Sexual and gender minority adolescents are underrepresented in HIV research, partly because institutional review boards (IRBs) are reluctant to waive parental permission requirements for these studies. Understanding teenagers’ perspectives on parental permission and the risks and benefits of participating in HIV research is critical to informing evidence-based IRB decisions.
Data from 74 sexual and gender minority adolescents aged 14–17 who participated in an online focus group in 2015 were used to examine perspectives on the risks and benefits of participation in a hypothetical HIV surveillance study and the need for parental permission and adequate protections. Data were analyzed thematically; mixed methods analyses examined whether concerns about parental permission differed by whether teenagers were out to their parents.
Most adolescents, especially those who were not out to their parents, would be unwilling to participate in an HIV study if parental permission were required. Perceived benefits of participation included overcoming barriers to HIV testing and contributing to the health of sexual and gender minority youth. Few risks of participation were identified. Adolescents suggested steps that researchers could take to facilitate informed decision making about research participation and ensure minors’ safety in the absence of parental permission; these included incorporating multimedia presentations into the consent process and explaining researchers’ motivations for conducting the study.
Respondents believed that the benefits of HIV surveillance research outweighed the risks. Requiring parental permission may exclude many sexual and gender minority teenagers from taking part in HIV research, especially if they are not out.
Brian Mustanski is professor, Department of Medical Social Sciences, and director, Institute for Sexual and Gender Minority Health and Wellbeing; Ryan Coventry is research project coordinator, and Kathryn Macapagal is research assistant professor, Department of Medical Social Sciences and Institute for Sexual and Gender Minority Health and Wellbeing—all at Feinberg School of Medicine, Northwestern University, Chicago. Miriam R. Arbeit is postdoctoral fellow, and Celia B. Fisher is director, Center for Ethics Education, Fordham University, New York.