# Genetic Privacy and Identity in Sexual and Gender Minorities: GetPrISM

> **NIH NIH R21** · VANDERBILT UNIVERSITY MEDICAL CENTER · 2020 · $212,500

## Abstract

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 f...

## Key facts

- **NIH application ID:** 10005405
- **Project number:** 5R21HG010652-02
- **Recipient organization:** VANDERBILT UNIVERSITY MEDICAL CENTER
- **Principal Investigator:** ELLEN WRIGHT CLAYTON
- **Activity code:** R21 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $212,500
- **Award type:** 5
- **Project period:** 2019-09-01 → 2022-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10005405

## Citation

> US National Institutes of Health, RePORTER application 10005405, Genetic Privacy and Identity in Sexual and Gender Minorities: GetPrISM (5R21HG010652-02). Retrieved via AI Analytics 2026-05-26 from https://api.ai-analytics.org/grant/nih/10005405. Licensed CC0.

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