Online Program

Parent/guardian consent as a barrier to HIV prevention research with LGBT adolescents: A focus group study

Wednesday, November 4, 2015

Kathryn Macapagal, Ph.D., Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL
Celia Fisher, Ph.D., Department of Psychology, Fordham University, Bronx, NY
Miriam Arbeit, Ph.D., Tufts University, Medford, MA
Brian Mustanski, PhD, Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL
Background: LGBT adolescents are disproportionately affected by HIV, yet are underrepresented in HIV prevention research. Youth whose parents/guardians are unaware or disapprove of their sexual/gender identity may not participate in studies requiring guardian permission, and many IRBs are reluctant to grant consent waivers without evidence that the research is not feasible without them. As such, this study investigated LGBT youth’s perspectives of the feasibility of guardian permission for HIV prevention studies.

Methods: Eight online focus groups were conducted with 80 LGBT youth aged 14-17. Focus group questions elicited risks and benefits of obtaining guardian consent in HIV prevention studies, and ways to protect LGBT youth in studies when guardian consent is waived. Focus group transcripts were analyzed thematically and using mixed methods.

Results: Guardian consent was a significant barrier to research participation. Reasons against obtaining consent included discomfort about disclosing sexual/gender identity and sexual activity to guardians, and guardians’ religiosity or negative attitudes toward LGBT persons. Youth who were more willing to get consent tended to have one guardian who was accepting of their sexual/gender identity. Youth indicated that a peer/adult advocate and videos of the study procedures would help them make more informed decisions without a guardian present.

Conclusions: Requiring guardian consent likely results in the unfortunate exclusion of many LGBT adolescents from HIV prevention research. Researchers and IRBs can use these findings to make evidence-based decisions about granting waivers of parental consent in studies related to HIV and other sensitive topics (e.g., sex, drug/alcohol use) with LGBT adolescents.

Learning Areas:

Diversity and culture
Ethics, professional and legal requirements
Public health or related research
Social and behavioral sciences

Learning Objectives:
Describe barriers to participating in HIV prevention research among LGBT youth Identify at least one way to mitigate risks of research participation for LGBT youth in studies that waive guardian permission

Keyword(s): HIV/AIDS, Ethics

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have conducted research and have worked as a healthcare provider in the field of sexual health, HIV, and HIV prevention for the last eight years. I have directed two federally funded grants focusing on sexual health and HIV prevention in young adults and adolescents.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.