From Collection to Collaboration: Building Ethical Frameworks for Genetic Research.

Abstract

Transgender, nonbinary, and gender diverse (TNGD) communities are not routinely included as partners in the research that will impact them. The expansion of genomic and gender identity data collection has allowed researchers to explore transgender identity genomics research (TIGR), or associations between genomics and gender identity. We used a community-based participatory research (CBPR) approach to explore TNGD perspectives on TIGR in order to advance ethical practices, minimize harms, and maximize potential benefits. An Executive Stakeholder Board of TNGD community members, advocates, clinicians, and ethics, legal, genomics, and health equity scholars co-developed recruitment strategies, data collection tools, analytic strategies, and a dissemination plan which informed qualitative interviews with 31 U.S.-based TNGD adults. The mean age was 34 years (range = 19-73). Twelve participants were nonbinary, 12 were trans women, and 7 were trans men. The majority (61%) were people of color. Using reflexive thematic analysis, we conceptualized four themes related to ethical TIGR research practices: 1) Are we represented? 2) Are we protected? 3) Are we benefiting? 4) Are we understood? Findings underscore the importance of conducting any TIGR or genomics research with and not on TNGD communities. Ethical research benefits from sustained partnership, transparency, and reflexivity, particularly amidst ideologically motivated threats to inclusive science. Centering TNGD voices in, and recommendations for, genomics strengthens both scientific rigor and community trust. The incongruity of attempting to interrupt a CBPR study focused on ethical research practices in TIGR underscores the contradiction between stated federal commitments to research integrity and the actions taken. (4,064 words).