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Sexual and Gender Minority Adolescents’ Views On HIV Research Participation and Parental Permission: A Mixed‐Methods Study
Author(s) -
Mustanski Brian,
Coventry Ryan,
Macapagal Kathryn,
Arbeit Miriam R.,
Fisher Celia B.
Publication year - 2017
Publication title -
perspectives on sexual and reproductive health
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.818
H-Index - 93
eISSN - 1931-2393
pISSN - 1538-6341
DOI - 10.1363/psrh.12027
Subject(s) - permission , parental consent , psychology , sexual minority , focus group , human immunodeficiency virus (hiv) , social psychology , informed consent , family medicine , medicine , sexual orientation , political science , alternative medicine , business , law , pathology , marketing
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.