Researchers at Vanderbilt University Medical Center's (VUMC) Center for Biomedical Ethics & Society were recently awarded a grant from the National Human Genome Research Institute (NHGRI) of the National Institutes for Health (NIH) to explore LGBTQ+ perspectives on a range of issues related to biomedical research.

With the focus of medical treatment and research on precision medicine, Vanderbilt University School of Medicine and VUMC researchers have joined partner organizations in Nashville and surrounding areas to collect input on this topic from individuals who are LGBTQ+. Past research has shown that sexual and gender minorities experience significant disparities in health and healthcare. These inequities result from complex interactions among social, political, environmental and genomic factors.

In this study, investigators explore what these minorities think about research that combines genetic data, sexual orientation and gender identity with other health and demographic information, a strategy that can bring better understanding and resolution of these disparities. The "GetPrISM study, short for Genetic Privacy and Identity in Sexual and Gender Minorities, is a project of VUMC's GetPreCiSe Center (Genetic Privacy and Identity in Community Settings). The GetPreCiSe Center is an NIH Center of Excellence in Ethics Research.

"In order for precision medicine research to be effective, it is important that the participants broadly reflect the diversity of the general population, including LGBTQ+ people," said Ellen W. Clayton, MD, JD, the Craig-Weaver Professor of Pediatrics, the study's principal investigator and director of the GetPreCiSe Center. "Including LGBTQ+ individuals requires identifying and responding to their opinions about research."

Historically, the voices of LGBTQ+ individuals have been only a fraction of those included in surveys and focus groups, and this population has not been specifically highlighted. Through the grant, investigators have already conducted 31 in-depth telephone interviews. In-person interviews were planned originally, but the COVID-19 pandemic required a change.

"We are particularly grateful for the LGBTQ+ community's trust in our research team and their thoughtful engagement on these important issues," said Clayton. "As we strive toward a more inclusive society, we are excited to amplify LGBTQ+ voices in genomics research."