Bioethics Blogs

Reducing Health Disparities and Enhancing the Responsible Conduct of Research Involving LGBT Youth

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 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.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.