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

Autor:	Ryan Coventry, Kathryn Macapagal, Celia B. Fisher, Ashley Kraus, Margaret Matson, Brian Mustanski, Emily Bettin
Rok vydání:	2019
Předmět:	Research ethics Health (social science) Sociology and Political Science business.industry Data security Article Gender Studies Data sharing Empirical research Sexual orientation Confidentiality business Psychology Social psychology Multiple choice Reproductive health
Zdroj:	Sexuality Research and Social Policy. 16:1-11
ISSN:	1553-6610 1868-9884
DOI:	10.1007/s13178-018-0372-7
Popis:	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.
Databáze:	OpenAIRE
Externí odkaz:	https://explore.openaire.eu/search/publication?articleId=doi_dedup___::954800a026a0d53a8ec117b409085068 https://doi.org/10.1007/s13178-018-0372-7 Zobrazit plný text záznamu Full text from SpringerLink