Genetic Privacy and Identity in Sexual and Gender Minorities: GetPrISM

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Sexual and gender minorities (SGMs) experience significant disparities in health and health care. These inequities result from complex interactions among social, political, environmental, and genomic factors, all of which must be understood if we are to address these disparities. The research needed to understand the health issues faced by SGM populations will often require analysis of large collections of individual phenotypic and behavioral information, community characteristics, and large-scale genomic data. Some investigators may seek to explore hypotheses that sexual orientation and gender identity are complex traits with a polygenic, but non- determinative component and that those genetic components may contribute to health disparities. These research strategies, which analyze large amounts of genomic and other data, represent a dramatic change from earlier research practices in their implications for research participants. The history of research involving SGMs has been particularly controversial, especially in the wake of the ultimately unsuccessful search for a “gay gene” in the 1990s. Some writers at the time supported the search for genetic contributions to sexual orientation in order to decrease stigma. Others opposed this research for fear that the results would be used to discriminate against SGMs. Even now, surprisingly little is known about what SGMs think about research involving genetics and sexual orientation and gender identity (SOGI) data or whether they would be willing to participate in such research. A recent study reported that SGMs, in a hypothetical setting, expressed greater willingness than others to take part in the All of Us Cohort Program, whereas a comprehensive review cited several studies showing that SGMs were more reluctant to enroll in genomics research due to fears of misinterpretation. Identifying and addressing these concerns is crucial not only to protecting/representing the SGM community, but also to inviting participation of these groups to ensure their access to precision medicine. The overarching goal of this application is to investigate perspectives on research using genetic and SOGI data among a diverse group of self-identifying SGM community members. We will use a qualitative approach to examine the following two aims: 1) To identify and understand the range of perspectives about research involving genetic and SOGI data, including perceptions of risks, harms, and benefits to individuals of conducting research on biological factors related to health problems as well as related to sexual orientation and gender identity; and 2) To characterize SGM attitudes and opinions about the appropriateness of genetic research using SOGI data and the issues they would want to see addressed and safeguards they would require before participating in research. This project will allow us to refine strategies for use at other sites to enhance the generalizability of our findings and to develop a robust evidence base for developing ethically acceptable research protocols that will identify and address the health disparities affecting SGMs.