AER17 Panel V: Social, Behavioral, and Biomedical Transgender Research—Needs and Challenges
Moderator: Jeremy Sugarman, MD, MPH, MA; Harvey M. Meyerhoff Professor of Bioethics and Medicine; Deputy Director for Medicine, Berman Institute of Bioethics, Johns Hopkins University
Sean Cahill, PhD; Director of Health Policy Research, The Fenway Institute; Affiliate Associate Clinical Professor, Department of Health Sciences; Bouve College of Health Sciences, Northeastern University
Rimah Jaber; Program Administrator, HIV and Drug Abuse Prevention Research Ethics Training Institute, Fordham University
Many medical professionals have only recently become aware of the special issues people who do not identify with their birth-assigned sex or gender confront in healthcare institutions, schools, the workplace, and in their personal relationships. Some of these problems arise from gaps in medical knowledge regarding safe and effective means of helping them to transition to their sexual phenotype, while others arise from health providers’ failure to respond appropriately to the needs of these patients. For example, in a 2011 report, the Institute of Medicine underscored the urgency of conducting research on the nature, extent, and consequences of health disparities among transgender persons. Yet, studies on the direct and indirect effects of stigma and discrimination against transgender patients, as well as research regarding medical interventions for transitioning, bring up special challenges for investigators and IRBs. Among these are the difficulties in assessing benefits and risks of social, behavioral, and biomedical research in this field—including the nonphysical risks that can arise from being a research participant—and issues of consent and assent to novel interventions with children and youth. This panel will provide information about various groups that identify as transgender and examine the ethical issues that arise for these populations in social, behavioral and biomedical research. This session aims to provide practical information for IRBs that want to enhance participant protections in research on the medical, mental health, and sexual health challenges facing transgender children, youth, and adults.