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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 MustanskiEmail author
Article

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.

Keywords

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

Notes

Acknowledgements

This research was supported by a grant from National Institute on Minority Health and Health Disparities of the National Institutes of Health under award R01MD009561 (PIs: Mustanski & Fisher). The content is solely the responsibility of the authors and does not necessarily represent the views of the funding agencies.

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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  • Margaret Matson
    • 1
  • Kathryn Macapagal
    • 1
    • 2
  • Ashley Kraus
    • 1
  • Ryan Coventry
    • 1
  • Emily Bettin
    • 1
  • Celia B. Fisher
    • 3
  • Brian Mustanski
    • 1
    • 2
    Email author
  1. 1.Department of Medical Social Sciences & Institute for Sexual and Gender Minority Health and WellbeingNorthwestern University Feinberg School of MedicineChicagoUSA
  2. 2.Department of Psychiatry & Behavioral SciencesNorthwestern University Feinberg School of MedicineChicagoUSA
  3. 3.Center for Ethics Education & Department of PsychologyFordham UniversityBronxUSA

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