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.
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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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Matson, M., Macapagal, K., Kraus, A. et al. Sexual and Gender Minority Youth’s Perspectives on Sharing De-identified Data in Sexual Health and HIV Prevention Research. Sex Res Soc Policy 16, 1–11 (2019). https://doi.org/10.1007/s13178-018-0372-7
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DOI: https://doi.org/10.1007/s13178-018-0372-7