Recruiting Marginalized Vulnerable Populations into Health Research Issues

Recruiting Marginalized Vulnerable Populations into Health Research: Issues in International Research Henry Silverman, MD, MA Professor of Medicine University of Maryland 7/8/2016 1

How to define vulnerability • A definition of vulnerability is as follows: “To be vulnerable means to be exposed to a significant probability of incurring an identifiable harm or wrong while substantially lacking ability/means to protect oneself. ” • Some individuals in the research are substantially more likely than others to incur identifiable wrongs/harms in the research • Individuals are more prone than others to incur identifiable wrong/harms Adapted from Samia Hurst 7/8/2016 2

Defining vulnerability • Vulnerability of participants is usually more related to the context and environment of the research rather than the socio-demographic characteristics of the population. • Categorizing whole populations as vulnerable lacks sensitivity to context and fails to consider what a person might be vulnerable to. 7/8/2016 3

Distinct types of vulnerability • Consent-based vulnerability – Barriers to obtaining meaningfully informed and voluntary consent • Risk-based vulnerability – Enhanced level of research-related risk of harms and wrongs (dignity) • Exploitation-based vulnerability – Neither the individual participant nor the society of which they are members receive a fair share of the transaction (research). 7/8/2016 4

Case #1 • Ethical issues involved with research in conflict situations: • Case Study from Lebanon • Cindy A. Sousa, Kristy Clark, Kaveh Khoshnood 7/8/2016 5

Tensions in research relationships in conflict settings 7/8/2016 6

Consent-based vulnerability • Autonomous decision-making may be compromised, as participants may be motivated by – Fear – Desperation – Unrealistic expectations of assistance • Perceived coercion – Restriction of human rights – Dependent on external agencies • Informed consent process – Community, family, and then the individual 7/8/2016 7

Risk-based vulnerability • “how you conduct research, to whom you talk and what you talk about” is essential to avoiding putting communities at risk • Tension – scientific rigour vs. advocacy – Ethical propriety of turning research into direct social activism 7/8/2016 8

Risk-based vulnerability • Unrealized Benefit – Neutral quest for knowledge and overly concern for scholarship (researcher’s career) risks failure to obtain any meaningful data – If research is too subjective and clouded by too much subjectivity (lens of advocacy) = less credibility and unable to inform policy appropriately – Failure to intervene in the name of scholarly objectivity 7/8/2016 9

Risk-based vulnerability • Psychological – Opening old wounds: “re-traumatization if sensitive issues are not handled appropriately and adequate supports are not made available. 7/8/2016 10

Risk-based vulnerability • Confidentiality: stigma/discrimination – Difficult to maintain confidentiality in small communities – Reliance on local interpreters who might not be trusted – Recruitment efforts – Lack of access to courses of redress in cases of grievance 7/8/2016 11

Exploitation-based vulnerability • Community does not realize the expected benefits of the research • False expectations of assistance from researchers • “They asked us to lead them to women who had been raped so they could record their stories…We never heard form them [the researchers] again…They stole our stories” • Ownership of stories? 7/8/2016 12

Safeguards • Consent-based vulnerability – Enhance consent process • Harm-based vulnerability – Minimize breaches of confidentiality – Avoid invasion of privacy 7/8/2016 13

Safeguards: “do some good” • Research into the suffering of others can only be justified if alleviating their suffering is an explicit objective. • Correct balancing of advocacy vs. scientific objectivity • Provide some immediate benefits or feedback while they are with the community. • Some of the ways in which researchers do seek to return benefit may be discouraged by IRBs – Offering skills as health or community workers – Acting as advocates to assist participants with legal or health problems identified during the research – Too advocacy-oriented? 7/8/2016 14

Safeguards: Exploitation • Community Participatory Research • Ethical only when done in collaboration and partnership with members of the cultural communities being studied • Avoids exploitation as it ensures benefit • Help generate the evidence for better policy and practice that is relevant to the community. • Has the potential to empower refugees and IDPs and build capacity, resilience and agency 7/8/2016 15

Dignity-based harms • “Stop stealing our stories? ” • Treating human participants as data (objects) rather than as moral agents (subjects) • Capacity of refugees and IDPs in conflict to take an active role in the research process is seldom acknowledged • Constant focus on vulnerabilities and the failure to recognize strengths and resilience can further disempower already exploited groups 7/8/2016 16

What is Vulnerability? • “Understanding that vulnerability results from the circumstances in which they find themselves – rather than locating it within the person – helps to remind us that such groups consists of ‘ordinary people’ buffeted by extraordinary – albeit disturbingly common- events” Karen Block, et. al, “Values and Vulnerabilities” 7/8/2016 17

Thank you! 7/8/2016 18