Self-consent for HIV prevention research involving sexual and gender minority youth: Reducing barriers through evidence-based ethics

Celia B. Fisher*, Miriam R. Arbeit, Melissa S. Dumont, Kathryn Macapagal, Brian Mustanski

*Corresponding author for this work

Research output: Contribution to journalArticle

35 Scopus citations

Abstract

This project examined the attitudes of sexual and gender minority youth (SGMY) toward guardian permission for a preexposure prophylaxis (PrEP) adherence trial and their preparedness to provide informed, rational, and voluntary selfconsent. Sixty sexually active SGMY (ages 14-17) participated in online survey and asynchronous focus group questions after watching a video describing a PrEP adherence study. Youth responses highlighted guardian permission as a significant barrier to research participation, especially for those not "out" to families. Youth demonstrated understanding of research benefits, medical side effects, confidentiality risks, and random assignment and felt comfortable asking questions and declining participation. Reasoning about participation indicated consideration of health risks and benefits, personal sexual behavior, ability to take pills every day, logistics, and post-trial access to PrEP. Results demonstrate youth's ability to self-consent to age-and population-appropriate procedures, and underscore the value of empirical studies for informing institutional review board (IRB) protections of SGMY research participants.

Original languageEnglish (US)
Pages (from-to)3-14
Number of pages12
JournalJournal of Empirical Research on Human Research Ethics
Volume11
Issue number1
DOIs
StatePublished - Jan 1 2016

Keywords

  • Adolescent medicine
  • Ethics
  • Gender identity
  • HIV prevention
  • Informed consent by minors
  • Pre-exposure prophylaxis
  • Research
  • Sexual orientation

ASJC Scopus subject areas

  • Social Psychology
  • Education
  • Communication
  • Law

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