Presenting Author:

Margaret Matson, M.P.H.

Principal Investigator:

Brian Mustanski, Ph.D.

Department:

Medical Social Sciences

Keywords:

LGBTQ Youth, Ethics, Data Sharing, Blood Specimen Sharing

Location:

Third Floor, Feinberg Pavilion, Northwestern Memorial Hospital

PH14 - Public Health & Social Sciences

Sharing Data and Blood Specimens: LGBTQ Youth’s Concerns and Recommendations

Introduction/Background Literature: Data sharing is the practice of making data collected from a previous study available for other researchers or members of the community to use. Sharing data provides opportunities to explore new research questions in a way that conserves funding and helps avoid duplication of efforts. However, concerns about privacy when sharing data remain especially for minor adolescent participants. Potential privacy breaches may be especially concerning for LGBTQ youth who could face stigma or victimization if their identities are revealed. This project explored LGBTQ youth’s perspectives on data sharing and recommendations to help protect adolescent participants when research data from surveys and blood specimens (e.g., HIV tests) are shared. Design/Methodology: A total of 169 LGBTQ youth ages 14-17 responded to open-ended questions on concerns about sharing survey responses or blood samples obtained in research studies with other researchers and their recommendations for protection of adolescent participants when data is shared. Responses were analyzed qualitatively. Key Findings: The majority of participants expressed concerns about confidentiality and privacy risks of sharing data and blood specimens. Participants specifically cited a fear of being outed or their parents finding out they participated in an LGBTQ study as a result of having their data or blood specimen shared. Another frequently cited concern related to how other researchers would use the data and blood specimens (i.e., to create stigma toward the LGBTQ population). Another theme that emerged specifically for specimen sharing included a general discomfort with sharing blood. Participants’ recommendations included removing identifying information from data and specimens prior to sharing to help protect participant privacy and confidentiality. Implications for Future Practice: Researchers and IRBs can use these findings to make better informed ethical decisions about data and specimen sharing practices to ensure protection of adolescent human subjects.