Sexual and Gender Minority Youth’s Perspectives on Sharing De-identified Data in Sexual Health and HIV Prevention Research

Margaret Matson, Kathryn Macapagal, Ashley Kraus, Ryan Coventry, Emily Bettin, Celia B. Fisher, Brian Mustanski*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

Abstract

Funding agencies encourage and sometimes require data sharing. However, there is limited empirical research on participant perspectives on sharing de-identified data from research on sensitive topics (e.g., HIV, sexual health) with other researchers, and virtually none from adolescents or sexual and gender minority (SGM) participants. SGM teens (N = 197) ages 14–17 completed an online survey with multiple-choice and open-ended items assessing perspectives toward sharing survey responses and blood samples from sexual health and HIV testing studies with other researchers. SGM youth were willing to share data but frequently cited confidentiality and privacy concerns, including fears about parents finding out about their identities even after de-identification was explained. Researchers need to ensure youth understand explanations of data security protections in order to make well-informed decisions about participating in research.

Original languageEnglish (US)
JournalSexuality Research and Social Policy
Volume16
Issue number1
DOIs
StatePublished - Mar 1 2019

Keywords

  • Adolescents
  • Data sharing
  • Gender identity
  • HIV prevention
  • Participant perspectives
  • Research ethics
  • Sexual orientation

ASJC Scopus subject areas

  • Gender Studies
  • Health(social science)
  • Sociology and Political Science

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