Abstract
CONTEXT: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 111-121 |
| Number of pages | 11 |
| Journal | Perspectives on Sexual and Reproductive Health |
| Volume | 49 |
| Issue number | 2 |
| DOIs | |
| State | Published - Jun 2017 |
Funding
This study was supported by grant R01MD009561 from the National Institute on Minority Health and Health Disparities. The content is the responsibility solely of the authors and does not reflect the views of the National Institutes of Health. The authors are grateful to Zenaida Rivera and Alan Ashbeck for their assistance with development of study materials, participant recruitment and data collection. They also thank members of the Northwestern Institute for Sexual and Gender Minority Health's Wellbeing Youth Advisory Council and Scientific Advisory Council for their feedback on the study procedures.
ASJC Scopus subject areas
- Public Health, Environmental and Occupational Health
- Obstetrics and Gynecology
- Sociology and Political Science
