthermore, this concerns genetic modification. The weight of the
p.000028: environment and of epigenetic modification, where it is often forgotten that they are just as biological, may
p.000028: not be underestimated. The genes form the structure of the body and the brain. The environment models and changes the
p.000028: neuronal architecture. Nature and culture both have a biological base. The conceptual contrast between genetic
p.000028: conditioning and symbolic (culture-, environment- and education-related) conditioning must therefore be seen as
p.000028: a gradation difference and not as a difference in nature. Symbolic conditioning is not immaterial. It requires a
p.000028: dynamic structural change of the neuronal networks which originate due to education and interaction with the
p.000028: environment. As regards genetic conditioning, this is not necessarily irreversible. It cannot be ruled out
p.000028: that genetic engineering will be able to reverse what it has already done, or develop molecules that can allow the
p.000028: individual to choose to activate certain genes or otherwise. The genes are indeed continuously activated or deactivated
p.000028: by information from the environment. With his/her behaviour the informed individual can work on his/her
p.000028: good and poor genetic dispositions or not.
...
p.000034: - the modulation of the effects of the products of a gene by internal or external ambient factors.
p.000034:
p.000034: Opinion no 33 of 7 November 2005 - Final version
p.000035: 35
p.000035:
p.000035: others. The current development of functional genomics requires a greater sense of responsibility
p.000035: when using genetic instruments for curative or enhancement purposes. This can entail the inadequateness of eugenics
p.000035: that is based on germinal line gene modification.
p.000035:
p.000035: IV. 2.3.2.
p.000035: As regards private eugenics these members in the first instance consider it necessary to clarify what genetic changes
p.000035: in the germ line could result in. Here two types of changes are considered. The first type concerns
p.000035: the “correction” of monogenic genetic disorders such as mucoviscidosis, myopathy of Duchenne, chorea of
p.000035: Huntington. The second type concerns genetic modification of germ line cells for the purposes of “optimisation”.
p.000035:
p.000035: As far as monogenic genetic illnesses are concerned, information infers that IVF in combination with preimplantation
p.000035: diagnostics (PGD) strongly reduces the risk of the birth of a child with such a hereditary illness in
p.000035: families where the risk is real. The need for gene therapy on cells of the germ line is as a result very
p.000035: limited. Despite the possibilities of PGD, however, a small number of children will still be born with
p.000035: a hereditary illness. A mutation can indeed occur during the production of the cells of the germ line or in the
p.000035: course of the very first development stages. The children should be able to be helped with the therapeutic genetic
p.000035: modification of somatic cells (see chapter III of this opinion).
p.000035:
p.000035: Enhancement genetic modification in the germ line on its part would, according to literature, be particularly aimed
p.000035: at sporting, intellectual, cognitive, emotional, behaviour-bound and psychological performance (access to
p.000035: happiness). These parameters do not only depend on the genome, but mainly on epigenetic processes that
p.000035: function in extremely complex and particularly plastic networks. This also concerns factors loaded with
p.000035: individual and social values, with a strong cultural component.
p.000035: Assumptions about controlling physical, spiritual or behavioural performance in humans by gene manipulation
p.000035: in the germ line are currently based on pure conjecture. There is for that matter another transgenerational aspect:
p.000035: genetic modification would be forced upon certain individuals of the offspring whose nuclear and mitochondrial
p.000035: environment and epigenetic cell environment is still unknown, and that would have unpredictable consequences on the
p.000035: resulting phenotype, without account being able to be taken of the requirements and environment with which the
p.000035: offspring will be confronted.
p.000035:
p.000035: As regards collective eugenics the benefit of enhancement genetic modification in the germ line is yet more strongly
p.000035: disputable, because the consequences of such modification being carried out on an individual scale would be diluted
p.000035: during the consecutive crossings 69.
p.000035:
p.000035: 69 If, for example, we take a random sample of the Belgian population of 500,000 inhabitants within which a couple
p.000035: has decided have a child who in the initial stage of his/her development (zygote) received a specific
p.000035: gene that is considered to develop a specific ability. All cells of the foetus, both the somatic cells and the germ
p.000035: line cells, will carry the new gene. The child will possess the required property thanks to the activity of the gene
p.000035: that has its expression in the somatic cells. But a quick calculation based on the elementary genetics
p.000035: of Mendel shows that the share of individuals with the optimised phenotype (this means with the new
p.000035: characteristic) in the offspring will reduce in time.
p.000035: Let us assume that a phenotype is determined by gene a. The non-modified persons have 2 copies of gene a in each cell:
p.000035: one of paternal origin and one of maternal origin; we can say that the persons are a/a.
p.000035: We will call the gene that determines the desired phenotype gene B. The person receiving gene B has
p.000035: therefore obtained one gene B and one gene a; we can call the person B/a. Because gene B is dominant, the person will
p.000035: possess the required phenotype.
p.000035: The average number of children per couple in Belgium amounts to 1.2.
p.000035: Let us assume that the modification results in a selection advantage and that person B/a has 2 children. Because her
p.000035: partner is not modified (and therefore is a/a), each child of that couple has 1 chance in 2 of having received gene B.
p.000035: In other words, the parent with the required phenotype will have passed on the characteristic to half the offspring.
p.000035: Child B/a will in turn pass gene B to half the offspring.
p.000035: Grandchild B/a with the required phenotype will still only represent a quarter of the offspring of the
p.000035: progenitor.
p.000035: Gene B would therefore have to be introduced 5,000 times in generation 0 in order to have 1% of the population
p.000035: possess the required phenotype after 4 generations (5,000 out of 500,000 persons); this
p.000035:
p.000035:
p.000035: would therefore take approximately 100 years, despite the selection advantage of gene B.
p.000035:
p.000035: Opinion no 33 of 7 November 2005 - Final version
p.000036: 36
p.000036:
p.000036: According to the members, the modification of germ line cells will only have an impact on society if
p.000036: applied en masse (positive state eugenics), something that is impermissible and unrealistic.
p.000036:
p.000036: Finally, as regards the relationship between genotype and phenotype, the members emphasise the specific individuality
p.000036: of the human relating to mental epigenesis, which according to them falls under bio-ethics.
p.000036:
p.000036: Exceptions aside, human individuals , in the infinite diversity of their genomes, as regards their behaviour, are
...
p.000037: modifications of the genome, with both a curative purpose and enhancing purpose. The Committee wishes to
p.000037: hereby answer the request for opinion from the Senate in which reference is made to pathological and non-pathological
p.000037: genetic characteristics.
p.000037:
p.000037: As regards eugenics, the members of the Committee are of the opinion that the private selection of
p.000037: eugenics related to the use of prenatal diagnosis (PD) or pre-implantation diagnosis (PGD) is in principle acceptable,
p.000037: providing that one applies certain standards in accordance with the severity of the illness (or abnormality). The
p.000037: informed consent of the parents (or the mother) must also be obtained, and there must be an adequate framework as
p.000037: regards follow-up and the provision of information. The ethical considerations raised by these techniques
p.000037: will be discussed in a separate report.
p.000037: This report therefore concerns the therapeutic or enhancement/optimising modification of the somatic or germinal
p.000037: genome.
p.000037:
p.000037: V. 1. Therapeutic somatic gene modification
p.000037: Therapeutic gene modification has up to the present barely seen successful application. Clinical applications and
p.000037: experience in this matter are insufficient to be able to evaluate its concrete perspectives.
p.000037: The most important clinical application concerns immune-deficient children in a sterile environment. The
p.000037: treatment was recently suspended for the second time because of side effects, and is currently being further
p.000037: investigated.
p.000037: The expectations of somatic gene therapy are, however, great, so great that research is being actively continued.
p.000037:
p.000037: For ethical considerations relating to the clinical application of this technique, the Committee refers to its report
p.000037: no. 13 of 9 July 2001 concerning experiments with persons.
p.000037: The Committee is of the opinion that its ethical evaluation is also applicable to therapeutic gene therapy.
p.000037: More specifically, the Committee considers it important to ensure the safety and efficiency of each clinical
p.000037: application by a far-reaching analysis of the advantages on the one hand, and of any risks to the patient on the other.
p.000037: The principle of caution should be applied with the choice of transport vector and the introduction of
p.000037: the repair gene. One will identify any side-effects of the treatment with care.
p.000037:
p.000037: Therapeutic, somatic gene modification is not distinguishable from other therapeutic innovations or
p.000037: other scientific research in medicine. The Committee has presented ethical arguments in this respect in its
p.000037: report no. 24 of 13 October 2003 concerning human stem cells and therapeutic cloning.
p.000037:
p.000037: It is to be noted that cell therapy (stem cells) is enjoying increasing interest beside gene therapy.
p.000037:
p.000037: V. 2. Enhancement/Optimising somatic gene modification
p.000037: The Committee observes that enhancement/optimising gene modification for non-pathological properties is at present
...
Social / Fetus/Neonate
Searching for indicator foetus:
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p.000002: Opinion no 33 of 7 November 2005 concerning somatic and germinal line gene modification with a therapeutic
p.000002: and/or enhancement purpose
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002: Request for an opinion of. 11 May 2001
p.000002: from A. De Decker, Chairperson of the Senate
p.000002: concerning the ethical and legal aspects of different questions relating to research into embryos in vitro and the
p.000002: protection of these embryos
p.000002:
p.000002: Content of the opinion
p.000002:
p.000002: Questions put to the Committee Foreword
p.000002:
p.000002:
p.000002: CHAPTER I. GENE THERAPIES: STATUS QUESTIONIS
p.000002:
p.000002: I.1. Glossary
p.000002: I.2. Gene – genotype – genetics
p.000002: I.2.1. Traditional conceptual genetics (1865-1945)
p.000002: I.2.2. Molecular or genomic genetics (1944-2000)
p.000002: I.2.3. Post-genomic genetics (2000 - …)
p.000002: I.3. Gene therapy
p.000002: I.4. Current legal framework in Belgium CHAPTER II. EUGENICS
p.000002: II.1. Historical context
p.000002: II.2. Definitions
p.000002: II.3. Negative eugenics by the selection of embryos and/or foetus
p.000002: II.3.1. Historical summary – Medical status questionis
p.000002: II.3.2. Private negative eugenics: current situation
p.000002: II.3.3. Ethical considerations
p.000002: II.4. Positive eugenics by active intervention in the human germ cell line CHAPTERE III. SOMATIC GENE MODIFICATION
p.000002: III.1. Historical summary – Medical status questionis
p.000002: III.2. Therapeutic indications and difficulties
p.000002: III.3. Ethical discussion about somatic gene modification
p.000002: III.3.1. General considerations
p.000002: III.3.2. Specific ethical problems
p.000002:
p.000002: CHAPTER IV. GERMINAL GENE MODIFICATION
p.000002:
p.000002: IV.1. Historical summary
p.000002: IV.1.1. Arguments of ‘bioprogressives’ with respect to the modification of the human genome
p.000002: IV.1.2. Arguments of ‘bioconservatives’ with respect to the modification of the human genome
p.000002: IV.2. Ethical discussion within the Committee concerning germinal gene modification
p.000002: IV.2.1. Standpoint A
p.000002: IV.2.2. Standpoint B
p.000002: IV.2.3. Standpoint C
p.000002:
p.000002: CHAPTER V. CONCLUSIONS AND RECOMMENDATIONS
p.000002:
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p.000002:
p.000002:
p.000002: Opinion no 33 of 7 November 2005 - Final version
p.000002: 2
p.000002:
p.000002: Questions put to the Committee
p.000002: The Senate puts the following question.
p.000002: “[ … ] In view of various legislative proposals pending in the Senate concerning research into embryos and the
p.000002: protection of embryos in vitro;
p.000002: In view of the important social and ethical challenges for political decision making with respect to
...
p.000009: after the termination of the pregnancy after prenatal diagnosis (PD), etc.
p.000009:
p.000009: - Compelling macro-eugenics, sometimes called state eugenics. This involves
p.000009: the introduction of imperative measures at state level. Here the freedom of the individual or the couple is
p.000009: affected. One can interpret the prohibition of marriages between blood relations for genetic reasons as a form of
p.000009: this type of macro-eugenics.
p.000009:
p.000009:
p.000009: 4 The Descent of Man, General Summary, Publisher The Great Books, p. 596
p.000009:
p.000009: Opinion no 33 of 7 November 2005 - Final version
p.000010: 10
p.000010:
p.000010: The example of the policy of compulsory vaccinations indicates that the introduction of imperative measures within the
p.000010: context of public health and imperative measures by the state is therefore not always regarded as unacceptable.
p.000010: However, negative state eugenics was responsible for misuse in the sterilisation and elimination of the mentally ill in
p.000010: the XX century.
p.000010:
p.000010: Each type of eugenics can have a negative form: elimination or reduction of undesired characteristics or a
p.000010: positive form: the promoting of characteristics regarded as desirable.
p.000010:
p.000010: This terminological approach entails no value judgement, but can serve as a starting point for discussions about
p.000010: scientific results and ethical and political standpoints.
p.000010:
p.000010: II.3. Negative eugenics by the selection of embryos and/or foetus
p.000010: II.3.1. Historical summary – Medical status questionis
p.000010:
p.000010: A new medical discipline has developed since the end of the 60's: clinical genetics. Its importance has
p.000010: greatly increased due to scientific progress and reinforced cooperation with gynaecology and obstetrics
p.000010: departments. Pregnant women with an increased risk of a child with a genetic illness can increasingly make use of
p.000010: choriocentesis. 5(11th week) or of an amniocentesis
p.000010: 6 (16th week). These methods can be used to examine if the unborn child is affected by one of the sought
p.000010: abnormalities. Other methods for prenatal diagnosis, including echography, ensure that one can identify
p.000010: abnormalities in a later stage of the pregnancy. Tracing an illness or deformity always confronts the future
p.000010: parents with the decision of whether or not to terminate the pregnancy (VPT, voluntary pregnancy termination).7
p.000010:
p.000010: Resorting to VPT can be avoided in a number of cases by a new form of prenatal diagnosis: pre- implantation genetic
p.000010: diagnostics (PGD). This form of diagnosis assumes the use of in-vitro fertilisation (IVF was introduced
p.000010: in 1978) because this form of identification takes place on embryos fertilised in vitro. Couples of which the
...
p.000010: sterility problem (i.e. already candidates for IVF);
p.000010: - couples with a high genetic risk who have already undergone “traditional” prenatal, diagnostic testing and who
p.000010: have already resorted a number of times to VPT after the detection of an
p.000010:
p.000010:
p.000010: 5 Chorionic villus sampling.
p.000010: 6 Taking of amniotic fluid (fluid from around the fœtus).
p.000010: 7 For this and other information we refer we to: Hans Galjaard, Rapport du CIB sur le diagnostic génétique
p.000010: pré-implantatoire et les interventions sur la lignée germinale, Comité International de Bioéthique de
p.000010: L’Unesco (CIB), Actes, November 2002.
p.000010: 8 In 1989 the first PGD by Handyside was already involved with gender-bound diseases; it was from a
p.000010: technical perspective easier than molecular diagnosis; see: Handyside AH, Kontogianni EH, Hardy K, Winston
p.000010: RM, « Pregnancies from biopsied human preimplantation embryos sexed by Y-specific DNA amplification »,
p.000010: Nature, 1990 Apr 19;344(6268):768-70; Handyside AH, Pattinson JK, Penketh RJ, Delhanty JD, Winston RM, Tuddenham
p.000010: EG, « Biopsy of human preimplantation embryos and sexing by DNA amplification », Lancet, 1989 Feb
p.000010: 18;1(8634):347-9. Handyside, A.H. et al., Birth of a normal girl after in vitro fertilization and preimplantation
p.000010: diagnostic testing for cystic fibrosis, The New England Journal of Medicine, 1992, 327, p.905-909.
p.000010:
p.000010: Opinion no 33 of 7 November 2005 - Final version
p.000011: 11
p.000011:
p.000011: affected foetus;
p.000011: - couples with a risk of a child affected by a genetic illness or deformity and who are against VPT.
p.000011:
p.000011: At international level PGD is increasingly applied for the screening of aneuploidy and for sex selection for
p.000011: non-medical reasons9.
p.000011:
p.000011: A recent extension of PGD indications is HLA blastomer profiling, a process wrongly labelled “designer baby” by the
p.000011: media10.
p.000011:
p.000011: Preimplantation diagnosis including the variant HLA blastomer profiling raises ethical questions for which opinion will
p.000011: have to be drawn up.
p.000011:
p.000011: II.3.2. Private negative eugenics: current situation
p.000011:
p.000011: Private eugenics is a form of eugenics connected to the use of prenatal identification techniques and
p.000011: pre-implantation diagnosis. As a result, one can avoid couples having children carrying a hereditary illness or
p.000011: disability11.
p.000011:
p.000011: Current biological and medical events (medically assisted reproduction, prenatal and pre- implantation
p.000011: diagnostics, genetic treatment attempts, programme for the mapping of and sequence-determining of the human
p.000011: genome) again brought the question of eugenics to the foreground. The idea of “eugenics” itself is again raising
p.000011: concern among some.
p.000011:
p.000011: But eugenics related to progress achieved in genetics and in new techniques of medically assisted
...
p.000012: (standpoint mentioned by the Committee in opinion no. 18 of 16 September 2002, chapter IV, item 4.2.1.) or that
p.000012: it has sufficient personality characteristics so the termination of its further development should be completely
p.000012: forbidden. This implies that VPT is not acceptable, even in the case of illness or serious deformations.
p.000012: These people deem PGD unacceptable because this implies that selection has occurred, and that this has the
p.000012: inevitable effect of certain embryos being eliminated.
p.000012: - They also put forward the idea that the acceptance of private eugenics deviously puts pressure on women who refuse
p.000012: these techniques. This would lead to imperative collective eugenics that, due to economic or cultural pressure, would
p.000012: be similar to state eugenics.
p.000012: - Finally, they suggest that the importance attached to the avoidance of the birth of a child with an abnormality
p.000012: would have a negative influence on our attitude to disabled children already born, and the care they
p.000012: receive.13
p.000012:
p.000012: Some members have the following remarks.
p.000012: The first argument is based on an extreme standpoint about the status of the embryo and the foetus.
p.000012: The second argument refers to an unavoidable phenomenon. From the time of a value being accepted by the majority of the
p.000012: people, one perceives a tendency to follow the movement. The evaluation of this process depends on the value one
p.000012: attaches to one of the standpoints taken. For a number of years, some Dutch, strongly protestants villages did not
p.000012: accept vaccinations against poliomyelitis. After having seen the baleful consequences of their non-acceptance with
p.000012: their own eyes they moved behind the majority standpoint. It cannot be ruled out that a similar movement may form
p.000012: with respect to VPT, for example with trisomy 21. This involves an evolution in social attitudes, an
p.000012: evolution not seen as negative by everyone.
p.000012: The third argument can be rebutted by remembering the distinction between a human person (born living and viable) and
p.000012: an embryo, and the imperative obligation to guarantee the welfare of all persons and more specifically the least
p.000012: privileged.
p.000012:
p.000012: II.3.3.2.
p.000012: Among the population and specialists in genetics and medically assisted reproduction, there exists a certain
p.000012: consensus about the fact that one considers PD (followed by VPT) and PGD ethically acceptable in “severe”
p.000012: or “serious” cases.
p.000012:
p.000012: Some members of the Committee indeed consider that the status of the embryo and the foetus has no part in the status of
p.000012: the person, and that embryos and foetuses only gradually obtain the qualities of a human being according to
p.000012: intra-uterine development.
p.000012: Starting from this consideration, they consider that the distinctive weight assigned on the one hand to an embryo, and
p.000012: on the other hand to the possible or probable suffering of the unborn child arriving in the world with a serious
p.000012: disability, as well as the welfare and the health of future parents, justify resorting to this action.
p.000012:
p.000012:
p.000012: 13 These attitudes are defended, for example, by the Fondation Jérôme Lejeune. See the intervention in the French
p.000012: Senate of President Jean-Marie Le Mené: ‘Y a-t-il un eugénisme “clean”?’ on the site:
p.000012: www.généthique.org/doss_theme/dossiers/eugénisme/eugénisme_jmlm.htm
p.000012:
p.000012: Opinion no 33 of 7 November 2005 - Final version
p.000013: 13
p.000013:
p.000013: II.3.3.3.
p.000013: Agreement has not, however, been reached about the ethical question of what a “severe” or “serious”
p.000013: disorder or deformity is. Professional associations involving clinical geneticists, reproductive technology and
p.000013: bio-ethical advisers have still not yet agreed about the drawing up of a list of disorders which are accepted as
...
p.000032: implicit risk of a health approach that would assume a more or less imperative definition of pathogenic human behaviour
p.000032: is quite clear.
p.000032: 57 The question of fairer redistribution of the limited health care resources raises another question: is the public
p.000032: financing of gene therapies a real priority at present, all the more as private financing is becoming increasingly
p.000032: rare?
p.000032: 58 The politician calls upon the expert because the politician does not have the knowledge; but he
p.000032: nevertheless remains the one who decides, because he will ultimately make the choice… and must therefore
p.000032: take responsibility.
p.000032: 59 “Hygiéniquement correct”, an expression used by Pierre Ronsanvallon in analogy of “politically correct” in his
p.000032: book La Nouvelle question sociale – Repenser L’Etat-Providence, Seuil, 1995.
p.000032: 60 Two totally different situations, medical and social, behavioural and chronological and toxicological and genetic.
p.000032: 61 B. Andrieu. Médecin de son corps, PUF, Parijs, 1999.
p.000032:
p.000032: Opinion no 33 of 7 November 2005 - Final version
p.000033: 33
p.000033:
p.000033: conscience decide to end her pregnancy may obviously not be a subject for discussion. It is very fortunate that the
p.000033: woman today has the right to decide about the quality of the child to be born, and all surveys confirm
p.000033: that 90% of interviewed women would choose abortion in the case of a trisomic foetus. Here also lies the raison d'être
p.000033: for real genetic counselling 63: determining the risk that a foetus is the carrier an anomaly and informing the parents
p.000033: of this. But in this respect it is important to really allow them the freedom to make a choice in all
p.000033: conscience. Otherwise the progress of prenatal diagnosis would no longer be indisputable.
p.000033: As for “democratic eugenics” things are very different to abortion for medical reasons, because in the name of
p.000033: individual freedom the State could introduce eugenics not in that name by putting the full weight of the
p.000033: choice – and of any associated guilt – with the individual, so with the woman expecting an “abnormal” child. If
p.000033: the woman actually has legal access to the knowledge without economic discrimination because all tests and
p.000033: diagnostic and therapeutic operations have been reimbursed, she could therefore be the tool of
p.000033: “biotechnological progress”. Ideally, abortion for medical reasons has the purpose of avoiding serious disorders, and
p.000033: it is a matter discussed at individual level between the physician and patient within an ambiguous legal
p.000033: framework (could this be otherwise?). But in reality the decision is increasingly less often left to the personal
p.000033: ethics of the patient and/or the physician-obstetric. The freedom of choice of the woman is in reality
p.000033: therefore less obvious than we think because it is determined by influential social models, by possible
p.000033: financial considerations, by the family or the general psychological environment, or by an advisor/client
...
p.000035: happiness). These parameters do not only depend on the genome, but mainly on epigenetic processes that
p.000035: function in extremely complex and particularly plastic networks. This also concerns factors loaded with
p.000035: individual and social values, with a strong cultural component.
p.000035: Assumptions about controlling physical, spiritual or behavioural performance in humans by gene manipulation
p.000035: in the germ line are currently based on pure conjecture. There is for that matter another transgenerational aspect:
p.000035: genetic modification would be forced upon certain individuals of the offspring whose nuclear and mitochondrial
p.000035: environment and epigenetic cell environment is still unknown, and that would have unpredictable consequences on the
p.000035: resulting phenotype, without account being able to be taken of the requirements and environment with which the
p.000035: offspring will be confronted.
p.000035:
p.000035: As regards collective eugenics the benefit of enhancement genetic modification in the germ line is yet more strongly
p.000035: disputable, because the consequences of such modification being carried out on an individual scale would be diluted
p.000035: during the consecutive crossings 69.
p.000035:
p.000035: 69 If, for example, we take a random sample of the Belgian population of 500,000 inhabitants within which a couple
p.000035: has decided have a child who in the initial stage of his/her development (zygote) received a specific
p.000035: gene that is considered to develop a specific ability. All cells of the foetus, both the somatic cells and the germ
p.000035: line cells, will carry the new gene. The child will possess the required property thanks to the activity of the gene
p.000035: that has its expression in the somatic cells. But a quick calculation based on the elementary genetics
p.000035: of Mendel shows that the share of individuals with the optimised phenotype (this means with the new
p.000035: characteristic) in the offspring will reduce in time.
p.000035: Let us assume that a phenotype is determined by gene a. The non-modified persons have 2 copies of gene a in each cell:
p.000035: one of paternal origin and one of maternal origin; we can say that the persons are a/a.
p.000035: We will call the gene that determines the desired phenotype gene B. The person receiving gene B has
p.000035: therefore obtained one gene B and one gene a; we can call the person B/a. Because gene B is dominant, the person will
p.000035: possess the required phenotype.
p.000035: The average number of children per couple in Belgium amounts to 1.2.
p.000035: Let us assume that the modification results in a selection advantage and that person B/a has 2 children. Because her
p.000035: partner is not modified (and therefore is a/a), each child of that couple has 1 chance in 2 of having received gene B.
p.000035: In other words, the parent with the required phenotype will have passed on the characteristic to half the offspring.
p.000035: Child B/a will in turn pass gene B to half the offspring.
...
Searching for indicator foetuses:
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p.000012: The second argument refers to an unavoidable phenomenon. From the time of a value being accepted by the majority of the
p.000012: people, one perceives a tendency to follow the movement. The evaluation of this process depends on the value one
p.000012: attaches to one of the standpoints taken. For a number of years, some Dutch, strongly protestants villages did not
p.000012: accept vaccinations against poliomyelitis. After having seen the baleful consequences of their non-acceptance with
p.000012: their own eyes they moved behind the majority standpoint. It cannot be ruled out that a similar movement may form
p.000012: with respect to VPT, for example with trisomy 21. This involves an evolution in social attitudes, an
p.000012: evolution not seen as negative by everyone.
p.000012: The third argument can be rebutted by remembering the distinction between a human person (born living and viable) and
p.000012: an embryo, and the imperative obligation to guarantee the welfare of all persons and more specifically the least
p.000012: privileged.
p.000012:
p.000012: II.3.3.2.
p.000012: Among the population and specialists in genetics and medically assisted reproduction, there exists a certain
p.000012: consensus about the fact that one considers PD (followed by VPT) and PGD ethically acceptable in “severe”
p.000012: or “serious” cases.
p.000012:
p.000012: Some members of the Committee indeed consider that the status of the embryo and the foetus has no part in the status of
p.000012: the person, and that embryos and foetuses only gradually obtain the qualities of a human being according to
p.000012: intra-uterine development.
p.000012: Starting from this consideration, they consider that the distinctive weight assigned on the one hand to an embryo, and
p.000012: on the other hand to the possible or probable suffering of the unborn child arriving in the world with a serious
p.000012: disability, as well as the welfare and the health of future parents, justify resorting to this action.
p.000012:
p.000012:
p.000012: 13 These attitudes are defended, for example, by the Fondation Jérôme Lejeune. See the intervention in the French
p.000012: Senate of President Jean-Marie Le Mené: ‘Y a-t-il un eugénisme “clean”?’ on the site:
p.000012: www.généthique.org/doss_theme/dossiers/eugénisme/eugénisme_jmlm.htm
p.000012:
p.000012: Opinion no 33 of 7 November 2005 - Final version
p.000013: 13
p.000013:
p.000013: II.3.3.3.
p.000013: Agreement has not, however, been reached about the ethical question of what a “severe” or “serious”
p.000013: disorder or deformity is. Professional associations involving clinical geneticists, reproductive technology and
p.000013: bio-ethical advisers have still not yet agreed about the drawing up of a list of disorders which are accepted as
p.000013: serious enough to justify a PGD or PD. There are indeed more than 5,000 monogenetic disorders, and nearly all of these
p.000013: disorders show signs of variable severity and clinical evolution (see H. Galjaard, a.c.).
p.000013:
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Social / Incarcerated
Searching for indicator liberty:
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p.000021: central question in Glover's book. It is his intention to analyse and refute the arguments of those who are
p.000021: in principle opposed to changing human nature by means of genetic modification.
p.000021:
p.000021: 23 See the report of the American committee for bio-ethics Beyond Therapy: Biotechnology and the Pursuit of
p.000021: Happiness, The President’s Council on bioethics, Washington D.C., October 2003. This document is available
p.000021: on the committee's website: www.bioethics.gov. The report has also been published on paper: Beyond Therapy:
p.000021: Biotechnology and the Pursuit of Happiness, A report by the President’s Council on Bioethics, Regan Books,
p.000021: New York, 2003.
p.000021: 24 See for example the following works:
p.000021: 1.President’s Council on Bioethics (2003) Beyond therapy: Biotechnology and the pursuit of happiness. New York: Dana
p.000021: Press. 400 p.
p.000021: 2.McKibben W (2003) Enough: Staying human in an engineered age. New York: Times Books. 271 p. 3.Callahan D (2003) What
p.000021: price better health? Hazards of the research imperative. Berkeley: University of California Press. 329 p.
p.000021: 4.Elliott C (2003) Better than well: American medicine meets the American dream. New York: W. W. Norton. 357 p.
p.000021: 5.Fukuyama F (2003) Our posthuman future: Consequences of the biotechnology revolution. New York: Picador. 272 p.
p.000021: 6.Rothman S, Rothman D (2003) The pursuit of perfection: The promise and perils of medical enhancement.
p.000021: New York: Pantheon Books. 292 p.
p.000021: 7.Kass LR (2002) Life, liberty, and the defense of dignity: The challenge for bioethics. San Francisco: Encounter
p.000021: Books. 313 p.
p.000021: 8.Kristol W, Cohen E, editors (2002) The future is now: America confronts the new genetics. Lanham (Maryland): Rowman
p.000021: and Littlefield. 357 p.
p.000021: 9.Sandel S (2004 April) The case against perfection. Atlantic Monthly 51–62.
p.000021:
p.000021:
p.000025: 25
p.000025:
p.000025: 1. Stock, Gregory, Redesigning humans, Houghton Mifflin Company, 2002.
p.000025: 2. Hughes, J., Citizen Cyborg. Why democratic societies must respond to the redesigned human of the future, Westview
p.000025: Press, Cambridge (Mass.), 2004
p.000025: 26 Glover, J., What sort of people should there be?, Penguin Books, Harmondsworth, 1984, p. 13.
p.000025:
p.000025: Opinion no 33 of 7 November 2005 - Final version
p.000022: 22
p.000022:
p.000022: The strongest objection concerns the risks of genetic recombination among people. Unexpected
p.000022: results are possible, says Glover. If we create people with unanticipated characteristics we will
p.000022: have to take account of this. The possibility of a disastrous, irreversible effect has such dissuasive power that very
p.000022: many people do not want to hear of positive genetic modification. As far as Glover is concerned, the risk of
p.000022: “disasters” means we must take great caution if we proceed along the path of the genetic manipulation of
p.000022: people. Scientists must respect what Glover in 1984 already called the precautionary principle. One may only modify
p.000022: the genes in cases where there is little risk, and the advantages are big enough to justify the intervention.
...
p.000025: such as “Playing God” or “Partner in evolution”. What according to him is a matter of concern is that the separating
p.000025: line is blurred between who we are and the “organic equipment” we give ourselves. He wants to indicate how
p.000025: biotechnology blurs the normal distinction between what is made (the made, the artificial, the soulless machine) and
p.000025: what develops (the natural, the living). The disappearance of the distinction between the natural and the artificial,
p.000025: what will happen in life to the person with a changed genome before birth, can ensure that our ethical understanding
p.000025: can be changed as a member of a species. The self-awareness of the genetically programmed person can also be
p.000025: influenced. As far as Habermas is concerned, human transgenesis is a form of reification of the genetic recombinant
p.000025: individual. When an adolescent learns that an outsider was involved with his genome before his birth and
p.000025: therefore has changed certain characteristics, his perspective of being by natural development can be
p.000025: replaced by the perspective of a synthetically made being. This invasion of the artificial in nature
p.000025: could therefore disturb the psychism of the adolescent, and as a result his choice to live in an individual manner
p.000025: can be limited.
p.000025: Two authors give a good illustration of bioconservative trends in the United States: Leon Kass and Francis Fukuyama.
p.000025: Fukuyama is a member of the President’s Council on Bioethics of which Leon Kass was the chairman. Leon Kass is a
p.000025: professor at the university of Chicago, and one of the most important opponents of the cloning of people and the
p.000025: transgenesis of humans in the United States. In his work Life, Liberty and the Defense of Dignity, he defends this
p.000025: prohibition in the name of human dignity38. Francis Fukuyama, professor at the Johns Hopkins University,
p.000025: defends ideas closely relating to those in his last book Our posthuman future39. Kass has played a central role in the
p.000025: drawing up of the conclusions of the report Beyond Therapy: Biotechnology and the Pursuit of Happiness. This
p.000025: partly explains the distinct reservations expressed with respect to non-therapeutic medicine in this text,
p.000025: despite the cautious, favourable opinion of the different scientific experts heard by the committee. In the
p.000025: conclusions of its report the President’s Council on Bioethics mentions two reasons for concern with
p.000025: respect to non- therapeutic medicine. First of all there are the traditional reasons for concern, related to the
p.000025: safety of the experiments, to their effects on health, social justice and equal accessibility to these
p.000025: improved biotechnologies. More specifically the risk is emphasised of the occurrence of a “biotechnologically improved
p.000025: aristocracy40“. As a result, the gap between the privileged and the underprivileged within American society
p.000025: could be made still wider. Biotechnological developments could also limit individual freedoms and create
p.000025: social conformism with respect to certain developments made possible by the new medicine41.
p.000025:
p.000025:
p.000025: 37 Habermas, J., The future of human nature, Polity Press, Cambridge (UK), 2001.
p.000025: 38 Kass, L.R., Life, liberty and the defense of dignity, Encounter Books, San Francisco, 2001.
p.000025: 39 Fukuyama, F., Our posthuman future, Farrar, Straus and Giroux, New York, 2002.
p.000025: 40 Beyond Therapy: Biotechnology and the Pursuit of Happiness, The President’s Council of Bioethics,
p.000025: Washington D.C., October 2003, chapter 5.
p.000025: 41 “What is freely permitted and widely used may, under certain circumstances, become practically
p.000025: mandatory. If most children are receiving memory enhancement or stimulant drugs, failure to provide
p.000025:
p.000025: Opinion no 33 of 7 November 2005 - Final version
p.000026: 26
p.000026:
p.000026: Certain members of the American committee, under the leadership of Leon Kass, are of the opinion that enhancement
p.000026: biotechnology raises more fundamental ethical questions, questions that go to the core of what it means to be human.
p.000026: These essential questions – raised by them possibly in the form of an initial feeling of aversion or
p.000026: rejection with respect to specific biotechnological applications42 — concern the question of human nature
p.000026: and human dignity. The “natural order” would therefore be threatened by the human hybris “playing God”.
p.000026: The dignity of human activity would be threatened by “non-natural” means. The preservation of our identity would also
p.000026: be threatened by attempts of self-transformation. Finally, the development of the person would be threatened by
p.000026: conformistic research into the artificial substitution of natural functions. These ontotheological arguments appeal
...
Social / Linguistic Proficiency
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p.000028: ensure people would not all make the same choices. Furthermore, this concerns genetic modification. The weight of the
p.000028: environment and of epigenetic modification, where it is often forgotten that they are just as biological, may
p.000028: not be underestimated. The genes form the structure of the body and the brain. The environment models and changes the
p.000028: neuronal architecture. Nature and culture both have a biological base. The conceptual contrast between genetic
p.000028: conditioning and symbolic (culture-, environment- and education-related) conditioning must therefore be seen as
p.000028: a gradation difference and not as a difference in nature. Symbolic conditioning is not immaterial. It requires a
p.000028: dynamic structural change of the neuronal networks which originate due to education and interaction with the
p.000028: environment. As regards genetic conditioning, this is not necessarily irreversible. It cannot be ruled out
p.000028: that genetic engineering will be able to reverse what it has already done, or develop molecules that can allow the
p.000028: individual to choose to activate certain genes or otherwise. The genes are indeed continuously activated or deactivated
p.000028: by information from the environment. With his/her behaviour the informed individual can work on his/her
p.000028: good and poor genetic dispositions or not.
p.000028:
p.000028: Then there is the answer to the ontotheological argument that it is sacrilegious and “morally repulsive” to meddle with
p.000028: human nature. This is an emotional argument that often hides behind language that is not logical and rational,
p.000028: such as the bizarre references in this context to “fundamental human rights”, a “right to the integrity of the
p.000028: genome”, an undefined concept of “human dignity”, that forms the ideal mask for bioconservative standpoints.
p.000028: As the American philosopher Ronald Dworkin emphasised, the power of social resistance against genetic
p.000028: engineering cannot be assessed without understanding the roots of the basic objection.
p.000028: The resistance results from a distinction between what does not depend on us (our genetic patrimony that
p.000028: God – or nature – has given us) and what does depend on us. This concerns the frontier between destiny and freedom,
p.000028: chance and choice. Thanks to or because of genetic engineering, that resulting from destiny will maybe
p.000028: become a matter in our own hands. The shifting of the limits between what does and does not depend on us creates
p.000028: uncertainty and moral unease. This malaise should be rationally considered and not only emotionally. The
p.000028: excessive appeals from bioconservatives to feelings and emotions (disgust, aversion, horror, etc) in their arguments
p.000028: (e.g. Kass's “yuck factor”) can barely hide that they have problems rationally justifying their intuitions –
p.000028: intuitions considered to justify their pursuit to impose a morality with universal pretence. Well then, not only
p.000028: are these irrational intuitive opinions not universally shared, they can also encourage extremely dangerous
p.000028: discrimination criteria. It appears
p.000028:
p.000028:
p.000028: 45 See: Glover, J., What sort of people should there be?, Penguin Books, Harmondsworth, 1984; Buchanan, A., Brock,
...
p.000033: the woman concerned. A third group goes yet further: “proposing” is according to this group a euphemism 64,
p.000033: because the woman's society increasingly expects an “approach with a sense of public responsibility” to public health.
p.000033: Such an approach would then consist of bringing an end to her pregnancy and, again, in so doing accept the obligate
p.000033: norm reference concerning what responsible parenthood and a public sense of responsibility means! They add that the
p.000033: evolution will proceed all the faster if one organises the disappearance of pathologies of which one does not know the
p.000033: causes, and society does not make the necessary efforts to offer “persons disabled by the genome” and their nearest
p.000033: real possibilities of integration and development.
p.000033: The arguments of the respective supporters of the three standpoints about the so-called democratic or
p.000033: undemocratic character of new private eugenics (that must however be distinguished from the gruesome
p.000033: totalitarian state activities of former times) cannot shroud the persuasiveness of the prevailing social and
p.000033: cultural standards in our modern societies. Our personal existence is not merely resolvable to our
p.000033: biological individuality and our genetic patrimony, with ultimately the resulting more or less successful
p.000033: phenotypical development. In fact we also exist outside ourselves by our mutual participation in the sign and symbol
p.000033: world of a human society. And what distinguishes human society from animal society is exactly that is based on
p.000033: language, on feeling, on cultural products and presentations and symbolic forms. Just as for the abovementioned risks
p.000033: of democratic eugenics, it somewhat bears witness to wishful
p.000033:
p.000033: 62 J.-Y. Nau. “L’éradication programmée du mongolism”, in Le Monde, 13 March 1999.
p.000033: 63 The term genetic legal adviser would in itself warrant a long digression, particularly as regards
p.000033: itsneutrality claim. According to some, the neutral genetic advisor is indeed a fiction, invented to free
p.000033: clinical genetics of a very loaded past, and to discharge the physician of pressing ethical tasks with
p.000033: respect to the couple who must ultimately take responsibility for the decision. The physician would then provide the
p.000033: couple with sterile genetic information and serve in carrying out their decision. To which he inevitably gets the
p.000033: question: “And you doctor, what would you do if you were in our situation?” That is the question that humanly
p.000033: brings an end to the inhumanity of ethical neutrality. Lexique des termes ambigus et
p.000033: controversés sur la famille, la vie et les questions éthiques. Pierre Téqui éditeur, Parijs 2005, pp.137-146.
p.000033: 64 In such a context they can barely accept that the term therapeutic abortion is simply interchangeable with the
p.000033: term voluntary pregnancy termination.
p.000033:
p.000033: Opinion no 33 of 7 November 2005 - Final version
p.000034: 34
p.000034:
p.000034: thinking to maintain that the decision about this or gene enhancement germinal gene intervention would
p.000034: exclusively be a matter for the parties involved or their family! Wishful thinking, , because
p.000034: deliberately closing the eyes to the weight of (past, current or future) conformism and socio-cultural
p.000034: pressure so some subject themselves to the prevailing models of the time, or worse, cannot withstand the
p.000034: paternalism of the design of the look of the time. Because our societies are increasingly controlled by
p.000034: the media, public opinion and social mimicry, we do not have to refer to the other imperative force, that of
p.000034: social models, which relating to modern eugenics can push forward while they all have celebrated in fashion, sport,
p.000034: dietetics or language. We may not lose sight of what powerful “pressure to conform" individuals undergo (and often
p.000034: accept). Should new “valorising” genetic standards or hypothetical care for “improvement” of the human species emerge
p.000034: tomorrow, so-called private modern eugenics 65 could also de facto assume an imperative character in the name of the
p.000034: ideology of the fortune of the day, or in the name of new public health demands.
p.000034:
p.000034: Conclusion
p.000034: The message in the standpoint of these members is particularly one of caution and solidarity.
p.000034:
p.000034: IV. 2.3. Standpoint C
p.000034:
p.000034: Without identifying with doctrinal standpoints relating to germinal gene modification, other members are
p.000034: advocates of a cautious and gradual approach that is receptive to scientific and social progress.
p.000034:
p.000034: IV. 2.3.1.
p.000034: At a scientific level they observe the growing complexity of the processes that determine the phenotype of an
p.000034: individual on the basis of his/her genotype. The “human genome project” from the nineties that was based on the
p.000034: progress of molecular genetics and the apotheosis of 20th- century genomics has also put the most important
p.000034: concept in this area up for thorough discussion: the concept of the gene that is expressed merely based on the
p.000034: DNA. In the words of F. Jacob: “In the course of time the gene has been assigned too many properties, too many
p.000034: capacities, too much power, and it appears that the role allocated to the gene must be redistributed
p.000034: between different cellular parties. The gene, and so the genome, bear witnesses to the success of reductionism.
p.000034: But seemingly time has come to reverse the trend. It is no longer possible to merely ascribe to the gene all
...
p.000035: In other words, the parent with the required phenotype will have passed on the characteristic to half the offspring.
p.000035: Child B/a will in turn pass gene B to half the offspring.
p.000035: Grandchild B/a with the required phenotype will still only represent a quarter of the offspring of the
p.000035: progenitor.
p.000035: Gene B would therefore have to be introduced 5,000 times in generation 0 in order to have 1% of the population
p.000035: possess the required phenotype after 4 generations (5,000 out of 500,000 persons); this
p.000035:
p.000035:
p.000035: would therefore take approximately 100 years, despite the selection advantage of gene B.
p.000035:
p.000035: Opinion no 33 of 7 November 2005 - Final version
p.000036: 36
p.000036:
p.000036: According to the members, the modification of germ line cells will only have an impact on society if
p.000036: applied en masse (positive state eugenics), something that is impermissible and unrealistic.
p.000036:
p.000036: Finally, as regards the relationship between genotype and phenotype, the members emphasise the specific individuality
p.000036: of the human relating to mental epigenesis, which according to them falls under bio-ethics.
p.000036:
p.000036: Exceptions aside, human individuals , in the infinite diversity of their genomes, as regards their behaviour, are
p.000036: grosso modo tributary to physical and symbolic conditioning at very high level.
p.000036:
p.000036: Mental development, an important property linked to language, graphic image-forming and virtualised
p.000036: behaviour, is based on epigenetic foundations. These are to a large extent influenced by ambient
p.000036: factors dependent on psychosomatic perception, affective field, education and culture.
p.000036:
p.000036: In the context of recent advances, the fast and somewhat limitless development of the omnipresent media
p.000036: leads to a modelling of the spirits, bodies and desires through a virtual world of images of which the
p.000036: predominance thoroughly disturbs the perspectives of therapy or improvement.
p.000036:
p.000036: This does not concern a potential “slippery slope evolution” as mentioned relating to gene therapy, but
p.000036: unreducible flows of which the consequences are baleful because they impede the critical resistance of individuals.
p.000036:
p.000036: For reasons of pragmatic effectiveness, genetic ethics must accordingly go hand in hand with epigenetic ethics imposed
p.000036: by the technical sciences of communication.
p.000036:
p.000036: The real bio-ethical debate in its current, pluralistic, multidisciplinary and multisituational complexity,
p.000036: may certainly not escape the modern epigenetic influences that subjugate the mental image world and therefore
p.000036: form a threat to the autonomy of imagination, the freedom of thought, reasoning, belief, criticism and expression.
p.000036:
...
p.000039: concrete question as to who has the right to define what “a normal person” is. Or as a consequence of
p.000039: this, how one can actually define “improvement” when talking about genetic modification.
p.000039: They ask themselves about the opportunity to steer medicine in the direction of
p.000039: enhancement/optimising practices for non-pathological disorders, and point out the possible dangers of the
p.000039: interference of certain parties in public health relating to individual genetic profiles.
p.000039: They are of the opinion that the sector of public health should once again leave the exclusive medical-scientific
p.000039: circuit, and make its entry in the political and social arena. It is indeed naive to deny the possibility of a
p.000039: compelling form of “democratic eugenics” when science forgets its ethical and social significance and the
p.000039: political hides behind scientific expertise that is becoming increasingly segmented.
p.000039: They point out the risk of disguised eugenics by putting all responsibility for ethical choices at individual level,
p.000039: either in a context of instrumentalising the new social standards, in a context of pressure due to social-cultural
p.000039: conformism, or even in name of new regulations in public health. The human community cannot be reduced to
p.000039: genetic individualism and expression of phenotype. It is also language, feeling, exchange of symbolic presentations and
p.000039: right to differ.
p.000039:
p.000039: As far as these members are concerned, a simultaneously strict, serene and evolutive, deontological and
p.000039: legal environment for the techniques of genetic modification must enable the impeding of potential derailments. As
p.000039: regards the genetic modification of humans, these members wish to send out a message of caution.
p.000039:
p.000039: Standpoint C
p.000039:
p.000039: Other members, without wishing to associate themselves with doctrinal visions in the field of germinal gene
p.000039: modification, advocate cautious and open progressiveness with respect to scientific and social progress, but do
p.000039: acknowledge the risks and advantages involved.
p.000039: They observe that scientific progress in the field of the structure and functions of biosystems reveals the
p.000039: ever-increasing complexity of the processes which connect the genotype and the phenotype.
p.000039: At present, the result is that the effects caused by genetic modification and their impact on the different phases of
p.000039: the development of the person cannot be predicted.
p.000039: These members ask themselves questions concerning the applicability of enhancement genetic modification of which the
p.000039: parameters mainly depend on hypercomplex epigenetic processes that are related to characteristics with an
p.000039: important cultural component.
p.000039: The assumptions about the controlled and responsible modification of physical, mental or behavioural
p.000039: capacities by the genetic modification of the germ cell line are, as yet, purely hypothetical.
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p.000022: “disasters” means we must take great caution if we proceed along the path of the genetic manipulation of
p.000022: people. Scientists must respect what Glover in 1984 already called the precautionary principle. One may only modify
p.000022: the genes in cases where there is little risk, and the advantages are big enough to justify the intervention.
p.000022: Supporting this precautionary principle allows to avoid positive genetic modification being
p.000022: definitively prohibited. This would indeed be both unrealistic and possibly even imprudent27“.
p.000022: In his work The Foundations of Bioethics, the American philosopher Tristram Engelhardt also suggests that the
p.000022: modification of the human genome is fully in conformity with procedural ethics based on principles of the
p.000022: right to self-determination and charity. The “progressive” story of Engelhardt reads as follows: “When we
p.000022: develop the possibility of working with genetic modification and not only the body cells but also the human germ
p.000022: cell line, we will be able to rearrange human nature according to the purposes the person has decided for him/herself.
p.000022: In the long term this can so radically change human nature that taxonomists in following generations will
p.000022: be able to consider our descendants as a new species. If there is nothing sacred in the human nature (and
p.000022: no secular argument whatsoever can convince us of the sacred character of the person), this means there is no single
p.000022: reason, providing that one proceeds very carefully, for not modifying nature. This critical analysis of our
p.000022: nature helps to better understand the observation of Protagoras: ‘The person is the measure of all things’28.”
p.000022: The question of the genetic modification of the person also forms the central theme of the book by
p.000022: philosopher and bioethicist John Harris Clones, Genes and immortality. In his work Harris asks himself which
p.000022: position should be taken regarding the possibilities that technology offers. According to him genetic modification
p.000022: of the person is inevitable29. Harris tries to anticipate the achievements of technology and science in
p.000022: the relatively near future. We now have the ability to introduce new genes in the DNA of germ cells
p.000022: or embryonic cells of the person. We will be able to repair genetic defects, and even better enhance certain
p.000022: function. The distinction between treatment and improvement — between “removing dysfunction” and “enhancing
p.000022: function” — will be crucial in biomedical sciences in the future. Harris is a bioprogressive philosopher
p.000022: and amuses himself by writing ‘genetics fiction’, as did the biologists J.B. Haldane and Herman Müller
p.000022: before the Second World War. 30. He suggests technological progress that will probably be achieved in
p.000022: the more or less near future. The introduction of new genes would, for example, according to him be
p.000022: able ensure that a recombinated individual is more resistant to infectious diseases, more intelligent or
p.000022: lives longer.
p.000022:
p.000022:
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Social / Property Ownership
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p.000003: - Mitochondrial DNA: DNA from the chromosome present in each mitochondrium of the cell.
p.000003: - Alleles: different forms of a same gene resulting in different phenotypes.
p.000003: - RNA: ribonucleic acid. Molecular chains consisting of a sugar (ribose), the nitrogen bases (adenine,
p.000003: uracil, cytosine, guanine) and phosphorus. RNA has various functions in cells (see the different kinds of RNA below).
p.000003:
p.000003: - Precursor messenger RNA (pre-mRNA): RNA that results from the transcription of a coding DNA sequence.
p.000003: - Messenger RNA (mRNA): RNA that results from the splicing of a pmRNA. mRNA is used by the ribosomes
p.000003: as translation model with the synthesis of proteins.
p.000003: - Antisense RNA: RNA of which the sequences are complementary to the messenger RNA sequences.
p.000003: - Interfering RNA: small RNA coded by the genomic DNA with a regulatory function by attaching to
p.000003: complementary mRNA (inhibiting its translation) or to DNA sequences (of which the structure and the
p.000003: possibility of transcription changes).
p.000003: - Micro RNA: small RNA coded by the genomic DNA that after various modifications attaches to
p.000003: the mRNA (inhibiting its translation) and to the genomic DNA (inhibiting transcription). Some micro RNA finds
p.000003: its origin in the introns resulting from the splicing of pmRNA to mRNA.
p.000003: - Editing: mechanism where uracil molecules in messenger RNA are introduced with the
p.000003:
p.000003: Opinion no 33 of 7 November 2005 - Final version
p.000004: 4
p.000004:
p.000004: modification of its message.
p.000004: - Enzyme: molecule with catalysing property, usually a protein or ribonucleic acid.
p.000004: - Epigenesis - Epigenetic: describes the differentiated expression of the genes under the influence of factors
p.000004: within or outside the organism.
p.000004: - Splicing: process where precursor messenger RNA is transformed to messenger RNA by cutting away certain areas.
p.000004: - Eugenics: see item II.2.
p.000004: - Gene: DNA sequence (RNA sequence with certain viruses) that carries molecular information determined
p.000004: by the nucleotide sequences. Falls under the understanding of ‘hereditary factor’. The gene functions as a
p.000004: matrix model with the synthesis of premessenger RNA.
p.000004: - Genome: complete set of genes of an organism, an individual or a species. A distinction is made between the
p.000004: nuclear genome (DNA of the nucleus or cell nucleus) and the mitochondrial genome (DNA of the mitochondria).
p.000004: - Genotype - phenotype: the genotype forms the whole of genetic characteristics of an individual ensuing from
p.000004: the composition of its DNA (RNA with some viruses). The phenotype is the whole of observable
p.000004: characteristics (anatomical, morphological, physiological and biochemical characteristics) of an individual.
p.000004: - Heteroplasmy: hybrid cytoplasm that results from the fusion of the cytoplasm of two different organisms
p.000004: - Germ line: whole of the reproductive cells of an individual that ensure the transfer of the hereditary
p.000004: properties of that individual to its offspring.
p.000004: - Locus: place on a chromosome according to a specific gene.
p.000004: - Metabolom: system of all products of biochemical reactions taking place within an organism.
...
p.000004: - Transgenesis: process of transferring the gene of an organism into the genome of another organism
p.000004: - Translation: synthesis of protein-creating amino acid polymers from an mRNA model that is used by the
p.000004: ribosomes as example.
p.000004:
p.000004:
p.000004:
p.000004: Opinion no 33 of 7 November 2005 - Final version
p.000005: 5
p.000005:
p.000005: I. 2. Gene – genotype - genetics1
p.000005: I.2.1. Traditional conceptual genetics (1865-1945)
p.000005:
p.000005: We can have this phase symbolically start with the work of Mendel (1865) on the hereditariness of
p.000005: characteristics. Weismann (1892) distinguishes the hereditary substance he calls the germ line (“germen” in
p.000005: german), and the non-hereditary substance he called soma.
p.000005: In 1901 the botanist Correns identified the germ plasma that contains all hereditary elements. Johanssen
p.000005: described the elements as genes, which all together form the genotype
p.000005: . The characteristics resulting from the expression of the genotype determine the
p.000005: phenotype.
p.000005: In 1906 Bateson announced to the scientific world that he was working on hereditariness, or
p.000005: genetics.
p.000005: The nature of hereditary entities remained unclear for a long time. Morgan, who won the Nobel Prize in 1933,
p.000005: declared that it was unimportant as to whether the gene was considered a hypothetical unit or a
p.000005: material particle. What counted for him was that a modification in a gene changes a property of the phenotype.
p.000005: Müller (1927) observed genetic modification (mutations) induced by X-rays that passed from generation to generation, of
p.000005: which the phenotypical expression depended on the mutation on the chromosomes.
p.000005: Kühn (1941) showed that a characteristic (red eye of an insect) is induced by an enzyme that catalyses a cascade of
p.000005: metabolic reactions resulting in the phenotype. That is the first step towards the concept ‘a gene - an enzyme’
p.000005: (protein).
p.000005:
p.000005: I.2.2. Molecular or genomic genetics (1944 -2000)
p.000005:
p.000005: In 1944 Avery and his colleagues observed that the transfer of DNA from a virulent bacterium to a
p.000005: non-virulent bacterium made the latter virulent. This discovery passed generally unnoticed.
p.000005: In 1953 Watson and Crick clarified the DNA structure and the mechanism of DNA replication.
p.000005: It was then shown that the information contained in the DNA was expressed through the actions of messenger-RNA
p.000005: (complement of DNA), leading to the synthesis of a protein by the placement of amino acids in the sequences in the
p.000005: order specified by the initial DNA.
p.000005: The ‘DNA -> RNA -> protein -> phenotype’ sequence was regarded as irreversible and forms the ”central dogma” of the
p.000005: molecular biology of Francis Crick.
p.000005: That ‘dogma’, actually a postulate, is a translation at molecular level of the Darwinian principle
p.000005: according to which acquired properties are not heritable. It is based on the unidirectional transmission
p.000005: of the information ‘DNA -> RNA -> protein’. Since then it has nevertheless been observed that the ‘RNA to DNA’
p.000005: transmission was achieved in some cases (retrovirus). The essence of the postulate, namely the non-transmission of the
...
p.000035: function in extremely complex and particularly plastic networks. This also concerns factors loaded with
p.000035: individual and social values, with a strong cultural component.
p.000035: Assumptions about controlling physical, spiritual or behavioural performance in humans by gene manipulation
p.000035: in the germ line are currently based on pure conjecture. There is for that matter another transgenerational aspect:
p.000035: genetic modification would be forced upon certain individuals of the offspring whose nuclear and mitochondrial
p.000035: environment and epigenetic cell environment is still unknown, and that would have unpredictable consequences on the
p.000035: resulting phenotype, without account being able to be taken of the requirements and environment with which the
p.000035: offspring will be confronted.
p.000035:
p.000035: As regards collective eugenics the benefit of enhancement genetic modification in the germ line is yet more strongly
p.000035: disputable, because the consequences of such modification being carried out on an individual scale would be diluted
p.000035: during the consecutive crossings 69.
p.000035:
p.000035: 69 If, for example, we take a random sample of the Belgian population of 500,000 inhabitants within which a couple
p.000035: has decided have a child who in the initial stage of his/her development (zygote) received a specific
p.000035: gene that is considered to develop a specific ability. All cells of the foetus, both the somatic cells and the germ
p.000035: line cells, will carry the new gene. The child will possess the required property thanks to the activity of the gene
p.000035: that has its expression in the somatic cells. But a quick calculation based on the elementary genetics
p.000035: of Mendel shows that the share of individuals with the optimised phenotype (this means with the new
p.000035: characteristic) in the offspring will reduce in time.
p.000035: Let us assume that a phenotype is determined by gene a. The non-modified persons have 2 copies of gene a in each cell:
p.000035: one of paternal origin and one of maternal origin; we can say that the persons are a/a.
p.000035: We will call the gene that determines the desired phenotype gene B. The person receiving gene B has
p.000035: therefore obtained one gene B and one gene a; we can call the person B/a. Because gene B is dominant, the person will
p.000035: possess the required phenotype.
p.000035: The average number of children per couple in Belgium amounts to 1.2.
p.000035: Let us assume that the modification results in a selection advantage and that person B/a has 2 children. Because her
p.000035: partner is not modified (and therefore is a/a), each child of that couple has 1 chance in 2 of having received gene B.
p.000035: In other words, the parent with the required phenotype will have passed on the characteristic to half the offspring.
p.000035: Child B/a will in turn pass gene B to half the offspring.
p.000035: Grandchild B/a with the required phenotype will still only represent a quarter of the offspring of the
p.000035: progenitor.
p.000035: Gene B would therefore have to be introduced 5,000 times in generation 0 in order to have 1% of the population
p.000035: possess the required phenotype after 4 generations (5,000 out of 500,000 persons); this
p.000035:
p.000035:
p.000035: would therefore take approximately 100 years, despite the selection advantage of gene B.
p.000035:
p.000035: Opinion no 33 of 7 November 2005 - Final version
p.000036: 36
p.000036:
p.000036: According to the members, the modification of germ line cells will only have an impact on society if
p.000036: applied en masse (positive state eugenics), something that is impermissible and unrealistic.
p.000036:
p.000036: Finally, as regards the relationship between genotype and phenotype, the members emphasise the specific individuality
p.000036: of the human relating to mental epigenesis, which according to them falls under bio-ethics.
p.000036:
p.000036: Exceptions aside, human individuals , in the infinite diversity of their genomes, as regards their behaviour, are
p.000036: grosso modo tributary to physical and symbolic conditioning at very high level.
p.000036:
p.000036: Mental development, an important property linked to language, graphic image-forming and virtualised
p.000036: behaviour, is based on epigenetic foundations. These are to a large extent influenced by ambient
p.000036: factors dependent on psychosomatic perception, affective field, education and culture.
p.000036:
p.000036: In the context of recent advances, the fast and somewhat limitless development of the omnipresent media
p.000036: leads to a modelling of the spirits, bodies and desires through a virtual world of images of which the
p.000036: predominance thoroughly disturbs the perspectives of therapy or improvement.
p.000036:
p.000036: This does not concern a potential “slippery slope evolution” as mentioned relating to gene therapy, but
p.000036: unreducible flows of which the consequences are baleful because they impede the critical resistance of individuals.
p.000036:
p.000036: For reasons of pragmatic effectiveness, genetic ethics must accordingly go hand in hand with epigenetic ethics imposed
p.000036: by the technical sciences of communication.
p.000036:
p.000036: The real bio-ethical debate in its current, pluralistic, multidisciplinary and multisituational complexity,
p.000036: may certainly not escape the modern epigenetic influences that subjugate the mental image world and therefore
p.000036: form a threat to the autonomy of imagination, the freedom of thought, reasoning, belief, criticism and expression.
...
Social / Racial Minority
Searching for indicator race:
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p.000008: certain species, he showed that the individuals of each generation possessing the most suitable characteristics
p.000008: adapted to the environment would reproduce better. Thanks to the coincidental introduction of new
p.000008: variations, this process causes continuous change and therefore the origin of new species.
p.000008: From the time one realised that the human species had also naturally evolved by interaction between the variability
p.000008: of genetic characteristics and the natural and social environment, the idea soon emerged that people would be able to
p.000008: control their own evolution for a better future, because artificial selection apparently worked in both animals and
p.000008: plants.
p.000008:
p.000008: We can ask ourselves how a number of well-intentioned researchers and politicians came to consider the
p.000008: eugenistic movement as a contribution to public welfare, not only from the standpoint of the individual, but
p.000008: also as a whole of measures that must be encouraged by the State. To explain their attitude we must take
p.000008: account of the fact that the understanding of Public Health at the end of the 19th century had achieved an
p.000008: incontrovertible status. Facilities arrived such as collective provisions for waste disposal and sewer water,
p.000008: a drinking water supply, the halting of epidemics by vaccination and even compelling measures such as
p.000008: quarantines. This all created a mentality positive to collective activities that suggested a better future for society
p.000008: and even for what one called “the human race”. A double distinction must be made here: firstly a distinction between
p.000008: wthat science seemed to promise and the absence of a sound basis for these ‘scientific’ conceptions, and secondly a
p.000008: distinction between the perfectly worthy ethical ambition of those who wanted to improve the destiny of future
p.000008: humanity, and
p.000008:
p.000008:
p.000008: Opinion no 33 of 7 November 2005 - Final version
p.000009: 9
p.000009:
p.000009: the inclination of others to favour certain population classes or races. The growing influence of the second term of
p.000009: that double distinction explains the tragic lapses subsequently attributed to the eugenistic movement as a whole.
p.000009:
p.000009: Although Galton was the first to develop this vision, Darwin himself was not against it. In “The Descent of Man” he
p.000009: says: “The two sexes should refrain from marriage if they are in any marked degree inferior in body or mind. But such
p.000009: hopes will never be even partially realised until the laws of inheritance are thoroughly known.”4. One may remark that
p.000009: Darwin supported individual choice and refrained from promoting actual measures as long as the scientific
p.000009: knowledge required for this was absent. Very many people thought to have been inspired by him appeared not to act with
p.000009: such caution.
p.000009:
p.000009: II.2. Definitions
p.000009: Since the origin of the concept of eugenics there has always been much confusion, and all sorts of terms have been
p.000009: thrown together, particularly as regards terminology. As a result, opinions and standpoints concerning this
p.000009: concept have been falsified. The Committee therefore proposes introducing the following distinctions.
p.000009:
p.000009: It is true that the term eugenics originally referred to a general ‘improvement’ of the human species (the human
p.000009: ‘race’) with the purpose of spreading ‘desirable’ genetic characteristics by suppressing the number of ‘undesired’
p.000009: properties of the species. Since the Second World War all measures with the purpose of the ‘improvement’ of a
p.000009: whole population or the human species have generally been put to question, or even regarded as unacceptable. On the
p.000009: other hand, developments in human genetics have given individuals and families the resources to avoid the
p.000009: birth of genetically disabled individuals, to accordingly improve individual and family welfare. To help clarify the
p.000009: discussion it seems sensible to continue using the term ‘eugenics’ subject to the introduction of appropriate
p.000009: distinctions.
p.000009:
p.000009: Individual eugenics or micro-eugenics, private eugenics and even liberal eugenics.
p.000009: This involves a selection phenomenon at an individual level. We would mention the decision of a couple
p.000009: regarding the conception, implantation or birth of a child who is a carrier of a genetic disorder that leads to a
p.000009: physical or mental disability. Another example is research (currently with few promising results) into sperm
p.000009: or embryos of “superior quality” (for example as regards IQ) or possible future attempts to create
p.000009: genetically “optimised/enhanced” embryos. One can also add to this: the example of the informing of future spouses
p.000009: about being the carrier of the same harmful, recessive gene, to allow them to avoid an offspring affected by
...
Searching for indicator racist:
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p.000011: a specific illness, and informing the parents about the possibility of prenatal diagnosis (PD) or
p.000011:
p.000011: 9 Sermon, K., Moutou, C., Harper, J. et al. (2004), “ESHRE PGD Consortium data collection IV: May -
p.000011: December 2001” in Human Reproduction 20 (1): 19-34.
p.000011: 10 For this technique: see G. Pennings, R. Schots and I. Liebaers, Ethical considerations on preimplantation genetic
p.000011: diagnosis for HLA typing to match a future child as a donor of haematopoietic stem cells to a sibling in Human
p.000011: Reproduction, Vol.17, nr. 3, 534-538, 2002.
p.000011: 11 Carol, Anne, « Histoire de l’eugénisme en France », Parijs, Seuil, 1995; Duster, T., « Retour à
p.000011: l’eugénisme », (traduit de l’anglais par Colette Estin), Paris, Kimé, 1992 ; Missa, J.-N. et Susanne, C., « De
p.000011: l’eugénisme d’Etat à l’eugénisme privé », De Boeck, 1999 ; Taguieff, P.-A., « Retour sur l’eugénisme,
p.000011: question de définition » in Esprit, n° 200, Paris, Mars-Avril 1994 ; Testart, J., « Le désir du gène », Editions
p.000011: François Bourin, 1992 ; Thomas, J.-P., « Les fondements de l’eugénisme », Presses Universitaires de France,
p.000011: Parijs, 1995.
p.000011: 12 “L’individu n’est rien, l’espèce est tout ”wrote eugenist, Nobel Prize winner and physiologist Charles
p.000011: Richet in 1922. This idea was later adopted in a racist form in the motto of the Nazis: “du bist nichts, dein Volk ist
p.000011: alles” “you are nothing, your people is everything”.
p.000011:
p.000011: Opinion no 33 of 7 November 2005 - Final version
p.000012: 12
p.000012:
p.000012: pre-implantation genetic diagnosis (PGD), and the implications of these diagnoses. If no therapeutic
p.000012: solution exists for the abnormality diagnosed during the pregnancy, and if the parents and professionals
p.000012: consider this a serious abnormality, the result will usually be voluntary pregnancy termination. Abortion
p.000012: can be applied with chromosomal aberrations (mongolism, etc.) or with serious metabolic disorders (Tay-Sachs
p.000012: Disease, etc.). The technique of prenatal diagnosis leads to the practice of negative eugenics, so one prevents
p.000012: children being born who suffer from serious abnormalities. Parallel to this the right to abortion is given legal
p.000012: support in very many countries: Great Britain (1967), United States (1973), France (1975), the Netherlands (1981),
p.000012: Belgium (1990), etc.
p.000012:
p.000012: II.3.3. Ethical considerations
p.000012:
p.000012: II.3.3.1.
p.000012: Certain groups in society are completely against any form of eugenics, collective and private.
p.000012:
p.000012: - The essential argument is based on the consideration of the embryo to be a human person from fertilisation
p.000012: (standpoint mentioned by the Committee in opinion no. 18 of 16 September 2002, chapter IV, item 4.2.1.) or that
...
Social / Religion
Searching for indicator belief:
(return to top)
p.000036: behaviour, is based on epigenetic foundations. These are to a large extent influenced by ambient
p.000036: factors dependent on psychosomatic perception, affective field, education and culture.
p.000036:
p.000036: In the context of recent advances, the fast and somewhat limitless development of the omnipresent media
p.000036: leads to a modelling of the spirits, bodies and desires through a virtual world of images of which the
p.000036: predominance thoroughly disturbs the perspectives of therapy or improvement.
p.000036:
p.000036: This does not concern a potential “slippery slope evolution” as mentioned relating to gene therapy, but
p.000036: unreducible flows of which the consequences are baleful because they impede the critical resistance of individuals.
p.000036:
p.000036: For reasons of pragmatic effectiveness, genetic ethics must accordingly go hand in hand with epigenetic ethics imposed
p.000036: by the technical sciences of communication.
p.000036:
p.000036: The real bio-ethical debate in its current, pluralistic, multidisciplinary and multisituational complexity,
p.000036: may certainly not escape the modern epigenetic influences that subjugate the mental image world and therefore
p.000036: form a threat to the autonomy of imagination, the freedom of thought, reasoning, belief, criticism and expression.
p.000036:
p.000036: Ethical reflection finds itself between a real transgenesis based on increasingly more complex developments, and a
p.000036: virtual transgenesis that gives the prospect of notional benefaction.
p.000036:
p.000036: An open, cautious and gradual approach that takes into account the interaction between thought, science and
p.000036: society, is a simultaneously rational and reasonable approach to the social debate on bio-ethical questions.
p.000036:
p.000036: Conclusion
p.000036: The members are not in principle against genetic modification in the germ line with a therapeutic
p.000036: purpose, even if they see this as unrealistic in view of the current development of knowledge. They nevertheless
p.000036: believe that this area does not call for priority in applied research, medicine or specific legislation.
p.000036: Fundamental research in this rapidly changing sector should be continued.
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036: Opinion no 33 of 7 November 2005 - Final version
p.000037: 37
p.000037:
p.000037: CHAPTER V. CONCLUSIONS AND RECOMMENDATIONS
p.000037:
p.000037: The Advisory Committee on Bioethics has expanded its considerations on the “gene therapy” concept by discussing all
p.000037: modifications of the genome, with both a curative purpose and enhancing purpose. The Committee wishes to
p.000037: hereby answer the request for opinion from the Senate in which reference is made to pathological and non-pathological
p.000037: genetic characteristics.
p.000037:
...
Searching for indicator conviction:
(return to top)
p.000013: 13
p.000013:
p.000013: II.3.3.3.
p.000013: Agreement has not, however, been reached about the ethical question of what a “severe” or “serious”
p.000013: disorder or deformity is. Professional associations involving clinical geneticists, reproductive technology and
p.000013: bio-ethical advisers have still not yet agreed about the drawing up of a list of disorders which are accepted as
p.000013: serious enough to justify a PGD or PD. There are indeed more than 5,000 monogenetic disorders, and nearly all of these
p.000013: disorders show signs of variable severity and clinical evolution (see H. Galjaard, a.c.).
p.000013:
p.000013: It appears normal that specialists hesitate in stating their personal opinion about the question of the severity or
p.000013: gene disease or abnormality. It is indeed the future parents who must bare the responsibility for the child
p.000013: disorder. The estimation of the severity of this disorder is determined by the cultural and social environment
p.000013: (the geographic factor - such as e.g. in the Third World - or financial resources), by their family history (other
p.000013: disabled children), by their religious convictions and by their conviction about what a valuable life is for themselves
p.000013: and for their unborn child.
p.000013:
p.000013: If one takes account of the fact that in very many legal systems VPT is allowed for psychosocial reasons (which are
p.000013: difficult to define), it would be somewhat paradoxical that disorders, abnormalities or malformations
p.000013: originating from the medical domain would not be accepted as a justification for VPT or PGD.
p.000013:
p.000013: Certain members of the Committee therefore believe that the decision about the justification of the use of these
p.000013: techniques in essence must first be taken by the parents concerned (or by the mother), after of course they have
p.000013: received correct and complete information beforehand about the disorder, including the consequences in the medium and
p.000013: longer term.
p.000013:
p.000013: II.3.3.4.
p.000013: But even if one accepts to follow the decision of the parents as regards actions of a negative private eugenistic
p.000013: nature with disorders or malformations that are medically acknowledged as pathology, problems still exist.
p.000013: If on the one hand some disorders occur at birth or straight afterwards, there are on the other hand also disorders
p.000013: which only develop at 40, 60 or 80 years of age. And here there are disorders that everyone sees
p.000013: as very serious (Huntington's), serious (certain forms of Alzheimer's) or more acceptable (predisposition
p.000013: to hypertension or obesity).
p.000013: As regards these disorders occurring later in life, some members of the Committee believe that the decision to apply
...
p.000024: erythropietin, growth hormones and other relevant genes. (…) Enormous pressures exist in athletics which make
p.000024: this kind of direction very likely, and inevitable”. Beyond Therapy: Biotechnology and the Pursuit of
p.000024: Happiness, The President’s Council on bioethics, Washington D.C. — Fifth Meeting, Thursday, July 11, 2002. Session 4:
p.000024: Enhancement 2: Potential for Genetic Enhancements in Sports
p.000024: — Dr Ted Friedmann.
p.000024: The words of Victor Conte - who was responsible for the pharmaceutical preparation of the American
p.000024: sprinters Tim Montgomery and Marion Jones - appear to confirm the psychological intuition of Friedman. Conte attributes
p.000024: the following words to Tim Montgomery, world record holder and Olympic champion in the 100 m: “ If I can win a golden
p.000024: medal thanks to performance-enhancing drugs it wouldn't matter if I should die of it.” (Quoted in the article by
p.000024: Pascal Giberné, Coup de grisou sur les stades, Le Monde, 6 December 2004).
p.000024: 35 See for example Bostrom, Nick, 2001: “Transhumanist Values” http://www.nickbostrom.com.
p.000024: 36 A good description of the different transhumanist ideas is found in the work of Hughes, J.,
p.000024: Citizen Cyborg. Why democratic societies must respond to the redesigned human of the future , Westview Press, Cambridge
p.000024: (Mass.), 2004.
p.000024:
p.000024: Opinion no 33 of 7 November 2005 - Final version
p.000025: 25
p.000025:
p.000025: IV.1.2. Arguments of the ‘bioconservatives’ with respect to the modification of the human genome
p.000025:
p.000025:
p.000025: Obviously not everyone agrees with the conviction of the bioprogressives. A thinker such as Hans Jonas would
p.000025: forbid the person from freely and creatively acting upon oneself - for example using transgenesis or cloning. Such a
p.000025: conviction is based on an essentialistic understanding of the person, a general anthropology that assumes the
p.000025: idea of the sacredness of inalienable human nature, that may not be changed by deliberate human intervention.
p.000025:
p.000025: But human nature is the fruit of a long evolution. What are the shared aspects of contemporary humans and the Homo
p.000025: habilis? The bioconservative movement defends the ontological or theological sacredness of the biological fact
p.000025: of contemporary humans.
p.000025: Even if he does not support the idea of the sacredness of nature, in a work titled The Future of Human Nature, the
p.000025: philosopher Habermas defends bioconservative standpoints tending towards those of Jonas. Habermas
p.000025: argues for the right to a non-genetically manipulated inheritance37. The purpose is to arrive at a clarification
p.000025: of the moral feelings created by genetic engineering. He indicates that in scientific literature expressions are used
p.000025: such as “Playing God” or “Partner in evolution”. What according to him is a matter of concern is that the separating
p.000025: line is blurred between who we are and the “organic equipment” we give ourselves. He wants to indicate how
p.000025: biotechnology blurs the normal distinction between what is made (the made, the artificial, the soulless machine) and
p.000025: what develops (the natural, the living). The disappearance of the distinction between the natural and the artificial,
p.000025: what will happen in life to the person with a changed genome before birth, can ensure that our ethical understanding
p.000025: can be changed as a member of a species. The self-awareness of the genetically programmed person can also be
...
Searching for indicator religious:
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p.000012: www.généthique.org/doss_theme/dossiers/eugénisme/eugénisme_jmlm.htm
p.000012:
p.000012: Opinion no 33 of 7 November 2005 - Final version
p.000013: 13
p.000013:
p.000013: II.3.3.3.
p.000013: Agreement has not, however, been reached about the ethical question of what a “severe” or “serious”
p.000013: disorder or deformity is. Professional associations involving clinical geneticists, reproductive technology and
p.000013: bio-ethical advisers have still not yet agreed about the drawing up of a list of disorders which are accepted as
p.000013: serious enough to justify a PGD or PD. There are indeed more than 5,000 monogenetic disorders, and nearly all of these
p.000013: disorders show signs of variable severity and clinical evolution (see H. Galjaard, a.c.).
p.000013:
p.000013: It appears normal that specialists hesitate in stating their personal opinion about the question of the severity or
p.000013: gene disease or abnormality. It is indeed the future parents who must bare the responsibility for the child
p.000013: disorder. The estimation of the severity of this disorder is determined by the cultural and social environment
p.000013: (the geographic factor - such as e.g. in the Third World - or financial resources), by their family history (other
p.000013: disabled children), by their religious convictions and by their conviction about what a valuable life is for themselves
p.000013: and for their unborn child.
p.000013:
p.000013: If one takes account of the fact that in very many legal systems VPT is allowed for psychosocial reasons (which are
p.000013: difficult to define), it would be somewhat paradoxical that disorders, abnormalities or malformations
p.000013: originating from the medical domain would not be accepted as a justification for VPT or PGD.
p.000013:
p.000013: Certain members of the Committee therefore believe that the decision about the justification of the use of these
p.000013: techniques in essence must first be taken by the parents concerned (or by the mother), after of course they have
p.000013: received correct and complete information beforehand about the disorder, including the consequences in the medium and
p.000013: longer term.
p.000013:
p.000013: II.3.3.4.
p.000013: But even if one accepts to follow the decision of the parents as regards actions of a negative private eugenistic
p.000013: nature with disorders or malformations that are medically acknowledged as pathology, problems still exist.
p.000013: If on the one hand some disorders occur at birth or straight afterwards, there are on the other hand also disorders
p.000013: which only develop at 40, 60 or 80 years of age. And here there are disorders that everyone sees
p.000013: as very serious (Huntington's), serious (certain forms of Alzheimer's) or more acceptable (predisposition
p.000013: to hypertension or obesity).
...
p.000023: is a logical consequence of progress achieved in the different sectors of the research: in vitro fertilisation, somatic
p.000023: gene therapy, the mapping of the human genome, experiments with the introduction of artificial chromosomes.
p.000023: Stock mentions a survey performed by Darryl Macer — director of the Eubios Ethics Institute in Japan — concerning the
p.000023: perception (about technology for selecting germ cells) of the general public in different countries. If one offers the
p.000023: general public the possibility of correcting genetic defects or enhancing the physical and mental capacities of their
p.000023: children, an important part of the population seems to be in favour of this: 22 % in Israel, 43 % in the United States,
p.000023: 63 % in India and 83 % in Thailand, and these figures would without doubt be even higher in Singapore, Korea or China.
p.000023: These countries have indeed invested enormously in their biotechnology. When a relatively inexpensive technology is
p.000023: made available in thousands of laboratories across the whole world, use will be made of it. Without doubt,
p.000023: the limitations and prohibitory rules originating from national authorities or international ‘biopolitical’
p.000023: organisations will not suffice in preventing the genetic modification of the person being applied. Stock
p.000023: assumes that it is preferable for these experiments to take place in all transparency at university laboratories or
p.000023: within research units of large private biotechnological companies, than in the semi-
p.000023: clandestineness of laboratories of religious sects.
p.000023: The report specified above from the President’s Council on Bioethics studies the ethical problems relating
p.000023: to enhancement medicine. Thanks to biotechnology we have access to a number of experimental techniques (that
p.000023: indeed have already been tested on animals and some of them also on people) that indicate that in the more or less near
p.000023: future, techniques will be developed that go further than ordinary therapy: selection or the genetic
p.000023: modification of embryos, the enhancement of certain cognitive capacities of children and adults (attention,
p.000023: memory), enabling athletes to perform better (mainly by activities on the genome of the muscle cells), the retarding of
p.000023: aging and the lengthening of the working life, changing of the mood. Even if the clinical application of certain
p.000023: technologies still appears uncertain or distant, the members of the American committee still believe that
p.000023: it is important to today study the potential effects of this performance-related biotechnology on medicine and
p.000023: the community33.
p.000023:
p.000023:
p.000023:
p.000023: 31 Watson, J.D., DNA, The secret of life, Knopf, New York, 2003.
p.000023: 32 Stock, Gregory, Redesigning humans, Houghton Mifflin Company, 2002. “We know that Homo sapiens is not the final
p.000023: word in primate evolution, but few have yet grasped that we are on the cusp of profound biological change, poised to
p.000023: transcend our current form and character on a journey of new imagination”. “At first glance, the very notion that we
...
p.000028: of Posthuman Dignity”, in Bioethics, June 2005, vol.19, no. 3; Allhoff, F. “ Germ-Line Genetic Enhancements and
p.000028: Rawlsian Primary Goods “, in Kennedy Institute of Ethics Journal, Vol. 15, no. 1, March 2005, p.5
p.000028:
p.000028: Opinion no 33 of 7 November 2005 - Final version
p.000029: 29
p.000029:
p.000029: illusionary and hardly relevant to some members of the committee to want to impose a universally
p.000029: conservative or technophobic morality that a priori forbids any change to the human genome. They see it as
p.000029: important to resist any form of paternalism that wants to enforce a general prohibition of recombination
p.000029: techniques which could have a positive impact on the life of people. They therefore argue for the regulated acceptance
p.000029: of genetic engineering, applied to people, regulation that opens the door to new possibilities of technological DNA
p.000029: sciences, to at the same time cause as little suffering as possible and create maximum opportunities for
p.000029: development.
p.000029: The members therefore agree with the development, in the course of evolution, of human capacity to
p.000029: technically intervene on its given biology.
p.000029:
p.000029: IV. 2.2. Standpoint B
p.000029:
p.000029: Other members of the committee do not agree with the idea that the gene pool of the human species is unchangeable;
p.000029: they consequently refute the idea that the human genome is sacrosanct. In the prohibition of any intervention
p.000029: on the genome they see the hard core of a contorted archaic reaction of a religious nature.
p.000029: It is true that the gene pool in the human species changes under the pressure of circumstances. The distinction between
p.000029: genotype (formed by what is recorded in the DNA) and phenotype 46 - the physical and health situation of a living
p.000029: being at a given time in his existence, that is the result of the interaction of the genome and external factors - is
p.000029: however useful in considering the relative importance of genes with regard to the influence of the environment.
p.000029: These members suggest a pragmatic reflection on the – at the same time healing and baleful – consequences of the fact
p.000029: that “life” due to its genotypical aspect (i.e. modification of the human genome) is today a subject of modern
p.000029: technological science.
p.000029: The members do, however, want to immediately refute the biocatastrophic visions of the risk of the prospect of the
p.000029: total changing of the gene pool of a whole population. They would simply recall that to reduce the frequency of the
p.000029: so-called poor genes from one per hundred to one per thousand, twenty-two generations would in reality have to
p.000029: be subjected to more or less imperative sterilisation measures.47 Furthermore, it is today an absolute
p.000029: fantasy to want to “improve” the human species using a selection and sterilisation policy: to impose such a policy,
p.000029: imperative measures would inevitably be required that would come up against various “obstacles” in the path
p.000029: of the principle of a democratic society. The choice of whether or not to impose such measures would therefore in
...
Social / Threat of Stigma
Searching for indicator threat:
(return to top)
p.000027: l’être humain » in J.-Y. Goffi, Regard sur les technosciences, Paris, Vrin, 2006 – sous presse.
p.000027:
p.000027: Opinion no 33 of 7 November 2005 - Final version
p.000028: 28
p.000028:
p.000028: not or poorly compensated. If on the contrary we accept that genetic intervention is not by definition
p.000028: a bad thing, the real but very difficult questions arise: those of the vigilant monitoring of eugenistic
p.000028: research and eugenistic development, and particularly that of rightful availability and fair access. It is exactly the
p.000028: political-philosophical questions that we must dare to tackle, instead of merely accepting the hypothesis that genetic
p.000028: recombination of the human being can be applied in the more or less near future. The questions of political philosophy
p.000028: are for that matter now already being widely discussed in Anglo-American literature: the genetic possibilities
p.000028: are taken seriously and the conclusions are rarely of the all-or-nothing type. On the contrary, it is attempted to
p.000028: determine balanced conditions and rules without minimising the risks, advantages and disadvantages, particularly
p.000028: based on the prevailing political philosophies (those of J. Rawls and R. Nozick)45.
p.000028:
p.000028: As regards the objection that the modification of the genome of a human being would be a threat to natural
p.000028: diversity (if you could design your children à la carte, certain beauty features and intelligence characteristics
p.000028: would be obtaining desirable natural diversity), it can be suggested that the opposite is rather the case. The
p.000028: realm of possibilities increases with DNA recombination. The diversity of tastes and cultures is large enough to
p.000028: ensure people would not all make the same choices. Furthermore, this concerns genetic modification. The weight of the
p.000028: environment and of epigenetic modification, where it is often forgotten that they are just as biological, may
p.000028: not be underestimated. The genes form the structure of the body and the brain. The environment models and changes the
p.000028: neuronal architecture. Nature and culture both have a biological base. The conceptual contrast between genetic
p.000028: conditioning and symbolic (culture-, environment- and education-related) conditioning must therefore be seen as
p.000028: a gradation difference and not as a difference in nature. Symbolic conditioning is not immaterial. It requires a
p.000028: dynamic structural change of the neuronal networks which originate due to education and interaction with the
p.000028: environment. As regards genetic conditioning, this is not necessarily irreversible. It cannot be ruled out
p.000028: that genetic engineering will be able to reverse what it has already done, or develop molecules that can allow the
p.000028: individual to choose to activate certain genes or otherwise. The genes are indeed continuously activated or deactivated
...
p.000036: grosso modo tributary to physical and symbolic conditioning at very high level.
p.000036:
p.000036: Mental development, an important property linked to language, graphic image-forming and virtualised
p.000036: behaviour, is based on epigenetic foundations. These are to a large extent influenced by ambient
p.000036: factors dependent on psychosomatic perception, affective field, education and culture.
p.000036:
p.000036: In the context of recent advances, the fast and somewhat limitless development of the omnipresent media
p.000036: leads to a modelling of the spirits, bodies and desires through a virtual world of images of which the
p.000036: predominance thoroughly disturbs the perspectives of therapy or improvement.
p.000036:
p.000036: This does not concern a potential “slippery slope evolution” as mentioned relating to gene therapy, but
p.000036: unreducible flows of which the consequences are baleful because they impede the critical resistance of individuals.
p.000036:
p.000036: For reasons of pragmatic effectiveness, genetic ethics must accordingly go hand in hand with epigenetic ethics imposed
p.000036: by the technical sciences of communication.
p.000036:
p.000036: The real bio-ethical debate in its current, pluralistic, multidisciplinary and multisituational complexity,
p.000036: may certainly not escape the modern epigenetic influences that subjugate the mental image world and therefore
p.000036: form a threat to the autonomy of imagination, the freedom of thought, reasoning, belief, criticism and expression.
p.000036:
p.000036: Ethical reflection finds itself between a real transgenesis based on increasingly more complex developments, and a
p.000036: virtual transgenesis that gives the prospect of notional benefaction.
p.000036:
p.000036: An open, cautious and gradual approach that takes into account the interaction between thought, science and
p.000036: society, is a simultaneously rational and reasonable approach to the social debate on bio-ethical questions.
p.000036:
p.000036: Conclusion
p.000036: The members are not in principle against genetic modification in the germ line with a therapeutic
p.000036: purpose, even if they see this as unrealistic in view of the current development of knowledge. They nevertheless
p.000036: believe that this area does not call for priority in applied research, medicine or specific legislation.
p.000036: Fundamental research in this rapidly changing sector should be continued.
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036: Opinion no 33 of 7 November 2005 - Final version
p.000037: 37
p.000037:
p.000037: CHAPTER V. CONCLUSIONS AND RECOMMENDATIONS
p.000037:
p.000037: The Advisory Committee on Bioethics has expanded its considerations on the “gene therapy” concept by discussing all
p.000037: modifications of the genome, with both a curative purpose and enhancing purpose. The Committee wishes to
...
Social / Women
Searching for indicator women:
(return to top)
p.000009: this type of macro-eugenics.
p.000009:
p.000009:
p.000009: 4 The Descent of Man, General Summary, Publisher The Great Books, p. 596
p.000009:
p.000009: Opinion no 33 of 7 November 2005 - Final version
p.000010: 10
p.000010:
p.000010: The example of the policy of compulsory vaccinations indicates that the introduction of imperative measures within the
p.000010: context of public health and imperative measures by the state is therefore not always regarded as unacceptable.
p.000010: However, negative state eugenics was responsible for misuse in the sterilisation and elimination of the mentally ill in
p.000010: the XX century.
p.000010:
p.000010: Each type of eugenics can have a negative form: elimination or reduction of undesired characteristics or a
p.000010: positive form: the promoting of characteristics regarded as desirable.
p.000010:
p.000010: This terminological approach entails no value judgement, but can serve as a starting point for discussions about
p.000010: scientific results and ethical and political standpoints.
p.000010:
p.000010: II.3. Negative eugenics by the selection of embryos and/or foetus
p.000010: II.3.1. Historical summary – Medical status questionis
p.000010:
p.000010: A new medical discipline has developed since the end of the 60's: clinical genetics. Its importance has
p.000010: greatly increased due to scientific progress and reinforced cooperation with gynaecology and obstetrics
p.000010: departments. Pregnant women with an increased risk of a child with a genetic illness can increasingly make use of
p.000010: choriocentesis. 5(11th week) or of an amniocentesis
p.000010: 6 (16th week). These methods can be used to examine if the unborn child is affected by one of the sought
p.000010: abnormalities. Other methods for prenatal diagnosis, including echography, ensure that one can identify
p.000010: abnormalities in a later stage of the pregnancy. Tracing an illness or deformity always confronts the future
p.000010: parents with the decision of whether or not to terminate the pregnancy (VPT, voluntary pregnancy termination).7
p.000010:
p.000010: Resorting to VPT can be avoided in a number of cases by a new form of prenatal diagnosis: pre- implantation genetic
p.000010: diagnostics (PGD). This form of diagnosis assumes the use of in-vitro fertilisation (IVF was introduced
p.000010: in 1978) because this form of identification takes place on embryos fertilised in vitro. Couples of which the
p.000010: unborn child has a major risk of being affected by a hereditary illness (mucoviscidosis, Duchenne's disease, etc.) can
p.000010: resort to PGD. While the embryo is at a development stage of just a few cells (usually 8), the physicians take one or
...
p.000012: consider this a serious abnormality, the result will usually be voluntary pregnancy termination. Abortion
p.000012: can be applied with chromosomal aberrations (mongolism, etc.) or with serious metabolic disorders (Tay-Sachs
p.000012: Disease, etc.). The technique of prenatal diagnosis leads to the practice of negative eugenics, so one prevents
p.000012: children being born who suffer from serious abnormalities. Parallel to this the right to abortion is given legal
p.000012: support in very many countries: Great Britain (1967), United States (1973), France (1975), the Netherlands (1981),
p.000012: Belgium (1990), etc.
p.000012:
p.000012: II.3.3. Ethical considerations
p.000012:
p.000012: II.3.3.1.
p.000012: Certain groups in society are completely against any form of eugenics, collective and private.
p.000012:
p.000012: - The essential argument is based on the consideration of the embryo to be a human person from fertilisation
p.000012: (standpoint mentioned by the Committee in opinion no. 18 of 16 September 2002, chapter IV, item 4.2.1.) or that
p.000012: it has sufficient personality characteristics so the termination of its further development should be completely
p.000012: forbidden. This implies that VPT is not acceptable, even in the case of illness or serious deformations.
p.000012: These people deem PGD unacceptable because this implies that selection has occurred, and that this has the
p.000012: inevitable effect of certain embryos being eliminated.
p.000012: - They also put forward the idea that the acceptance of private eugenics deviously puts pressure on women who refuse
p.000012: these techniques. This would lead to imperative collective eugenics that, due to economic or cultural pressure, would
p.000012: be similar to state eugenics.
p.000012: - Finally, they suggest that the importance attached to the avoidance of the birth of a child with an abnormality
p.000012: would have a negative influence on our attitude to disabled children already born, and the care they
p.000012: receive.13
p.000012:
p.000012: Some members have the following remarks.
p.000012: The first argument is based on an extreme standpoint about the status of the embryo and the foetus.
p.000012: The second argument refers to an unavoidable phenomenon. From the time of a value being accepted by the majority of the
p.000012: people, one perceives a tendency to follow the movement. The evaluation of this process depends on the value one
p.000012: attaches to one of the standpoints taken. For a number of years, some Dutch, strongly protestants villages did not
p.000012: accept vaccinations against poliomyelitis. After having seen the baleful consequences of their non-acceptance with
p.000012: their own eyes they moved behind the majority standpoint. It cannot be ruled out that a similar movement may form
p.000012: with respect to VPT, for example with trisomy 21. This involves an evolution in social attitudes, an
p.000012: evolution not seen as negative by everyone.
p.000012: The third argument can be rebutted by remembering the distinction between a human person (born living and viable) and
...
p.000032: implicit risk of a health approach that would assume a more or less imperative definition of pathogenic human behaviour
p.000032: is quite clear.
p.000032: 57 The question of fairer redistribution of the limited health care resources raises another question: is the public
p.000032: financing of gene therapies a real priority at present, all the more as private financing is becoming increasingly
p.000032: rare?
p.000032: 58 The politician calls upon the expert because the politician does not have the knowledge; but he
p.000032: nevertheless remains the one who decides, because he will ultimately make the choice… and must therefore
p.000032: take responsibility.
p.000032: 59 “Hygiéniquement correct”, an expression used by Pierre Ronsanvallon in analogy of “politically correct” in his
p.000032: book La Nouvelle question sociale – Repenser L’Etat-Providence, Seuil, 1995.
p.000032: 60 Two totally different situations, medical and social, behavioural and chronological and toxicological and genetic.
p.000032: 61 B. Andrieu. Médecin de son corps, PUF, Parijs, 1999.
p.000032:
p.000032: Opinion no 33 of 7 November 2005 - Final version
p.000033: 33
p.000033:
p.000033: conscience decide to end her pregnancy may obviously not be a subject for discussion. It is very fortunate that the
p.000033: woman today has the right to decide about the quality of the child to be born, and all surveys confirm
p.000033: that 90% of interviewed women would choose abortion in the case of a trisomic foetus. Here also lies the raison d'être
p.000033: for real genetic counselling 63: determining the risk that a foetus is the carrier an anomaly and informing the parents
p.000033: of this. But in this respect it is important to really allow them the freedom to make a choice in all
p.000033: conscience. Otherwise the progress of prenatal diagnosis would no longer be indisputable.
p.000033: As for “democratic eugenics” things are very different to abortion for medical reasons, because in the name of
p.000033: individual freedom the State could introduce eugenics not in that name by putting the full weight of the
p.000033: choice – and of any associated guilt – with the individual, so with the woman expecting an “abnormal” child. If
p.000033: the woman actually has legal access to the knowledge without economic discrimination because all tests and
p.000033: diagnostic and therapeutic operations have been reimbursed, she could therefore be the tool of
p.000033: “biotechnological progress”. Ideally, abortion for medical reasons has the purpose of avoiding serious disorders, and
p.000033: it is a matter discussed at individual level between the physician and patient within an ambiguous legal
p.000033: framework (could this be otherwise?). But in reality the decision is increasingly less often left to the personal
...
Social / education
Searching for indicator education:
(return to top)
p.000028: are for that matter now already being widely discussed in Anglo-American literature: the genetic possibilities
p.000028: are taken seriously and the conclusions are rarely of the all-or-nothing type. On the contrary, it is attempted to
p.000028: determine balanced conditions and rules without minimising the risks, advantages and disadvantages, particularly
p.000028: based on the prevailing political philosophies (those of J. Rawls and R. Nozick)45.
p.000028:
p.000028: As regards the objection that the modification of the genome of a human being would be a threat to natural
p.000028: diversity (if you could design your children à la carte, certain beauty features and intelligence characteristics
p.000028: would be obtaining desirable natural diversity), it can be suggested that the opposite is rather the case. The
p.000028: realm of possibilities increases with DNA recombination. The diversity of tastes and cultures is large enough to
p.000028: ensure people would not all make the same choices. Furthermore, this concerns genetic modification. The weight of the
p.000028: environment and of epigenetic modification, where it is often forgotten that they are just as biological, may
p.000028: not be underestimated. The genes form the structure of the body and the brain. The environment models and changes the
p.000028: neuronal architecture. Nature and culture both have a biological base. The conceptual contrast between genetic
p.000028: conditioning and symbolic (culture-, environment- and education-related) conditioning must therefore be seen as
p.000028: a gradation difference and not as a difference in nature. Symbolic conditioning is not immaterial. It requires a
p.000028: dynamic structural change of the neuronal networks which originate due to education and interaction with the
p.000028: environment. As regards genetic conditioning, this is not necessarily irreversible. It cannot be ruled out
p.000028: that genetic engineering will be able to reverse what it has already done, or develop molecules that can allow the
p.000028: individual to choose to activate certain genes or otherwise. The genes are indeed continuously activated or deactivated
p.000028: by information from the environment. With his/her behaviour the informed individual can work on his/her
p.000028: good and poor genetic dispositions or not.
p.000028:
p.000028: Then there is the answer to the ontotheological argument that it is sacrilegious and “morally repulsive” to meddle with
p.000028: human nature. This is an emotional argument that often hides behind language that is not logical and rational,
p.000028: such as the bizarre references in this context to “fundamental human rights”, a “right to the integrity of the
p.000028: genome”, an undefined concept of “human dignity”, that forms the ideal mask for bioconservative standpoints.
p.000028: As the American philosopher Ronald Dworkin emphasised, the power of social resistance against genetic
p.000028: engineering cannot be assessed without understanding the roots of the basic objection.
p.000028: The resistance results from a distinction between what does not depend on us (our genetic patrimony that
p.000028: God – or nature – has given us) and what does depend on us. This concerns the frontier between destiny and freedom,
p.000028: chance and choice. Thanks to or because of genetic engineering, that resulting from destiny will maybe
p.000028: become a matter in our own hands. The shifting of the limits between what does and does not depend on us creates
...
p.000035: progenitor.
p.000035: Gene B would therefore have to be introduced 5,000 times in generation 0 in order to have 1% of the population
p.000035: possess the required phenotype after 4 generations (5,000 out of 500,000 persons); this
p.000035:
p.000035:
p.000035: would therefore take approximately 100 years, despite the selection advantage of gene B.
p.000035:
p.000035: Opinion no 33 of 7 November 2005 - Final version
p.000036: 36
p.000036:
p.000036: According to the members, the modification of germ line cells will only have an impact on society if
p.000036: applied en masse (positive state eugenics), something that is impermissible and unrealistic.
p.000036:
p.000036: Finally, as regards the relationship between genotype and phenotype, the members emphasise the specific individuality
p.000036: of the human relating to mental epigenesis, which according to them falls under bio-ethics.
p.000036:
p.000036: Exceptions aside, human individuals , in the infinite diversity of their genomes, as regards their behaviour, are
p.000036: grosso modo tributary to physical and symbolic conditioning at very high level.
p.000036:
p.000036: Mental development, an important property linked to language, graphic image-forming and virtualised
p.000036: behaviour, is based on epigenetic foundations. These are to a large extent influenced by ambient
p.000036: factors dependent on psychosomatic perception, affective field, education and culture.
p.000036:
p.000036: In the context of recent advances, the fast and somewhat limitless development of the omnipresent media
p.000036: leads to a modelling of the spirits, bodies and desires through a virtual world of images of which the
p.000036: predominance thoroughly disturbs the perspectives of therapy or improvement.
p.000036:
p.000036: This does not concern a potential “slippery slope evolution” as mentioned relating to gene therapy, but
p.000036: unreducible flows of which the consequences are baleful because they impede the critical resistance of individuals.
p.000036:
p.000036: For reasons of pragmatic effectiveness, genetic ethics must accordingly go hand in hand with epigenetic ethics imposed
p.000036: by the technical sciences of communication.
p.000036:
p.000036: The real bio-ethical debate in its current, pluralistic, multidisciplinary and multisituational complexity,
p.000036: may certainly not escape the modern epigenetic influences that subjugate the mental image world and therefore
p.000036: form a threat to the autonomy of imagination, the freedom of thought, reasoning, belief, criticism and expression.
p.000036:
p.000036: Ethical reflection finds itself between a real transgenesis based on increasingly more complex developments, and a
p.000036: virtual transgenesis that gives the prospect of notional benefaction.
p.000036:
p.000036: An open, cautious and gradual approach that takes into account the interaction between thought, science and
...
Social / embryo
Searching for indicator embryo:
(return to top)
p.000002: III.1. Historical summary – Medical status questionis
p.000002: III.2. Therapeutic indications and difficulties
p.000002: III.3. Ethical discussion about somatic gene modification
p.000002: III.3.1. General considerations
p.000002: III.3.2. Specific ethical problems
p.000002:
p.000002: CHAPTER IV. GERMINAL GENE MODIFICATION
p.000002:
p.000002: IV.1. Historical summary
p.000002: IV.1.1. Arguments of ‘bioprogressives’ with respect to the modification of the human genome
p.000002: IV.1.2. Arguments of ‘bioconservatives’ with respect to the modification of the human genome
p.000002: IV.2. Ethical discussion within the Committee concerning germinal gene modification
p.000002: IV.2.1. Standpoint A
p.000002: IV.2.2. Standpoint B
p.000002: IV.2.3. Standpoint C
p.000002:
p.000002: CHAPTER V. CONCLUSIONS AND RECOMMENDATIONS
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
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p.000002:
p.000002:
p.000002:
p.000002: Opinion no 33 of 7 November 2005 - Final version
p.000002: 2
p.000002:
p.000002: Questions put to the Committee
p.000002: The Senate puts the following question.
p.000002: “[ … ] In view of various legislative proposals pending in the Senate concerning research into embryos and the
p.000002: protection of embryos in vitro;
p.000002: In view of the important social and ethical challenges for political decision making with respect to
p.000002: scientific research, the potential uses of modern biotechnology and the implications of this on the
p.000002: protection of the embryo;
p.000002: In view of article 18 of the Treaty of the Council of Europe relating to human rights and biology and medicine; [ … ]
p.000002:
p.000002: The undersigned request the Belgian Advisory Committee on Bioethics to, within the period determined in the
p.000002: aforementioned Agreement of Cooperation, present its recommendations in the light of the abovementioned
p.000002: legislative proposals concerning:
p.000002:
p.000002: - the concepts “embryo” and “pre-embryo”;
p.000002: - the concept “research” in the sense of article 18 of the aforementioned Treaty;
p.000002: - the concept of “adequate protection” of the embryo and pre-embryo;
p.000002: - the implications and risks of the uses of modern biotechnology with respect to the human embryo;
p.000002: - the implications and modalities of scientific research on the human embryo; More particularly:
p.000002: 1. the acceptability of scientific research with respect to somatic gene therapy and germinal gene
p.000002: therapy;
p.000002: 2. the distinction between corrective germinal gene therapy and enhancement germinal gene therapy;
p.000002: 3. the concept of “treatments with a eugenic nature” and “treatments with a real eugenic purpose”: the distinction
p.000002: between pathological and non-pathological genetic characteristics;
p.000002: 4. the question of the necessity and acceptability of the creation of embryos for research purposes;
p.000002: 5. the question of the necessity and acceptability of the use of embryonic stem cells with therapeutic objectives
p.000002: (therapeutic cloning) and alternatives for the use of embryonic stem cells;
p.000002: 6. the implications of Belgian legislation;
p.000002: and this in the field of biology, medicine and health care, and in particular with respect to the ethical, social and
p.000002: legal aspects, more specifically concerning the observance of human rights.”.
p.000002:
p.000002: The plenary meeting of the Committee considered the issue on 9 July 2001. This question already gave rise to report no.
p.000002: 18 of 16 September 2002 concerning research into the human embryo in vitro and report no. 24 of 13 October
p.000002: 2003 concerning human stem cells and therapeutic cloning. The current report therefore covers the still pending
p.000002: questions, namely gene therapies in the broad sense.
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
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p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002:
p.000002: Opinion no 33 of 7 November 2005 - Final version
p.000003: 3
p.000003:
p.000003: Foreword
p.000003:
p.000003: The present opinion concerns gene therapies in the broad sense of the term, being all genetic activities irrespective
p.000003: of whether they relate to the soma or the germ line, and irrespective of whether they have a therapeutic or
p.000003: optimising/enhancement purpose. In the hypotheses of activities ‘with therapeutic purpose’ the Committee will use
p.000003: both the terms ‘modification’ and ‘therapies’, but in the case of genetic activities ‘with
p.000003: optimising/enhancement purpose’, the Committee will only use the term ‘modification’.
p.000003: The Committee consequently proposes the following title:
p.000003: “Somatic and germinal line gene modification with therapeutic and/or enhancement purpose”.
p.000003:
p.000003:
p.000003: CHAPTER I. GENE THERAPIES: STATUS QUAESTIONIS
p.000003:
p.000003: Genetics is a field that is constantly evolving, so a good understanding of the concept of gene therapy requires an
p.000003: assessment of the current situation.
p.000003: The term ‘gene’ was a key term in the 20th century. Initially it was used with regard to the
...
p.000004: - Splicing: process where precursor messenger RNA is transformed to messenger RNA by cutting away certain areas.
p.000004: - Eugenics: see item II.2.
p.000004: - Gene: DNA sequence (RNA sequence with certain viruses) that carries molecular information determined
p.000004: by the nucleotide sequences. Falls under the understanding of ‘hereditary factor’. The gene functions as a
p.000004: matrix model with the synthesis of premessenger RNA.
p.000004: - Genome: complete set of genes of an organism, an individual or a species. A distinction is made between the
p.000004: nuclear genome (DNA of the nucleus or cell nucleus) and the mitochondrial genome (DNA of the mitochondria).
p.000004: - Genotype - phenotype: the genotype forms the whole of genetic characteristics of an individual ensuing from
p.000004: the composition of its DNA (RNA with some viruses). The phenotype is the whole of observable
p.000004: characteristics (anatomical, morphological, physiological and biochemical characteristics) of an individual.
p.000004: - Heteroplasmy: hybrid cytoplasm that results from the fusion of the cytoplasm of two different organisms
p.000004: - Germ line: whole of the reproductive cells of an individual that ensure the transfer of the hereditary
p.000004: properties of that individual to its offspring.
p.000004: - Locus: place on a chromosome according to a specific gene.
p.000004: - Metabolom: system of all products of biochemical reactions taking place within an organism.
p.000004: - Mitochondrion: organelle of the cytoplasm specialised in energy conversion functions and that contains a DNA
p.000004: that is a carrier of genetic information.
p.000004: - PGD: pre-implantation genetic diagnosis of an embryo at the stage when the embryo is still made up of but a few
p.000004: cells to trace a hereditary illness before inserting the embryo in utero .
p.000004: - Proteome: system of all proteins of an organism that results from the translation of messenger RNA
p.000004: and of post-translational modification
p.000004: - Regulation: process that modulates the expression of a DNA sequence as a cascade. Some of the
p.000004: sequences, the so-called coding sequences, are transcribed in pre- messenger-RNA, that after splicing become
p.000004: messenger-RNA and that play a part in the synthesis of the proteins. Other sequences are transcribed in small
p.000004: regulating RNA (interfering RNA and Micro RNA).
p.000004: - Soma: all non-germinal cells that form the tissue and organs of an individual.
p.000004: - Gene therapy: introduction into a genome with a defective gene of a normal copy of that gene to correct the
p.000004: consequences of the defect.
p.000004: - Transcription: synthesis of RNA sequences on the basis of a DNA model.
p.000004: - Transcriptom: system of all RNA molecules that result from the transcription of the DNA of an
p.000004: organism.
p.000004: - Transgen: gene of an organism that is transferred to the genome of another organism
p.000004: - Transgenesis: process of transferring the gene of an organism into the genome of another organism
p.000004: - Translation: synthesis of protein-creating amino acid polymers from an mRNA model that is used by the
p.000004: ribosomes as example.
p.000004:
p.000004:
p.000004:
p.000004: Opinion no 33 of 7 November 2005 - Final version
p.000005: 5
p.000005:
p.000005: I. 2. Gene – genotype - genetics1
p.000005: I.2.1. Traditional conceptual genetics (1865-1945)
p.000005:
p.000005: We can have this phase symbolically start with the work of Mendel (1865) on the hereditariness of
...
p.000006: non-active.
p.000006: Transgenesis can take place whereby DNA that produces antisense-RNA (anti-messenger-RNA)
p.000006:
p.000006: 2 Busciglio, J., et. al. (2002) “Altered metabolism of the amyloid beta precursor protein is associated with
p.000006: mitochondrial dysfunction in Down’s syndrome”, Neuron 33, P. 677-688.
p.000006:
p.000006: Opinion no 33 of 7 November 2005 - Final version
p.000007: 7
p.000007:
p.000007: or interfering RNA is inserted to inhibit the expression of a gene, and in so doing impede the production of its
p.000007: protein product.
p.000007: To achieve the therapeutic transgenesis a ‘normal’ gene is isolated that is connected to a vector, so a
p.000007: recombinant DNA is formed, which the whole must be correctly inserted in the host genome to produce the sought
p.000007: substance.
p.000007:
p.000007: Another form of gene therapy concerns mitochondrial DNA.
p.000007: Each mitochondrion contains a DNA molecule that contains approximately 40 genes in constant dialogue with the
p.000007: nuclear DNA. Medical observations appear to demonstrate a connection between certain neurological disorders and
p.000007: mitochondrial defects.
p.000007: One believes that the interactions between nuclear DNA and mitochondrial DNA should be analysed for the
p.000007: purposes of future therapeutic programmes.
p.000007:
p.000007: Finally, we will discuss assisted reproduction by cytoplasm transfer, even if the technique does not really
p.000007: fall under gene therapy.
p.000007: Experiments have taken place with oocyte heteroplasmy to treat the syndrome of the moderate development of the human
p.000007: embryo. The transport of cytoplasm from a normal donor egg cell to a deficient receiving egg cell led in an
p.000007: experimental series to 13 births out of 30 implanted embryos. Two of the 13 children had chromosomal defects, and
p.000007: one appeared at 18 months to have the disorder “Pervasive Development Disorder”.
p.000007: Oocyte heteroplasmy, that since 1997 has resulted in some thirty births, could therefore be suitable to
p.000007: stimulate the reproductive capacity of deficient egg cells. Children born using this technique, however, all show
p.000007: signs of mitochondrial heteroplasmy, and little is still known about the effects of this. Epigenetic
p.000007: modification could also occur.
p.000007: At present we do not yet know which the factors work positively or negatively with oocyte heteroplasmy.
p.000007: The Food and Drug Administration has prohibited the continuation of testing in this field.3
p.000007:
p.000007: I.4. Current legal framework in Belgium
p.000007: The term ‘eugenic purpose’ is mentioned in the law of 11 May 2003 concerning research into embryos in vitro. In
p.000007: article 5, 4° the law takes a clear standpoint against eugenics: “It is forbidden to carry out research or
p.000007: treatments with a eugenic purpose, this means aimed at the selection or the improvement of non-pathological genetic
p.000007: properties of the human species.”
p.000007:
p.000007: This provision must be considered in relation to article 3 of the same law in which, under the conditions which must be
p.000007: met before research into embryos may start, it must be determined that this research has a therapeutic purpose.
...
p.000010: departments. Pregnant women with an increased risk of a child with a genetic illness can increasingly make use of
p.000010: choriocentesis. 5(11th week) or of an amniocentesis
p.000010: 6 (16th week). These methods can be used to examine if the unborn child is affected by one of the sought
p.000010: abnormalities. Other methods for prenatal diagnosis, including echography, ensure that one can identify
p.000010: abnormalities in a later stage of the pregnancy. Tracing an illness or deformity always confronts the future
p.000010: parents with the decision of whether or not to terminate the pregnancy (VPT, voluntary pregnancy termination).7
p.000010:
p.000010: Resorting to VPT can be avoided in a number of cases by a new form of prenatal diagnosis: pre- implantation genetic
p.000010: diagnostics (PGD). This form of diagnosis assumes the use of in-vitro fertilisation (IVF was introduced
p.000010: in 1978) because this form of identification takes place on embryos fertilised in vitro. Couples of which the
p.000010: unborn child has a major risk of being affected by a hereditary illness (mucoviscidosis, Duchenne's disease, etc.) can
p.000010: resort to PGD. While the embryo is at a development stage of just a few cells (usually 8), the physicians take one or
p.000010: two cells and analyse the DNA or the karyotype (number and form of the chromosomes). In-vitro fertilisation leads to
p.000010: the formation of a number of embryos, and thanks to the test one can identify embryos carrying the
p.000010: abnormality. Embryos without the disorder can then again be implanted.
p.000010: This technique dates from the start of the 90's. In 1992 the team of Alan Handyside (Hammersmith
p.000010: Hospital, London) could therefore ensure the birth of a healthy child for a couple who previously had a child suffering
p.000010: from mucoviscidosis8. Without this technique the parents would have a theoretical risk of 25% of having a child with
p.000010: this disorder.
p.000010:
p.000010: Most centres proposing PGD accept the following categories of couples:
p.000010:
p.000010: - couples with a high risk of a child that would suffer from an illness or deformity of genetic origin and who have a
p.000010: sterility problem (i.e. already candidates for IVF);
p.000010: - couples with a high genetic risk who have already undergone “traditional” prenatal, diagnostic testing and who
p.000010: have already resorted a number of times to VPT after the detection of an
p.000010:
p.000010:
p.000010: 5 Chorionic villus sampling.
...
p.000011: Parijs, 1995.
p.000011: 12 “L’individu n’est rien, l’espèce est tout ”wrote eugenist, Nobel Prize winner and physiologist Charles
p.000011: Richet in 1922. This idea was later adopted in a racist form in the motto of the Nazis: “du bist nichts, dein Volk ist
p.000011: alles” “you are nothing, your people is everything”.
p.000011:
p.000011: Opinion no 33 of 7 November 2005 - Final version
p.000012: 12
p.000012:
p.000012: pre-implantation genetic diagnosis (PGD), and the implications of these diagnoses. If no therapeutic
p.000012: solution exists for the abnormality diagnosed during the pregnancy, and if the parents and professionals
p.000012: consider this a serious abnormality, the result will usually be voluntary pregnancy termination. Abortion
p.000012: can be applied with chromosomal aberrations (mongolism, etc.) or with serious metabolic disorders (Tay-Sachs
p.000012: Disease, etc.). The technique of prenatal diagnosis leads to the practice of negative eugenics, so one prevents
p.000012: children being born who suffer from serious abnormalities. Parallel to this the right to abortion is given legal
p.000012: support in very many countries: Great Britain (1967), United States (1973), France (1975), the Netherlands (1981),
p.000012: Belgium (1990), etc.
p.000012:
p.000012: II.3.3. Ethical considerations
p.000012:
p.000012: II.3.3.1.
p.000012: Certain groups in society are completely against any form of eugenics, collective and private.
p.000012:
p.000012: - The essential argument is based on the consideration of the embryo to be a human person from fertilisation
p.000012: (standpoint mentioned by the Committee in opinion no. 18 of 16 September 2002, chapter IV, item 4.2.1.) or that
p.000012: it has sufficient personality characteristics so the termination of its further development should be completely
p.000012: forbidden. This implies that VPT is not acceptable, even in the case of illness or serious deformations.
p.000012: These people deem PGD unacceptable because this implies that selection has occurred, and that this has the
p.000012: inevitable effect of certain embryos being eliminated.
p.000012: - They also put forward the idea that the acceptance of private eugenics deviously puts pressure on women who refuse
p.000012: these techniques. This would lead to imperative collective eugenics that, due to economic or cultural pressure, would
p.000012: be similar to state eugenics.
p.000012: - Finally, they suggest that the importance attached to the avoidance of the birth of a child with an abnormality
p.000012: would have a negative influence on our attitude to disabled children already born, and the care they
p.000012: receive.13
p.000012:
p.000012: Some members have the following remarks.
p.000012: The first argument is based on an extreme standpoint about the status of the embryo and the foetus.
p.000012: The second argument refers to an unavoidable phenomenon. From the time of a value being accepted by the majority of the
p.000012: people, one perceives a tendency to follow the movement. The evaluation of this process depends on the value one
p.000012: attaches to one of the standpoints taken. For a number of years, some Dutch, strongly protestants villages did not
p.000012: accept vaccinations against poliomyelitis. After having seen the baleful consequences of their non-acceptance with
p.000012: their own eyes they moved behind the majority standpoint. It cannot be ruled out that a similar movement may form
p.000012: with respect to VPT, for example with trisomy 21. This involves an evolution in social attitudes, an
p.000012: evolution not seen as negative by everyone.
p.000012: The third argument can be rebutted by remembering the distinction between a human person (born living and viable) and
p.000012: an embryo, and the imperative obligation to guarantee the welfare of all persons and more specifically the least
p.000012: privileged.
p.000012:
p.000012: II.3.3.2.
p.000012: Among the population and specialists in genetics and medically assisted reproduction, there exists a certain
p.000012: consensus about the fact that one considers PD (followed by VPT) and PGD ethically acceptable in “severe”
p.000012: or “serious” cases.
p.000012:
p.000012: Some members of the Committee indeed consider that the status of the embryo and the foetus has no part in the status of
p.000012: the person, and that embryos and foetuses only gradually obtain the qualities of a human being according to
p.000012: intra-uterine development.
p.000012: Starting from this consideration, they consider that the distinctive weight assigned on the one hand to an embryo, and
p.000012: on the other hand to the possible or probable suffering of the unborn child arriving in the world with a serious
p.000012: disability, as well as the welfare and the health of future parents, justify resorting to this action.
p.000012:
p.000012:
p.000012: 13 These attitudes are defended, for example, by the Fondation Jérôme Lejeune. See the intervention in the French
p.000012: Senate of President Jean-Marie Le Mené: ‘Y a-t-il un eugénisme “clean”?’ on the site:
p.000012: www.généthique.org/doss_theme/dossiers/eugénisme/eugénisme_jmlm.htm
p.000012:
p.000012: Opinion no 33 of 7 November 2005 - Final version
p.000013: 13
p.000013:
p.000013: II.3.3.3.
p.000013: Agreement has not, however, been reached about the ethical question of what a “severe” or “serious”
p.000013: disorder or deformity is. Professional associations involving clinical geneticists, reproductive technology and
p.000013: bio-ethical advisers have still not yet agreed about the drawing up of a list of disorders which are accepted as
p.000013: serious enough to justify a PGD or PD. There are indeed more than 5,000 monogenetic disorders, and nearly all of these
p.000013: disorders show signs of variable severity and clinical evolution (see H. Galjaard, a.c.).
p.000013:
p.000013: It appears normal that specialists hesitate in stating their personal opinion about the question of the severity or
...
p.000019: Somatic gene therapy does not differ fundamentally from other therapeutic inventions and scientific
p.000019: approaches in the medical field.
p.000019: The ethical arguments involved with research in the field of cell therapy were explained in our opinion no. 24 of 13
p.000019: October 2003 concerning research into human stem cells and therapeutic cloning.
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019: 20 Apart from Alzheimer's, many older people suffer (not all to the same extent!) from memory problems. It this a
p.000019: ‘natural’ process (aging) or a more or less pathological process? If this is a natural process, the intervention will
p.000019: have to be described as optimising (somatic gene therapy); if it is a pathological process this then concerns a
p.000019: therapeutic intervention.
p.000019:
p.000019: Opinion no 33 of 7 November 2005 - Final version
p.000020: 20
p.000020:
p.000020: CHAPTER IV. GERMINAL GENE MODIFICATION
p.000020: Germinal gene therapy concentrates on the cells of the germ line (or reproductive cells) which transfer the hereditary
p.000020: characteristics of an individual to its offspring. Germinal gene therapy consists of the correction or modification of
p.000020: a gene of the reproductive cells or of the embryo cells in the initial development stage.
p.000020:
p.000020: IV. 1. Historical summary
p.000020: Since the start of the seventies attention has been devoted to the ethical aspects of the
p.000020: biotechnological revolution that related to the genetic recombination of the human genome. This debate
p.000020: particularly raged in the United States. In Asilomar already, not all scientists gathered to discuss the
p.000020: risks of DNA recombination (particularly with respect to micro- organisms) agreed about the idea of the
p.000020: regulation of the research. During the assembly of February 1975 researchers such as Stanley Cohen (Stanford),
p.000020: Joshua Lederberg (Stanford) and James Watson (Cold Spring Harbor) set themselves against the development of Guidelines
p.000020: that could impeded research freedom. To defend their point of view, these researchers particularly put the emphasis on
p.000020: the extraordinary advantages one could expect for public health. Other scientists such as Robert Sinsheimer (Caltech),
p.000020: Erwin Chargaff and George Wald did, however, argue for shopping research into recombinant DNA. They did this not only
p.000020: because of the risk of the spreading of pathogens, but particularly because of the fear that one would not be able to
p.000020: control the techniques with which people could change their own nature: “Can we really forecast the
p.000020: consequence for mankind, for human society, of any major change in the human gene pool? The more I have reflected on
p.000020: this the more I have come to doubt it. I do not refer here to the alleviation of individual genetic defects but more
p.000020: broadly to the genetic redefinition of man 21 “.
...
p.000030: with civil nuclear energy in the fifties). Only in 1955, at the Geneva conference on nuclear energy, did
p.000030: physicians and biologists really make a start on research into the consequences of radiation on the living world
p.000030: and in particular on gene mutations. At the conference it was also – finally – proposed to exactly determine to which
p.000030: level of radiation a person may be exposed without the integrity of the human species being affected. (see. J. Gallini.
p.000030: Cri d’alarme des généticiens. Le Monde, 17 August 1955).
p.000030: 52 If this style of argumentation had been applied to organ transplants, the development of this therapy would have
p.000030: been impeded in the sixties.
p.000030: 53 We will add a sentence by Paul Valéry here: “Just as Progress was idolised, the cursing of progress was idolised;
p.000030: that resulted in two commonplaces.”
p.000030:
p.000030: Opinion no 33 of 7 November 2005 - Final version
p.000031: 31
p.000031:
p.000031: the two questions. The members do not see this as a false debate, but propose concisely looking at
p.000031: what happens in reality, and what the pertinent basic questions are as possible assistance in making
p.000031: well-considered decisions as regards genetic changes in the germ line that demonstrate respect for the whole
p.000031: population.
p.000031: Formerly the “old” eugenics concentrated on stimulating the birth of the strongest at the expense of the
p.000031: weakest. Now things clearly go a step further, thanks to the possibilities that technical genetic science offers to
p.000031: avoid the implantation of an embryo that is regarded as defective or as a carrier of a chromosomal
p.000031: abnormality. But the ability to create new genes and consequently new biological functions takes us yet another step
p.000031: further, that can lead to the modification of the nature of the human species.
p.000031: A simple question then arises: To actually improve the human species?
p.000031: This is an awesome question, that should be preceded by other questions that according to some are
p.000031: relevant, according to others are iconoclastic, and according to yet others archaic: Where is the limit between
p.000031: what is pathological and what is normal? What is so-called human normality? Is it wise to contemplate a norm for the
p.000031: human species? Who can assume the right to define the norm? Converting the myth of the zero-defect baby with all the
p.000031: required properties into reality, is that really progress?
p.000031: Nevertheless, another more political question arises that automatically results from the last questions and
p.000031: from the answers that may or may not be given. What is the place of the disabled person in our society and how we can
p.000031: speak of enhancement genetic changes in the germ line without – even subconsciously – detracting from the dignity of
p.000031: disabled persons (and the people in their environment), in other words those who often suffer more due to the way in
p.000031: which they are looked down on by society than their actual disability? The question refers us to either
...
p.000031: And because the concept of public health has evolved, we would remind that the public health approach has in principle
p.000031: two objectives: firstly to make the medical care market more efficient and therefore rationalise its operation,
p.000031: and secondly de facto reduce the risk that an illness occurs and therefore anticipate pathological
p.000031: phenomenon. The – medical and financial – risk and the knowledge of that risk are therefore central to the public
p.000031: health approach, and require epidemiological research and public action to reduce that risk.
p.000031: There are therefore three reasons to transfer the public health approach from the exclusive
p.000031: medical-scientific arena to the political arena.
p.000031: Firstly the health approach aims at social change: a return to normal by the elimination of a situation considered
p.000031: undesirable (the illness) thanks to a change in the pathogenic human
p.000031:
p.000031:
p.000031: 54 We must however add that PGD de facto reduces the need for the application of therapeutic germinal gene therapy.
p.000031: 55 What is the legal framework for PGD and prenatal screening? PGD enables the avoidance of the birth of a child with
p.000031: a genetic abnormality detected in the embryo in vitro by not implanting an embryo that is the carrier of the
p.000031: identified anomaly, and therefore prevents an abortion. The legitimacy of this practice results a
p.000031: contrario – as necessary – from article 5 of the law of 11 May 2003, that only allows the
p.000031: implantation of people with embryos on which research is conducted provided that that research brings a benefit to the
p.000031: embryo itself.
p.000031: But the law only concerns embryos in vitro and not embryos in utero. If a genetic illness is detected,
p.000031: prenatal screening enables abortion (voluntary pregnancy termination) to take place when “it is
p.000031: established that the child to be born will be suffering from an extremely serious illness that is recognised as
p.000031: incurable at the time of the diagnosis” (art. 2,4° of the law of 3 April 1990 concerning pregnancy
p.000031: termination).
p.000031:
p.000031: Opinion no 33 of 7 November 2005 - Final version
p.000032: 32
p.000032:
p.000032: behaviour.56
p.000032: Secondly the public health approach entails the anticipation of the prevention of an illness where the
p.000032: illness must be defined as a public health problem of which the causes are scientifically and/or
p.000032: technically established. This is, however, with the understanding that the conscience of scientists or technical
p.000032: experts is not equal to the public conscience. At this stage we would like to remind of the terrible responsibility of
p.000032: experts in predictive medicine with its constantly more numerous genetic tests. Prediction is indeed a good
p.000032: aspect if it serves as prevention, but it is dangerous if there is an obligation to release the prediction
p.000032: outside the private domain to map the “biological destiny” of a person to be potentially insured.
...
Social / gender
Searching for indicator gender:
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p.000007: The Food and Drug Administration has prohibited the continuation of testing in this field.3
p.000007:
p.000007: I.4. Current legal framework in Belgium
p.000007: The term ‘eugenic purpose’ is mentioned in the law of 11 May 2003 concerning research into embryos in vitro. In
p.000007: article 5, 4° the law takes a clear standpoint against eugenics: “It is forbidden to carry out research or
p.000007: treatments with a eugenic purpose, this means aimed at the selection or the improvement of non-pathological genetic
p.000007: properties of the human species.”
p.000007:
p.000007: This provision must be considered in relation to article 3 of the same law in which, under the conditions which must be
p.000007: met before research into embryos may start, it must be determined that this research has a therapeutic purpose.
p.000007:
p.000007: From the preparatory activities (statements from the legislative proposal concerning research into embryos in vitro,
p.000007: submitted by Messrs Monfils and Mahoux - Doc. Senate 2000-2001-2- 695) it appeared clear that as regards
p.000007: intervention with the human genome the legislator wanted to make a distinction between germ track therapy
p.000007: aimed at improving the human species (and that must be prohibited) and therapeutic germ track therapy aimed at
p.000007: combating a number of diseases such as chorea of Huntington, mucoviscidosis, haemophilia and various
p.000007: neurodegenerative illnesses.
p.000007:
p.000007: In that same perspective article 5, 5° of the abovementioned law does not allow research or treatments to
p.000007: be carried out for sex selection, with the exception of selection to prevent gender-bound diseases.
p.000007:
p.000007: Article 13 of the Convention of the Council of Europe on human rights and Biomedicine forbids
p.000007:
p.000007: 3 E. Scott Stills, Takumi Takeuchi, Michaels Tucker, Gianpero D Palermo, “Genetic and epigenetic
p.000007: modifications associated with human ooplasm donation and mitochondrial heteroplasmy considerations for interpreting
p.000007: studies of heritability and reproductive outcome” in Medical Hypotheses (2004), 62,612- 617, Elsevier; Rachel Levy,
p.000007: Kay Elder and Yves Ménézo, “Cytoplamic transfer in oocytes: biochemical aspects” in Human Reproduction
p.000007: Update (2004), 10, 241-250; Susan M. Haves, Carmen Spazienza and Keith E. Latham, “Ooplamic donation in
p.000007: humans. The potential for epigenic modifications. Debate” in Human Reproduction (2002), 17, 850-852; Brenner CA,
p.000007: Barritt JA, Willadsen S and Cohen J, “Mitochondrial DNA Heteroplasmy after human ooplasmic transplantation” in Fertilil
p.000007: Steril.(2000), 74, 573-578.
p.000007:
p.000007: Opinion no 33 of 7 November 2005 - Final version
p.000008: 8
p.000008:
p.000008: any research relating to germinal gene therapy. The Belgian legislator, on the other hand, has left open the
p.000008: possibility that germinal gene therapy techniques that work on a line of gametes of a living being can conquer diseases
p.000008: for the being itself and for its offspring.
p.000008: This accordingly concerns a therapeutic purpose in the sense of article 3.
p.000008:
p.000008: To avoid any lapses the law provides for a procedure with a deontological framework (requirement of
p.000008: positive opinion (without possibility of appeal from the local ethical committee of the hospital where the research
...
p.000010: Hospital, London) could therefore ensure the birth of a healthy child for a couple who previously had a child suffering
p.000010: from mucoviscidosis8. Without this technique the parents would have a theoretical risk of 25% of having a child with
p.000010: this disorder.
p.000010:
p.000010: Most centres proposing PGD accept the following categories of couples:
p.000010:
p.000010: - couples with a high risk of a child that would suffer from an illness or deformity of genetic origin and who have a
p.000010: sterility problem (i.e. already candidates for IVF);
p.000010: - couples with a high genetic risk who have already undergone “traditional” prenatal, diagnostic testing and who
p.000010: have already resorted a number of times to VPT after the detection of an
p.000010:
p.000010:
p.000010: 5 Chorionic villus sampling.
p.000010: 6 Taking of amniotic fluid (fluid from around the fœtus).
p.000010: 7 For this and other information we refer we to: Hans Galjaard, Rapport du CIB sur le diagnostic génétique
p.000010: pré-implantatoire et les interventions sur la lignée germinale, Comité International de Bioéthique de
p.000010: L’Unesco (CIB), Actes, November 2002.
p.000010: 8 In 1989 the first PGD by Handyside was already involved with gender-bound diseases; it was from a
p.000010: technical perspective easier than molecular diagnosis; see: Handyside AH, Kontogianni EH, Hardy K, Winston
p.000010: RM, « Pregnancies from biopsied human preimplantation embryos sexed by Y-specific DNA amplification »,
p.000010: Nature, 1990 Apr 19;344(6268):768-70; Handyside AH, Pattinson JK, Penketh RJ, Delhanty JD, Winston RM, Tuddenham
p.000010: EG, « Biopsy of human preimplantation embryos and sexing by DNA amplification », Lancet, 1989 Feb
p.000010: 18;1(8634):347-9. Handyside, A.H. et al., Birth of a normal girl after in vitro fertilization and preimplantation
p.000010: diagnostic testing for cystic fibrosis, The New England Journal of Medicine, 1992, 327, p.905-909.
p.000010:
p.000010: Opinion no 33 of 7 November 2005 - Final version
p.000011: 11
p.000011:
p.000011: affected foetus;
p.000011: - couples with a risk of a child affected by a genetic illness or deformity and who are against VPT.
p.000011:
p.000011: At international level PGD is increasingly applied for the screening of aneuploidy and for sex selection for
p.000011: non-medical reasons9.
p.000011:
p.000011: A recent extension of PGD indications is HLA blastomer profiling, a process wrongly labelled “designer baby” by the
p.000011: media10.
p.000011:
p.000011: Preimplantation diagnosis including the variant HLA blastomer profiling raises ethical questions for which opinion will
p.000011: have to be drawn up.
p.000011:
p.000011: II.3.2. Private negative eugenics: current situation
p.000011:
...
Social / parents
Searching for indicator parent:
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p.000005: genes) that match signal sequences not translated into proteins.
p.000005: At a very early stage some authors saw that the genetic program interacted with its products. Only these
p.000005: products can interpret the programme, and the organism ultimately manages the working of the structural genes
p.000005: by activating or inhibiting the regulatory genes.
p.000005: Numerous interaction systems between genotype and phenotype have come to light.
p.000005: Today a protein product is no longer considered as the pure collinear reflection of the DNA sequences. The same DNA
p.000005: sequence can generate diverse messenger-RNA that induce various proteins with different phenotypical
p.000005: characteristics. This is because the messenger- RNA and the proteins of which messenger-RNA induces the
p.000005: synthesis undergo different modification (RNA-splicing, RNA-editing, methylation, glycosylation, etc).
p.000005: Sequences of separate messenger-RNA can join to cause the form a given protein. Interaction takes place at different
p.000005: levels:
p.000005:
p.000005:
p.000005: 1 Stanford Encyclopedia of Philosophy (2004)
p.000005:
p.000005: Opinion no 33 of 7 November 2005 - Final version
p.000006: 6
p.000006:
p.000006: - gene products which mutually interact;
p.000006: - nuclear genes that interact with mitochondrial genes (hence the divergence of the expression of
p.000006: the precursor gene of the protein amyloid that deposits in the brain with the Alzheimer illness, depending on the
p.000006: information contained in the mitochondrial genome)2 ;
p.000006: - the question of from which parent a gene comes can have an effect.
p.000006:
p.000006: A decisive role in that respect is played by regulating factors, consisting of RNA, proteins or molecules with a low
p.000006: molecular weight (which work as cofactors or inhibitors).
p.000006:
p.000006: 1.2.3. Post-genomic genetics (2000 - …)
p.000006:
p.000006: Paradoxically enough the decoding of the human genome (2001) has reinforced a paradigm change in the field of genetics.
p.000006: Except in a few cases in which the gene has an omnipotent effect, the relationship between genes and phenotypes follows
p.000006: a complicated determinism.
p.000006:
p.000006: The phenotype is regarded as tributary to the genome, the transcriptome, the proteome, the metabolom and ambient
p.000006: factors.
p.000006: Over a period of 50 years molecular genetics, that started from the reductionist dogma ‘DNA -> RNA ->
p.000006: protein -> phenotype’, has made clear that hereditariness and reproduction cannot be reduced to static
p.000006: genetics, but are evolutionary development processes. Genomics has taken a flexible and dynamic form, with a
p.000006: considerable capacity for molecular and structural evolution. Final integration takes place at the expense of the
p.000006: “reformatting” of the information in all steps that lead to the achievement of the phenotype.
p.000006:
p.000006: In the case of genetic modification induced by experiments using transgenesis (the case with gene
p.000006: therapy) current information shows that phenotypes resulting from the expression of a new gene or from
p.000006: the inactivation of an existing gene are unpredictable. This concerns the uncertainties about the
p.000006: molecular vectors, about the integration/inhibition mechanism and about the disturbances induced
...
p.000035: gene that is considered to develop a specific ability. All cells of the foetus, both the somatic cells and the germ
p.000035: line cells, will carry the new gene. The child will possess the required property thanks to the activity of the gene
p.000035: that has its expression in the somatic cells. But a quick calculation based on the elementary genetics
p.000035: of Mendel shows that the share of individuals with the optimised phenotype (this means with the new
p.000035: characteristic) in the offspring will reduce in time.
p.000035: Let us assume that a phenotype is determined by gene a. The non-modified persons have 2 copies of gene a in each cell:
p.000035: one of paternal origin and one of maternal origin; we can say that the persons are a/a.
p.000035: We will call the gene that determines the desired phenotype gene B. The person receiving gene B has
p.000035: therefore obtained one gene B and one gene a; we can call the person B/a. Because gene B is dominant, the person will
p.000035: possess the required phenotype.
p.000035: The average number of children per couple in Belgium amounts to 1.2.
p.000035: Let us assume that the modification results in a selection advantage and that person B/a has 2 children. Because her
p.000035: partner is not modified (and therefore is a/a), each child of that couple has 1 chance in 2 of having received gene B.
p.000035: In other words, the parent with the required phenotype will have passed on the characteristic to half the offspring.
p.000035: Child B/a will in turn pass gene B to half the offspring.
p.000035: Grandchild B/a with the required phenotype will still only represent a quarter of the offspring of the
p.000035: progenitor.
p.000035: Gene B would therefore have to be introduced 5,000 times in generation 0 in order to have 1% of the population
p.000035: possess the required phenotype after 4 generations (5,000 out of 500,000 persons); this
p.000035:
p.000035:
p.000035: would therefore take approximately 100 years, despite the selection advantage of gene B.
p.000035:
p.000035: Opinion no 33 of 7 November 2005 - Final version
p.000036: 36
p.000036:
p.000036: According to the members, the modification of germ line cells will only have an impact on society if
p.000036: applied en masse (positive state eugenics), something that is impermissible and unrealistic.
p.000036:
p.000036: Finally, as regards the relationship between genotype and phenotype, the members emphasise the specific individuality
p.000036: of the human relating to mental epigenesis, which according to them falls under bio-ethics.
p.000036:
p.000036: Exceptions aside, human individuals , in the infinite diversity of their genomes, as regards their behaviour, are
p.000036: grosso modo tributary to physical and symbolic conditioning at very high level.
p.000036:
p.000036: Mental development, an important property linked to language, graphic image-forming and virtualised
...
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p.000010: positive form: the promoting of characteristics regarded as desirable.
p.000010:
p.000010: This terminological approach entails no value judgement, but can serve as a starting point for discussions about
p.000010: scientific results and ethical and political standpoints.
p.000010:
p.000010: II.3. Negative eugenics by the selection of embryos and/or foetus
p.000010: II.3.1. Historical summary – Medical status questionis
p.000010:
p.000010: A new medical discipline has developed since the end of the 60's: clinical genetics. Its importance has
p.000010: greatly increased due to scientific progress and reinforced cooperation with gynaecology and obstetrics
p.000010: departments. Pregnant women with an increased risk of a child with a genetic illness can increasingly make use of
p.000010: choriocentesis. 5(11th week) or of an amniocentesis
p.000010: 6 (16th week). These methods can be used to examine if the unborn child is affected by one of the sought
p.000010: abnormalities. Other methods for prenatal diagnosis, including echography, ensure that one can identify
p.000010: abnormalities in a later stage of the pregnancy. Tracing an illness or deformity always confronts the future
p.000010: parents with the decision of whether or not to terminate the pregnancy (VPT, voluntary pregnancy termination).7
p.000010:
p.000010: Resorting to VPT can be avoided in a number of cases by a new form of prenatal diagnosis: pre- implantation genetic
p.000010: diagnostics (PGD). This form of diagnosis assumes the use of in-vitro fertilisation (IVF was introduced
p.000010: in 1978) because this form of identification takes place on embryos fertilised in vitro. Couples of which the
p.000010: unborn child has a major risk of being affected by a hereditary illness (mucoviscidosis, Duchenne's disease, etc.) can
p.000010: resort to PGD. While the embryo is at a development stage of just a few cells (usually 8), the physicians take one or
p.000010: two cells and analyse the DNA or the karyotype (number and form of the chromosomes). In-vitro fertilisation leads to
p.000010: the formation of a number of embryos, and thanks to the test one can identify embryos carrying the
p.000010: abnormality. Embryos without the disorder can then again be implanted.
p.000010: This technique dates from the start of the 90's. In 1992 the team of Alan Handyside (Hammersmith
p.000010: Hospital, London) could therefore ensure the birth of a healthy child for a couple who previously had a child suffering
p.000010: from mucoviscidosis8. Without this technique the parents would have a theoretical risk of 25% of having a child with
p.000010: this disorder.
p.000010:
p.000010: Most centres proposing PGD accept the following categories of couples:
p.000010:
p.000010: - couples with a high risk of a child that would suffer from an illness or deformity of genetic origin and who have a
p.000010: sterility problem (i.e. already candidates for IVF);
p.000010: - couples with a high genetic risk who have already undergone “traditional” prenatal, diagnostic testing and who
p.000010: have already resorted a number of times to VPT after the detection of an
p.000010:
p.000010:
p.000010: 5 Chorionic villus sampling.
p.000010: 6 Taking of amniotic fluid (fluid from around the fœtus).
p.000010: 7 For this and other information we refer we to: Hans Galjaard, Rapport du CIB sur le diagnostic génétique
p.000010: pré-implantatoire et les interventions sur la lignée germinale, Comité International de Bioéthique de
p.000010: L’Unesco (CIB), Actes, November 2002.
p.000010: 8 In 1989 the first PGD by Handyside was already involved with gender-bound diseases; it was from a
p.000010: technical perspective easier than molecular diagnosis; see: Handyside AH, Kontogianni EH, Hardy K, Winston
p.000010: RM, « Pregnancies from biopsied human preimplantation embryos sexed by Y-specific DNA amplification »,
p.000010: Nature, 1990 Apr 19;344(6268):768-70; Handyside AH, Pattinson JK, Penketh RJ, Delhanty JD, Winston RM, Tuddenham
...
p.000011: have to be drawn up.
p.000011:
p.000011: II.3.2. Private negative eugenics: current situation
p.000011:
p.000011: Private eugenics is a form of eugenics connected to the use of prenatal identification techniques and
p.000011: pre-implantation diagnosis. As a result, one can avoid couples having children carrying a hereditary illness or
p.000011: disability11.
p.000011:
p.000011: Current biological and medical events (medically assisted reproduction, prenatal and pre- implantation
p.000011: diagnostics, genetic treatment attempts, programme for the mapping of and sequence-determining of the human
p.000011: genome) again brought the question of eugenics to the foreground. The idea of “eugenics” itself is again raising
p.000011: concern among some.
p.000011:
p.000011: But eugenics related to progress achieved in genetics and in new techniques of medically assisted
p.000011: reproduction is not of the same nature as state eugenics as developed in pre-war Germany and in the United
p.000011: States, and that is still currently being applied in China. We may therefore not use the same terminology for
p.000011: practices with such a totally different context and purposes. State eugenics has the purpose of enforcing “the
p.000011: enhancement of the human species”.12, and that is not the case with private eugenics. Because of the emotional
p.000011: charge of the term “eugenics”, some think that one can better not use this terminology in a situation that concerns
p.000011: the freedom and autonomy of the parents. Other people believe that instead of avoiding the term
p.000011: eugenics, one must rather draw attention to the fundamental distinction between “state eugenics” and its
p.000011: derivatives on the one hand, and on the other hand contemporary techniques for diagnosis and medically
p.000011: assisted reproduction, that one can callprivate eugenics. These are indeed terms concerning radically different
p.000011: circumstances and purposes
p.000011:
p.000011: Today biotechnology is developing in the context of respect for the autonomy of the individual. The techniques used in
p.000011: negative eugenics do not change the human species. They are simply the orientation of the future of a number of
p.000011: individuals. “New eugenics” is related to technical scientific advances in genetics and medically assisted
p.000011: reproduction. It respects the individual, the free choice of the parents who by resorting to these techniques want
p.000011: children and wish to keep the risk of disabilities with the birth as minimal as possible. Genetic
p.000011: counselling – preferably before the pregnancy - consists of determining the risk of having a child with
p.000011: a specific illness, and informing the parents about the possibility of prenatal diagnosis (PD) or
p.000011:
p.000011: 9 Sermon, K., Moutou, C., Harper, J. et al. (2004), “ESHRE PGD Consortium data collection IV: May -
p.000011: December 2001” in Human Reproduction 20 (1): 19-34.
p.000011: 10 For this technique: see G. Pennings, R. Schots and I. Liebaers, Ethical considerations on preimplantation genetic
p.000011: diagnosis for HLA typing to match a future child as a donor of haematopoietic stem cells to a sibling in Human
p.000011: Reproduction, Vol.17, nr. 3, 534-538, 2002.
p.000011: 11 Carol, Anne, « Histoire de l’eugénisme en France », Parijs, Seuil, 1995; Duster, T., « Retour à
p.000011: l’eugénisme », (traduit de l’anglais par Colette Estin), Paris, Kimé, 1992 ; Missa, J.-N. et Susanne, C., « De
p.000011: l’eugénisme d’Etat à l’eugénisme privé », De Boeck, 1999 ; Taguieff, P.-A., « Retour sur l’eugénisme,
p.000011: question de définition » in Esprit, n° 200, Paris, Mars-Avril 1994 ; Testart, J., « Le désir du gène », Editions
p.000011: François Bourin, 1992 ; Thomas, J.-P., « Les fondements de l’eugénisme », Presses Universitaires de France,
p.000011: Parijs, 1995.
p.000011: 12 “L’individu n’est rien, l’espèce est tout ”wrote eugenist, Nobel Prize winner and physiologist Charles
p.000011: Richet in 1922. This idea was later adopted in a racist form in the motto of the Nazis: “du bist nichts, dein Volk ist
p.000011: alles” “you are nothing, your people is everything”.
p.000011:
p.000011: Opinion no 33 of 7 November 2005 - Final version
p.000012: 12
p.000012:
p.000012: pre-implantation genetic diagnosis (PGD), and the implications of these diagnoses. If no therapeutic
p.000012: solution exists for the abnormality diagnosed during the pregnancy, and if the parents and professionals
p.000012: consider this a serious abnormality, the result will usually be voluntary pregnancy termination. Abortion
p.000012: can be applied with chromosomal aberrations (mongolism, etc.) or with serious metabolic disorders (Tay-Sachs
p.000012: Disease, etc.). The technique of prenatal diagnosis leads to the practice of negative eugenics, so one prevents
p.000012: children being born who suffer from serious abnormalities. Parallel to this the right to abortion is given legal
p.000012: support in very many countries: Great Britain (1967), United States (1973), France (1975), the Netherlands (1981),
p.000012: Belgium (1990), etc.
p.000012:
p.000012: II.3.3. Ethical considerations
p.000012:
p.000012: II.3.3.1.
p.000012: Certain groups in society are completely against any form of eugenics, collective and private.
p.000012:
p.000012: - The essential argument is based on the consideration of the embryo to be a human person from fertilisation
p.000012: (standpoint mentioned by the Committee in opinion no. 18 of 16 September 2002, chapter IV, item 4.2.1.) or that
p.000012: it has sufficient personality characteristics so the termination of its further development should be completely
p.000012: forbidden. This implies that VPT is not acceptable, even in the case of illness or serious deformations.
p.000012: These people deem PGD unacceptable because this implies that selection has occurred, and that this has the
p.000012: inevitable effect of certain embryos being eliminated.
...
p.000012: evolution not seen as negative by everyone.
p.000012: The third argument can be rebutted by remembering the distinction between a human person (born living and viable) and
p.000012: an embryo, and the imperative obligation to guarantee the welfare of all persons and more specifically the least
p.000012: privileged.
p.000012:
p.000012: II.3.3.2.
p.000012: Among the population and specialists in genetics and medically assisted reproduction, there exists a certain
p.000012: consensus about the fact that one considers PD (followed by VPT) and PGD ethically acceptable in “severe”
p.000012: or “serious” cases.
p.000012:
p.000012: Some members of the Committee indeed consider that the status of the embryo and the foetus has no part in the status of
p.000012: the person, and that embryos and foetuses only gradually obtain the qualities of a human being according to
p.000012: intra-uterine development.
p.000012: Starting from this consideration, they consider that the distinctive weight assigned on the one hand to an embryo, and
p.000012: on the other hand to the possible or probable suffering of the unborn child arriving in the world with a serious
p.000012: disability, as well as the welfare and the health of future parents, justify resorting to this action.
p.000012:
p.000012:
p.000012: 13 These attitudes are defended, for example, by the Fondation Jérôme Lejeune. See the intervention in the French
p.000012: Senate of President Jean-Marie Le Mené: ‘Y a-t-il un eugénisme “clean”?’ on the site:
p.000012: www.généthique.org/doss_theme/dossiers/eugénisme/eugénisme_jmlm.htm
p.000012:
p.000012: Opinion no 33 of 7 November 2005 - Final version
p.000013: 13
p.000013:
p.000013: II.3.3.3.
p.000013: Agreement has not, however, been reached about the ethical question of what a “severe” or “serious”
p.000013: disorder or deformity is. Professional associations involving clinical geneticists, reproductive technology and
p.000013: bio-ethical advisers have still not yet agreed about the drawing up of a list of disorders which are accepted as
p.000013: serious enough to justify a PGD or PD. There are indeed more than 5,000 monogenetic disorders, and nearly all of these
p.000013: disorders show signs of variable severity and clinical evolution (see H. Galjaard, a.c.).
p.000013:
p.000013: It appears normal that specialists hesitate in stating their personal opinion about the question of the severity or
p.000013: gene disease or abnormality. It is indeed the future parents who must bare the responsibility for the child
p.000013: disorder. The estimation of the severity of this disorder is determined by the cultural and social environment
p.000013: (the geographic factor - such as e.g. in the Third World - or financial resources), by their family history (other
p.000013: disabled children), by their religious convictions and by their conviction about what a valuable life is for themselves
p.000013: and for their unborn child.
p.000013:
p.000013: If one takes account of the fact that in very many legal systems VPT is allowed for psychosocial reasons (which are
p.000013: difficult to define), it would be somewhat paradoxical that disorders, abnormalities or malformations
p.000013: originating from the medical domain would not be accepted as a justification for VPT or PGD.
p.000013:
p.000013: Certain members of the Committee therefore believe that the decision about the justification of the use of these
p.000013: techniques in essence must first be taken by the parents concerned (or by the mother), after of course they have
p.000013: received correct and complete information beforehand about the disorder, including the consequences in the medium and
p.000013: longer term.
p.000013:
p.000013: II.3.3.4.
p.000013: But even if one accepts to follow the decision of the parents as regards actions of a negative private eugenistic
p.000013: nature with disorders or malformations that are medically acknowledged as pathology, problems still exist.
p.000013: If on the one hand some disorders occur at birth or straight afterwards, there are on the other hand also disorders
p.000013: which only develop at 40, 60 or 80 years of age. And here there are disorders that everyone sees
p.000013: as very serious (Huntington's), serious (certain forms of Alzheimer's) or more acceptable (predisposition
p.000013: to hypertension or obesity).
p.000013: As regards these disorders occurring later in life, some members of the Committee believe that the decision to apply
p.000013: VPT or PGD is in essence the responsibility of the parents, to the extent this concerns disorders caused by only
p.000013: one gene or a very small number of genes. In other cases PGD cannot be carried out because one must possess a
p.000013: very large number of embryos to be able to make a selection. From the concern to arrive at a reasonable decision,
p.000013: however, is it important that the democratic debate about this problem is deepened, so parents do not have to make such
p.000013: a fundamental decision without ethical support.
p.000013:
p.000013: II.3.3.5.
p.000013: A difficult problem in another area is due to physical or psychological characteristics that form a continuum, where
p.000013: certain serious forms occur that can be regarded as pathological, while the majority are considered more or less
p.000013: “normal” (for example different kinds of intelligence, characters, behaviour or affectivity of which serious
p.000013: forms are called neuroses or psychoses).
p.000013: If one establishes that the interaction of a number of genes corresponds to a more or less greater
p.000013: predisposition to different phenotypes, it is obvious that the “pathological/not pathological”
p.000013: dichotomy is difficult to maintain. For as long as it concerns a clearly described, deficient gene we remain in
p.000013: the medical domain and the actions are then private, corrective eugenics. On the other hand, from a certain
p.000013: point in the continuum between “damaged” and “optimal” gene we no longer have “correction” but “enhancement”. But we
p.000013: must honestly admit that it is very difficult or even impossible to reach a consensus about this dividing point. It
p.000013: then also follows that the line between therapeutic genetic modification and enhancement genetic modification is
p.000013: blurred. Consequently the following alternative arises: either a prohibition of all activities on genes that have an
p.000013: influence on characteristics, or admitting that sooner or later the Rubicon forming the line between therapeutic and
p.000013: optimising/enhancement activities will be crossed.
p.000013:
p.000013:
p.000013:
p.000013:
...
p.000027: experiments which comply with long-established deontological rules that are also respected today on a wide
p.000027: scale.
p.000027:
p.000027: As regards the objection that the development of reproductive-genetic experiments would have consequences as regards
p.000027: social justice (only the rich would have access to diagnoses and to DNA recombination), according to some members
p.000027: of the Advisory Committee on Bioethics, protection against unjust availability is in place to prevent some
p.000027: exploiting a technique at the deprivation of others. They also believe that gene therapy will in due course be able to
p.000027: help reduce inequalities between individuals. They reject the bioconservative reasoning in which positive
p.000027: eugenistic practices or practices seen as positive eugenistic practices and their consequences are
p.000027: systematically ignored or brought into discredit. They also dispute the idea that individuals with improved
p.000027: physical or cognitive capacities would be morally inferior to “natural people”. The modified individuals
p.000027: could, on the contrary, demonstrate a wider awareness, a sharper sense of justice and superior moral
p.000027: virtues. In a future context of the application of genetic recombination of the human being, a child could ask
p.000027: itself one day why it does not have better genes - just as good genes as his friend whose parents did not
p.000027: refuse enhancement intervention (memory, intelligence, health) in the name of respect for human nature and
p.000027: the genetic lottery. Here the wish is to justify the enormous actual inequalities of the individuals at genetic level
p.000027: under the pretence that the “natural lottery” is the condition for equality in law of people. But even in highly
p.000027: developed societies actual genetic inequalities are
p.000027:
p.000027: 44 Certain arguments in this paragraph in favour of Standpoint A have been developed further:
p.000027: - by G. Hottois, « Quel rôle pour les philosophes dans les débats bioéthiques ? », Présentation et
p.000027: discussion de G. Habermas, L’avenir de la nature humaine. Vers un eugénisme libéral ?, article à paraître
p.000027: - and by J.-N. Missa, « L’homme recombiné : les enjeux éthiques et philosophiques de la modification du génome de
p.000027: l’être humain » in J.-Y. Goffi, Regard sur les technosciences, Paris, Vrin, 2006 – sous presse.
p.000027:
p.000027: Opinion no 33 of 7 November 2005 - Final version
p.000028: 28
p.000028:
p.000028: not or poorly compensated. If on the contrary we accept that genetic intervention is not by definition
p.000028: a bad thing, the real but very difficult questions arise: those of the vigilant monitoring of eugenistic
p.000028: research and eugenistic development, and particularly that of rightful availability and fair access. It is exactly the
p.000028: political-philosophical questions that we must dare to tackle, instead of merely accepting the hypothesis that genetic
...
p.000032: financing of gene therapies a real priority at present, all the more as private financing is becoming increasingly
p.000032: rare?
p.000032: 58 The politician calls upon the expert because the politician does not have the knowledge; but he
p.000032: nevertheless remains the one who decides, because he will ultimately make the choice… and must therefore
p.000032: take responsibility.
p.000032: 59 “Hygiéniquement correct”, an expression used by Pierre Ronsanvallon in analogy of “politically correct” in his
p.000032: book La Nouvelle question sociale – Repenser L’Etat-Providence, Seuil, 1995.
p.000032: 60 Two totally different situations, medical and social, behavioural and chronological and toxicological and genetic.
p.000032: 61 B. Andrieu. Médecin de son corps, PUF, Parijs, 1999.
p.000032:
p.000032: Opinion no 33 of 7 November 2005 - Final version
p.000033: 33
p.000033:
p.000033: conscience decide to end her pregnancy may obviously not be a subject for discussion. It is very fortunate that the
p.000033: woman today has the right to decide about the quality of the child to be born, and all surveys confirm
p.000033: that 90% of interviewed women would choose abortion in the case of a trisomic foetus. Here also lies the raison d'être
p.000033: for real genetic counselling 63: determining the risk that a foetus is the carrier an anomaly and informing the parents
p.000033: of this. But in this respect it is important to really allow them the freedom to make a choice in all
p.000033: conscience. Otherwise the progress of prenatal diagnosis would no longer be indisputable.
p.000033: As for “democratic eugenics” things are very different to abortion for medical reasons, because in the name of
p.000033: individual freedom the State could introduce eugenics not in that name by putting the full weight of the
p.000033: choice – and of any associated guilt – with the individual, so with the woman expecting an “abnormal” child. If
p.000033: the woman actually has legal access to the knowledge without economic discrimination because all tests and
p.000033: diagnostic and therapeutic operations have been reimbursed, she could therefore be the tool of
p.000033: “biotechnological progress”. Ideally, abortion for medical reasons has the purpose of avoiding serious disorders, and
p.000033: it is a matter discussed at individual level between the physician and patient within an ambiguous legal
p.000033: framework (could this be otherwise?). But in reality the decision is increasingly less often left to the personal
p.000033: ethics of the patient and/or the physician-obstetric. The freedom of choice of the woman is in reality
p.000033: therefore less obvious than we think because it is determined by influential social models, by possible
p.000033: financial considerations, by the family or the general psychological environment, or by an advisor/client
p.000033: relationship that replaces a physician/patient relationship. The decision is gradually moved from the private domain
p.000033: to the public domain as it is under social and shortly also economic pressure.
p.000033: The circle is nearly complete. We could soon arrive unnoticed from a fear of eugenic totalitarism at “democratic
p.000033: eugenics”; voluntary and well-considered individual private eugenics that secretively transforms into individual
p.000033: eugenics with a compelling nature as a result of collective pressure (and the fear of subsequent stigmatisation).
p.000033: According to some, this evolution is all in all progress for public health and the quality of life of parents and
p.000033: baby. According to others, this “progress” is only possible at the expense of a scientific and medical
p.000033: failure: trisomy 21 for example is then not included or treated, but one limits oneself to establishing the
p.000033: existence of trisomy 21 before the birth of the child, and proposing the ending of the pregnancy to
p.000033: the woman concerned. A third group goes yet further: “proposing” is according to this group a euphemism 64,
p.000033: because the woman's society increasingly expects an “approach with a sense of public responsibility” to public health.
p.000033: Such an approach would then consist of bringing an end to her pregnancy and, again, in so doing accept the obligate
p.000033: norm reference concerning what responsible parenthood and a public sense of responsibility means! They add that the
p.000033: evolution will proceed all the faster if one organises the disappearance of pathologies of which one does not know the
p.000033: causes, and society does not make the necessary efforts to offer “persons disabled by the genome” and their nearest
p.000033: real possibilities of integration and development.
p.000033: The arguments of the respective supporters of the three standpoints about the so-called democratic or
p.000033: undemocratic character of new private eugenics (that must however be distinguished from the gruesome
p.000033: totalitarian state activities of former times) cannot shroud the persuasiveness of the prevailing social and
p.000033: cultural standards in our modern societies. Our personal existence is not merely resolvable to our
...
p.000036: purpose, even if they see this as unrealistic in view of the current development of knowledge. They nevertheless
p.000036: believe that this area does not call for priority in applied research, medicine or specific legislation.
p.000036: Fundamental research in this rapidly changing sector should be continued.
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036: Opinion no 33 of 7 November 2005 - Final version
p.000037: 37
p.000037:
p.000037: CHAPTER V. CONCLUSIONS AND RECOMMENDATIONS
p.000037:
p.000037: The Advisory Committee on Bioethics has expanded its considerations on the “gene therapy” concept by discussing all
p.000037: modifications of the genome, with both a curative purpose and enhancing purpose. The Committee wishes to
p.000037: hereby answer the request for opinion from the Senate in which reference is made to pathological and non-pathological
p.000037: genetic characteristics.
p.000037:
p.000037: As regards eugenics, the members of the Committee are of the opinion that the private selection of
p.000037: eugenics related to the use of prenatal diagnosis (PD) or pre-implantation diagnosis (PGD) is in principle acceptable,
p.000037: providing that one applies certain standards in accordance with the severity of the illness (or abnormality). The
p.000037: informed consent of the parents (or the mother) must also be obtained, and there must be an adequate framework as
p.000037: regards follow-up and the provision of information. The ethical considerations raised by these techniques
p.000037: will be discussed in a separate report.
p.000037: This report therefore concerns the therapeutic or enhancement/optimising modification of the somatic or germinal
p.000037: genome.
p.000037:
p.000037: V. 1. Therapeutic somatic gene modification
p.000037: Therapeutic gene modification has up to the present barely seen successful application. Clinical applications and
p.000037: experience in this matter are insufficient to be able to evaluate its concrete perspectives.
p.000037: The most important clinical application concerns immune-deficient children in a sterile environment. The
p.000037: treatment was recently suspended for the second time because of side effects, and is currently being further
p.000037: investigated.
p.000037: The expectations of somatic gene therapy are, however, great, so great that research is being actively continued.
p.000037:
p.000037: For ethical considerations relating to the clinical application of this technique, the Committee refers to its report
p.000037: no. 13 of 9 July 2001 concerning experiments with persons.
p.000037: The Committee is of the opinion that its ethical evaluation is also applicable to therapeutic gene therapy.
p.000037: More specifically, the Committee considers it important to ensure the safety and efficiency of each clinical
p.000037: application by a far-reaching analysis of the advantages on the one hand, and of any risks to the patient on the other.
p.000037: The principle of caution should be applied with the choice of transport vector and the introduction of
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p.000038: techniques for the human germ cell line. They are of the opinion that when these techniques have been refined, it must
p.000038: be decided case by case about the acceptability of the recombinant DNA technology, depending on the context and
p.000038: the characteristics of the intended experiments. There is no reason at all to assume in advance that at some time
p.000038: the recombination of the germinal genome among humans will not be able to take place in circumstances
p.000038: with a minimum risk.
p.000038:
p.000038: These members dispute the idea that individuals provided with improved physical and cognitive capabilities can only be
p.000038: morally inferior to “natural people”. These modified people could on the contrary have a ”broader” conscience, and
p.000038: accordingly show greater sensitivity to rightfulness and higher moral values.
p.000038:
p.000038: They are also of the opinion that if a reliable and relatively simple genetic modification technique is
p.000038: available, the consequences of not taking action are just as great as taking any action.
p.000038:
p.000038: These members are of the opinion that gene therapy will be able to contribute to the reduction of certain inequalities
p.000038: between individuals. In the context of the future application of genetic recombination among people, a child may ask
p.000038: him/herself at a certain time why he does not have better genes such as a friend whose parents have not
p.000038: refused optimisation (memory, intelligence, health) in the name of respect for “human nature” and the genetic
p.000038: lottery. These members are certain that one may not underestimate the advantages a person could gain from such
p.000038: experiments.
p.000038:
p.000038: These members are aware of the fact that the phenotype of a person is the result of interaction between the genome
p.000038: and the internal environment (cellular and somatic) and the external environment (the physical, biological
p.000038: and social-cultural environment) during a person's development. They do emphasise, however, that in an
p.000038: equivalent and stable environment an important part of interindividual variation can be attributed to genetic
p.000038: factors.
p.000038:
p.000038: These members are of the opinion that any reasoning based on all or nothing must be avoided. This reasoning gives
p.000038: support to people who are radically against the modification of the germinal genome in humans. Regulations
p.000038: that do not evolve and are rigid with an absolute and final prohibition of positive eugenics and a very restrictive
p.000038: list for negative eugenics can only push research to become clandestine and applications to join the black market. A
p.000038: prohibition would indeed not prevent technologies developing when highly desired.
p.000038: If one on the other hand accepts that genetic modification is not necessarily a bad thing, the real but very difficult
p.000038: questions arise: those concerning alertness with respect to research into the modification of the human genome
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Social / philosophical differences/differences of opinion
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p.000002: Opinion no 33 of 7 November 2005 concerning somatic and germinal line gene modification with a therapeutic
p.000002: and/or enhancement purpose
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p.000002:
p.000002: Request for an opinion of. 11 May 2001
p.000002: from A. De Decker, Chairperson of the Senate
p.000002: concerning the ethical and legal aspects of different questions relating to research into embryos in vitro and the
p.000002: protection of these embryos
p.000002:
p.000002: Content of the opinion
p.000002:
p.000002: Questions put to the Committee Foreword
p.000002:
p.000002:
p.000002: CHAPTER I. GENE THERAPIES: STATUS QUESTIONIS
p.000002:
p.000002: I.1. Glossary
p.000002: I.2. Gene – genotype – genetics
p.000002: I.2.1. Traditional conceptual genetics (1865-1945)
p.000002: I.2.2. Molecular or genomic genetics (1944-2000)
p.000002: I.2.3. Post-genomic genetics (2000 - …)
p.000002: I.3. Gene therapy
p.000002: I.4. Current legal framework in Belgium CHAPTER II. EUGENICS
p.000002: II.1. Historical context
p.000002: II.2. Definitions
p.000002: II.3. Negative eugenics by the selection of embryos and/or foetus
p.000002: II.3.1. Historical summary – Medical status questionis
p.000002: II.3.2. Private negative eugenics: current situation
p.000002: II.3.3. Ethical considerations
p.000002: II.4. Positive eugenics by active intervention in the human germ cell line CHAPTERE III. SOMATIC GENE MODIFICATION
p.000002: III.1. Historical summary – Medical status questionis
p.000002: III.2. Therapeutic indications and difficulties
p.000002: III.3. Ethical discussion about somatic gene modification
p.000002: III.3.1. General considerations
p.000002: III.3.2. Specific ethical problems
p.000002:
p.000002: CHAPTER IV. GERMINAL GENE MODIFICATION
p.000002:
p.000002: IV.1. Historical summary
p.000002: IV.1.1. Arguments of ‘bioprogressives’ with respect to the modification of the human genome
p.000002: IV.1.2. Arguments of ‘bioconservatives’ with respect to the modification of the human genome
p.000002: IV.2. Ethical discussion within the Committee concerning germinal gene modification
p.000002: IV.2.1. Standpoint A
p.000002: IV.2.2. Standpoint B
p.000002: IV.2.3. Standpoint C
p.000002:
p.000002: CHAPTER V. CONCLUSIONS AND RECOMMENDATIONS
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p.000002: Opinion no 33 of 7 November 2005 - Final version
p.000002: 2
p.000002:
p.000002: Questions put to the Committee
p.000002: The Senate puts the following question.
p.000002: “[ … ] In view of various legislative proposals pending in the Senate concerning research into embryos and the
p.000002: protection of embryos in vitro;
p.000002: In view of the important social and ethical challenges for political decision making with respect to
p.000002: scientific research, the potential uses of modern biotechnology and the implications of this on the
p.000002: protection of the embryo;
p.000002: In view of article 18 of the Treaty of the Council of Europe relating to human rights and biology and medicine; [ … ]
p.000002:
p.000002: The undersigned request the Belgian Advisory Committee on Bioethics to, within the period determined in the
p.000002: aforementioned Agreement of Cooperation, present its recommendations in the light of the abovementioned
p.000002: legislative proposals concerning:
p.000002:
p.000002: - the concepts “embryo” and “pre-embryo”;
p.000002: - the concept “research” in the sense of article 18 of the aforementioned Treaty;
p.000002: - the concept of “adequate protection” of the embryo and pre-embryo;
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p.000002: therapy;
p.000002: 2. the distinction between corrective germinal gene therapy and enhancement germinal gene therapy;
p.000002: 3. the concept of “treatments with a eugenic nature” and “treatments with a real eugenic purpose”: the distinction
p.000002: between pathological and non-pathological genetic characteristics;
p.000002: 4. the question of the necessity and acceptability of the creation of embryos for research purposes;
p.000002: 5. the question of the necessity and acceptability of the use of embryonic stem cells with therapeutic objectives
p.000002: (therapeutic cloning) and alternatives for the use of embryonic stem cells;
p.000002: 6. the implications of Belgian legislation;
p.000002: and this in the field of biology, medicine and health care, and in particular with respect to the ethical, social and
p.000002: legal aspects, more specifically concerning the observance of human rights.”.
p.000002:
p.000002: The plenary meeting of the Committee considered the issue on 9 July 2001. This question already gave rise to report no.
p.000002: 18 of 16 September 2002 concerning research into the human embryo in vitro and report no. 24 of 13 October
p.000002: 2003 concerning human stem cells and therapeutic cloning. The current report therefore covers the still pending
p.000002: questions, namely gene therapies in the broad sense.
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p.000002: Opinion no 33 of 7 November 2005 - Final version
p.000003: 3
p.000003:
p.000003: Foreword
p.000003:
p.000003: The present opinion concerns gene therapies in the broad sense of the term, being all genetic activities irrespective
p.000003: of whether they relate to the soma or the germ line, and irrespective of whether they have a therapeutic or
p.000003: optimising/enhancement purpose. In the hypotheses of activities ‘with therapeutic purpose’ the Committee will use
p.000003: both the terms ‘modification’ and ‘therapies’, but in the case of genetic activities ‘with
p.000003: optimising/enhancement purpose’, the Committee will only use the term ‘modification’.
p.000003: The Committee consequently proposes the following title:
p.000003: “Somatic and germinal line gene modification with therapeutic and/or enhancement purpose”.
p.000003:
p.000003:
p.000003: CHAPTER I. GENE THERAPIES: STATUS QUAESTIONIS
p.000003:
p.000003: Genetics is a field that is constantly evolving, so a good understanding of the concept of gene therapy requires an
p.000003: assessment of the current situation.
p.000003: The term ‘gene’ was a key term in the 20th century. Initially it was used with regard to the
p.000003: transfer of hereditary characteristics from generation to generation. However, a generally accepted
p.000003: definition of the term ‘gene’ and the associated concepts have never existed. The gene concept has
p.000003: evolved in the light of experimental discoveries, theoretical developments and epistemological categories.
p.000003: In our analysis of the status quaestionis we will distinguish three main phases in the development of
p.000003: genetics which cast a light on the perspectives of gene therapy: the conceptual phase, the genomic phase and the
p.000003: postgenomic phase. For a good understanding of the content of the advisory report this chapter also contains a
p.000003: glossary.
p.000003:
p.000003: I. 1. Glossary
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p.000003: (adenine, thymine, cytosine, guanine) and phosphorus. The DNA is the carrier of the genetic information.
p.000003: - Nuclear DNA: DNA present in the chromosomes of the nucleus or cell nucleus.
p.000003: - Mitochondrial DNA: DNA from the chromosome present in each mitochondrium of the cell.
p.000003: - Alleles: different forms of a same gene resulting in different phenotypes.
p.000003: - RNA: ribonucleic acid. Molecular chains consisting of a sugar (ribose), the nitrogen bases (adenine,
p.000003: uracil, cytosine, guanine) and phosphorus. RNA has various functions in cells (see the different kinds of RNA below).
p.000003:
p.000003: - Precursor messenger RNA (pre-mRNA): RNA that results from the transcription of a coding DNA sequence.
p.000003: - Messenger RNA (mRNA): RNA that results from the splicing of a pmRNA. mRNA is used by the ribosomes
p.000003: as translation model with the synthesis of proteins.
p.000003: - Antisense RNA: RNA of which the sequences are complementary to the messenger RNA sequences.
p.000003: - Interfering RNA: small RNA coded by the genomic DNA with a regulatory function by attaching to
p.000003: complementary mRNA (inhibiting its translation) or to DNA sequences (of which the structure and the
p.000003: possibility of transcription changes).
p.000003: - Micro RNA: small RNA coded by the genomic DNA that after various modifications attaches to
p.000003: the mRNA (inhibiting its translation) and to the genomic DNA (inhibiting transcription). Some micro RNA finds
p.000003: its origin in the introns resulting from the splicing of pmRNA to mRNA.
p.000003: - Editing: mechanism where uracil molecules in messenger RNA are introduced with the
p.000003:
p.000003: Opinion no 33 of 7 November 2005 - Final version
p.000004: 4
p.000004:
p.000004: modification of its message.
p.000004: - Enzyme: molecule with catalysing property, usually a protein or ribonucleic acid.
p.000004: - Epigenesis - Epigenetic: describes the differentiated expression of the genes under the influence of factors
p.000004: within or outside the organism.
p.000004: - Splicing: process where precursor messenger RNA is transformed to messenger RNA by cutting away certain areas.
p.000004: - Eugenics: see item II.2.
p.000004: - Gene: DNA sequence (RNA sequence with certain viruses) that carries molecular information determined
p.000004: by the nucleotide sequences. Falls under the understanding of ‘hereditary factor’. The gene functions as a
p.000004: matrix model with the synthesis of premessenger RNA.
p.000004: - Genome: complete set of genes of an organism, an individual or a species. A distinction is made between the
p.000004: nuclear genome (DNA of the nucleus or cell nucleus) and the mitochondrial genome (DNA of the mitochondria).
p.000004: - Genotype - phenotype: the genotype forms the whole of genetic characteristics of an individual ensuing from
p.000004: the composition of its DNA (RNA with some viruses). The phenotype is the whole of observable
p.000004: characteristics (anatomical, morphological, physiological and biochemical characteristics) of an individual.
p.000004: - Heteroplasmy: hybrid cytoplasm that results from the fusion of the cytoplasm of two different organisms
p.000004: - Germ line: whole of the reproductive cells of an individual that ensure the transfer of the hereditary
p.000004: properties of that individual to its offspring.
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p.000004: cells to trace a hereditary illness before inserting the embryo in utero .
p.000004: - Proteome: system of all proteins of an organism that results from the translation of messenger RNA
p.000004: and of post-translational modification
p.000004: - Regulation: process that modulates the expression of a DNA sequence as a cascade. Some of the
p.000004: sequences, the so-called coding sequences, are transcribed in pre- messenger-RNA, that after splicing become
p.000004: messenger-RNA and that play a part in the synthesis of the proteins. Other sequences are transcribed in small
p.000004: regulating RNA (interfering RNA and Micro RNA).
p.000004: - Soma: all non-germinal cells that form the tissue and organs of an individual.
p.000004: - Gene therapy: introduction into a genome with a defective gene of a normal copy of that gene to correct the
p.000004: consequences of the defect.
p.000004: - Transcription: synthesis of RNA sequences on the basis of a DNA model.
p.000004: - Transcriptom: system of all RNA molecules that result from the transcription of the DNA of an
p.000004: organism.
p.000004: - Transgen: gene of an organism that is transferred to the genome of another organism
p.000004: - Transgenesis: process of transferring the gene of an organism into the genome of another organism
p.000004: - Translation: synthesis of protein-creating amino acid polymers from an mRNA model that is used by the
p.000004: ribosomes as example.
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p.000004:
p.000004: Opinion no 33 of 7 November 2005 - Final version
p.000005: 5
p.000005:
p.000005: I. 2. Gene – genotype - genetics1
p.000005: I.2.1. Traditional conceptual genetics (1865-1945)
p.000005:
p.000005: We can have this phase symbolically start with the work of Mendel (1865) on the hereditariness of
p.000005: characteristics. Weismann (1892) distinguishes the hereditary substance he calls the germ line (“germen” in
p.000005: german), and the non-hereditary substance he called soma.
p.000005: In 1901 the botanist Correns identified the germ plasma that contains all hereditary elements. Johanssen
p.000005: described the elements as genes, which all together form the genotype
p.000005: . The characteristics resulting from the expression of the genotype determine the
p.000005: phenotype.
p.000005: In 1906 Bateson announced to the scientific world that he was working on hereditariness, or
p.000005: genetics.
p.000005: The nature of hereditary entities remained unclear for a long time. Morgan, who won the Nobel Prize in 1933,
p.000005: declared that it was unimportant as to whether the gene was considered a hypothetical unit or a
p.000005: material particle. What counted for him was that a modification in a gene changes a property of the phenotype.
p.000005: Müller (1927) observed genetic modification (mutations) induced by X-rays that passed from generation to generation, of
p.000005: which the phenotypical expression depended on the mutation on the chromosomes.
p.000005: Kühn (1941) showed that a characteristic (red eye of an insect) is induced by an enzyme that catalyses a cascade of
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p.000005: transmission was achieved in some cases (retrovirus). The essence of the postulate, namely the non-transmission of the
p.000005: information of the proteins to the DNA, nevertheless remains current.
p.000005: In this context the genotype, or the collection of genes materialised in the DNA (RNA with certain viruses), forms a
p.000005: genetic program. In the sixties Jacob and Monod established two classes of genes (structural genes and regulatory
p.000005: genes) that match signal sequences not translated into proteins.
p.000005: At a very early stage some authors saw that the genetic program interacted with its products. Only these
p.000005: products can interpret the programme, and the organism ultimately manages the working of the structural genes
p.000005: by activating or inhibiting the regulatory genes.
p.000005: Numerous interaction systems between genotype and phenotype have come to light.
p.000005: Today a protein product is no longer considered as the pure collinear reflection of the DNA sequences. The same DNA
p.000005: sequence can generate diverse messenger-RNA that induce various proteins with different phenotypical
p.000005: characteristics. This is because the messenger- RNA and the proteins of which messenger-RNA induces the
p.000005: synthesis undergo different modification (RNA-splicing, RNA-editing, methylation, glycosylation, etc).
p.000005: Sequences of separate messenger-RNA can join to cause the form a given protein. Interaction takes place at different
p.000005: levels:
p.000005:
p.000005:
p.000005: 1 Stanford Encyclopedia of Philosophy (2004)
p.000005:
p.000005: Opinion no 33 of 7 November 2005 - Final version
p.000006: 6
p.000006:
p.000006: - gene products which mutually interact;
p.000006: - nuclear genes that interact with mitochondrial genes (hence the divergence of the expression of
p.000006: the precursor gene of the protein amyloid that deposits in the brain with the Alzheimer illness, depending on the
p.000006: information contained in the mitochondrial genome)2 ;
p.000006: - the question of from which parent a gene comes can have an effect.
p.000006:
p.000006: A decisive role in that respect is played by regulating factors, consisting of RNA, proteins or molecules with a low
p.000006: molecular weight (which work as cofactors or inhibitors).
p.000006:
p.000006: 1.2.3. Post-genomic genetics (2000 - …)
p.000006:
p.000006: Paradoxically enough the decoding of the human genome (2001) has reinforced a paradigm change in the field of genetics.
p.000006: Except in a few cases in which the gene has an omnipotent effect, the relationship between genes and phenotypes follows
p.000006: a complicated determinism.
p.000006:
p.000006: The phenotype is regarded as tributary to the genome, the transcriptome, the proteome, the metabolom and ambient
p.000006: factors.
p.000006: Over a period of 50 years molecular genetics, that started from the reductionist dogma ‘DNA -> RNA ->
p.000006: protein -> phenotype’, has made clear that hereditariness and reproduction cannot be reduced to static
p.000006: genetics, but are evolutionary development processes. Genomics has taken a flexible and dynamic form, with a
p.000006: considerable capacity for molecular and structural evolution. Final integration takes place at the expense of the
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p.000006: species. This concerns in this case organisms of which the populations underwent transgenesis by the
p.000006: incorporation of new genes, and then were subjected to thorough selection, whereby numerous individuals
p.000006: were eliminated until only one or a few individuals remained displaying the sought phenotype. The technique is
p.000006: successfully applied to have organisms produce medically useful molecules (insulin, growth hormone, etc.).
p.000006: As regards the application of the technique on people, in principle two kinds of gene therapy can be considered:
p.000006: somatic gene therapy, where the genome of the cells of the soma is changed, and germinal gene therapy
p.000006: that concerns the germ line. The second type of gene therapy will therefore also have consequences on the
p.000006: offspring of the treated individual.
p.000006: A distinction can be made between gene therapies and enhancement gene modification. The latter has no therapeutic
p.000006: purpose, but is aimed at modifying the genome to increase individual performance at phenotypical level.
p.000006:
p.000006: In the simplest case gene therapy consists of from a therapeutic perspective the introducing in a genome of a DNA
p.000006: fragment that codes for a protein, being the compensation of a congenital deficiency or making a deficient gene
p.000006: non-active.
p.000006: Transgenesis can take place whereby DNA that produces antisense-RNA (anti-messenger-RNA)
p.000006:
p.000006: 2 Busciglio, J., et. al. (2002) “Altered metabolism of the amyloid beta precursor protein is associated with
p.000006: mitochondrial dysfunction in Down’s syndrome”, Neuron 33, P. 677-688.
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p.000006: Opinion no 33 of 7 November 2005 - Final version
p.000007: 7
p.000007:
p.000007: or interfering RNA is inserted to inhibit the expression of a gene, and in so doing impede the production of its
p.000007: protein product.
p.000007: To achieve the therapeutic transgenesis a ‘normal’ gene is isolated that is connected to a vector, so a
p.000007: recombinant DNA is formed, which the whole must be correctly inserted in the host genome to produce the sought
p.000007: substance.
p.000007:
p.000007: Another form of gene therapy concerns mitochondrial DNA.
p.000007: Each mitochondrion contains a DNA molecule that contains approximately 40 genes in constant dialogue with the
p.000007: nuclear DNA. Medical observations appear to demonstrate a connection between certain neurological disorders and
p.000007: mitochondrial defects.
p.000007: One believes that the interactions between nuclear DNA and mitochondrial DNA should be analysed for the
p.000007: purposes of future therapeutic programmes.
p.000007:
p.000007: Finally, we will discuss assisted reproduction by cytoplasm transfer, even if the technique does not really
p.000007: fall under gene therapy.
p.000007: Experiments have taken place with oocyte heteroplasmy to treat the syndrome of the moderate development of the human
p.000007: embryo. The transport of cytoplasm from a normal donor egg cell to a deficient receiving egg cell led in an
p.000007: experimental series to 13 births out of 30 implanted embryos. Two of the 13 children had chromosomal defects, and
p.000007: one appeared at 18 months to have the disorder “Pervasive Development Disorder”.
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p.000007: intervention with the human genome the legislator wanted to make a distinction between germ track therapy
p.000007: aimed at improving the human species (and that must be prohibited) and therapeutic germ track therapy aimed at
p.000007: combating a number of diseases such as chorea of Huntington, mucoviscidosis, haemophilia and various
p.000007: neurodegenerative illnesses.
p.000007:
p.000007: In that same perspective article 5, 5° of the abovementioned law does not allow research or treatments to
p.000007: be carried out for sex selection, with the exception of selection to prevent gender-bound diseases.
p.000007:
p.000007: Article 13 of the Convention of the Council of Europe on human rights and Biomedicine forbids
p.000007:
p.000007: 3 E. Scott Stills, Takumi Takeuchi, Michaels Tucker, Gianpero D Palermo, “Genetic and epigenetic
p.000007: modifications associated with human ooplasm donation and mitochondrial heteroplasmy considerations for interpreting
p.000007: studies of heritability and reproductive outcome” in Medical Hypotheses (2004), 62,612- 617, Elsevier; Rachel Levy,
p.000007: Kay Elder and Yves Ménézo, “Cytoplamic transfer in oocytes: biochemical aspects” in Human Reproduction
p.000007: Update (2004), 10, 241-250; Susan M. Haves, Carmen Spazienza and Keith E. Latham, “Ooplamic donation in
p.000007: humans. The potential for epigenic modifications. Debate” in Human Reproduction (2002), 17, 850-852; Brenner CA,
p.000007: Barritt JA, Willadsen S and Cohen J, “Mitochondrial DNA Heteroplasmy after human ooplasmic transplantation” in Fertilil
p.000007: Steril.(2000), 74, 573-578.
p.000007:
p.000007: Opinion no 33 of 7 November 2005 - Final version
p.000008: 8
p.000008:
p.000008: any research relating to germinal gene therapy. The Belgian legislator, on the other hand, has left open the
p.000008: possibility that germinal gene therapy techniques that work on a line of gametes of a living being can conquer diseases
p.000008: for the being itself and for its offspring.
p.000008: This accordingly concerns a therapeutic purpose in the sense of article 3.
p.000008:
p.000008: To avoid any lapses the law provides for a procedure with a deontological framework (requirement of
p.000008: positive opinion (without possibility of appeal from the local ethical committee of the hospital where the research
p.000008: will take place, and control by the federal commission for medical and scientific research on embryos in vitro).
p.000008:
p.000008:
p.000008: CHAPTER II. EUGENICS
p.000008: II.1. Historical context
p.000008: As already stated the term “eugenics” is global, and covers different connotations one can identify in the
p.000008: constantly changing marginal areas of politics, biology, sociology and ideology.
p.000008:
p.000008: Eugenics is a social movement started up by the English statistician Francis Galton in the middle of the
p.000008: 1860's. He introduced the term in 1883. Galton appeared to be very influenced by reading “On the origin of species” by
p.000008: his cousin Charles Darwin. Darwin's work was published in 1859. In 1904 Galton started a national course in eugenics at
p.000008: the university of London. During the same period centres of learning for eugenics were set up in different countries
p.000008: including Germany and the United States.
p.000008: The basic idea consisted of very many human characteristics - both physical and mental - being heritable, and that one
p.000008: must take measures to optimise/enhance the genetic (“related to the genesis/reproduction”) quality of the population.
p.000008:
p.000008: From the start one made a distinction between negative eugenics where one discouraged people with
p.000008: “characteristics” considered as undesirable from reproducing, and positive eugenics where one encouraged the
p.000008: reproduction of people with properties one considered desirable.
p.000008:
p.000008: Techniques where one selects plants and animals at reproduction level form an important discovery in
...
p.000008: From the time one realised that the human species had also naturally evolved by interaction between the variability
p.000008: of genetic characteristics and the natural and social environment, the idea soon emerged that people would be able to
p.000008: control their own evolution for a better future, because artificial selection apparently worked in both animals and
p.000008: plants.
p.000008:
p.000008: We can ask ourselves how a number of well-intentioned researchers and politicians came to consider the
p.000008: eugenistic movement as a contribution to public welfare, not only from the standpoint of the individual, but
p.000008: also as a whole of measures that must be encouraged by the State. To explain their attitude we must take
p.000008: account of the fact that the understanding of Public Health at the end of the 19th century had achieved an
p.000008: incontrovertible status. Facilities arrived such as collective provisions for waste disposal and sewer water,
p.000008: a drinking water supply, the halting of epidemics by vaccination and even compelling measures such as
p.000008: quarantines. This all created a mentality positive to collective activities that suggested a better future for society
p.000008: and even for what one called “the human race”. A double distinction must be made here: firstly a distinction between
p.000008: wthat science seemed to promise and the absence of a sound basis for these ‘scientific’ conceptions, and secondly a
p.000008: distinction between the perfectly worthy ethical ambition of those who wanted to improve the destiny of future
p.000008: humanity, and
p.000008:
p.000008:
p.000008: Opinion no 33 of 7 November 2005 - Final version
p.000009: 9
p.000009:
p.000009: the inclination of others to favour certain population classes or races. The growing influence of the second term of
p.000009: that double distinction explains the tragic lapses subsequently attributed to the eugenistic movement as a whole.
p.000009:
p.000009: Although Galton was the first to develop this vision, Darwin himself was not against it. In “The Descent of Man” he
p.000009: says: “The two sexes should refrain from marriage if they are in any marked degree inferior in body or mind. But such
p.000009: hopes will never be even partially realised until the laws of inheritance are thoroughly known.”4. One may remark that
p.000009: Darwin supported individual choice and refrained from promoting actual measures as long as the scientific
p.000009: knowledge required for this was absent. Very many people thought to have been inspired by him appeared not to act with
p.000009: such caution.
p.000009:
p.000009: II.2. Definitions
p.000009: Since the origin of the concept of eugenics there has always been much confusion, and all sorts of terms have been
p.000009: thrown together, particularly as regards terminology. As a result, opinions and standpoints concerning this
p.000009: concept have been falsified. The Committee therefore proposes introducing the following distinctions.
p.000009:
p.000009: It is true that the term eugenics originally referred to a general ‘improvement’ of the human species (the human
p.000009: ‘race’) with the purpose of spreading ‘desirable’ genetic characteristics by suppressing the number of ‘undesired’
p.000009: properties of the species. Since the Second World War all measures with the purpose of the ‘improvement’ of a
...
p.000009: is the prenatal diagnosis of a pregnant woman from a certain age.
p.000009:
p.000009: Social eugenics or macro-eugenics or even collective eugenics.
p.000009: This is aimed at the introduction of measures with the purpose or consequence of reducing the number of
p.000009: genetic defects or increasing the number of advantageous characteristics in a specific population or
p.000009: within the whole human species. One can distinguish two kinds.
p.000009:
p.000009: - Non-compelling macro-eugenics meaning at the level of society information is made available about
p.000009: genetics, and one encourages and supports people taking eugenistic decisions without actually compelling
p.000009: them. In the current situation this can concern making tracing methods available for damaged genes, genetic
p.000009: counselling, the reducing of resistance to the termination of the pregnancy after pre-implantation diagnosis (PGD) or
p.000009: after the termination of the pregnancy after prenatal diagnosis (PD), etc.
p.000009:
p.000009: - Compelling macro-eugenics, sometimes called state eugenics. This involves
p.000009: the introduction of imperative measures at state level. Here the freedom of the individual or the couple is
p.000009: affected. One can interpret the prohibition of marriages between blood relations for genetic reasons as a form of
p.000009: this type of macro-eugenics.
p.000009:
p.000009:
p.000009: 4 The Descent of Man, General Summary, Publisher The Great Books, p. 596
p.000009:
p.000009: Opinion no 33 of 7 November 2005 - Final version
p.000010: 10
p.000010:
p.000010: The example of the policy of compulsory vaccinations indicates that the introduction of imperative measures within the
p.000010: context of public health and imperative measures by the state is therefore not always regarded as unacceptable.
p.000010: However, negative state eugenics was responsible for misuse in the sterilisation and elimination of the mentally ill in
p.000010: the XX century.
p.000010:
p.000010: Each type of eugenics can have a negative form: elimination or reduction of undesired characteristics or a
p.000010: positive form: the promoting of characteristics regarded as desirable.
p.000010:
p.000010: This terminological approach entails no value judgement, but can serve as a starting point for discussions about
p.000010: scientific results and ethical and political standpoints.
p.000010:
p.000010: II.3. Negative eugenics by the selection of embryos and/or foetus
p.000010: II.3.1. Historical summary – Medical status questionis
p.000010:
p.000010: A new medical discipline has developed since the end of the 60's: clinical genetics. Its importance has
p.000010: greatly increased due to scientific progress and reinforced cooperation with gynaecology and obstetrics
...
p.000010: sterility problem (i.e. already candidates for IVF);
p.000010: - couples with a high genetic risk who have already undergone “traditional” prenatal, diagnostic testing and who
p.000010: have already resorted a number of times to VPT after the detection of an
p.000010:
p.000010:
p.000010: 5 Chorionic villus sampling.
p.000010: 6 Taking of amniotic fluid (fluid from around the fœtus).
p.000010: 7 For this and other information we refer we to: Hans Galjaard, Rapport du CIB sur le diagnostic génétique
p.000010: pré-implantatoire et les interventions sur la lignée germinale, Comité International de Bioéthique de
p.000010: L’Unesco (CIB), Actes, November 2002.
p.000010: 8 In 1989 the first PGD by Handyside was already involved with gender-bound diseases; it was from a
p.000010: technical perspective easier than molecular diagnosis; see: Handyside AH, Kontogianni EH, Hardy K, Winston
p.000010: RM, « Pregnancies from biopsied human preimplantation embryos sexed by Y-specific DNA amplification »,
p.000010: Nature, 1990 Apr 19;344(6268):768-70; Handyside AH, Pattinson JK, Penketh RJ, Delhanty JD, Winston RM, Tuddenham
p.000010: EG, « Biopsy of human preimplantation embryos and sexing by DNA amplification », Lancet, 1989 Feb
p.000010: 18;1(8634):347-9. Handyside, A.H. et al., Birth of a normal girl after in vitro fertilization and preimplantation
p.000010: diagnostic testing for cystic fibrosis, The New England Journal of Medicine, 1992, 327, p.905-909.
p.000010:
p.000010: Opinion no 33 of 7 November 2005 - Final version
p.000011: 11
p.000011:
p.000011: affected foetus;
p.000011: - couples with a risk of a child affected by a genetic illness or deformity and who are against VPT.
p.000011:
p.000011: At international level PGD is increasingly applied for the screening of aneuploidy and for sex selection for
p.000011: non-medical reasons9.
p.000011:
p.000011: A recent extension of PGD indications is HLA blastomer profiling, a process wrongly labelled “designer baby” by the
p.000011: media10.
p.000011:
p.000011: Preimplantation diagnosis including the variant HLA blastomer profiling raises ethical questions for which opinion will
p.000011: have to be drawn up.
p.000011:
p.000011: II.3.2. Private negative eugenics: current situation
p.000011:
p.000011: Private eugenics is a form of eugenics connected to the use of prenatal identification techniques and
p.000011: pre-implantation diagnosis. As a result, one can avoid couples having children carrying a hereditary illness or
p.000011: disability11.
p.000011:
p.000011: Current biological and medical events (medically assisted reproduction, prenatal and pre- implantation
p.000011: diagnostics, genetic treatment attempts, programme for the mapping of and sequence-determining of the human
p.000011: genome) again brought the question of eugenics to the foreground. The idea of “eugenics” itself is again raising
p.000011: concern among some.
p.000011:
p.000011: But eugenics related to progress achieved in genetics and in new techniques of medically assisted
p.000011: reproduction is not of the same nature as state eugenics as developed in pre-war Germany and in the United
p.000011: States, and that is still currently being applied in China. We may therefore not use the same terminology for
p.000011: practices with such a totally different context and purposes. State eugenics has the purpose of enforcing “the
p.000011: enhancement of the human species”.12, and that is not the case with private eugenics. Because of the emotional
p.000011: charge of the term “eugenics”, some think that one can better not use this terminology in a situation that concerns
p.000011: the freedom and autonomy of the parents. Other people believe that instead of avoiding the term
...
p.000011:
p.000011: 9 Sermon, K., Moutou, C., Harper, J. et al. (2004), “ESHRE PGD Consortium data collection IV: May -
p.000011: December 2001” in Human Reproduction 20 (1): 19-34.
p.000011: 10 For this technique: see G. Pennings, R. Schots and I. Liebaers, Ethical considerations on preimplantation genetic
p.000011: diagnosis for HLA typing to match a future child as a donor of haematopoietic stem cells to a sibling in Human
p.000011: Reproduction, Vol.17, nr. 3, 534-538, 2002.
p.000011: 11 Carol, Anne, « Histoire de l’eugénisme en France », Parijs, Seuil, 1995; Duster, T., « Retour à
p.000011: l’eugénisme », (traduit de l’anglais par Colette Estin), Paris, Kimé, 1992 ; Missa, J.-N. et Susanne, C., « De
p.000011: l’eugénisme d’Etat à l’eugénisme privé », De Boeck, 1999 ; Taguieff, P.-A., « Retour sur l’eugénisme,
p.000011: question de définition » in Esprit, n° 200, Paris, Mars-Avril 1994 ; Testart, J., « Le désir du gène », Editions
p.000011: François Bourin, 1992 ; Thomas, J.-P., « Les fondements de l’eugénisme », Presses Universitaires de France,
p.000011: Parijs, 1995.
p.000011: 12 “L’individu n’est rien, l’espèce est tout ”wrote eugenist, Nobel Prize winner and physiologist Charles
p.000011: Richet in 1922. This idea was later adopted in a racist form in the motto of the Nazis: “du bist nichts, dein Volk ist
p.000011: alles” “you are nothing, your people is everything”.
p.000011:
p.000011: Opinion no 33 of 7 November 2005 - Final version
p.000012: 12
p.000012:
p.000012: pre-implantation genetic diagnosis (PGD), and the implications of these diagnoses. If no therapeutic
p.000012: solution exists for the abnormality diagnosed during the pregnancy, and if the parents and professionals
p.000012: consider this a serious abnormality, the result will usually be voluntary pregnancy termination. Abortion
p.000012: can be applied with chromosomal aberrations (mongolism, etc.) or with serious metabolic disorders (Tay-Sachs
p.000012: Disease, etc.). The technique of prenatal diagnosis leads to the practice of negative eugenics, so one prevents
p.000012: children being born who suffer from serious abnormalities. Parallel to this the right to abortion is given legal
p.000012: support in very many countries: Great Britain (1967), United States (1973), France (1975), the Netherlands (1981),
p.000012: Belgium (1990), etc.
p.000012:
p.000012: II.3.3. Ethical considerations
p.000012:
p.000012: II.3.3.1.
p.000012: Certain groups in society are completely against any form of eugenics, collective and private.
p.000012:
p.000012: - The essential argument is based on the consideration of the embryo to be a human person from fertilisation
p.000012: (standpoint mentioned by the Committee in opinion no. 18 of 16 September 2002, chapter IV, item 4.2.1.) or that
p.000012: it has sufficient personality characteristics so the termination of its further development should be completely
p.000012: forbidden. This implies that VPT is not acceptable, even in the case of illness or serious deformations.
p.000012: These people deem PGD unacceptable because this implies that selection has occurred, and that this has the
p.000012: inevitable effect of certain embryos being eliminated.
p.000012: - They also put forward the idea that the acceptance of private eugenics deviously puts pressure on women who refuse
p.000012: these techniques. This would lead to imperative collective eugenics that, due to economic or cultural pressure, would
p.000012: be similar to state eugenics.
p.000012: - Finally, they suggest that the importance attached to the avoidance of the birth of a child with an abnormality
p.000012: would have a negative influence on our attitude to disabled children already born, and the care they
p.000012: receive.13
p.000012:
p.000012: Some members have the following remarks.
p.000012: The first argument is based on an extreme standpoint about the status of the embryo and the foetus.
p.000012: The second argument refers to an unavoidable phenomenon. From the time of a value being accepted by the majority of the
...
p.000012: privileged.
p.000012:
p.000012: II.3.3.2.
p.000012: Among the population and specialists in genetics and medically assisted reproduction, there exists a certain
p.000012: consensus about the fact that one considers PD (followed by VPT) and PGD ethically acceptable in “severe”
p.000012: or “serious” cases.
p.000012:
p.000012: Some members of the Committee indeed consider that the status of the embryo and the foetus has no part in the status of
p.000012: the person, and that embryos and foetuses only gradually obtain the qualities of a human being according to
p.000012: intra-uterine development.
p.000012: Starting from this consideration, they consider that the distinctive weight assigned on the one hand to an embryo, and
p.000012: on the other hand to the possible or probable suffering of the unborn child arriving in the world with a serious
p.000012: disability, as well as the welfare and the health of future parents, justify resorting to this action.
p.000012:
p.000012:
p.000012: 13 These attitudes are defended, for example, by the Fondation Jérôme Lejeune. See the intervention in the French
p.000012: Senate of President Jean-Marie Le Mené: ‘Y a-t-il un eugénisme “clean”?’ on the site:
p.000012: www.généthique.org/doss_theme/dossiers/eugénisme/eugénisme_jmlm.htm
p.000012:
p.000012: Opinion no 33 of 7 November 2005 - Final version
p.000013: 13
p.000013:
p.000013: II.3.3.3.
p.000013: Agreement has not, however, been reached about the ethical question of what a “severe” or “serious”
p.000013: disorder or deformity is. Professional associations involving clinical geneticists, reproductive technology and
p.000013: bio-ethical advisers have still not yet agreed about the drawing up of a list of disorders which are accepted as
p.000013: serious enough to justify a PGD or PD. There are indeed more than 5,000 monogenetic disorders, and nearly all of these
p.000013: disorders show signs of variable severity and clinical evolution (see H. Galjaard, a.c.).
p.000013:
p.000013: It appears normal that specialists hesitate in stating their personal opinion about the question of the severity or
p.000013: gene disease or abnormality. It is indeed the future parents who must bare the responsibility for the child
p.000013: disorder. The estimation of the severity of this disorder is determined by the cultural and social environment
p.000013: (the geographic factor - such as e.g. in the Third World - or financial resources), by their family history (other
p.000013: disabled children), by their religious convictions and by their conviction about what a valuable life is for themselves
p.000013: and for their unborn child.
p.000013:
p.000013: If one takes account of the fact that in very many legal systems VPT is allowed for psychosocial reasons (which are
p.000013: difficult to define), it would be somewhat paradoxical that disorders, abnormalities or malformations
p.000013: originating from the medical domain would not be accepted as a justification for VPT or PGD.
p.000013:
p.000013: Certain members of the Committee therefore believe that the decision about the justification of the use of these
p.000013: techniques in essence must first be taken by the parents concerned (or by the mother), after of course they have
...
p.000013: a fundamental decision without ethical support.
p.000013:
p.000013: II.3.3.5.
p.000013: A difficult problem in another area is due to physical or psychological characteristics that form a continuum, where
p.000013: certain serious forms occur that can be regarded as pathological, while the majority are considered more or less
p.000013: “normal” (for example different kinds of intelligence, characters, behaviour or affectivity of which serious
p.000013: forms are called neuroses or psychoses).
p.000013: If one establishes that the interaction of a number of genes corresponds to a more or less greater
p.000013: predisposition to different phenotypes, it is obvious that the “pathological/not pathological”
p.000013: dichotomy is difficult to maintain. For as long as it concerns a clearly described, deficient gene we remain in
p.000013: the medical domain and the actions are then private, corrective eugenics. On the other hand, from a certain
p.000013: point in the continuum between “damaged” and “optimal” gene we no longer have “correction” but “enhancement”. But we
p.000013: must honestly admit that it is very difficult or even impossible to reach a consensus about this dividing point. It
p.000013: then also follows that the line between therapeutic genetic modification and enhancement genetic modification is
p.000013: blurred. Consequently the following alternative arises: either a prohibition of all activities on genes that have an
p.000013: influence on characteristics, or admitting that sooner or later the Rubicon forming the line between therapeutic and
p.000013: optimising/enhancement activities will be crossed.
p.000013:
p.000013:
p.000013:
p.000013:
p.000013: Opinion no 33 of 7 November 2005 - Final version
p.000014: 14
p.000014:
p.000014: II.3.3.6.
p.000014: When multifactor genetic characteristics are concerned, it seems hardly likely that one can achieve
p.000014: “enhancement” by negative eugenics. In this case it is indeed so that one must possess a too large number of embryos
p.000014: for the selection of embryos with the beneficial genes.
p.000014:
p.000014: II.3.3.7.
p.000014: These technical problems add to the far-reaching changes in mentality as regards ethical questions, and
p.000014: this ensures that even suggestions of a negative state eugenics programme would now no longer be accepted in
p.000014: democratic societies (See the definitions: item II, 2).
p.000014: One can, however, defend the desirability that the number of hereditary diseases or
p.000014: malformations within the population is kept as low as possible. But it is unthinkable that a person can
p.000014: force a person to a VPT or even a PGD.
p.000014: However, according to certain members of the Committee, responsible ethics do not rule out promoting the necessary
p.000014: caution and respect, the recognition of the good basis of a eugenetic attitude if this concerns cases regarded as
p.000014: serious by everyone. Such a change in mentality can lead to non-compelling collective negative eugenics.
p.000014: As regards the “enhancement” of characteristics, this is only possible if positive eugenics i.e. the application of
p.000014: genetic techniques on the human germ cell line, ever develops. As far as we know this technique has not yet been
p.000014: applied to people, and is this indeed prohibited by a great many bodies.
p.000014: This does not mean, however, that this ethical problem will not arise one day (see chapter IV).
p.000014:
p.000014: II. 4. Positive eugenics by active intervention in the human germ cell line
p.000014: This subject is covered in chapter IV.
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
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p.000014:
p.000014:
p.000014:
p.000014: Opinion no 33 of 7 November 2005 - Final version
p.000015: 15
p.000015:
p.000015: CHAPTER III. SOMATIC GENE MODIFICATION
p.000015: Somatic gene therapy concentrates on somatic cells and has, in principle and according to our current knowledge, no
p.000015: consequences for the offspring. The damaged gene is corrected by using a DNA fragment as a ‘medicine’ or ‘gene
p.000015: prosthesis’. By placing this type of gene in the cells to be corrected one hopes to cure patients suffering from a
p.000015: genetic disorder.
p.000015:
p.000015: III.1. Historical summary - Medical status quaestionis
p.000015: It was soon very clear that one of the determining factors for the success of gene therapy would be the efficiency with
p.000015: which the corrective gene would penetrate the cells to be treated. Since 1977 retroviruses have been uses as vectors.
p.000015: These vectors contain a short genome that codes for proteins of which only a part is responsible for their virulence.
p.000015: In the vectors derived from these viruses the virulence genes are suppressed and replaced by a corrective DNA fragment.
p.000015: Because of the problems incontred with these vectors (see below), other transport systems such as synthetic lipids
p.000015: called liposomes (for respiratory disorders), other viruses (adenoviruses, AAV, etc.) or “plasmids”
p.000015: (circular DNA that autonomously replicates in bacteria and is often transferable to other cells) were used.
p.000015:
p.000015: After very many tests on cells in culture and on laboratory animals the first tests for the
p.000015: introduction of a gene in a live human took place in May 1989. It was carried out in the United States by Stuart
p.000015: Rosenberg's team. It concerned patients in a terminal stage for whom no “therapeutic” effect was
...
p.000015:
p.000015: In the course of the nineties numerous somatic gene therapy tests were conducted worldwide (in an experimental way) but
p.000015: the really prominent successes were recorded by the French team of Alain Fischer and Marina Cavazzana-Calvo. 16, from
p.000015: 1999. For the first time in the world the team successfully treated “bébés-bulle” (babies growing up in a
p.000015: sterile space) who were
p.000015:
p.000015:
p.000015: 14 The therapy of Anderson and Blaese consisted mainly in the changing of the genetic instructions of the T
p.000015: lymphocytes of the patient, to then restore normal production of the ADA enzyme and in turn have the immune functions
p.000015: again work satisfactorily. A clinical improvement was established as a result of this treatment.
p.000015: 15 In this therapeutic test protocol the gene that codes for the “tumour necrosis factor” – a substance with a
p.000015: powerful antitumoral effect – was introduced in a special class of lymphocytes, the “Tumour infiltrating lymphocytes”
p.000015: (TIL).
p.000015: 16 Fischer, A., Hacein-Bey, S and Cavazzana-Calvo, M 2002, “Gene therapy of severe combined
p.000015: immunodeficiencies”, Nat. Rev. Immunol. 2,615-21.
p.000015: Hacein-Bey-Abina, S., Le Deist, F., Carlier, F., Bouneaud, C., Hue, C., De Villartay, J.P., Thrasier,
p.000015: A.J., Wulfraat, N., Sorensen, R., Dupuis-Girod, S., Fischer A. and Cavazzana-Calvo, M. 2002, “Sustained
p.000015: correction of X-linked severe combined immunodeficiency by ex vivo gene therapy”, N. Engl. J. Med. 346, 1185-93.
p.000015:
p.000015: Opinion no 33 of 7 November 2005 - Final version
p.000016: 16
p.000016:
p.000016: suffering from a genetic immunodeficiency (serious combined immunodeficiency, abbreviation SCID), characterised by a
p.000016: complete absence of the development of T and B lymphocytes. Eight of the ten patients treated by A. Fischer between
p.000016: 1999 and 2002 are now leading a normal life.
p.000016:
p.000016: In Great Britain 4 identical cases were fully successfully treated. It is obviously too early to predict
p.000016: the long term effects of these treatments. But we may also not forget that apart from gene therapy the only
p.000016: possible treatment consists of a bone marrow transplant. And that is statistically impossible in 25 % of cases,
p.000016: meaning certain death for the sufferers.
p.000016:
p.000016: III.2. Therapeutic indications and difficulties
p.000016: At present numerous protocols relating to somatic gene therapy are being tested in the United States, Europe and Asia
p.000016: to treat different diseases.
p.000016: The chosen domain of gene therapies is made up of monogenic hereditary diseases which can be continuously better
p.000016: understood thanks to the development of genome analyses.
p.000016:
p.000016: Other potential domains are also being envisaged, representing an important scientific and medical challenge
p.000016: of our time. This concerns:
p.000016:
p.000016: - cancer (by the reinforcement of the immune system or destruction of the cancer cells, etc.);
p.000016: - neurodegenerative diseases (e.g. Parkinson's disease Alzheimer's);
p.000016: - heart and vascular diseases;
p.000016: - autoimmune diseases;
p.000016: - infectious diseases;
p.000016: - other disorders for which medical treatments are not yet satisfactory.
p.000016:
...
p.000016: more problematic for other, multigene and multifactor diseases (e.g. cancer).
p.000016:
p.000016: 2. The targeting of the sick cells which must receive the gene. The targeting of white blood
p.000016: corpuscles goes relatively smoothly, for example; but targeting adult stem cells of the epithelium of the pulmonary
p.000016: system for the purposes of treatment of mucoviscidosis is still a long way from reality.
p.000016:
p.000016: 3. Control of gene expression, this means obtaining the protein in the correct quantity and for the required
p.000016: duration. For example the treatment of diabetes type 1 with insulin of which production must be modulated by the
p.000016: sugar level in the blood. One should, among other things, prevent the therapeutic effect from being
p.000016: blocked by different mechanisms such as rejection or inhibition of the production of the protein.
p.000016:
p.000016: 4. The avoidance of side-effects. The most important side-effects observed so far:
p.000016: - unsuitable immune response
p.000016: Such a case occurred during an experimental gene therapy test treatment in the US, where the
p.000016: introduction of a vector originating from an adenovirus led to an inflammation from which the
p.000016: patient died.
p.000016: - « Mutagenesis by insertion » in other words the integration of the therapeutic gene in the sick cell at a
p.000016: certain place in the chromosome, with the deregulation of the
p.000016:
p.000016:
p.000016: Opinion no 33 of 7 November 2005 - Final version
p.000017: 17
p.000017:
p.000017: introduced gene or an adjacent gene as a consequence 17..
p.000017: The ideal option would consist of one preventing this risk by substituting the deficient gene by the healthy gene that
p.000017: one introduces by “genetic cibling”, or using “homologous recombination”. Up until the present one has still not been
p.000017: able to correctly introduce a transgene in the genome of a person, but this is being widely experimented.
p.000017:
p.000017: 5. A scientific key question for the success of gene therapies concerns the mechanism to supply the gene in the
p.000017: sick cell, in other words the vector. The most effective vectors are viruses, but they have their disadvantages as we
p.000017: have mentioned earlier. Research is taking place into other transport mechanisms (for example liposomes).
p.000017:
p.000017:
p.000017: To sum up
p.000017: After 30 years of research and 14 years of clinical applications the successes of somatic gene therapy still remains
p.000017: limited, but expectations remain high.
p.000017: We are still not far enough to properly assess somatic gene therapies. These techniques are still applied on a low
p.000017: scale, and their future development requires a rigorous scientific and clinical approach. To this end, just as in all
p.000017: medical research, rules of good practice must be observed to ensure the safety and effectiveness of the clinical
p.000017: applications. In particular, the relationship between benefit and risk to the patient must be meticulously explored,
p.000017: and great caution must be exercised in this domain that intervenes in the core of life itself, with an influence on
p.000017: the identity of the person him/herself.
p.000017: Analysis of the clinical trials of A. Fischer at the Necker hospital do, however, seem to demonstrate
p.000017: that the analysis of benefit and risk to the patient amply warrant the continuation of work relating to somatic gene
p.000017: therapies.
p.000017: It is indeed because this analysis remains positive that the Agence française de sécurité sanitaire des
p.000017: produits de santé (AFSSAPS) (that had suspended all abovementioned testing in October 2002 because of the side-effects)
p.000017: has allowed the team of Dr Alain Fischer and Marina Cabazzana-Calvo to resume the studies after modifications were
p.000017: applied to the study protocol as regards the administered doses and age of the treated patients 18. On the
p.000017: request of the team of Dr. A. Fischer the new attempt was suspended because a third complication arose; the team
p.000017: wishes to change the vector prior to starting testing again19.
p.000017:
p.000017: III.3. Ethical discussion about somatic gene modification
p.000017: III.3.1. General considerations
p.000017:
p.000017: Somatic gene therapy is situated in the same area as the issue of experiments on people, implying that
p.000017: it must comply with the same ethical expectations, attitudes and requirements.
p.000017: In its opinion no. 13 of 9 July 2001 concerning experiments on people, the Advisory Committee on Bioethics evaluated
p.000017: the then current normative framework, in particular the conditions of “Good Clinical Practice”, the
p.000017: deontological rules supporting them, as well as the ethical operations on which they must be based.
p.000017: The members of the Committee are of the opinion that the ethical assessments developed in this opinion no. 13, are
p.000017: applicable to the present opinion.
p.000017:
p.000017: Somatic gene therapy also belongs in a double context of fundamental and applied research. At the current stage this
p.000017: still concerns experimental research with a therapeutic purpose.
p.000017:
p.000017: In this area the transition from the laboratory to the human individual requires particularly strict ethical rules.
p.000017: They form the basis of scientific working in an innovative sector where the applications are aimed at the
p.000017: human genome. Debates about this matter are not neutral
p.000017:
p.000017:
p.000017: 17 Professor Fischer's team came up against the latter complication in two cases and suspended clinical applications
p.000017: to analyse the causes of it.
p.000017: Hacein-Bey-Abina, S., Von Kalle, C., Schmidt, M., Le Deist, F., Wulfraat, N.,Mcintyre, E., Radford, I.,
p.000017: Villeval, J.L., Fraser, C.C., Cavazza-Calvo, M. and Fischer, A., 2003, “A serious adverse event after
p.000017: successful gene therapy for C-linked severe combined immunodeficiency ”, N. Engl. J. Med. 348, 255-6.
p.000017: 18 Decision of 9 June 2004 of the AFSSAPS
p.000017: 19 Information of Dr. A. Fischer of 12 September 2005
p.000017:
p.000017: Opinion no 33 of 7 November 2005 - Final version
p.000018: 18
p.000018:
p.000018: because they take place in the field of scientific and medical performance and are sometimes associated with conflicts
p.000018: of interest.
p.000018:
p.000018: Furthermore, there is the difficulty relating to the transition of the research into clinical application
p.000018: in a context in which the industry takes no initiatives. The industry no longer has interest in the subject because, as
p.000018: for the majority of rare diseases, technical development is too expensive proportionate to profits that very
p.000018: often remain hypothetical. Subsidisation therefore remains mainly public or charitable, and research remains
p.000018: in essence academic. Whether research into this domain takes place with public or private funds, it has the purpose
p.000018: of contributing to general welfare by the accumulation of new knowledge with the objective of alleviating human
p.000018: suffering. It therefore concerns sharing the benefits by granting access to all results, both positive and negative
p.000018: (see opinion no. 24 of 13 October 2003 of the Advisory Committee on Bioethics concerning human stem cells
p.000018: and therapeutic cloning, Chapter III., item 6).
p.000018:
p.000018: Finally gene therapy, in the light of certain failures inherent to any new domain, has resulted in unfounded statements
p.000018: by the media, companies and the scientists themselves.
p.000018: The role of the researcher in this domain is therefore fundamental. Nowadays she/he must accordingly
p.000018: continue her/his work according to rules of context and caution inherent to medical scientific research. He must
p.000018: supply objective and transparent information about the results achieved, and inform the public about both
p.000018: the probable risk and the proven risk. These understandings must be clearly distinguished because of the danger
p.000018: that this will lead to the blocking of any research and technological progress.
p.000018:
p.000018: III.3.2. Specific ethical problems
p.000018:
p.000018: Apart from formal requirements particular to all experiments on humans, one can question wether somatic
p.000018: gene therapy raises specific ethical problems.
p.000018:
p.000018: III.3.2.1.
p.000018: As regards actual gene therapy (i.e. therapeutic, so corrective) this does not appear to be the case. When we indeed
p.000018: assume that this concerns a clinical practice aimed at the curing or correcting of a poorly working organ
p.000018: or of certain aspects of an organ in a specific individual, one can compare this with an organ transplant (for example
p.000018: the correcting of a bone marrow gene versus the transplantation of bone marrow). The difference entails the lack of the
...
p.000018: One indeed considers the possibility that a gene introduced by this technique can be communicated to the germ cells,
p.000018: that in turn would have an influence on the whole germ cell line. But as we have already stated, specialists
p.000018: consider this hypothesis extremely improbable.
p.000018: An objection is also raised that one encounters with very many new techniques: the slippery slope
p.000018: argument. The development of this technique of transferring genes could lead to more easily proceeding with the
p.000018: germ track technique that is considered unacceptable. One may respond to this assertion by stating that
p.000018: the use of a technique that can alleviate human suffering should not be prohibited because of hypothetical
p.000018: dangers that one could keep under control, should they actually arise.
p.000018:
p.000018: III.3.2.3.
p.000018: When in the near future one is able to manage this technique on a large scale, one will in any case not be able to
p.000018: evade the question of establishing the area of application.
p.000018: Even with a sympathetic attitude with respect to use of the technique for generally accepted diseases in
p.000018: medicine - therapy aimed at the correcting of defective genes - it will not be simply accepted that this technique
p.000018: may be used for the enhancement of the function of specific organs.
p.000018: For example, we will assume that one has developed a somatic gene therapy that changes the composition of the blood
p.000018: (so one can cure some forms of anaemia). The idea would quickly materialise that one will start using this
p.000018: technique to change the composition of the blood of
p.000018:
p.000018:
p.000018: Opinion no 33 of 7 November 2005 - Final version
p.000019: 19
p.000019:
p.000019: certain athletes. Once the new gene had been introduced we would have a new form of “natural” doping.
p.000019:
p.000019: It goes without saying that such applications would contravene all ethical and medical arguments
p.000019: concerning doping in sport. This is not only due to reasons of fair play, but particularly because of the
p.000019: risks associated with imbalances that can originate in the body, and because of life-threatening situations that could
p.000019: be a consequence.
p.000019: Furthermore, one cannot rule out similar problems occurring in other fields. An example here may be a technique
p.000019: that can cure Alzheimer's disease, and that could possibly be used to optimise the memory or the
p.000019: intelligence of people suffering from no illnesses at all.20. Such applications raise similar ethical problems
p.000019: to those mentioned above.
p.000019:
p.000019:
p.000019: Conclusion
p.000019: A social debate is therefore desirable on the subject of somatic gene modification to take account of
p.000019: the vague nature of the frontier between pathological and non-pathological characteristics, and therefore
p.000019: the possible acceptability of genetic modification for improvement compared to therapeutic gene therapy.
p.000019: This problem also arises in the domain of germinal gene therapy that will be covered in the next chapter.
p.000019: Somatic gene therapy does not differ fundamentally from other therapeutic inventions and scientific
p.000019: approaches in the medical field.
p.000019: The ethical arguments involved with research in the field of cell therapy were explained in our opinion no. 24 of 13
p.000019: October 2003 concerning research into human stem cells and therapeutic cloning.
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
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p.000019:
p.000019:
p.000019:
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p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019: 20 Apart from Alzheimer's, many older people suffer (not all to the same extent!) from memory problems. It this a
p.000019: ‘natural’ process (aging) or a more or less pathological process? If this is a natural process, the intervention will
p.000019: have to be described as optimising (somatic gene therapy); if it is a pathological process this then concerns a
p.000019: therapeutic intervention.
p.000019:
p.000019: Opinion no 33 of 7 November 2005 - Final version
p.000020: 20
p.000020:
p.000020: CHAPTER IV. GERMINAL GENE MODIFICATION
p.000020: Germinal gene therapy concentrates on the cells of the germ line (or reproductive cells) which transfer the hereditary
p.000020: characteristics of an individual to its offspring. Germinal gene therapy consists of the correction or modification of
p.000020: a gene of the reproductive cells or of the embryo cells in the initial development stage.
p.000020:
p.000020: IV. 1. Historical summary
p.000020: Since the start of the seventies attention has been devoted to the ethical aspects of the
p.000020: biotechnological revolution that related to the genetic recombination of the human genome. This debate
p.000020: particularly raged in the United States. In Asilomar already, not all scientists gathered to discuss the
p.000020: risks of DNA recombination (particularly with respect to micro- organisms) agreed about the idea of the
p.000020: regulation of the research. During the assembly of February 1975 researchers such as Stanley Cohen (Stanford),
p.000020: Joshua Lederberg (Stanford) and James Watson (Cold Spring Harbor) set themselves against the development of Guidelines
p.000020: that could impeded research freedom. To defend their point of view, these researchers particularly put the emphasis on
p.000020: the extraordinary advantages one could expect for public health. Other scientists such as Robert Sinsheimer (Caltech),
p.000020: Erwin Chargaff and George Wald did, however, argue for shopping research into recombinant DNA. They did this not only
p.000020: because of the risk of the spreading of pathogens, but particularly because of the fear that one would not be able to
...
p.000020: the possible crossing of specific lines in the direction of achieving an artificial human person. It cannot
p.000020: be excluded that one will gradually increasingly be involved with the weakening of taboos based on the
p.000020: recombination of the DNA of human germ cells, with the lines being gradually shifted. As a result, the natural person
p.000020: would disappear unnoticed to be replaced by the genetically modified person. The possible non-therapeutic
p.000020: applications of recombinant DNA techniques could form an example of the progressive blurring of the limits
p.000020: between treating medicine (correction) and enhancement medicine. In the contemporary biomedical
p.000020: sciences, the technological and scientific knowledge at the basis of these new therapies will almost
p.000020: inevitably lead to techniques aimed at the optimisation of certain bodily functions or cognitive functions of an
p.000020: individual. The members of the American committee for bio-ethics — The President’s Council on
p.000020:
p.000020:
p.000020: 21 Sinsheimer, R., Troubled down for genetic engineering, New scientist, 68, 1975, p.55.
p.000020: 22 Here we refer to article 24 of the “Universal Declaration on the Human Genome and Human Rights”
p.000020: (General Conference of the United Nations, 9/12/1998) that “condemns practices that could detract from human dignity,
p.000020: such as activities on the germ cell line”; article 13 of the “Convention on human rights and biomedicine” of the
p.000020: Council of Europe also agreed with this standpoint.
p.000020:
p.000020: Opinion no 33 of 7 November 2005 - Final version
p.000021: 21
p.000021:
p.000021: Bioethics — found this theme sufficiently important to compile a remarkably documented report with the title Beyond
p.000021: therapy: Biotechnology and the Pursuit of Happiness23. In recent years a great deal of literature has been
p.000021: published on this subject, particularly in the Anglo-Saxon countries. It represents both extremes of the
p.000021: contemporary biopolitical spectrum. On the one hand there are the ‘bioconservatives’ who want to forbid all
p.000021: recombination of the human genome in the name of “human dignity”, out of respect for the “naturally given” or the
p.000021: sacred nature of human nature. Then there are the ‘bioprogressives’ who are open to the cautious change
p.000021: of the biological given that the person is, including his genome. 24 25 But even if people will shortly have the
p.000021: possibility of remodelling their own nature, one can ask oneself if this evolution is indeed desirable. The
p.000021: question remains open and the answers are mixed. Should one consider a person as a plastic animal that one can change
p.000021: by technological and scientific means? Or must one hold firm to the idea of an unchangeable human nature, so it would
p.000021: be sacrilege to change this? It is useful to position this debate in its current biopolitical context by raising the
p.000021: arguments of the bioconservatives and bioprogressives.
p.000021:
p.000021:
p.000021: IV.1.1. Arguments of the ‘bioprogressives’ with respect to the modification of the human genome
p.000021:
p.000021:
p.000021: Since the eighties Anglo-American philosophers were concerned with themselves with the question of the
p.000021: modification of the human genome. In 1984 the British philosopher Jonathan Glover published a book about the subject
...
p.000021: New York, 2003.
p.000021: 24 See for example the following works:
p.000021: 1.President’s Council on Bioethics (2003) Beyond therapy: Biotechnology and the pursuit of happiness. New York: Dana
p.000021: Press. 400 p.
p.000021: 2.McKibben W (2003) Enough: Staying human in an engineered age. New York: Times Books. 271 p. 3.Callahan D (2003) What
p.000021: price better health? Hazards of the research imperative. Berkeley: University of California Press. 329 p.
p.000021: 4.Elliott C (2003) Better than well: American medicine meets the American dream. New York: W. W. Norton. 357 p.
p.000021: 5.Fukuyama F (2003) Our posthuman future: Consequences of the biotechnology revolution. New York: Picador. 272 p.
p.000021: 6.Rothman S, Rothman D (2003) The pursuit of perfection: The promise and perils of medical enhancement.
p.000021: New York: Pantheon Books. 292 p.
p.000021: 7.Kass LR (2002) Life, liberty, and the defense of dignity: The challenge for bioethics. San Francisco: Encounter
p.000021: Books. 313 p.
p.000021: 8.Kristol W, Cohen E, editors (2002) The future is now: America confronts the new genetics. Lanham (Maryland): Rowman
p.000021: and Littlefield. 357 p.
p.000021: 9.Sandel S (2004 April) The case against perfection. Atlantic Monthly 51–62.
p.000021:
p.000021:
p.000025: 25
p.000025:
p.000025: 1. Stock, Gregory, Redesigning humans, Houghton Mifflin Company, 2002.
p.000025: 2. Hughes, J., Citizen Cyborg. Why democratic societies must respond to the redesigned human of the future, Westview
p.000025: Press, Cambridge (Mass.), 2004
p.000025: 26 Glover, J., What sort of people should there be?, Penguin Books, Harmondsworth, 1984, p. 13.
p.000025:
p.000025: Opinion no 33 of 7 November 2005 - Final version
p.000022: 22
p.000022:
p.000022: The strongest objection concerns the risks of genetic recombination among people. Unexpected
p.000022: results are possible, says Glover. If we create people with unanticipated characteristics we will
p.000022: have to take account of this. The possibility of a disastrous, irreversible effect has such dissuasive power that very
p.000022: many people do not want to hear of positive genetic modification. As far as Glover is concerned, the risk of
p.000022: “disasters” means we must take great caution if we proceed along the path of the genetic manipulation of
p.000022: people. Scientists must respect what Glover in 1984 already called the precautionary principle. One may only modify
p.000022: the genes in cases where there is little risk, and the advantages are big enough to justify the intervention.
p.000022: Supporting this precautionary principle allows to avoid positive genetic modification being
p.000022: definitively prohibited. This would indeed be both unrealistic and possibly even imprudent27“.
p.000022: In his work The Foundations of Bioethics, the American philosopher Tristram Engelhardt also suggests that the
p.000022: modification of the human genome is fully in conformity with procedural ethics based on principles of the
p.000022: right to self-determination and charity. The “progressive” story of Engelhardt reads as follows: “When we
p.000022: develop the possibility of working with genetic modification and not only the body cells but also the human germ
...
p.000022: for the principle of caution than for the stronger ban on all positive engineering”, What sort of people should there
p.000022: be?, Penguin Books, Harmondsworth, 1984, p. 13.
p.000022: 28 Engelhardt, T..H.. Jr, The Foundations of Bioethics, Oxford University Press, 1986, p. 377.
p.000022: 29 “We are on the brink of a new revolution of quite awesome power. The revolution in molecular and
p.000022: genetics will give us the ability to divert and control human evolution to an unprecedented extent. It will enable us
p.000022: to manufacture new life forms to order, life forms of every sort. The decision before us now is not whether or not to
p.000022: use this power but how and to what extent. It might be tempting to pretend the revolution had not happened and to try
p.000022: to go on as before, but to do so would not only be futile, it might also involve us in causing an immense amount
p.000022: of suffering. There is no safe path. If we fail to make changes to human beings, the result may simply be
p.000022: that we ensure that the future will be much worse for everyone that it need be. If we make the wrong changes the same
p.000022: may be true. What we must try to do is learn to choose responsibly, but there is no sense in which doing
p.000022: nothing is necessarily a more responsible choice than doing something” ( Harris, J., Clones, genes and
p.000022: immortality, Oxford University Press, 1998, p. 6).
p.000022: 30 Haldane, J.B.S., Daedalus or Science and the Future, London, Kegan Paul, 1925; Muller, H.J., Hors de la nuit,
p.000022: traduction française de Jean Rostand, Paris, Gallimard, 1938, p. 118 (original publication: Out of the Night, Vangard
p.000022: Press, 1935).
p.000022:
p.000022: Opinion no 33 of 7 November 2005 - Final version
p.000023: 23
p.000023:
p.000023: A number of scientists share the standpoints of the bioprogressive philosophers. James Watson, co-discoverer of the
p.000023: double helix structure of DNA, does not mince words in expressing the importance of the recombination of germ
p.000023: cell DNA. “No one has the nerve to say so, but if we could make better people because we know how we can add
p.000023: genes, why shouldn't we do this31?”. In his book Redesigning Humans, Gregory Stock, professor at the
p.000023: University of California in Los Angeles, tries to convince his readers of the inevitability of the
p.000023: genetic modification of human germ cells32. Stock is convinced that the genetic modification of the person
p.000023: is a logical consequence of progress achieved in the different sectors of the research: in vitro fertilisation, somatic
p.000023: gene therapy, the mapping of the human genome, experiments with the introduction of artificial chromosomes.
p.000023: Stock mentions a survey performed by Darryl Macer — director of the Eubios Ethics Institute in Japan — concerning the
p.000023: perception (about technology for selecting germ cells) of the general public in different countries. If one offers the
p.000023: general public the possibility of correcting genetic defects or enhancing the physical and mental capacities of their
p.000023: children, an important part of the population seems to be in favour of this: 22 % in Israel, 43 % in the United States,
p.000023: 63 % in India and 83 % in Thailand, and these figures would without doubt be even higher in Singapore, Korea or China.
...
p.000023: we had the power to manipulate human genetics to alter our biology in meaningful, predictable ways.
p.000023: Bioethicists and scientists alike worry about the consequences of coming genetic technologies, but few have thought
p.000023: through the larger implications of the wave of new developments arriving in reproductive biology. “
p.000023: 33 “This report offers less a list of many things to think about than a picture of one big thing to think
p.000023: about: the dawning age of biotechnology and the greatly augmented power it is providing us, not only for gaining
p.000023: better health but also for improving our natural capacities and pursuing our own happiness. The ambitious project for
p.000023: the mastery of nature, the project first envisioned by Francis Bacon and René Descartes in the early
p.000023: seventeenth century, is finally yielding its promised abilities to relieve man’s estate. Though our society will, as a
p.000023: matter of public practice, be required to deal with each of these techniques and possibilities as they arrive,
p.000023: piecemeal and independently of one another, we should, as a matter of public understanding, try to see what they might
p.000023: all add up to, taken together. The Council’s experience of considering these disparate subjects under this one
p.000023: big idea — beyond therapy, for the Pursuit of Happiness - and our discovery of overlapping ethical
p.000023: implications would seem to vindicate the starting assumption that led us to undertake this project in the first
p.000023: place: biotechnology beyond therapy deserves to be examined not in fragments, but as a whole” .
p.000023:
p.000023: Opinion no 33 of 7 November 2005 - Final version
p.000024: 24
p.000024:
p.000024: The report embraces four subjects: selection and modification of embryos (chapter 2 with as title “Better
p.000024: children”), enhancement of athletic performance (chapter 3: “Superior performance”), prolonging
p.000024: life (chapter 4: “Ageless bodies”), modification of emotive life and cognitive functions (chapter 5: “Happy
p.000024: souls”).
p.000024: Even if the conclusions of this document are cautious and invite moderateness, the reading of the reports of the
p.000024: different information sessions (during these sessions the members of the committee could enter into
p.000024: dialogue with scientific experts) prior to the drawing up of the document leaves little doubt about the
p.000024: unavoidable nature of the development of this non- therapeutic medicine34“.
p.000024: We note that even if the majority of the scientists interviewed by the American committee are convinced of the
p.000024: inescapable nature of the application of such optimising/enhancement biotechnological action on the person, the
p.000024: conclusions of the members of the committee are more reserved.
p.000024: The moderateness of the members of the President’s Council on Bioethics contrasts strongly with the
p.000024: ‘technophile’ enthusiasm of the supporters of transhumanism, a well-structured movement that originated
p.000024: in the United States and that argues for the biophysical transformation of the person. The
p.000024: transhumanists have the idiosyncrasy that they – sometimes with a certain naivety and simplism -develop a virulent
...
p.000024: to perform and to win. We know that they use a pharmacological approach to enhancement. We know that they’re aware of
p.000024: gene transfer technology, and we know that that technology is still immature, but it’s advancing rapidly. And we know
p.000024: that many of the studies in gene transfer technology use the genes that are of particular interest to athletes,
p.000024: erythropietin, growth hormones and other relevant genes. (…) Enormous pressures exist in athletics which make
p.000024: this kind of direction very likely, and inevitable”. Beyond Therapy: Biotechnology and the Pursuit of
p.000024: Happiness, The President’s Council on bioethics, Washington D.C. — Fifth Meeting, Thursday, July 11, 2002. Session 4:
p.000024: Enhancement 2: Potential for Genetic Enhancements in Sports
p.000024: — Dr Ted Friedmann.
p.000024: The words of Victor Conte - who was responsible for the pharmaceutical preparation of the American
p.000024: sprinters Tim Montgomery and Marion Jones - appear to confirm the psychological intuition of Friedman. Conte attributes
p.000024: the following words to Tim Montgomery, world record holder and Olympic champion in the 100 m: “ If I can win a golden
p.000024: medal thanks to performance-enhancing drugs it wouldn't matter if I should die of it.” (Quoted in the article by
p.000024: Pascal Giberné, Coup de grisou sur les stades, Le Monde, 6 December 2004).
p.000024: 35 See for example Bostrom, Nick, 2001: “Transhumanist Values” http://www.nickbostrom.com.
p.000024: 36 A good description of the different transhumanist ideas is found in the work of Hughes, J.,
p.000024: Citizen Cyborg. Why democratic societies must respond to the redesigned human of the future , Westview Press, Cambridge
p.000024: (Mass.), 2004.
p.000024:
p.000024: Opinion no 33 of 7 November 2005 - Final version
p.000025: 25
p.000025:
p.000025: IV.1.2. Arguments of the ‘bioconservatives’ with respect to the modification of the human genome
p.000025:
p.000025:
p.000025: Obviously not everyone agrees with the conviction of the bioprogressives. A thinker such as Hans Jonas would
p.000025: forbid the person from freely and creatively acting upon oneself - for example using transgenesis or cloning. Such a
p.000025: conviction is based on an essentialistic understanding of the person, a general anthropology that assumes the
p.000025: idea of the sacredness of inalienable human nature, that may not be changed by deliberate human intervention.
p.000025:
p.000025: But human nature is the fruit of a long evolution. What are the shared aspects of contemporary humans and the Homo
p.000025: habilis? The bioconservative movement defends the ontological or theological sacredness of the biological fact
p.000025: of contemporary humans.
p.000025: Even if he does not support the idea of the sacredness of nature, in a work titled The Future of Human Nature, the
p.000025: philosopher Habermas defends bioconservative standpoints tending towards those of Jonas. Habermas
p.000025: argues for the right to a non-genetically manipulated inheritance37. The purpose is to arrive at a clarification
p.000025: of the moral feelings created by genetic engineering. He indicates that in scientific literature expressions are used
p.000025: such as “Playing God” or “Partner in evolution”. What according to him is a matter of concern is that the separating
p.000025: line is blurred between who we are and the “organic equipment” we give ourselves. He wants to indicate how
...
p.000025: can be changed as a member of a species. The self-awareness of the genetically programmed person can also be
p.000025: influenced. As far as Habermas is concerned, human transgenesis is a form of reification of the genetic recombinant
p.000025: individual. When an adolescent learns that an outsider was involved with his genome before his birth and
p.000025: therefore has changed certain characteristics, his perspective of being by natural development can be
p.000025: replaced by the perspective of a synthetically made being. This invasion of the artificial in nature
p.000025: could therefore disturb the psychism of the adolescent, and as a result his choice to live in an individual manner
p.000025: can be limited.
p.000025: Two authors give a good illustration of bioconservative trends in the United States: Leon Kass and Francis Fukuyama.
p.000025: Fukuyama is a member of the President’s Council on Bioethics of which Leon Kass was the chairman. Leon Kass is a
p.000025: professor at the university of Chicago, and one of the most important opponents of the cloning of people and the
p.000025: transgenesis of humans in the United States. In his work Life, Liberty and the Defense of Dignity, he defends this
p.000025: prohibition in the name of human dignity38. Francis Fukuyama, professor at the Johns Hopkins University,
p.000025: defends ideas closely relating to those in his last book Our posthuman future39. Kass has played a central role in the
p.000025: drawing up of the conclusions of the report Beyond Therapy: Biotechnology and the Pursuit of Happiness. This
p.000025: partly explains the distinct reservations expressed with respect to non-therapeutic medicine in this text,
p.000025: despite the cautious, favourable opinion of the different scientific experts heard by the committee. In the
p.000025: conclusions of its report the President’s Council on Bioethics mentions two reasons for concern with
p.000025: respect to non- therapeutic medicine. First of all there are the traditional reasons for concern, related to the
p.000025: safety of the experiments, to their effects on health, social justice and equal accessibility to these
p.000025: improved biotechnologies. More specifically the risk is emphasised of the occurrence of a “biotechnologically improved
p.000025: aristocracy40“. As a result, the gap between the privileged and the underprivileged within American society
p.000025: could be made still wider. Biotechnological developments could also limit individual freedoms and create
p.000025: social conformism with respect to certain developments made possible by the new medicine41.
p.000025:
p.000025:
p.000025: 37 Habermas, J., The future of human nature, Polity Press, Cambridge (UK), 2001.
p.000025: 38 Kass, L.R., Life, liberty and the defense of dignity, Encounter Books, San Francisco, 2001.
p.000025: 39 Fukuyama, F., Our posthuman future, Farrar, Straus and Giroux, New York, 2002.
p.000025: 40 Beyond Therapy: Biotechnology and the Pursuit of Happiness, The President’s Council of Bioethics,
p.000025: Washington D.C., October 2003, chapter 5.
p.000025: 41 “What is freely permitted and widely used may, under certain circumstances, become practically
p.000025: mandatory. If most children are receiving memory enhancement or stimulant drugs, failure to provide
p.000025:
p.000025: Opinion no 33 of 7 November 2005 - Final version
p.000026: 26
p.000026:
p.000026: Certain members of the American committee, under the leadership of Leon Kass, are of the opinion that enhancement
p.000026: biotechnology raises more fundamental ethical questions, questions that go to the core of what it means to be human.
p.000026: These essential questions – raised by them possibly in the form of an initial feeling of aversion or
p.000026: rejection with respect to specific biotechnological applications42 — concern the question of human nature
p.000026: and human dignity. The “natural order” would therefore be threatened by the human hybris “playing God”.
p.000026: The dignity of human activity would be threatened by “non-natural” means. The preservation of our identity would also
p.000026: be threatened by attempts of self-transformation. Finally, the development of the person would be threatened by
p.000026: conformistic research into the artificial substitution of natural functions. These ontotheological arguments appeal
p.000026: to emotional factors based on an aversion to the person starting to play God while he is not in the possession of
p.000026: the wisdom of God43.
p.000026:
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p.000026: them for your child might be seen as a form of child neglect. If all the defensive linemen are on steroids, you risk
p.000026: mayhem if you go against them chemically pure. And, a point subtler still, some critics complain that, as with cosmetic
p.000026: surgery, Botox and breast implants, many of the enhancement technologies of the future will very likely be used
p.000026: in slavish adherence to certain socially defined and merely fashionable notions of ‘excellence’ or
p.000026: improvement, very likely shallow and conformist. If these fears are realized, such exercises of individual
p.000026: freedom, suitably multiplied, might compromise the freedom to be an individual” (Beyond Therapy:
p.000026: Biotechnology and the Pursuit of Happiness, The President’s Council of Bioethics, Washington D.C., October
p.000026: 2003, chapter 5).
p.000026: 42 “The subject being relatively novel, it is difficult to put this worry into words. We are in an area where initial
p.000026: revulsions are hard to translate into sound moral arguments. Many people are probably repelled by the idea of drugs
p.000026: that erase memories or that change personalities, or of interventions that enable seventy-year-olds to bear
p.000026: children or play professional sports, or, to engage in some wilder imaginings, of mechanical implants that would
p.000026: enable men to nurse infants or computer -brain hookups that would enable us to download the Oxford English
p.000026: Dictionary.” Beyond Therapy: Biotechnology and the Pursuit of Happiness, The President’s Council of Bioethics,
p.000026: Washington D.C., October 2003, chapter 5.
p.000026: 43 “The mere playing at being God, the hubris of acting with insufficient wisdom “ Beyond Therapy:
p.000026: Biotechnology and the Pursuit of Happiness, The President’s Council of Bioethics, Washington D.C., October
p.000026: 2003, chapter 5.
p.000026:
p.000026: Opinion no 33 of 7 November 2005 - Final version
p.000027: 27
p.000027:
p.000027: IV. 2. Ethical discussion within the Committee concerning germinal gene modification
p.000027: IV. 2.1. Standpoint A
p.000027:
p.000027: Some members of the Advisory Committee on Bioethics are against a principle prohibition of the techniques for
p.000027: recombination of human germinal DNA. They believe that the acceptability of DNA recombination techniques, when they
p.000027: have been fully refined, will have to be judged case by case in the light of the context and the nature of the intended
p.000027: experiment. They argue for an attitude of open and alert monitoring of the technological sciences. They believe it is
p.000027: better to avoid the everything-or-nothing reasoning of those who radically oppose the modification of the germinal
p.000027: genome in the human being. In the talk of the bioconservatives the market, individualism and liberal
p.000027: eugenics are all too often regarded as necessarily poorly or impossible to regulate. The only salutary reaction
p.000027: according to them consists of an absolute, final prohibition of positive eugenics and a list of very strict
p.000027: limitations for negative eugenics. Such non-evolutive and tight regulations will, however, inevitably lead to
p.000027: clandestine research and force the applications onto the black market. A prohibition will not be able to
p.000027: impede the development of highly-desired technologies that require no resources that the State alone can bring
p.000027: together. It would therefore be better to regulate the freedom of research and development, and
p.000027: nevertheless allow experiments for which some want an absolute and definitive prohibition under strict, public
p.000027: and reviewable procedural conditions.44
p.000027:
...
p.000027: physical or cognitive capacities would be morally inferior to “natural people”. The modified individuals
p.000027: could, on the contrary, demonstrate a wider awareness, a sharper sense of justice and superior moral
p.000027: virtues. In a future context of the application of genetic recombination of the human being, a child could ask
p.000027: itself one day why it does not have better genes - just as good genes as his friend whose parents did not
p.000027: refuse enhancement intervention (memory, intelligence, health) in the name of respect for human nature and
p.000027: the genetic lottery. Here the wish is to justify the enormous actual inequalities of the individuals at genetic level
p.000027: under the pretence that the “natural lottery” is the condition for equality in law of people. But even in highly
p.000027: developed societies actual genetic inequalities are
p.000027:
p.000027: 44 Certain arguments in this paragraph in favour of Standpoint A have been developed further:
p.000027: - by G. Hottois, « Quel rôle pour les philosophes dans les débats bioéthiques ? », Présentation et
p.000027: discussion de G. Habermas, L’avenir de la nature humaine. Vers un eugénisme libéral ?, article à paraître
p.000027: - and by J.-N. Missa, « L’homme recombiné : les enjeux éthiques et philosophiques de la modification du génome de
p.000027: l’être humain » in J.-Y. Goffi, Regard sur les technosciences, Paris, Vrin, 2006 – sous presse.
p.000027:
p.000027: Opinion no 33 of 7 November 2005 - Final version
p.000028: 28
p.000028:
p.000028: not or poorly compensated. If on the contrary we accept that genetic intervention is not by definition
p.000028: a bad thing, the real but very difficult questions arise: those of the vigilant monitoring of eugenistic
p.000028: research and eugenistic development, and particularly that of rightful availability and fair access. It is exactly the
p.000028: political-philosophical questions that we must dare to tackle, instead of merely accepting the hypothesis that genetic
p.000028: recombination of the human being can be applied in the more or less near future. The questions of political philosophy
p.000028: are for that matter now already being widely discussed in Anglo-American literature: the genetic possibilities
p.000028: are taken seriously and the conclusions are rarely of the all-or-nothing type. On the contrary, it is attempted to
p.000028: determine balanced conditions and rules without minimising the risks, advantages and disadvantages, particularly
p.000028: based on the prevailing political philosophies (those of J. Rawls and R. Nozick)45.
p.000028:
p.000028: As regards the objection that the modification of the genome of a human being would be a threat to natural
p.000028: diversity (if you could design your children à la carte, certain beauty features and intelligence characteristics
...
p.000028: chance and choice. Thanks to or because of genetic engineering, that resulting from destiny will maybe
p.000028: become a matter in our own hands. The shifting of the limits between what does and does not depend on us creates
p.000028: uncertainty and moral unease. This malaise should be rationally considered and not only emotionally. The
p.000028: excessive appeals from bioconservatives to feelings and emotions (disgust, aversion, horror, etc) in their arguments
p.000028: (e.g. Kass's “yuck factor”) can barely hide that they have problems rationally justifying their intuitions –
p.000028: intuitions considered to justify their pursuit to impose a morality with universal pretence. Well then, not only
p.000028: are these irrational intuitive opinions not universally shared, they can also encourage extremely dangerous
p.000028: discrimination criteria. It appears
p.000028:
p.000028:
p.000028: 45 See: Glover, J., What sort of people should there be?, Penguin Books, Harmondsworth, 1984; Buchanan, A., Brock,
p.000028: D.W., Daniels, N., Wikler, D., From Chance to choice: Genetics & Justice, Cambridge University press, 2000; Hughes, J.,
p.000028: Citizen Cyborg. Why democratic societies must respond to the redesigned human of the future, Westview Press, Cambridge
p.000028: (Mass.), 2004; Agar, N., Liberal Eugenics. In Defence of Human Enhancement, Blackwell, 2004; Bostrom N. , “In Defense
p.000028: of Posthuman Dignity”, in Bioethics, June 2005, vol.19, no. 3; Allhoff, F. “ Germ-Line Genetic Enhancements and
p.000028: Rawlsian Primary Goods “, in Kennedy Institute of Ethics Journal, Vol. 15, no. 1, March 2005, p.5
p.000028:
p.000028: Opinion no 33 of 7 November 2005 - Final version
p.000029: 29
p.000029:
p.000029: illusionary and hardly relevant to some members of the committee to want to impose a universally
p.000029: conservative or technophobic morality that a priori forbids any change to the human genome. They see it as
p.000029: important to resist any form of paternalism that wants to enforce a general prohibition of recombination
p.000029: techniques which could have a positive impact on the life of people. They therefore argue for the regulated acceptance
p.000029: of genetic engineering, applied to people, regulation that opens the door to new possibilities of technological DNA
p.000029: sciences, to at the same time cause as little suffering as possible and create maximum opportunities for
p.000029: development.
p.000029: The members therefore agree with the development, in the course of evolution, of human capacity to
p.000029: technically intervene on its given biology.
p.000029:
p.000029: IV. 2.2. Standpoint B
p.000029:
p.000029: Other members of the committee do not agree with the idea that the gene pool of the human species is unchangeable;
p.000029: they consequently refute the idea that the human genome is sacrosanct. In the prohibition of any intervention
p.000029: on the genome they see the hard core of a contorted archaic reaction of a religious nature.
p.000029: It is true that the gene pool in the human species changes under the pressure of circumstances. The distinction between
p.000029: genotype (formed by what is recorded in the DNA) and phenotype 46 - the physical and health situation of a living
p.000029: being at a given time in his existence, that is the result of the interaction of the genome and external factors - is
...
p.000029: specifically the therapeutic and enhancement genetic changes in the germ line; and just as little agreement is reached
p.000029: on the desirability of en masse allocating the poorly available resources to this research niche. Private
p.000029: finance has for that matter largely turned its back on gene therapy research since the emergence of
p.000029: the new eldorado of regenerative medicine. The ethical discussions on the public forum and in ‘civil society’
p.000029: would consequently better concentrate on the one hand on the question of justice as regards access to new therapeutic
p.000029: techniques – a question that befits a democratic society - and on the other hand the uncertainty concerning certain
p.000029: ethical implications of the carrying out of gene therapy in clinical research. Consequently, it
p.000029: appears indispensable to draw up legal and deontological rules to make research into germinal genetic
p.000029: modification and as appropriate its therapeutic application more
p.000029:
p.000029: 46 Etymology of phenotype: from the Greek phainomai, appear, be visible; typos, stamp, form
p.000029: 47 R. Frydman. Dieu, la médecine et l’embryon. Odile Jacob, 1999.
p.000029: 48 The term “germinal gene manipulations” camouflages the reality of “optimising/enhancement gene
p.000029: modification” which are wrongly called optimising/enhancement gene ’therapies’; wrongly, because they have no
p.000029: therapeutic characteristics, but concern the changing of the human genome in the hope of enhancement.
p.000029:
p.000029: Opinion no 33 of 7 November 2005 - Final version
p.000030: 30
p.000030:
p.000030: transparent. At present any success or the ethical implications of the form of therapy appear difficult to determine,
p.000030: so the discussions in this area are inevitably a mixture of pessimism and optimism (from a medical standpoint) and of
p.000030: reservation and the will to go forward (from an ethical standpoint).
p.000030: Without portraying the situation without thought and in a gloomy light, the members simply remind of a pragmatic
p.000030: principle of Realpolitik 49: “We are not on the verge of the danger of the general subjecting of humans to science and
p.000030: technology, but the danger of some people being manipulated by others”.50 51
p.000030:
p.000030: According to the members, the risk that somatic gene therapy moves towards germinal gene therapy is probably smaller
p.000030: than the risk that therapeutic gene therapy moves towards optimising/enhancement gene modification. The latter
p.000030: has no therapeutic purpose, but consists of the application of changes to the human genome from which improvements are
p.000030: hoped for. In a nutshell, if we were to consent to potential therapeutic progress, meaning therapeutic
p.000030: somatic gene modification, would we then inevitably also consent to genetic changes in the germ line?
p.000030: It is not out of technophobia that contemporary culture and societies increasing seem to realise
p.000030: - or even desire – that medicine expands its traditional role and fits in a medicalised technical- industrial culture,
...
p.000030: confronted with the question of if it is inevitable (casu quo desirable) that medicine exercises such a practice of
p.000030: optimisation (of the individual or of the human species), that contrasts with traditional medical ‘care’ (in which the
p.000030: accent lies on the sick individual or on public health). Some members accordingly ask themselves if it is
p.000030: desirable to tolerate physicians departing from their traditional assignment for the purpose of improving
p.000030: life itself? Or whether it is desirable that we allow physicians to penetrate our privacy and make known our
p.000030: organic secrets
p.000030: – and even genetic defects – out of concern for public health? As far as the members are concerned,
p.000030: such questions form the actual starting points for debates about modern eugenics, now knowledge and new technical
p.000030: resources open possibilities of innovative (but not yet validated) germinal activities on “life” - that has
p.000030: become a technical-scientific subject - with the purpose of making life more healthy or “improving” it.
p.000030: Providing that the conditions for gene modification obtain a deontologic and legal framework that is strict, serene and
p.000030: evolutive, according to the members it must be possible to restrain any lapses and counter the argumentative
p.000030: automatisms in the style of the ‘slippery slope’ 52. They are very aware that the impression of a downward slide
p.000030: resonates against the traditional fear of the unknown, that is here accompanied by the modern fear of what
p.000030: we could cause amongst ourselves; so - sometimes unfounded - concern is aroused among public opinion.53
p.000030:
p.000030: The same members also believe (since the present opinion is an answer to an interpellation of the Advisory Committee on
p.000030: Bioethics by the political world) that we cannot pass the question as to what place handicaps of genetic origin have in
p.000030: our society in the light of the new possibilities of genetic modification in the germ line, because an argumentation
p.000030: continuum exists between
p.000030:
p.000030: 49 In the sense of politics based on actual, practical considerations, rather than on moral or ideological
p.000030: considerations.
p.000030: 50 D. Bourg, “Bioéthique: faut-il avoir peur?”, Esprit, May 1991.
p.000030: 51 Regarding the “manipulation of some people by others” it is interesting from this perspective to return to the
p.000030: extraordinary, irresponsible lack of caution, not to mention the deliberate intent with which soldiers and the
p.000030: population were exposed to genetic risks during the development of nuclear weapons (and during the first accidents
p.000030: with civil nuclear energy in the fifties). Only in 1955, at the Geneva conference on nuclear energy, did
p.000030: physicians and biologists really make a start on research into the consequences of radiation on the living world
p.000030: and in particular on gene mutations. At the conference it was also – finally – proposed to exactly determine to which
p.000030: level of radiation a person may be exposed without the integrity of the human species being affected. (see. J. Gallini.
p.000030: Cri d’alarme des généticiens. Le Monde, 17 August 1955).
p.000030: 52 If this style of argumentation had been applied to organ transplants, the development of this therapy would have
p.000030: been impeded in the sixties.
p.000030: 53 We will add a sentence by Paul Valéry here: “Just as Progress was idolised, the cursing of progress was idolised;
p.000030: that resulted in two commonplaces.”
p.000030:
p.000030: Opinion no 33 of 7 November 2005 - Final version
p.000031: 31
p.000031:
p.000031: the two questions. The members do not see this as a false debate, but propose concisely looking at
p.000031: what happens in reality, and what the pertinent basic questions are as possible assistance in making
p.000031: well-considered decisions as regards genetic changes in the germ line that demonstrate respect for the whole
p.000031: population.
p.000031: Formerly the “old” eugenics concentrated on stimulating the birth of the strongest at the expense of the
p.000031: weakest. Now things clearly go a step further, thanks to the possibilities that technical genetic science offers to
p.000031: avoid the implantation of an embryo that is regarded as defective or as a carrier of a chromosomal
p.000031: abnormality. But the ability to create new genes and consequently new biological functions takes us yet another step
p.000031: further, that can lead to the modification of the nature of the human species.
p.000031: A simple question then arises: To actually improve the human species?
p.000031: This is an awesome question, that should be preceded by other questions that according to some are
p.000031: relevant, according to others are iconoclastic, and according to yet others archaic: Where is the limit between
p.000031: what is pathological and what is normal? What is so-called human normality? Is it wise to contemplate a norm for the
p.000031: human species? Who can assume the right to define the norm? Converting the myth of the zero-defect baby with all the
p.000031: required properties into reality, is that really progress?
p.000031: Nevertheless, another more political question arises that automatically results from the last questions and
...
p.000031: undesirable (the illness) thanks to a change in the pathogenic human
p.000031:
p.000031:
p.000031: 54 We must however add that PGD de facto reduces the need for the application of therapeutic germinal gene therapy.
p.000031: 55 What is the legal framework for PGD and prenatal screening? PGD enables the avoidance of the birth of a child with
p.000031: a genetic abnormality detected in the embryo in vitro by not implanting an embryo that is the carrier of the
p.000031: identified anomaly, and therefore prevents an abortion. The legitimacy of this practice results a
p.000031: contrario – as necessary – from article 5 of the law of 11 May 2003, that only allows the
p.000031: implantation of people with embryos on which research is conducted provided that that research brings a benefit to the
p.000031: embryo itself.
p.000031: But the law only concerns embryos in vitro and not embryos in utero. If a genetic illness is detected,
p.000031: prenatal screening enables abortion (voluntary pregnancy termination) to take place when “it is
p.000031: established that the child to be born will be suffering from an extremely serious illness that is recognised as
p.000031: incurable at the time of the diagnosis” (art. 2,4° of the law of 3 April 1990 concerning pregnancy
p.000031: termination).
p.000031:
p.000031: Opinion no 33 of 7 November 2005 - Final version
p.000032: 32
p.000032:
p.000032: behaviour.56
p.000032: Secondly the public health approach entails the anticipation of the prevention of an illness where the
p.000032: illness must be defined as a public health problem of which the causes are scientifically and/or
p.000032: technically established. This is, however, with the understanding that the conscience of scientists or technical
p.000032: experts is not equal to the public conscience. At this stage we would like to remind of the terrible responsibility of
p.000032: experts in predictive medicine with its constantly more numerous genetic tests. Prediction is indeed a good
p.000032: aspect if it serves as prevention, but it is dangerous if there is an obligation to release the prediction
p.000032: outside the private domain to map the “biological destiny” of a person to be potentially insured.
p.000032: Thirdly, an action by the authorities in answer to a public health problem (just like any social policy from an
p.000032: authority) is given shape by a redistribution of goods and services for populations defined by the
p.000032: characteristics of the problem to be solved: “who gets what and how does this happen?” And to answer the question, a
p.000032: minimum of scientific orthodoxy must be respected by requiring experimental proof that there is a causal
p.000032: connection between a risk factor and an illness (for example smoking and lung cancer, trisomy 21 and mongolism!).
p.000032: But one must also assess the impact of the health care expenses by the statistical or
p.000032: epidemiological improvement of a series of disorders. Such an evaluation of the goods and services
p.000032: subsequently makes it possible to more fairly redistribute the benefits 57 and share the costs, either (ideally) in an
p.000032: incentive form or in a more or less imperative form.
p.000032:
p.000032: Willingly or unwillingly, with regard to handicaps of genetic origin we must raise the question of whether the gradual
p.000032: transition of public health to a more imperative approach does not involve the risk that in the name of the
p.000032: public health a new eugenics originates, sometimes called “democratic eugenics”. This is “democratic eugenics”
p.000032: for which the scientific and the political world will have to assume responsibility because they will both
p.000032: have been at its basis: the scientist by discharging him/herself of the ethical aspect of his activity
p.000032: and discarding the social significance of the activity, and the politician by hiding behind the opinion
p.000032: of the scientific expert in a time of changing and increasingly segmented knowledge 58. It is exactly for this
p.000032: reason that we deliberately cite the example of the connection between smoking and lung cancer besides the example of
p.000032: the connection between trisomy 21 and mongolism. From the analogy it indeed appears how easily one could
p.000032: arrive at the application of “hygienically correct” 59 thinking to two totally different situations 60, in the
p.000032: name of the public health. We must therefore fundamentally dare to raise another question: how long will it be before
p.000032: on the one hand chronic disorders that are the consequence of individual or social irresponsibility, such
p.000032: as alcoholism or smoking, and on the other hand constitutionally determined handicaps of the genetically
p.000032: underprivileged, will be systematically mixed and deliberately thrown on the same heap (because this is
p.000032: economically cost-effective and socially desirable)?
p.000032: Let us continue with our analysis. The health approach can indeed (in the name of certain progress of
p.000032: technical science which one day may cover the possibilities of therapeutic and optimising/enhancement
p.000032: germinal line gene modification) sometimes stealthily apply a certain amount of force. Since the seventies,
p.000032: thanks to the active association of feminism and liberalism the woman has clearly obtained the right to
p.000032: dispose of her own body. That is irrefutable progress. But what is less obvious is any eugenistic excrescence
p.000032: being avoided by putting the responsibility for abortion for medical reason (for example established
p.000032: trisomy) solely with the woman!61,62 The right of the woman to dispose of her own body and in all
p.000032:
p.000032: 56 What exactly does “changing the pathogenic human behaviour in the subject that we are concerned
p.000032: with” mean? Does pathogenic human behaviour in the case of, for example, trisomy 21 consist of the refusal
p.000032: to have a 45-year-old woman tested for the risk of trisomy, or the fact of her becoming pregnant at that age? The
p.000032: implicit risk of a health approach that would assume a more or less imperative definition of pathogenic human behaviour
p.000032: is quite clear.
p.000032: 57 The question of fairer redistribution of the limited health care resources raises another question: is the public
p.000032: financing of gene therapies a real priority at present, all the more as private financing is becoming increasingly
p.000032: rare?
p.000032: 58 The politician calls upon the expert because the politician does not have the knowledge; but he
p.000032: nevertheless remains the one who decides, because he will ultimately make the choice… and must therefore
p.000032: take responsibility.
p.000032: 59 “Hygiéniquement correct”, an expression used by Pierre Ronsanvallon in analogy of “politically correct” in his
p.000032: book La Nouvelle question sociale – Repenser L’Etat-Providence, Seuil, 1995.
p.000032: 60 Two totally different situations, medical and social, behavioural and chronological and toxicological and genetic.
p.000032: 61 B. Andrieu. Médecin de son corps, PUF, Parijs, 1999.
p.000032:
p.000032: Opinion no 33 of 7 November 2005 - Final version
p.000033: 33
p.000033:
p.000033: conscience decide to end her pregnancy may obviously not be a subject for discussion. It is very fortunate that the
p.000033: woman today has the right to decide about the quality of the child to be born, and all surveys confirm
p.000033: that 90% of interviewed women would choose abortion in the case of a trisomic foetus. Here also lies the raison d'être
p.000033: for real genetic counselling 63: determining the risk that a foetus is the carrier an anomaly and informing the parents
p.000033: of this. But in this respect it is important to really allow them the freedom to make a choice in all
p.000033: conscience. Otherwise the progress of prenatal diagnosis would no longer be indisputable.
p.000033: As for “democratic eugenics” things are very different to abortion for medical reasons, because in the name of
p.000033: individual freedom the State could introduce eugenics not in that name by putting the full weight of the
p.000033: choice – and of any associated guilt – with the individual, so with the woman expecting an “abnormal” child. If
p.000033: the woman actually has legal access to the knowledge without economic discrimination because all tests and
p.000033: diagnostic and therapeutic operations have been reimbursed, she could therefore be the tool of
...
p.000033: phenotypical development. In fact we also exist outside ourselves by our mutual participation in the sign and symbol
p.000033: world of a human society. And what distinguishes human society from animal society is exactly that is based on
p.000033: language, on feeling, on cultural products and presentations and symbolic forms. Just as for the abovementioned risks
p.000033: of democratic eugenics, it somewhat bears witness to wishful
p.000033:
p.000033: 62 J.-Y. Nau. “L’éradication programmée du mongolism”, in Le Monde, 13 March 1999.
p.000033: 63 The term genetic legal adviser would in itself warrant a long digression, particularly as regards
p.000033: itsneutrality claim. According to some, the neutral genetic advisor is indeed a fiction, invented to free
p.000033: clinical genetics of a very loaded past, and to discharge the physician of pressing ethical tasks with
p.000033: respect to the couple who must ultimately take responsibility for the decision. The physician would then provide the
p.000033: couple with sterile genetic information and serve in carrying out their decision. To which he inevitably gets the
p.000033: question: “And you doctor, what would you do if you were in our situation?” That is the question that humanly
p.000033: brings an end to the inhumanity of ethical neutrality. Lexique des termes ambigus et
p.000033: controversés sur la famille, la vie et les questions éthiques. Pierre Téqui éditeur, Parijs 2005, pp.137-146.
p.000033: 64 In such a context they can barely accept that the term therapeutic abortion is simply interchangeable with the
p.000033: term voluntary pregnancy termination.
p.000033:
p.000033: Opinion no 33 of 7 November 2005 - Final version
p.000034: 34
p.000034:
p.000034: thinking to maintain that the decision about this or gene enhancement germinal gene intervention would
p.000034: exclusively be a matter for the parties involved or their family! Wishful thinking, , because
p.000034: deliberately closing the eyes to the weight of (past, current or future) conformism and socio-cultural
p.000034: pressure so some subject themselves to the prevailing models of the time, or worse, cannot withstand the
p.000034: paternalism of the design of the look of the time. Because our societies are increasingly controlled by
p.000034: the media, public opinion and social mimicry, we do not have to refer to the other imperative force, that of
p.000034: social models, which relating to modern eugenics can push forward while they all have celebrated in fashion, sport,
p.000034: dietetics or language. We may not lose sight of what powerful “pressure to conform" individuals undergo (and often
p.000034: accept). Should new “valorising” genetic standards or hypothetical care for “improvement” of the human species emerge
p.000034: tomorrow, so-called private modern eugenics 65 could also de facto assume an imperative character in the name of the
p.000034: ideology of the fortune of the day, or in the name of new public health demands.
p.000034:
p.000034: Conclusion
p.000034: The message in the standpoint of these members is particularly one of caution and solidarity.
p.000034:
p.000034: IV. 2.3. Standpoint C
p.000034:
p.000034: Without identifying with doctrinal standpoints relating to germinal gene modification, other members are
p.000034: advocates of a cautious and gradual approach that is receptive to scientific and social progress.
p.000034:
p.000034: IV. 2.3.1.
p.000034: At a scientific level they observe the growing complexity of the processes that determine the phenotype of an
p.000034: individual on the basis of his/her genotype. The “human genome project” from the nineties that was based on the
p.000034: progress of molecular genetics and the apotheosis of 20th- century genomics has also put the most important
p.000034: concept in this area up for thorough discussion: the concept of the gene that is expressed merely based on the
p.000034: DNA. In the words of F. Jacob: “In the course of time the gene has been assigned too many properties, too many
p.000034: capacities, too much power, and it appears that the role allocated to the gene must be redistributed
...
p.000034: Accordingly, an increasing number of contemporary biologists are putting the emphasis on molecular
p.000034: “cross-talk” dialogue, “check-points”, metabolic, genetic, epigenetic, postgenomic networks.
p.000034:
p.000034: Account is taken of the mechanisms responsible for the polyvalence of the genes 67 (the same gene can play a role
p.000034: with different phenotypes) 68 and with the interactivity of their products with the expression of the phenotype.
p.000034: Removal of alleles related to diseases would consequently be able to have unexpected consequences: by remedying certain
p.000034: deficiencies we could induce
p.000034:
p.000034: 65 Imperative private modern eugenics besides imperative democratic public health eugenics.
p.000034: 66 Jacob F., Introduction in Fox Keller E., “Le siècle du gène”, Gallimard, 2004
p.000034: 67 Roubertoux P.. L., “Existe-t-il des gènes du comportement?”, Odile Jacob, 2004
p.000034: 68 Account is in particular taken of:
p.000034: - the multiplicity of the alleles of a gene;
p.000034: - alternative splicing, of which the general occurrence among humans is now acknowledged;
p.000034: - the interaction between the products of the genes (the epistasy);
p.000034: - the dialogue between the nuclear genes and the mitochondrial genes. The expression of the coding
p.000034: gene of the protein amyloid that with Alzheimer deposits in the brain then diverges depending on the
p.000034: information contained in the mitochondrial genome;
p.000034: - the imprinting of the genome: the fact that the expression of a gene differs depending on if it originates
p.000034: from the father or the mother;
p.000034: - the modulation of the effects of the products of a gene by internal or external ambient factors.
p.000034:
p.000034: Opinion no 33 of 7 November 2005 - Final version
p.000035: 35
p.000035:
p.000035: others. The current development of functional genomics requires a greater sense of responsibility
p.000035: when using genetic instruments for curative or enhancement purposes. This can entail the inadequateness of eugenics
p.000035: that is based on germinal line gene modification.
p.000035:
p.000035: IV. 2.3.2.
p.000035: As regards private eugenics these members in the first instance consider it necessary to clarify what genetic changes
p.000035: in the germ line could result in. Here two types of changes are considered. The first type concerns
p.000035: the “correction” of monogenic genetic disorders such as mucoviscidosis, myopathy of Duchenne, chorea of
p.000035: Huntington. The second type concerns genetic modification of germ line cells for the purposes of “optimisation”.
p.000035:
p.000035: As far as monogenic genetic illnesses are concerned, information infers that IVF in combination with preimplantation
p.000035: diagnostics (PGD) strongly reduces the risk of the birth of a child with such a hereditary illness in
p.000035: families where the risk is real. The need for gene therapy on cells of the germ line is as a result very
p.000035: limited. Despite the possibilities of PGD, however, a small number of children will still be born with
p.000035: a hereditary illness. A mutation can indeed occur during the production of the cells of the germ line or in the
p.000035: course of the very first development stages. The children should be able to be helped with the therapeutic genetic
p.000035: modification of somatic cells (see chapter III of this opinion).
p.000035:
p.000035: Enhancement genetic modification in the germ line on its part would, according to literature, be particularly aimed
p.000035: at sporting, intellectual, cognitive, emotional, behaviour-bound and psychological performance (access to
p.000035: happiness). These parameters do not only depend on the genome, but mainly on epigenetic processes that
p.000035: function in extremely complex and particularly plastic networks. This also concerns factors loaded with
p.000035: individual and social values, with a strong cultural component.
p.000035: Assumptions about controlling physical, spiritual or behavioural performance in humans by gene manipulation
p.000035: in the germ line are currently based on pure conjecture. There is for that matter another transgenerational aspect:
p.000035: genetic modification would be forced upon certain individuals of the offspring whose nuclear and mitochondrial
p.000035: environment and epigenetic cell environment is still unknown, and that would have unpredictable consequences on the
p.000035: resulting phenotype, without account being able to be taken of the requirements and environment with which the
p.000035: offspring will be confronted.
p.000035:
p.000035: As regards collective eugenics the benefit of enhancement genetic modification in the germ line is yet more strongly
p.000035: disputable, because the consequences of such modification being carried out on an individual scale would be diluted
p.000035: during the consecutive crossings 69.
p.000035:
p.000035: 69 If, for example, we take a random sample of the Belgian population of 500,000 inhabitants within which a couple
...
p.000035: Let us assume that a phenotype is determined by gene a. The non-modified persons have 2 copies of gene a in each cell:
p.000035: one of paternal origin and one of maternal origin; we can say that the persons are a/a.
p.000035: We will call the gene that determines the desired phenotype gene B. The person receiving gene B has
p.000035: therefore obtained one gene B and one gene a; we can call the person B/a. Because gene B is dominant, the person will
p.000035: possess the required phenotype.
p.000035: The average number of children per couple in Belgium amounts to 1.2.
p.000035: Let us assume that the modification results in a selection advantage and that person B/a has 2 children. Because her
p.000035: partner is not modified (and therefore is a/a), each child of that couple has 1 chance in 2 of having received gene B.
p.000035: In other words, the parent with the required phenotype will have passed on the characteristic to half the offspring.
p.000035: Child B/a will in turn pass gene B to half the offspring.
p.000035: Grandchild B/a with the required phenotype will still only represent a quarter of the offspring of the
p.000035: progenitor.
p.000035: Gene B would therefore have to be introduced 5,000 times in generation 0 in order to have 1% of the population
p.000035: possess the required phenotype after 4 generations (5,000 out of 500,000 persons); this
p.000035:
p.000035:
p.000035: would therefore take approximately 100 years, despite the selection advantage of gene B.
p.000035:
p.000035: Opinion no 33 of 7 November 2005 - Final version
p.000036: 36
p.000036:
p.000036: According to the members, the modification of germ line cells will only have an impact on society if
p.000036: applied en masse (positive state eugenics), something that is impermissible and unrealistic.
p.000036:
p.000036: Finally, as regards the relationship between genotype and phenotype, the members emphasise the specific individuality
p.000036: of the human relating to mental epigenesis, which according to them falls under bio-ethics.
p.000036:
p.000036: Exceptions aside, human individuals , in the infinite diversity of their genomes, as regards their behaviour, are
p.000036: grosso modo tributary to physical and symbolic conditioning at very high level.
p.000036:
p.000036: Mental development, an important property linked to language, graphic image-forming and virtualised
p.000036: behaviour, is based on epigenetic foundations. These are to a large extent influenced by ambient
p.000036: factors dependent on psychosomatic perception, affective field, education and culture.
p.000036:
p.000036: In the context of recent advances, the fast and somewhat limitless development of the omnipresent media
p.000036: leads to a modelling of the spirits, bodies and desires through a virtual world of images of which the
p.000036: predominance thoroughly disturbs the perspectives of therapy or improvement.
p.000036:
p.000036: This does not concern a potential “slippery slope evolution” as mentioned relating to gene therapy, but
...
p.000036: by the technical sciences of communication.
p.000036:
p.000036: The real bio-ethical debate in its current, pluralistic, multidisciplinary and multisituational complexity,
p.000036: may certainly not escape the modern epigenetic influences that subjugate the mental image world and therefore
p.000036: form a threat to the autonomy of imagination, the freedom of thought, reasoning, belief, criticism and expression.
p.000036:
p.000036: Ethical reflection finds itself between a real transgenesis based on increasingly more complex developments, and a
p.000036: virtual transgenesis that gives the prospect of notional benefaction.
p.000036:
p.000036: An open, cautious and gradual approach that takes into account the interaction between thought, science and
p.000036: society, is a simultaneously rational and reasonable approach to the social debate on bio-ethical questions.
p.000036:
p.000036: Conclusion
p.000036: The members are not in principle against genetic modification in the germ line with a therapeutic
p.000036: purpose, even if they see this as unrealistic in view of the current development of knowledge. They nevertheless
p.000036: believe that this area does not call for priority in applied research, medicine or specific legislation.
p.000036: Fundamental research in this rapidly changing sector should be continued.
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036: Opinion no 33 of 7 November 2005 - Final version
p.000037: 37
p.000037:
p.000037: CHAPTER V. CONCLUSIONS AND RECOMMENDATIONS
p.000037:
p.000037: The Advisory Committee on Bioethics has expanded its considerations on the “gene therapy” concept by discussing all
p.000037: modifications of the genome, with both a curative purpose and enhancing purpose. The Committee wishes to
p.000037: hereby answer the request for opinion from the Senate in which reference is made to pathological and non-pathological
p.000037: genetic characteristics.
p.000037:
p.000037: As regards eugenics, the members of the Committee are of the opinion that the private selection of
p.000037: eugenics related to the use of prenatal diagnosis (PD) or pre-implantation diagnosis (PGD) is in principle acceptable,
p.000037: providing that one applies certain standards in accordance with the severity of the illness (or abnormality). The
p.000037: informed consent of the parents (or the mother) must also be obtained, and there must be an adequate framework as
p.000037: regards follow-up and the provision of information. The ethical considerations raised by these techniques
p.000037: will be discussed in a separate report.
p.000037: This report therefore concerns the therapeutic or enhancement/optimising modification of the somatic or germinal
p.000037: genome.
p.000037:
p.000037: V. 1. Therapeutic somatic gene modification
p.000037: Therapeutic gene modification has up to the present barely seen successful application. Clinical applications and
p.000037: experience in this matter are insufficient to be able to evaluate its concrete perspectives.
p.000037: The most important clinical application concerns immune-deficient children in a sterile environment. The
p.000037: treatment was recently suspended for the second time because of side effects, and is currently being further
p.000037: investigated.
p.000037: The expectations of somatic gene therapy are, however, great, so great that research is being actively continued.
p.000037:
p.000037: For ethical considerations relating to the clinical application of this technique, the Committee refers to its report
p.000037: no. 13 of 9 July 2001 concerning experiments with persons.
p.000037: The Committee is of the opinion that its ethical evaluation is also applicable to therapeutic gene therapy.
p.000037: More specifically, the Committee considers it important to ensure the safety and efficiency of each clinical
p.000037: application by a far-reaching analysis of the advantages on the one hand, and of any risks to the patient on the other.
p.000037: The principle of caution should be applied with the choice of transport vector and the introduction of
p.000037: the repair gene. One will identify any side-effects of the treatment with care.
p.000037:
p.000037: Therapeutic, somatic gene modification is not distinguishable from other therapeutic innovations or
p.000037: other scientific research in medicine. The Committee has presented ethical arguments in this respect in its
p.000037: report no. 24 of 13 October 2003 concerning human stem cells and therapeutic cloning.
p.000037:
p.000037: It is to be noted that cell therapy (stem cells) is enjoying increasing interest beside gene therapy.
p.000037:
p.000037: V. 2. Enhancement/Optimising somatic gene modification
p.000037: The Committee observes that enhancement/optimising gene modification for non-pathological properties is at present
p.000037: still only a thing of the future without scientifically proven applications. One chiefly wants to improve the physical
p.000037: or mental performance of the person. Because the genetic determinism of these characteristics is very complex,
p.000037: applications in the short term are highly improbable.
p.000037: The general ethical considerations in sub V 1 are also applicable to this situation.
p.000037: A social debate is desirable to evaluate the feasibility, specificity and opportunities of genetic modification for
p.000037: enhancement. One should also devote great attention to the social and psychological consequences of any
p.000037: applications.
p.000037:
p.000037:
p.000037:
p.000037: Opinion no 33 of 7 November 2005 - Final version
p.000038: 38
p.000038:
p.000038: V. 3. Genetic modification of germ cells
p.000038: In principle the Advisory Committee on Bioethics suggests a global, attendant and open vision in this field, and we
p.000038: invite alertness to the technical sciences and their applications.
p.000038: The Committee observes that at the current stage of research the possibilities of recombination within the germinal
p.000038: genome are largely speculative, and offer no explicit and controlled clinical applications.
p.000038: Without in principle being against scientific research on the subject, the Committee has developed three
p.000038: visions on the question of genetic modification of the germ cell line. Here one makes a clear distinction
p.000038: particularly as regards feasibility based on current scientific knowledge, as regards priorities at
p.000038: conceptual and social level, and as regards opportunities in the management of medical research and clinical
p.000038: applications.
p.000038:
p.000038: Standpoint A
p.000038:
p.000038: Certain members of the Advisory Committee on Bioethics are against a prohibition of recombinant DNA
p.000038: techniques for the human germ cell line. They are of the opinion that when these techniques have been refined, it must
p.000038: be decided case by case about the acceptability of the recombinant DNA technology, depending on the context and
p.000038: the characteristics of the intended experiments. There is no reason at all to assume in advance that at some time
p.000038: the recombination of the germinal genome among humans will not be able to take place in circumstances
p.000038: with a minimum risk.
p.000038:
p.000038: These members dispute the idea that individuals provided with improved physical and cognitive capabilities can only be
p.000038: morally inferior to “natural people”. These modified people could on the contrary have a ”broader” conscience, and
p.000038: accordingly show greater sensitivity to rightfulness and higher moral values.
p.000038:
p.000038: They are also of the opinion that if a reliable and relatively simple genetic modification technique is
p.000038: available, the consequences of not taking action are just as great as taking any action.
p.000038:
p.000038: These members are of the opinion that gene therapy will be able to contribute to the reduction of certain inequalities
p.000038: between individuals. In the context of the future application of genetic recombination among people, a child may ask
p.000038: him/herself at a certain time why he does not have better genes such as a friend whose parents have not
p.000038: refused optimisation (memory, intelligence, health) in the name of respect for “human nature” and the genetic
p.000038: lottery. These members are certain that one may not underestimate the advantages a person could gain from such
p.000038: experiments.
p.000038:
p.000038: These members are aware of the fact that the phenotype of a person is the result of interaction between the genome
p.000038: and the internal environment (cellular and somatic) and the external environment (the physical, biological
p.000038: and social-cultural environment) during a person's development. They do emphasise, however, that in an
p.000038: equivalent and stable environment an important part of interindividual variation can be attributed to genetic
p.000038: factors.
p.000038:
p.000038: These members are of the opinion that any reasoning based on all or nothing must be avoided. This reasoning gives
p.000038: support to people who are radically against the modification of the germinal genome in humans. Regulations
p.000038: that do not evolve and are rigid with an absolute and final prohibition of positive eugenics and a very restrictive
p.000038: list for negative eugenics can only push research to become clandestine and applications to join the black market. A
p.000038: prohibition would indeed not prevent technologies developing when highly desired.
p.000038: If one on the other hand accepts that genetic modification is not necessarily a bad thing, the real but very difficult
p.000038: questions arise: those concerning alertness with respect to research into the modification of the human genome
p.000038: remain, particularly where this concerns distributive justice and equal access to these possibilities. One
p.000038: must have the courage to tackle these political and philosophical questions, without immediately rejecting the
p.000038: hypothesis that in the nearish future genetic recombination of a person can take place. One would better
p.000038: regulate freedom of research and development, and under strict, public and reviewable procedures, permit
p.000038: experiments that some wish to prohibit in a general, absolute and final manner.
p.000038:
p.000038: Opinion no 33 of 7 November 2005 - Final version
p.000039: 39
p.000039:
p.000039: Standpoint B
p.000039:
p.000039: Other members are of the opinion that the question must again be raised in a context of scientific and
p.000039: operational uncertainty.
p.000039: For these members the ethical discussions about somatic or germinal gene modification should concentrate on access to
p.000039: new, therapeutic therapies, the transparency of the research and the psychosocial manipulation that may be applicable.
p.000039: These members also raise the inescapable problem of the place of a genetic disability in our society, and raise the
p.000039: concrete question as to who has the right to define what “a normal person” is. Or as a consequence of
p.000039: this, how one can actually define “improvement” when talking about genetic modification.
p.000039: They ask themselves about the opportunity to steer medicine in the direction of
p.000039: enhancement/optimising practices for non-pathological disorders, and point out the possible dangers of the
p.000039: interference of certain parties in public health relating to individual genetic profiles.
p.000039: They are of the opinion that the sector of public health should once again leave the exclusive medical-scientific
p.000039: circuit, and make its entry in the political and social arena. It is indeed naive to deny the possibility of a
p.000039: compelling form of “democratic eugenics” when science forgets its ethical and social significance and the
p.000039: political hides behind scientific expertise that is becoming increasingly segmented.
p.000039: They point out the risk of disguised eugenics by putting all responsibility for ethical choices at individual level,
p.000039: either in a context of instrumentalising the new social standards, in a context of pressure due to social-cultural
p.000039: conformism, or even in name of new regulations in public health. The human community cannot be reduced to
p.000039: genetic individualism and expression of phenotype. It is also language, feeling, exchange of symbolic presentations and
p.000039: right to differ.
p.000039:
p.000039: As far as these members are concerned, a simultaneously strict, serene and evolutive, deontological and
p.000039: legal environment for the techniques of genetic modification must enable the impeding of potential derailments. As
p.000039: regards the genetic modification of humans, these members wish to send out a message of caution.
p.000039:
p.000039: Standpoint C
p.000039:
p.000039: Other members, without wishing to associate themselves with doctrinal visions in the field of germinal gene
p.000039: modification, advocate cautious and open progressiveness with respect to scientific and social progress, but do
p.000039: acknowledge the risks and advantages involved.
p.000039: They observe that scientific progress in the field of the structure and functions of biosystems reveals the
p.000039: ever-increasing complexity of the processes which connect the genotype and the phenotype.
p.000039: At present, the result is that the effects caused by genetic modification and their impact on the different phases of
p.000039: the development of the person cannot be predicted.
p.000039: These members ask themselves questions concerning the applicability of enhancement genetic modification of which the
p.000039: parameters mainly depend on hypercomplex epigenetic processes that are related to characteristics with an
p.000039: important cultural component.
p.000039: The assumptions about the controlled and responsible modification of physical, mental or behavioural
p.000039: capacities by the genetic modification of the germ cell line are, as yet, purely hypothetical.
p.000039: Furthermore, such modifications may interfere with the autonomy of the offspring of treated people.
p.000039: Finally, these members draw attention to the epigenetic nature of important parts of the person at mental and
p.000039: behavioural level, and the impact of conditioning by the social environment.
p.000039: Hence, for reasons of pragmatic efficiency, genetic ethics must be accompanied by epigenetic ethical consideration that
p.000039: evolves in a changing context.
p.000039: They are accordingly of the opinion that as a result, one must take into account the interactions between ideas,
p.000039: science and society, and that this represents both a rational and reasonable approach from the government at
p.000039: bioethical level.
p.000039: To sum up, to these members germinal genetic modification (in an “improving” aspect) currently seems
p.000039: unreal and forms no priority, not for applied research, medicine or specific legislation. However, science
p.000039: should continue its fundamental research in this sector in rapid evolution.
p.000039:
p.000039:
p.000039: Opinion no 33 of 7 November 2005 - Final version
p.000040: 40
p.000040:
p.000040: The opinion was prepared by select commission 2001/1 - 2005 – consisting of *:
p.000040:
p.000040:
p.000040:
p.000040:
p.000040: Joint chairpersons
p.000040: E. Vermeersch
p.000040: L. Michel
p.000040:
p.000040:
p.000040:
p.000040: Joint reporters
p.000040: E. Vermeersch
p.000040: L. Michel J.-N. Missa
p.000040:
p.000040:
p.000040:
p.000040: Members
p.000040: M. Baum
p.000040: E. Eggermont
p.000040: E. Heinen
p.000040: G. Verdonk
p.000040: R. Winkler
p.000040:
p.000040:
p.000040:
p.000040: Member of the Bureau
p.000040: J.-A. Stiennon
p.000040:
p.000040:
p.000040:
p.000040:
p.000040: Member of the secretariat
p.000040: M. Bosson
p.000040: Experts interviewed (2004)
p.000040: - Alain Fischer, Supervisor of the paediatric department for immunology and haematology at the Hôpital Necker in
p.000040: Paris, professor at university Paris V, Director of the INSERM department for Research concerning the
p.000040: normal and pathological development of the immune system
p.000040: - Inge Liebaers, Geneticist, Director of the Centre of Medical Genetics of the AZ-VUB
p.000040: - Th. Velu, Professor, Doctor, Head Clinician hospital medical oncology, Erasmushospital, ULB
p.000040:
p.000040:
p.000040: Permanent experts (2005) *:
p.000040:
p.000040: - L. Cassiers (2005)
p.000040: - J. Dalcq-Depoorter (2005)
p.000040:
p.000040:
p.000040: Invited member:
p.000040: - M.-J. Abramowicz, Deputy Head Clinician of the genetics department, Erasmushospital, ULB
p.000040:
p.000040:
p.000040:
p.000040: The working documents of the select commission 2001/1-2004 and 2001/1-2005 – the question, personal
p.000040: contributions of the members, minutes of the meetings and documents consulted – are kept on file at the
p.000040: Committee’s documentation Centre where they are available to be consulted and copied.
p.000040:
p.000040: This opinion is available to be consulted at www.health.belgium.be/bioeth
p.000040:
p.000040:
p.000040:
p.000040:
p.000040: * The members of the select commission 2001/1-2004 were mentioned in the capacity of members or permanent
p.000040: experts of the select commission 2001/1-2005.
p.000040:
p.000040: Opinion no 33 of 7 November 2005 - Final version
...
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p.000005: according to which acquired properties are not heritable. It is based on the unidirectional transmission
p.000005: of the information ‘DNA -> RNA -> protein’. Since then it has nevertheless been observed that the ‘RNA to DNA’
p.000005: transmission was achieved in some cases (retrovirus). The essence of the postulate, namely the non-transmission of the
p.000005: information of the proteins to the DNA, nevertheless remains current.
p.000005: In this context the genotype, or the collection of genes materialised in the DNA (RNA with certain viruses), forms a
p.000005: genetic program. In the sixties Jacob and Monod established two classes of genes (structural genes and regulatory
p.000005: genes) that match signal sequences not translated into proteins.
p.000005: At a very early stage some authors saw that the genetic program interacted with its products. Only these
p.000005: products can interpret the programme, and the organism ultimately manages the working of the structural genes
p.000005: by activating or inhibiting the regulatory genes.
p.000005: Numerous interaction systems between genotype and phenotype have come to light.
p.000005: Today a protein product is no longer considered as the pure collinear reflection of the DNA sequences. The same DNA
p.000005: sequence can generate diverse messenger-RNA that induce various proteins with different phenotypical
p.000005: characteristics. This is because the messenger- RNA and the proteins of which messenger-RNA induces the
p.000005: synthesis undergo different modification (RNA-splicing, RNA-editing, methylation, glycosylation, etc).
p.000005: Sequences of separate messenger-RNA can join to cause the form a given protein. Interaction takes place at different
p.000005: levels:
p.000005:
p.000005:
p.000005: 1 Stanford Encyclopedia of Philosophy (2004)
p.000005:
p.000005: Opinion no 33 of 7 November 2005 - Final version
p.000006: 6
p.000006:
p.000006: - gene products which mutually interact;
p.000006: - nuclear genes that interact with mitochondrial genes (hence the divergence of the expression of
p.000006: the precursor gene of the protein amyloid that deposits in the brain with the Alzheimer illness, depending on the
p.000006: information contained in the mitochondrial genome)2 ;
p.000006: - the question of from which parent a gene comes can have an effect.
p.000006:
p.000006: A decisive role in that respect is played by regulating factors, consisting of RNA, proteins or molecules with a low
p.000006: molecular weight (which work as cofactors or inhibitors).
p.000006:
p.000006: 1.2.3. Post-genomic genetics (2000 - …)
p.000006:
p.000006: Paradoxically enough the decoding of the human genome (2001) has reinforced a paradigm change in the field of genetics.
p.000006: Except in a few cases in which the gene has an omnipotent effect, the relationship between genes and phenotypes follows
p.000006: a complicated determinism.
p.000006:
p.000006: The phenotype is regarded as tributary to the genome, the transcriptome, the proteome, the metabolom and ambient
p.000006: factors.
p.000006: Over a period of 50 years molecular genetics, that started from the reductionist dogma ‘DNA -> RNA ->
p.000006: protein -> phenotype’, has made clear that hereditariness and reproduction cannot be reduced to static
p.000006: genetics, but are evolutionary development processes. Genomics has taken a flexible and dynamic form, with a
...
p.000027: under the pretence that the “natural lottery” is the condition for equality in law of people. But even in highly
p.000027: developed societies actual genetic inequalities are
p.000027:
p.000027: 44 Certain arguments in this paragraph in favour of Standpoint A have been developed further:
p.000027: - by G. Hottois, « Quel rôle pour les philosophes dans les débats bioéthiques ? », Présentation et
p.000027: discussion de G. Habermas, L’avenir de la nature humaine. Vers un eugénisme libéral ?, article à paraître
p.000027: - and by J.-N. Missa, « L’homme recombiné : les enjeux éthiques et philosophiques de la modification du génome de
p.000027: l’être humain » in J.-Y. Goffi, Regard sur les technosciences, Paris, Vrin, 2006 – sous presse.
p.000027:
p.000027: Opinion no 33 of 7 November 2005 - Final version
p.000028: 28
p.000028:
p.000028: not or poorly compensated. If on the contrary we accept that genetic intervention is not by definition
p.000028: a bad thing, the real but very difficult questions arise: those of the vigilant monitoring of eugenistic
p.000028: research and eugenistic development, and particularly that of rightful availability and fair access. It is exactly the
p.000028: political-philosophical questions that we must dare to tackle, instead of merely accepting the hypothesis that genetic
p.000028: recombination of the human being can be applied in the more or less near future. The questions of political philosophy
p.000028: are for that matter now already being widely discussed in Anglo-American literature: the genetic possibilities
p.000028: are taken seriously and the conclusions are rarely of the all-or-nothing type. On the contrary, it is attempted to
p.000028: determine balanced conditions and rules without minimising the risks, advantages and disadvantages, particularly
p.000028: based on the prevailing political philosophies (those of J. Rawls and R. Nozick)45.
p.000028:
p.000028: As regards the objection that the modification of the genome of a human being would be a threat to natural
p.000028: diversity (if you could design your children à la carte, certain beauty features and intelligence characteristics
p.000028: would be obtaining desirable natural diversity), it can be suggested that the opposite is rather the case. The
p.000028: realm of possibilities increases with DNA recombination. The diversity of tastes and cultures is large enough to
p.000028: ensure people would not all make the same choices. Furthermore, this concerns genetic modification. The weight of the
p.000028: environment and of epigenetic modification, where it is often forgotten that they are just as biological, may
p.000028: not be underestimated. The genes form the structure of the body and the brain. The environment models and changes the
p.000028: neuronal architecture. Nature and culture both have a biological base. The conceptual contrast between genetic
p.000028: conditioning and symbolic (culture-, environment- and education-related) conditioning must therefore be seen as
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Economic / Economic/Poverty
Searching for indicator poor:
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p.000028: would be obtaining desirable natural diversity), it can be suggested that the opposite is rather the case. The
p.000028: realm of possibilities increases with DNA recombination. The diversity of tastes and cultures is large enough to
p.000028: ensure people would not all make the same choices. Furthermore, this concerns genetic modification. The weight of the
p.000028: environment and of epigenetic modification, where it is often forgotten that they are just as biological, may
p.000028: not be underestimated. The genes form the structure of the body and the brain. The environment models and changes the
p.000028: neuronal architecture. Nature and culture both have a biological base. The conceptual contrast between genetic
p.000028: conditioning and symbolic (culture-, environment- and education-related) conditioning must therefore be seen as
p.000028: a gradation difference and not as a difference in nature. Symbolic conditioning is not immaterial. It requires a
p.000028: dynamic structural change of the neuronal networks which originate due to education and interaction with the
p.000028: environment. As regards genetic conditioning, this is not necessarily irreversible. It cannot be ruled out
p.000028: that genetic engineering will be able to reverse what it has already done, or develop molecules that can allow the
p.000028: individual to choose to activate certain genes or otherwise. The genes are indeed continuously activated or deactivated
p.000028: by information from the environment. With his/her behaviour the informed individual can work on his/her
p.000028: good and poor genetic dispositions or not.
p.000028:
p.000028: Then there is the answer to the ontotheological argument that it is sacrilegious and “morally repulsive” to meddle with
p.000028: human nature. This is an emotional argument that often hides behind language that is not logical and rational,
p.000028: such as the bizarre references in this context to “fundamental human rights”, a “right to the integrity of the
p.000028: genome”, an undefined concept of “human dignity”, that forms the ideal mask for bioconservative standpoints.
p.000028: As the American philosopher Ronald Dworkin emphasised, the power of social resistance against genetic
p.000028: engineering cannot be assessed without understanding the roots of the basic objection.
p.000028: The resistance results from a distinction between what does not depend on us (our genetic patrimony that
p.000028: God – or nature – has given us) and what does depend on us. This concerns the frontier between destiny and freedom,
p.000028: chance and choice. Thanks to or because of genetic engineering, that resulting from destiny will maybe
p.000028: become a matter in our own hands. The shifting of the limits between what does and does not depend on us creates
p.000028: uncertainty and moral unease. This malaise should be rationally considered and not only emotionally. The
p.000028: excessive appeals from bioconservatives to feelings and emotions (disgust, aversion, horror, etc) in their arguments
p.000028: (e.g. Kass's “yuck factor”) can barely hide that they have problems rationally justifying their intuitions –
p.000028: intuitions considered to justify their pursuit to impose a morality with universal pretence. Well then, not only
...
p.000029: The members therefore agree with the development, in the course of evolution, of human capacity to
p.000029: technically intervene on its given biology.
p.000029:
p.000029: IV. 2.2. Standpoint B
p.000029:
p.000029: Other members of the committee do not agree with the idea that the gene pool of the human species is unchangeable;
p.000029: they consequently refute the idea that the human genome is sacrosanct. In the prohibition of any intervention
p.000029: on the genome they see the hard core of a contorted archaic reaction of a religious nature.
p.000029: It is true that the gene pool in the human species changes under the pressure of circumstances. The distinction between
p.000029: genotype (formed by what is recorded in the DNA) and phenotype 46 - the physical and health situation of a living
p.000029: being at a given time in his existence, that is the result of the interaction of the genome and external factors - is
p.000029: however useful in considering the relative importance of genes with regard to the influence of the environment.
p.000029: These members suggest a pragmatic reflection on the – at the same time healing and baleful – consequences of the fact
p.000029: that “life” due to its genotypical aspect (i.e. modification of the human genome) is today a subject of modern
p.000029: technological science.
p.000029: The members do, however, want to immediately refute the biocatastrophic visions of the risk of the prospect of the
p.000029: total changing of the gene pool of a whole population. They would simply recall that to reduce the frequency of the
p.000029: so-called poor genes from one per hundred to one per thousand, twenty-two generations would in reality have to
p.000029: be subjected to more or less imperative sterilisation measures.47 Furthermore, it is today an absolute
p.000029: fantasy to want to “improve” the human species using a selection and sterilisation policy: to impose such a policy,
p.000029: imperative measures would inevitably be required that would come up against various “obstacles” in the path
p.000029: of the principle of a democratic society. The choice of whether or not to impose such measures would therefore in
p.000029: essence not be a technical-scientific choice but a political one. As far as germinal gene manipulations are
p.000029: concerned 48 , it is hardly probably that the gene pool of a population would change more efficiently
p.000029: (faster), unless this would be industrially and directed imperiously organised in a market economy that would feed
p.000029: the new “requirement” of improvement, after it has been elaborated from scratch.
p.000029:
p.000029: In general, gene therapy as a component of biomedical research and clinical care, is still in the experimental stage,
p.000029: both in its somatic and in its germinal form. The current debates about this form of therapy, that cover both its
p.000029: ethical and medical aspects, must consequently be seen in the context of uncertainty. At present specialists are
p.000029: simply not succeeding in reaching agreement about the medical-technical feasibility of that type of therapy, more
p.000029: specifically the therapeutic and enhancement genetic changes in the germ line; and just as little agreement is reached
p.000029: on the desirability of en masse allocating the poorly available resources to this research niche. Private
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General/Other / Dependent
Searching for indicator dependent:
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p.000035: Grandchild B/a with the required phenotype will still only represent a quarter of the offspring of the
p.000035: progenitor.
p.000035: Gene B would therefore have to be introduced 5,000 times in generation 0 in order to have 1% of the population
p.000035: possess the required phenotype after 4 generations (5,000 out of 500,000 persons); this
p.000035:
p.000035:
p.000035: would therefore take approximately 100 years, despite the selection advantage of gene B.
p.000035:
p.000035: Opinion no 33 of 7 November 2005 - Final version
p.000036: 36
p.000036:
p.000036: According to the members, the modification of germ line cells will only have an impact on society if
p.000036: applied en masse (positive state eugenics), something that is impermissible and unrealistic.
p.000036:
p.000036: Finally, as regards the relationship between genotype and phenotype, the members emphasise the specific individuality
p.000036: of the human relating to mental epigenesis, which according to them falls under bio-ethics.
p.000036:
p.000036: Exceptions aside, human individuals , in the infinite diversity of their genomes, as regards their behaviour, are
p.000036: grosso modo tributary to physical and symbolic conditioning at very high level.
p.000036:
p.000036: Mental development, an important property linked to language, graphic image-forming and virtualised
p.000036: behaviour, is based on epigenetic foundations. These are to a large extent influenced by ambient
p.000036: factors dependent on psychosomatic perception, affective field, education and culture.
p.000036:
p.000036: In the context of recent advances, the fast and somewhat limitless development of the omnipresent media
p.000036: leads to a modelling of the spirits, bodies and desires through a virtual world of images of which the
p.000036: predominance thoroughly disturbs the perspectives of therapy or improvement.
p.000036:
p.000036: This does not concern a potential “slippery slope evolution” as mentioned relating to gene therapy, but
p.000036: unreducible flows of which the consequences are baleful because they impede the critical resistance of individuals.
p.000036:
p.000036: For reasons of pragmatic effectiveness, genetic ethics must accordingly go hand in hand with epigenetic ethics imposed
p.000036: by the technical sciences of communication.
p.000036:
p.000036: The real bio-ethical debate in its current, pluralistic, multidisciplinary and multisituational complexity,
p.000036: may certainly not escape the modern epigenetic influences that subjugate the mental image world and therefore
p.000036: form a threat to the autonomy of imagination, the freedom of thought, reasoning, belief, criticism and expression.
p.000036:
p.000036: Ethical reflection finds itself between a real transgenesis based on increasingly more complex developments, and a
p.000036: virtual transgenesis that gives the prospect of notional benefaction.
p.000036:
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General/Other / Developing Country
Searching for indicator thirdXworld:
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p.000012:
p.000012:
p.000012: 13 These attitudes are defended, for example, by the Fondation Jérôme Lejeune. See the intervention in the French
p.000012: Senate of President Jean-Marie Le Mené: ‘Y a-t-il un eugénisme “clean”?’ on the site:
p.000012: www.généthique.org/doss_theme/dossiers/eugénisme/eugénisme_jmlm.htm
p.000012:
p.000012: Opinion no 33 of 7 November 2005 - Final version
p.000013: 13
p.000013:
p.000013: II.3.3.3.
p.000013: Agreement has not, however, been reached about the ethical question of what a “severe” or “serious”
p.000013: disorder or deformity is. Professional associations involving clinical geneticists, reproductive technology and
p.000013: bio-ethical advisers have still not yet agreed about the drawing up of a list of disorders which are accepted as
p.000013: serious enough to justify a PGD or PD. There are indeed more than 5,000 monogenetic disorders, and nearly all of these
p.000013: disorders show signs of variable severity and clinical evolution (see H. Galjaard, a.c.).
p.000013:
p.000013: It appears normal that specialists hesitate in stating their personal opinion about the question of the severity or
p.000013: gene disease or abnormality. It is indeed the future parents who must bare the responsibility for the child
p.000013: disorder. The estimation of the severity of this disorder is determined by the cultural and social environment
p.000013: (the geographic factor - such as e.g. in the Third World - or financial resources), by their family history (other
p.000013: disabled children), by their religious convictions and by their conviction about what a valuable life is for themselves
p.000013: and for their unborn child.
p.000013:
p.000013: If one takes account of the fact that in very many legal systems VPT is allowed for psychosocial reasons (which are
p.000013: difficult to define), it would be somewhat paradoxical that disorders, abnormalities or malformations
p.000013: originating from the medical domain would not be accepted as a justification for VPT or PGD.
p.000013:
p.000013: Certain members of the Committee therefore believe that the decision about the justification of the use of these
p.000013: techniques in essence must first be taken by the parents concerned (or by the mother), after of course they have
p.000013: received correct and complete information beforehand about the disorder, including the consequences in the medium and
p.000013: longer term.
p.000013:
p.000013: II.3.3.4.
p.000013: But even if one accepts to follow the decision of the parents as regards actions of a negative private eugenistic
p.000013: nature with disorders or malformations that are medically acknowledged as pathology, problems still exist.
p.000013: If on the one hand some disorders occur at birth or straight afterwards, there are on the other hand also disorders
...
General/Other / Impaired Autonomy
Searching for indicator autonomy:
(return to top)
p.000011: have to be drawn up.
p.000011:
p.000011: II.3.2. Private negative eugenics: current situation
p.000011:
p.000011: Private eugenics is a form of eugenics connected to the use of prenatal identification techniques and
p.000011: pre-implantation diagnosis. As a result, one can avoid couples having children carrying a hereditary illness or
p.000011: disability11.
p.000011:
p.000011: Current biological and medical events (medically assisted reproduction, prenatal and pre- implantation
p.000011: diagnostics, genetic treatment attempts, programme for the mapping of and sequence-determining of the human
p.000011: genome) again brought the question of eugenics to the foreground. The idea of “eugenics” itself is again raising
p.000011: concern among some.
p.000011:
p.000011: But eugenics related to progress achieved in genetics and in new techniques of medically assisted
p.000011: reproduction is not of the same nature as state eugenics as developed in pre-war Germany and in the United
p.000011: States, and that is still currently being applied in China. We may therefore not use the same terminology for
p.000011: practices with such a totally different context and purposes. State eugenics has the purpose of enforcing “the
p.000011: enhancement of the human species”.12, and that is not the case with private eugenics. Because of the emotional
p.000011: charge of the term “eugenics”, some think that one can better not use this terminology in a situation that concerns
p.000011: the freedom and autonomy of the parents. Other people believe that instead of avoiding the term
p.000011: eugenics, one must rather draw attention to the fundamental distinction between “state eugenics” and its
p.000011: derivatives on the one hand, and on the other hand contemporary techniques for diagnosis and medically
p.000011: assisted reproduction, that one can callprivate eugenics. These are indeed terms concerning radically different
p.000011: circumstances and purposes
p.000011:
p.000011: Today biotechnology is developing in the context of respect for the autonomy of the individual. The techniques used in
p.000011: negative eugenics do not change the human species. They are simply the orientation of the future of a number of
p.000011: individuals. “New eugenics” is related to technical scientific advances in genetics and medically assisted
p.000011: reproduction. It respects the individual, the free choice of the parents who by resorting to these techniques want
p.000011: children and wish to keep the risk of disabilities with the birth as minimal as possible. Genetic
p.000011: counselling – preferably before the pregnancy - consists of determining the risk of having a child with
p.000011: a specific illness, and informing the parents about the possibility of prenatal diagnosis (PD) or
p.000011:
p.000011: 9 Sermon, K., Moutou, C., Harper, J. et al. (2004), “ESHRE PGD Consortium data collection IV: May -
p.000011: December 2001” in Human Reproduction 20 (1): 19-34.
p.000011: 10 For this technique: see G. Pennings, R. Schots and I. Liebaers, Ethical considerations on preimplantation genetic
p.000011: diagnosis for HLA typing to match a future child as a donor of haematopoietic stem cells to a sibling in Human
p.000011: Reproduction, Vol.17, nr. 3, 534-538, 2002.
p.000011: 11 Carol, Anne, « Histoire de l’eugénisme en France », Parijs, Seuil, 1995; Duster, T., « Retour à
...
p.000036:
p.000036: Mental development, an important property linked to language, graphic image-forming and virtualised
p.000036: behaviour, is based on epigenetic foundations. These are to a large extent influenced by ambient
p.000036: factors dependent on psychosomatic perception, affective field, education and culture.
p.000036:
p.000036: In the context of recent advances, the fast and somewhat limitless development of the omnipresent media
p.000036: leads to a modelling of the spirits, bodies and desires through a virtual world of images of which the
p.000036: predominance thoroughly disturbs the perspectives of therapy or improvement.
p.000036:
p.000036: This does not concern a potential “slippery slope evolution” as mentioned relating to gene therapy, but
p.000036: unreducible flows of which the consequences are baleful because they impede the critical resistance of individuals.
p.000036:
p.000036: For reasons of pragmatic effectiveness, genetic ethics must accordingly go hand in hand with epigenetic ethics imposed
p.000036: by the technical sciences of communication.
p.000036:
p.000036: The real bio-ethical debate in its current, pluralistic, multidisciplinary and multisituational complexity,
p.000036: may certainly not escape the modern epigenetic influences that subjugate the mental image world and therefore
p.000036: form a threat to the autonomy of imagination, the freedom of thought, reasoning, belief, criticism and expression.
p.000036:
p.000036: Ethical reflection finds itself between a real transgenesis based on increasingly more complex developments, and a
p.000036: virtual transgenesis that gives the prospect of notional benefaction.
p.000036:
p.000036: An open, cautious and gradual approach that takes into account the interaction between thought, science and
p.000036: society, is a simultaneously rational and reasonable approach to the social debate on bio-ethical questions.
p.000036:
p.000036: Conclusion
p.000036: The members are not in principle against genetic modification in the germ line with a therapeutic
p.000036: purpose, even if they see this as unrealistic in view of the current development of knowledge. They nevertheless
p.000036: believe that this area does not call for priority in applied research, medicine or specific legislation.
p.000036: Fundamental research in this rapidly changing sector should be continued.
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036: Opinion no 33 of 7 November 2005 - Final version
p.000037: 37
p.000037:
p.000037: CHAPTER V. CONCLUSIONS AND RECOMMENDATIONS
p.000037:
p.000037: The Advisory Committee on Bioethics has expanded its considerations on the “gene therapy” concept by discussing all
p.000037: modifications of the genome, with both a curative purpose and enhancing purpose. The Committee wishes to
...
p.000039: right to differ.
p.000039:
p.000039: As far as these members are concerned, a simultaneously strict, serene and evolutive, deontological and
p.000039: legal environment for the techniques of genetic modification must enable the impeding of potential derailments. As
p.000039: regards the genetic modification of humans, these members wish to send out a message of caution.
p.000039:
p.000039: Standpoint C
p.000039:
p.000039: Other members, without wishing to associate themselves with doctrinal visions in the field of germinal gene
p.000039: modification, advocate cautious and open progressiveness with respect to scientific and social progress, but do
p.000039: acknowledge the risks and advantages involved.
p.000039: They observe that scientific progress in the field of the structure and functions of biosystems reveals the
p.000039: ever-increasing complexity of the processes which connect the genotype and the phenotype.
p.000039: At present, the result is that the effects caused by genetic modification and their impact on the different phases of
p.000039: the development of the person cannot be predicted.
p.000039: These members ask themselves questions concerning the applicability of enhancement genetic modification of which the
p.000039: parameters mainly depend on hypercomplex epigenetic processes that are related to characteristics with an
p.000039: important cultural component.
p.000039: The assumptions about the controlled and responsible modification of physical, mental or behavioural
p.000039: capacities by the genetic modification of the germ cell line are, as yet, purely hypothetical.
p.000039: Furthermore, such modifications may interfere with the autonomy of the offspring of treated people.
p.000039: Finally, these members draw attention to the epigenetic nature of important parts of the person at mental and
p.000039: behavioural level, and the impact of conditioning by the social environment.
p.000039: Hence, for reasons of pragmatic efficiency, genetic ethics must be accompanied by epigenetic ethical consideration that
p.000039: evolves in a changing context.
p.000039: They are accordingly of the opinion that as a result, one must take into account the interactions between ideas,
p.000039: science and society, and that this represents both a rational and reasonable approach from the government at
p.000039: bioethical level.
p.000039: To sum up, to these members germinal genetic modification (in an “improving” aspect) currently seems
p.000039: unreal and forms no priority, not for applied research, medicine or specific legislation. However, science
p.000039: should continue its fundamental research in this sector in rapid evolution.
p.000039:
p.000039:
p.000039: Opinion no 33 of 7 November 2005 - Final version
p.000040: 40
p.000040:
p.000040: The opinion was prepared by select commission 2001/1 - 2005 – consisting of *:
p.000040:
p.000040:
p.000040:
p.000040:
p.000040: Joint chairpersons
p.000040: E. Vermeersch
p.000040: L. Michel
p.000040:
p.000040:
p.000040:
p.000040: Joint reporters
p.000040: E. Vermeersch
p.000040: L. Michel J.-N. Missa
p.000040:
p.000040:
p.000040:
p.000040: Members
p.000040: M. Baum
p.000040: E. Eggermont
p.000040: E. Heinen
p.000040: G. Verdonk
p.000040: R. Winkler
p.000040:
p.000040:
p.000040:
p.000040: Member of the Bureau
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p.000023: indeed have already been tested on animals and some of them also on people) that indicate that in the more or less near
p.000023: future, techniques will be developed that go further than ordinary therapy: selection or the genetic
p.000023: modification of embryos, the enhancement of certain cognitive capacities of children and adults (attention,
p.000023: memory), enabling athletes to perform better (mainly by activities on the genome of the muscle cells), the retarding of
p.000023: aging and the lengthening of the working life, changing of the mood. Even if the clinical application of certain
p.000023: technologies still appears uncertain or distant, the members of the American committee still believe that
p.000023: it is important to today study the potential effects of this performance-related biotechnology on medicine and
p.000023: the community33.
p.000023:
p.000023:
p.000023:
p.000023: 31 Watson, J.D., DNA, The secret of life, Knopf, New York, 2003.
p.000023: 32 Stock, Gregory, Redesigning humans, Houghton Mifflin Company, 2002. “We know that Homo sapiens is not the final
p.000023: word in primate evolution, but few have yet grasped that we are on the cusp of profound biological change, poised to
p.000023: transcend our current form and character on a journey of new imagination”. “At first glance, the very notion that we
p.000023: might become more than human seems preposterous. After all, we are still biologically identical in virtually
p.000023: every respect to our cave dwelling ancestors. But this lack of change is deceptive. Never before have
p.000023: we had the power to manipulate human genetics to alter our biology in meaningful, predictable ways.
p.000023: Bioethicists and scientists alike worry about the consequences of coming genetic technologies, but few have thought
p.000023: through the larger implications of the wave of new developments arriving in reproductive biology. “
p.000023: 33 “This report offers less a list of many things to think about than a picture of one big thing to think
p.000023: about: the dawning age of biotechnology and the greatly augmented power it is providing us, not only for gaining
p.000023: better health but also for improving our natural capacities and pursuing our own happiness. The ambitious project for
p.000023: the mastery of nature, the project first envisioned by Francis Bacon and René Descartes in the early
p.000023: seventeenth century, is finally yielding its promised abilities to relieve man’s estate. Though our society will, as a
p.000023: matter of public practice, be required to deal with each of these techniques and possibilities as they arrive,
p.000023: piecemeal and independently of one another, we should, as a matter of public understanding, try to see what they might
p.000023: all add up to, taken together. The Council’s experience of considering these disparate subjects under this one
p.000023: big idea — beyond therapy, for the Pursuit of Happiness - and our discovery of overlapping ethical
p.000023: implications would seem to vindicate the starting assumption that led us to undertake this project in the first
p.000023: place: biotechnology beyond therapy deserves to be examined not in fragments, but as a whole” .
p.000023:
p.000023: Opinion no 33 of 7 November 2005 - Final version
p.000024: 24
p.000024:
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p.000024: 36 A good description of the different transhumanist ideas is found in the work of Hughes, J.,
p.000024: Citizen Cyborg. Why democratic societies must respond to the redesigned human of the future , Westview Press, Cambridge
p.000024: (Mass.), 2004.
p.000024:
p.000024: Opinion no 33 of 7 November 2005 - Final version
p.000025: 25
p.000025:
p.000025: IV.1.2. Arguments of the ‘bioconservatives’ with respect to the modification of the human genome
p.000025:
p.000025:
p.000025: Obviously not everyone agrees with the conviction of the bioprogressives. A thinker such as Hans Jonas would
p.000025: forbid the person from freely and creatively acting upon oneself - for example using transgenesis or cloning. Such a
p.000025: conviction is based on an essentialistic understanding of the person, a general anthropology that assumes the
p.000025: idea of the sacredness of inalienable human nature, that may not be changed by deliberate human intervention.
p.000025:
p.000025: But human nature is the fruit of a long evolution. What are the shared aspects of contemporary humans and the Homo
p.000025: habilis? The bioconservative movement defends the ontological or theological sacredness of the biological fact
p.000025: of contemporary humans.
p.000025: Even if he does not support the idea of the sacredness of nature, in a work titled The Future of Human Nature, the
p.000025: philosopher Habermas defends bioconservative standpoints tending towards those of Jonas. Habermas
p.000025: argues for the right to a non-genetically manipulated inheritance37. The purpose is to arrive at a clarification
p.000025: of the moral feelings created by genetic engineering. He indicates that in scientific literature expressions are used
p.000025: such as “Playing God” or “Partner in evolution”. What according to him is a matter of concern is that the separating
p.000025: line is blurred between who we are and the “organic equipment” we give ourselves. He wants to indicate how
p.000025: biotechnology blurs the normal distinction between what is made (the made, the artificial, the soulless machine) and
p.000025: what develops (the natural, the living). The disappearance of the distinction between the natural and the artificial,
p.000025: what will happen in life to the person with a changed genome before birth, can ensure that our ethical understanding
p.000025: can be changed as a member of a species. The self-awareness of the genetically programmed person can also be
p.000025: influenced. As far as Habermas is concerned, human transgenesis is a form of reification of the genetic recombinant
p.000025: individual. When an adolescent learns that an outsider was involved with his genome before his birth and
p.000025: therefore has changed certain characteristics, his perspective of being by natural development can be
p.000025: replaced by the perspective of a synthetically made being. This invasion of the artificial in nature
p.000025: could therefore disturb the psychism of the adolescent, and as a result his choice to live in an individual manner
p.000025: can be limited.
p.000025: Two authors give a good illustration of bioconservative trends in the United States: Leon Kass and Francis Fukuyama.
p.000025: Fukuyama is a member of the President’s Council on Bioethics of which Leon Kass was the chairman. Leon Kass is a
...
p.000029: techniques – a question that befits a democratic society - and on the other hand the uncertainty concerning certain
p.000029: ethical implications of the carrying out of gene therapy in clinical research. Consequently, it
p.000029: appears indispensable to draw up legal and deontological rules to make research into germinal genetic
p.000029: modification and as appropriate its therapeutic application more
p.000029:
p.000029: 46 Etymology of phenotype: from the Greek phainomai, appear, be visible; typos, stamp, form
p.000029: 47 R. Frydman. Dieu, la médecine et l’embryon. Odile Jacob, 1999.
p.000029: 48 The term “germinal gene manipulations” camouflages the reality of “optimising/enhancement gene
p.000029: modification” which are wrongly called optimising/enhancement gene ’therapies’; wrongly, because they have no
p.000029: therapeutic characteristics, but concern the changing of the human genome in the hope of enhancement.
p.000029:
p.000029: Opinion no 33 of 7 November 2005 - Final version
p.000030: 30
p.000030:
p.000030: transparent. At present any success or the ethical implications of the form of therapy appear difficult to determine,
p.000030: so the discussions in this area are inevitably a mixture of pessimism and optimism (from a medical standpoint) and of
p.000030: reservation and the will to go forward (from an ethical standpoint).
p.000030: Without portraying the situation without thought and in a gloomy light, the members simply remind of a pragmatic
p.000030: principle of Realpolitik 49: “We are not on the verge of the danger of the general subjecting of humans to science and
p.000030: technology, but the danger of some people being manipulated by others”.50 51
p.000030:
p.000030: According to the members, the risk that somatic gene therapy moves towards germinal gene therapy is probably smaller
p.000030: than the risk that therapeutic gene therapy moves towards optimising/enhancement gene modification. The latter
p.000030: has no therapeutic purpose, but consists of the application of changes to the human genome from which improvements are
p.000030: hoped for. In a nutshell, if we were to consent to potential therapeutic progress, meaning therapeutic
p.000030: somatic gene modification, would we then inevitably also consent to genetic changes in the germ line?
p.000030: It is not out of technophobia that contemporary culture and societies increasing seem to realise
p.000030: - or even desire – that medicine expands its traditional role and fits in a medicalised technical- industrial culture,
p.000030: that aims for the measured ‘improvement’ of physical and biological welfare in the name of an individualised consumer
p.000030: technology. Consequently, the lines between pure therapeutic or curative medicine and the so-called enhancing
p.000030: modification (‘enhancement technology’) fade – and that also applies a fortiori to the (still virtual) domain of
p.000030: germinal gene modification. Society in the broad sense – and not only the medical world – is therefore
p.000030: confronted with the question of if it is inevitable (casu quo desirable) that medicine exercises such a practice of
p.000030: optimisation (of the individual or of the human species), that contrasts with traditional medical ‘care’ (in which the
...
General/Other / Relationship to Authority
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p.000031: prenatal screening enables abortion (voluntary pregnancy termination) to take place when “it is
p.000031: established that the child to be born will be suffering from an extremely serious illness that is recognised as
p.000031: incurable at the time of the diagnosis” (art. 2,4° of the law of 3 April 1990 concerning pregnancy
p.000031: termination).
p.000031:
p.000031: Opinion no 33 of 7 November 2005 - Final version
p.000032: 32
p.000032:
p.000032: behaviour.56
p.000032: Secondly the public health approach entails the anticipation of the prevention of an illness where the
p.000032: illness must be defined as a public health problem of which the causes are scientifically and/or
p.000032: technically established. This is, however, with the understanding that the conscience of scientists or technical
p.000032: experts is not equal to the public conscience. At this stage we would like to remind of the terrible responsibility of
p.000032: experts in predictive medicine with its constantly more numerous genetic tests. Prediction is indeed a good
p.000032: aspect if it serves as prevention, but it is dangerous if there is an obligation to release the prediction
p.000032: outside the private domain to map the “biological destiny” of a person to be potentially insured.
p.000032: Thirdly, an action by the authorities in answer to a public health problem (just like any social policy from an
p.000032: authority) is given shape by a redistribution of goods and services for populations defined by the
p.000032: characteristics of the problem to be solved: “who gets what and how does this happen?” And to answer the question, a
p.000032: minimum of scientific orthodoxy must be respected by requiring experimental proof that there is a causal
p.000032: connection between a risk factor and an illness (for example smoking and lung cancer, trisomy 21 and mongolism!).
p.000032: But one must also assess the impact of the health care expenses by the statistical or
p.000032: epidemiological improvement of a series of disorders. Such an evaluation of the goods and services
p.000032: subsequently makes it possible to more fairly redistribute the benefits 57 and share the costs, either (ideally) in an
p.000032: incentive form or in a more or less imperative form.
p.000032:
p.000032: Willingly or unwillingly, with regard to handicaps of genetic origin we must raise the question of whether the gradual
p.000032: transition of public health to a more imperative approach does not involve the risk that in the name of the
p.000032: public health a new eugenics originates, sometimes called “democratic eugenics”. This is “democratic eugenics”
p.000032: for which the scientific and the political world will have to assume responsibility because they will both
p.000032: have been at its basis: the scientist by discharging him/herself of the ethical aspect of his activity
...
Orphaned Trigger Words
p.000020: regulation of the research. During the assembly of February 1975 researchers such as Stanley Cohen (Stanford),
p.000020: Joshua Lederberg (Stanford) and James Watson (Cold Spring Harbor) set themselves against the development of Guidelines
p.000020: that could impeded research freedom. To defend their point of view, these researchers particularly put the emphasis on
p.000020: the extraordinary advantages one could expect for public health. Other scientists such as Robert Sinsheimer (Caltech),
p.000020: Erwin Chargaff and George Wald did, however, argue for shopping research into recombinant DNA. They did this not only
p.000020: because of the risk of the spreading of pathogens, but particularly because of the fear that one would not be able to
p.000020: control the techniques with which people could change their own nature: “Can we really forecast the
p.000020: consequence for mankind, for human society, of any major change in the human gene pool? The more I have reflected on
p.000020: this the more I have come to doubt it. I do not refer here to the alleviation of individual genetic defects but more
p.000020: broadly to the genetic redefinition of man 21 “.
p.000020: Up to now one still only uses genetic therapy on body somatic cells . But in the future one may not fully exclude the
p.000020: possibility of genetic therapy being applied on germ cells. The intention is to accordingly treat certain monogenetic
p.000020: disorders.
p.000020: Nevertheless, most ethical bodies have declared themselves in favour of a prohibition of germ cell therapy.22. We
p.000020: should, however, draw attention to the differences in the approach to this prohibition. In a number of texts of
p.000020: committees for bio-ethics and in a number of legislative texts, this prohibition is set as definitive,
p.000020: and the act is represented as intrinsically unacceptable. In other texts one avoids bombastic
p.000020: declarations about ethics and “human dignity”, and the emphasis is particularly placed on the fact that our current
p.000020: knowledge is still insufficient to be able to take account of the potential effects of these experiments. Based on such
p.000020: an attitude one can now already start the discussion about the basic problems arising from the possible
p.000020: developments of this recombinant biotechnology.
p.000020: Indeed, thanks to improvement of recombinant DNA techniques (homologous recombination, artificial chromosomes,
p.000020: etc.), one day it may be possible to make transgenic people using the application of changes to the germ cells
p.000020: (or in embryonic cells at the initial stage of their development). One should then be particularly alert to
p.000020: the possible crossing of specific lines in the direction of achieving an artificial human person. It cannot
p.000020: be excluded that one will gradually increasingly be involved with the weakening of taboos based on the
p.000020: recombination of the DNA of human germ cells, with the lines being gradually shifted. As a result, the natural person
p.000020: would disappear unnoticed to be replaced by the genetically modified person. The possible non-therapeutic
p.000020: applications of recombinant DNA techniques could form an example of the progressive blurring of the limits
p.000020: between treating medicine (correction) and enhancement medicine. In the contemporary biomedical
...
p.000024: ‘technophile’ enthusiasm of the supporters of transhumanism, a well-structured movement that originated
p.000024: in the United States and that argues for the biophysical transformation of the person. The
p.000024: transhumanists have the idiosyncrasy that they – sometimes with a certain naivety and simplism -develop a virulent
p.000024: technophile enthusiasm. Their purpose is to exceed the current form of the person. They want to leave the
p.000024: contemporary medical paradigm behind them, that is based on a distinction between therapeutic and non-therapeutic
p.000024: changes to the human body. The most widely argued defence of transhumanism is probably found in the work of the
p.000024: Oxford philosopher Nick Bostrom35. The transhumanist objective is the use of biotechnology in a rational way to be
p.000024: able to prolong life without one suffering from certain disorders, and the enhancement of the memory and other
p.000024: intellectual capacities. They also want to refine our emotional experience, make us happier, and in general give us
p.000024: greater control of our own life.36.
p.000024:
p.000024:
p.000024:
p.000024:
p.000024:
p.000024: Beyond Therapy: Biotechnology and the Pursuit of Happiness, The President’s Council of Bioethics,
p.000024: Washington D.C., October 2003, chapter 6.
p.000024: 34 Accordingly, Ted Friedman, professor at the University of California in San Diego and chairman of the Recombinant
p.000024: DNA Advisory Committee, invited the examination of the possibilities of the genetic improvement of sporting
p.000024: performance. He summed up the elements that caused him to think that such a genetic approach is inevitable. “Why does
p.000024: one think that genetic approaches to athletic enhancement are inevitable? First of all, athletes are risk-takers.
p.000024: They’re young healthy athletes who think nothing is ever going to happen to them. And they are known to accept all
p.000024: sorts of risks. Polls have been taken of young athletes asking if it were to guarantee you a gold medal at the next
p.000024: Olympics at the risk of losing 20 years of your life would you do it? And universally, they say yes. They will take
p.000024: that risk for the reward of gold medals. There are enormous financial pressures and national pressures to push athletes
p.000024: to perform and to win. We know that they use a pharmacological approach to enhancement. We know that they’re aware of
p.000024: gene transfer technology, and we know that that technology is still immature, but it’s advancing rapidly. And we know
p.000024: that many of the studies in gene transfer technology use the genes that are of particular interest to athletes,
p.000024: erythropietin, growth hormones and other relevant genes. (…) Enormous pressures exist in athletics which make
p.000024: this kind of direction very likely, and inevitable”. Beyond Therapy: Biotechnology and the Pursuit of
p.000024: Happiness, The President’s Council on bioethics, Washington D.C. — Fifth Meeting, Thursday, July 11, 2002. Session 4:
p.000024: Enhancement 2: Potential for Genetic Enhancements in Sports
p.000024: — Dr Ted Friedmann.
p.000024: The words of Victor Conte - who was responsible for the pharmaceutical preparation of the American
p.000024: sprinters Tim Montgomery and Marion Jones - appear to confirm the psychological intuition of Friedman. Conte attributes
p.000024: the following words to Tim Montgomery, world record holder and Olympic champion in the 100 m: “ If I can win a golden
p.000024: medal thanks to performance-enhancing drugs it wouldn't matter if I should die of it.” (Quoted in the article by
p.000024: Pascal Giberné, Coup de grisou sur les stades, Le Monde, 6 December 2004).
p.000024: 35 See for example Bostrom, Nick, 2001: “Transhumanist Values” http://www.nickbostrom.com.
p.000024: 36 A good description of the different transhumanist ideas is found in the work of Hughes, J.,
p.000024: Citizen Cyborg. Why democratic societies must respond to the redesigned human of the future , Westview Press, Cambridge
p.000024: (Mass.), 2004.
p.000024:
...
Appendix
Indicator List
| Indicator | Vulnerability |
|---|
| access | Access to Social Goods |
| age | Age |
| alcoholism | alcoholism |
| authority | Relationship to Authority |
| autonomy | Impaired Autonomy |
| belief | Religion |
| child | Child |
| children | Child |
| cognitive | Cognitive Impairment |
| conviction | Religion |
| dependent | Dependent |
| disability | Mentally Disabled |
| disabled | Mentally Disabled |
| drug | Drug Usage |
| education | education |
| embryo | embryo |
| family | Motherhood/Family |
| foetus | Fetus/Neonate |
| foetuses | Fetus/Neonate |
| gender | gender |
| ill | ill |
| illness | Physically Disabled |
| influence | Drug Usage |
| language | Linguistic Proficiency |
| liberty | Incarcerated |
| manipulate | Manipulable |
| manipulated | Manipulable |
| mentally | Mentally Disabled |
| opinion | philosophical differences/differences of opinion |
| parent | parents |
| parents | parents |
| philosophy | philosophical differences/differences of opinion |
| political | political affiliation |
| poor | Economic/Poverty |
| pregnant | Pregnant |
| property | Property Ownership |
| race | Racial Minority |
| racist | Racial Minority |
| religious | Religion |
| sick | Physically Ill |
| single | Marital Status |
| stem cells | stem cells |
| substance | Drug Usage |
| terminal | Terminally Ill |
| thirdXworld | Developing Country |
| threat | Threat of Stigma |
| women | Women |
Indicator Peers (Indicators in Same Vulnerability)
| Indicator | Peers |
|---|
| belief | ['conviction', 'religious'] |
| child | ['children'] |
| children | ['child'] |
| conviction | ['belief', 'religious'] |
| disability | ['disabled', 'mentally'] |
| disabled | ['mentally', 'disability'] |
| drug | ['influence', 'substance'] |
| foetus | ['foetuses'] |
| foetuses | ['foetus'] |
| influence | ['drug', 'substance'] |
| manipulate | ['manipulated'] |
| manipulated | ['manipulate'] |
| mentally | ['disabled', 'disability'] |
| opinion | ['philosophy'] |
| parent | ['parents'] |
| parents | ['parent'] |
| philosophy | ['opinion'] |
| race | ['racist'] |
| racist | ['race'] |
| religious | ['belief', 'conviction'] |
| substance | ['drug', 'influence'] |
Trigger Words
capacity
consent
cultural
developing
ethics
justice
protect
protection
risk
self-determination
welfare
Applicable Type / Vulnerability / Indicator Overlay for this Input