National and international statements on gene editing have frequently called for engagement with stakeholders, particularly potential end users. However, efforts to answer these calls have been sporadic and typically focused on people living with particular genetic conditions. As genetic interventions that may occur during pregnancy or result in pregnancy move toward human trials, it is essential to engage pregnancy-capable people who may participate in such trials. In particular, the perspectives and unique priorities of members of sexual and/or gender minority (SGM) communities must be included as we develop ethical frameworks for governing these emerging technologies. SGM communities have historically experienced marginalization in medical settings, particularly with respect to access to and utilization of assisted reproductive technologies. Dedicated efforts toward SGM inclusion early in the translational process can help prevent exclusionary practices and harm. This qualitative study enumerated existing barriers for SGM individuals to both care and research participation, examined concerns about research participation, and identified suggested means for addressing these concerns. Interviews with multidisciplinary experts, including 5 experts in SGM health, were followed by online focus groups with individuals who self-identified as lesbian/gay/bisexual and/or transgender. These data reveal concerns regarding the ethics of such clinical trials, including the need for gender-neutral or inclusive language in research design and recruitment. The importance of intersectional identities and the ways that these interventions may intersect or interfere with gender affirming care were also concerns. Already, barriers exist in SGM reproductive care that pose additional challenges; however, they also provide opportunities for increased inclusivity.
Authors: Harlie Custer, Case Western Reserve University; Christina Collart, Cleveland Clinic; Ruth Farrell, Cleveland Clinic; Braveheart Gillani, Case Western Reserve University; Marsha Michie, Case Western Reserve University; Scott Emory Moore, Case Western Reserve University; Roselle Ponsaran, Case Western Reserve University
