The Experiences of Sexual and Gender Minority Participants With a Remote Biospecimen Collection Protocol

Abstract

Sexual and gender minority (SGM) communities are underrepresented in biomedical studies, highlighting the importance of developing biospecimen collection protocols aimed at engaging SGM participants. We aimed to learn more about SGM participants’ experiences with a remote (i.e., not performed at a central location) biospecimen collection study pioneered by The PRIDE Study, a cohort study of SGM adults residing in the United States and its territories. Feedback was collected from 112 SGM participants following blood donation for a parent study investigating the relationship between minority stress, substance use, and epigenetic markers of substance use and minority stress. We used an inductive and collaborative approach to qualitative analysis and identified major themes and areas for protocol improvement. Major themes among participant feedback were as follows: (1) communication with the research team, (2) convenience of donation, (3) interactions with clinical laboratory staff, and (4) anonymity and privacy. Most participants indicated that they experienced little to no problems during the donation process and expressed approval for the clarity and transparency of the informed consent process, ease of communication with the research team, and measures taken to protect participant confidentiality during their appointment. The most common challenges encountered by participants related to the inconvenience of handling and transporting study materials to the clinical laboratory site and the clinical laboratory staff’s unfamiliarity with the study protocol. Some participants indicated a preference for more elements of the study protocol (e.g., transporting collection materials) to be left to the responsibility of the research team. Future studies should carefully consider the delegation of responsibility between participants and the research team to balance both study reach and participant accessibility. Alternative formats, such as at-home collection or collaboration with community health workers, may further enhance participant satisfaction and convenience.