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

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 deidentification was explained. Researchers need to ensure youth understand explanations of data security protections in order to make well-informed decisions about participating in research.

What influences a person’s willingness to share health information for both direct care and uses beyond direct care? Findings from a focus group study in Ireland

“…In the current study, such benefits were evaluated against the risk of sensitive information being shared inappropriately and its potential consequences, such as discrimination in care or in interactions with immigration agencies and insurance companies. Similar concerns are voiced elsewhere in the literature 11 , 23 – 25 . Much of this literature considers sexual health and mental health-related information as sensitive.…”

“…Consequently, it is important to capture the Irish public’s perspective to adequately inform policy and practice. Furthermore, much of the current literature 2 , 4 , 5 , 10 , 11 focuses on the sharing of information for research purposes. This may not represent opinion towards the sharing of information for other purposes.…”

Legal and ethical requirements for research with minors.

“…Much has been written on sexual health research with minors (e.g., Caskey & Rosenthal, 2005;Flicker & Guta, 2008), including research with sexual and gender minority youth (e.g., Fisher & Mustanski, 2014;Gray et al, 2020;Matson et al, 2019;Mustanski, 2011). Brody and Waldron (2000) and the National Advisory Council on Drug Abuse (2005) provided recommendations regarding the predominant ethical issues in research on substance abuse with minors.…”

What influences a person’s willingness to share health information for both direct care and uses beyond direct care? Findings from a focus group study in Ireland

“…Consequently, it is important to capture the Irish public's perspective to adequately inform policy and practice. Furthermore, much of the current literature 2,5,7,12,13 focuses on the sharing of information for research purposes. This may not represent opinion towards the sharing of information for other purposes.…”