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There has been a recent increase in public attention to health disparities in the incidence and treatment of suicide, substance abuse and sexual health risks among lesbian, gay, bisexual, and transgender youth (LGBTY). Although there is clearly a need for prevention and treatment programs for LGBTY under the age of 18, few such programs exist, due in substantial part to limited research knowledge. Fordham University Center for Ethics Education Director Dr. Celia B. Fisher and Fordham HIV and Drug Abuse Prevention Research Ethics Training Institute faculty member Dr. Brian Mustanski address this issue in a recent article in The Hastings Center Report.
Fisher and Mustanski explain that decisions made by institutional review boards (IRBs) responsible for approving and disapproving research studies are also responsible for the exclusion of LGBTY from critical health disparities research. One set of reasons are ambiguities in the definition of research risks in federal regulations governing the protection of child and adolescent research participants, resulting in nationwide inconsistencies in IRB interpretation of these regulations, and IRB reliance on subjective evaluations of LGBTY behaviors and research vulnerability.
In addition, the authors argue, more than other youth, LGBTY whose families are unaware of their sexual orientation or whose families have victimized them on account of it, are often afraid to participate in studies that require guardian permission. However, many IRBs are reluctant to grant waivers of guardian permission, even in contexts in which it is permitted by federal regulations.
This situation is in conflict with the current ethical discourse focusing on youths’ right to participate in research that will protect them from receiving developmentally untested, inappropriate, and unsafe treatment. This article describes these barriers, and offers recommendations for providing LGBTY safe and fair access to health research.
Celia B. Fisher, PhD, is the Marie Ward Doty University Chair, professor of psychology, and director of the Fordham University Center for Ethics Education and the Fordham HIV and Drug Abuse Prevention Research Ethics Training Institute. She has served on the National Academies’ Revisions to the Common Rule for the Protection of Human Subjects in Research in the Behavioral and Social Sciences Committee, the Secretary’s Advisory Committee on Human Research Protections, chaired the Environmental Protection Agency’s Human Studies Review Board, and received the 2010 Health Improvement Institute’s Lifetime Achievement Award for Excellence in Human Research Protection.
Brian Mustanski, Ph.D. is Associate Professor in the Department of Medical Social Sciences at Northwestern University and directs the IMPACT LGBT Health and Development Program. A central focus of his research is on the clustering of psychological, behavioral, and physical health, particularly as they relate to HIV in vulnerable populations. He has received a number of awards for his work, included being named a William T Grant Scholar and the 2011 recipient of the Award for Distinguished Scientific Contribution to LGBT Psychology from the American Psychological Association Division 44.