Transgender and gender diverse (TGD) populations are disproportionately burdened by physical and mental health inequities and are a designated NIH health disparities population. The recent explosion of biobanking, and more routine collection of gender identity data affords an opportunity to study possible genomic associations with gender identity. Such research could affirm gender identity, or be used to pathologize and discriminate, limit access to care, or influence the use of reproductive technologies.
Trans/Forming Genomics aim is to guide the field in order to maximize benefit and minimize harm of such studies and meet a time sensitive need to inform how genomic data are collected, analyzed, and reported to benefit diverse TGD populations and to advance scientific understanding. Research on genomics and gender identity should be conducted with TGD communities to ensure that we do not repeat past wrongs, for example excluding racial/ethnic populations from the conduct and reporting of research that impacts these populations and further reifying stereotypes and stigma.
In partnership with and guided by a diverse Executive Stakeholder Board of community members, advocates, clinicians, and ethics, legal, and genomics and health equity scholars, we will explore perspectives on the potential risks and benefits of studying genomic associations with gender identity. Together we will conduct a sequential mixed-methods study comprised of in-depth qualitative interviews and quantitative surveys with TGD community members; and listening sessions with key stakeholders (genomics researchers, TGD- serving clinicians, ethical and legal scholars, institutional review board members). We will also convene a larger Summit to develop guidelines,standards, and best practices to guide genomic research about gender identity.
Project Number: 5R01HG013145-02
Dates: Recruitment active.
PI: Carol Horowitz, Sari Reisner, Kellan Baker
Website: https://transformgenetics.org/
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