VULNERABLE PROBLATIONS AND IN VULNERABILITY SITUATION Dr. Victor Pacheco National Bioethics Commission on Redbioetic Health UNESCO for Latin America and the Caribbean ALAC Network of National Commissions of Bioethics in Health - UNESCO Ecuadorian Bioethics Society Ecuadorian Academy of Medicine VULNERABILITY etymology and definition • Etymology: vulnus that can be understood as “wound” or “damage”, abilis that can be equivalent to “that can”, and the suffix It indicates quality. • “Vulnerability” can then be defined as “quality that someone has to be injured” (or damaged) • RAE indicates for vulnerability “Quality of vulnerable” and for vulnerable “That it can be injured or receive injury, physically or morally ” VULNERABILITY • The definition of vulnerable implies the existence or appearance of a threat, risk, danger or contingency, but not it is only the presence of this risk that determines whether a subject is vulnerable or not, but the lack - or decreased capacity for response, protection, shelter or defense against this risk, or to mitigate or avoid their consequences. • Permanent? • Movable, not immanent? VULNERABILITY • 1. Anthropological vulnerability (essential, immanent to the species or condition): Expresses the finitude and fragility of the life on which the possibility and necessity of all morals is based. It is related to the notion of dignity and human rights • 2. Specific vulnerability (contingent, variable and selective) Some individuals suffer from a certain type of deprivation - permanent or not - that exposes them to a greater susceptibility to a particular risk. VULNERABILITY IDEAS FOR YOUR UNDERSTANDING • “We want a world in which vulnerability is recognized as the essence of humans. We believe that to weaken, strengthen and dignify us, a common meeting place that we humanize and dignify ” • Pope Francisco VULNERABILITY: RISKS • Vulnerability includes three types of risks: • the risk of exposure to seizures or convulsions; • the risk of a lack of capacity to deal with them; Y • the risk of suffering more serious consequences from them, as well as slow or limited recovery VULNERABILITY - CATEGORIES FROM THE INTERNATIONAL BIOETHICS COMMITTE - UNESCO • Specific vulnerability categories are relevant to establish special responsibilities and obligations: • situations that are determined by personal issues (permanent or temporary) disability or illness, • situations that are related to social and political determinants: for example, power relations, social structure, culture, economy, • situations that are related to environmental determinants: for example natural disasters • situations of vulnerability in the field of health care, research and development and application of new technologies in biomedical sciences. VULNERABILITY: RESTRICTIVE CONCEPTIONS FROM VIDAL, S. • 1.- Based on the damage: They have an identifiable probability of receiving a deeper evil (damage). - Protection: oriented directly and specifically to probable damage • 2.- Conceptions based on lack of power. Relative or absolutely unable to protect their own interests (...) may not have power, intelligence, education, resources, strength. other attributes necessary to protect their own interests ... - Protection: aimed at empowering for that purpose. VULNERABILITY: RESTRICTIVE CONCEPTIONS FROM VIDAL, S. • 3.- Based on the CI: They cannot give their CI for coercion, manipulation or persuasion, undue influence or lack of capacity. - Protection: aimed at restoring capacity, preventing coercion (autonomy), to empower or seek a subrogant responsible. • 4.- Conceptions with greater attention to contextual issues. Stratified interpretation of vulnerability, (metaphor of layers) • Protection: it is complex and must be examined in each particular place, and with each group specifically VULNERABILITY: RESTRICTIVE CONCEPTIONS FROM VIDAL, S. • 5.- Comprehensive concepts: they take into account the two forms of vulnerability, essential and specific • Protection: it is related to the respect and defense of the negative and positive human rights involved VULNERABILITY - CHARACTERIZATION • Physical, • referred to the subject's bodily integrity • Psychological, • as to the particular way in which the individual identifies himself and the way in which society identifies him (attitudes and behaviors); • Social, • position held by the subject in a social structure and its power relationship with she and other members of that structure • Socioeconomic, • as one of the ways to achieve well-being or belong to a certain group • Cultural, • system of beliefs and values ​​of the social organization and of each individual for its insertion in the universe Social vulnerability Caused or aggravated by the lack of means and the ability to protect oneself • - Poverty, income inequality, social conditions, education and access to information (for example, the unemployed, homeless, illiterate people, people participating in the activities of investigation that follow a “double standard” procedure in which the same investigation is not subject to same ethical control in different places); - Gender discrimination - Substantial limitation or deprivation of personal liberty, hierarchical relationships - Marginalization for various reasons (for example, immigrants, nomads, ethnic and racial minorities); - The balance between the right of every human being to quality medical care - The exploitation of resources in developing countries - Wars (asylum seekers and displaced persons); - The negative effects of human activity: climate change - Impact of natural disasters VULNERABILITY Universal Declaration on Bioethics and Human Rights • Article 8 - Respect for human vulnerability and personal integrity When applying and fostering scientific knowledge, medical practice and related technologies, it should be taken into Human vulnerability counts. Especially vulnerable individuals and groups should be protected and should Respect the personal integrity of these individuals. VULNERABLE GROUPS • People, or groups of people, who share a greater chance of being damaged by: • absence or lack of adequate development of skills, abilities, competencies or empowerment situations, that allow you to anticipate, avoid, face or mitigate the specific risk • intentional loss or not those capacities, or detriment of them against those who possess them • acceptance of risks as elements of life becoming • level of exposure to threats, crises and seizures to which you may be exposed, greater than that of others Humans VULNERABLE GROUPS: CRITICISMS OF YOUR IDENTIFICATION • Stereotyping to populations and subpopulations • No difference between subjects or subpopulations • Does not consider aspects of the protocols • Does not consider the research environment • Lack of flexibility • Static and rigid behavior • Unique protection proposals (insufficient?) THE THEORY OF PROTECTION / MITIGATION • Less risks • Reduce the risk of risk (aggressiveness) • Strengthen responsiveness (or adaptation) • Address to eliminate the causes of risk PRIORITY CARE GROUPS IN VULNERABILITY SITUATION? 2008 CONSTITUTION • Third chapter • Rights of people and priority care groups • Art. 35.- The elderly, girls, boys and adolescents, pregnant women, people with disabilities, persons deprived of liberty and those who suffer from catastrophic or highly complex diseases will receive priority and specialized attention in the public and private spheres. The same priority attention will receive people at risk, victims of domestic and sexual violence, child abuse, natural disasters or Anthropogenic The State will provide special protection to persons in a condition of double vulnerability. PRIORITY CARE GROUPS IN VULNERABILITY SITUATION? 2008 CONSTITUTION • Art. 363.- The State will be responsible for: • 1. Formulate public policies that guarantee the promotion, prevention, cure, rehabilitation and care integral in health and promote healthy practices in the family, work and community spheres. two. Universalize health care, permanently improve quality and expand coverage. 3. Strengthen state health services, incorporate human talent and provide physical infrastructure and the equipment to public health institutions. 4. Ensure ancestral health practices and alternative through the recognition, respect and promotion of the use of their knowledge, medicines and instruments. 5. Provide specialized care to the priority care groups established in the Constitution. 6. Ensure sexual and reproductive health actions and services, and guarantee the integral health and life of women, especially during pregnancy, childbirth and postpartum. 7. Ensure availability and access to Quality, safe and effective medicines, regulate their commercialization and promote national production and use of generic medicines that respond to the epidemiological needs of the population. In the access to medicines, public health interests will prevail over economic and commercial ones. 8. Promote the integral development of health personnel. GROUPS IN VULNERABILITY SITUATION SOME DETERMINING FACTORS • Inability to make decisions (cognitive) • Subordination to the authority of others (legal) • Masking of underlying dissent (deferential) • Undervaluation of rights and interests (of infrastructure) • Serious patients who require immediate decisions or infectivity of response to serious diseases (medical) • Lack of important social assets (distributive) • Presence of risks (multifactorial) GROUPS IN VULNERABILITY SITUATION • Neonates • Children and teenagers • Elderly • Seniors without family support • Pregnant / Nursing • Patients in emergency and critical care services • Unable to participate in IC processes • Incurable or suffering patients • Rare disease carriers • Carriers of communicable genetic diseases • People with special abilities GROUPS IN VULNERABILITY SITUATION • Without political power • Not familiar with current scientific concepts • With lower rank or hierarchical subordination • Low quintiles • Unemployed • Refugees and displaced • Repatriated • Beneficiaries of social assistance • Deprived of liberty • Excluded social or cultural • Minority ethnic groups • Uncontacted populations or with initial contact • Homeless • Residents in foster homes VULNERABLE GROUPS: THE PROBLEM OF YOUR IDENTIFICATION • Labels suggest a single response (in the worst sense: allowing or denying the admissibility of investigation; in the best sense: providing some kind of protection or safeguard). • The local Research Ethics Committees that really know the population in which the Study are fundamental. This is the type of committee that can identify the different layers of vulnerability of the hospital or clinic in which the research is conducted. VULNERABILITY THE DECAPING ANALYSIS • The historical case of Willowbrook • Children 3 to 10 years (+ 800) • Ethnic marginalization (Latinos and Afro-descendants) • Family economic fragility • Institutionalized • Mental disability • Coercive recruitment for investigations • Consent (inappropriate, collective, presumed?) • Induction of potential damage (active inoculation) • Expected benefits (for those investigated and general) drvpacheco-2017 drvpacheco-2017