Sexual and Gender Minorities’ Perspectives on Genetic Privacy and Identity in Research

Catherine Hammack-Aviran, MA, JD - Vanderbilt University Medical Center

ELSIconversations - March 5, 2021

Sexual orientation and gender identity minorities (SGMs) suffer significant health disparities, which can result from complex interactions among sociopolitical, environmental, and genomic factors. Research to understand the causes of these inequities in order to address them often requires analysis of large collections of individual phenotypic and behavioral information, community characteristics, and large-scale genomic data. Some investigators are also exploring the role of genetics variation in sexual orientation and gender identity (SOGI). Yet research involving genomics and SGMs has been controversial, especially in light of the ultimately unsuccessful search for a “gay gene” in the 1990s. Even now, surprisingly little is known about SGMs’ views about and willingness to participate in research that combines genomic and SOGI data. Within the Genetic Privacy and Identity in Community Settings (GetPreCiSe) NIH Center of Excellence in Ethics Research, we are conducting empirical research to investigate perspectives on genetic research using SOGI data among a diverse group of self-identifying SGMs in middle Tennessee. Specifically, we are conducting focus groups to identify the range of risks and benefits SGM individuals associate with research examining genetics, SOGI data, and health. Additionally, we are examining SGM perceptions about the appropriateness of research exploring the role of genetics in sexual orientation and gender identity, and the issues they would want to see addressed before participating in such research. We will present key preliminary data illuminating the range of perspectives and considerations of SGMs on genetic research using SOGI data, and its potential effects on LGBTQIA+ individuals and communities.