Rajkovic Antoine, Cirino Allison L, Berro Tala, Koeller Diane R, Zayhowski Kimberly
Genetic Counseling Program, MGH Institute of Health Professions, Boston, MA, USA.
Division of Genetics, Brigham and Women's Hospital, Boston, MA, USA.
J Community Genet. 2022 Feb;13(1):31-48. doi: 10.1007/s12687-021-00554-z. Epub 2021 Oct 12.
Recent genetic research has explored how genetic variants may contribute to gender dysphoria and transgender and gender-diverse (TGD) identities. When investigating communities that have been marginalized, it is important for researchers to incorporate perspectives of the communities the research is targeting. Therefore, investigators should incorporate the TGD community's opinions into this research to mitigate potential ethical issues, given the history of pathologization of TGD identities and utilization of genetics for eugenics. The aim of this study was to understand the perspectives of TGD individuals about trans-associated genetic research (TAGR). Eighteen semi-structured interviews were conducted with members of the TGD community to explore how TGD individuals view TAGR. Through inductive content analysis, five major themes were emergent: (1) TAGR could affect self-perception of identity; (2) TAGR could affect external views of TGD people; (3) TAGR could affect access to gender-affirming services; (4) TAGR could contribute to the pathologization and elimination of TGD identities; and (5) researchers should consult TGD community members and consider ethical concerns before conducting research. Participants highlighted concerns about TAGR being used as a tool for discrimination. Those who identified potential advantages of TAGR gave warning that TAGR would be unlikely to solely have positive effects. It is important for genetic researchers to prioritize the perspectives and concerns of TGD people highlighted in this study. Research about the TGD community needs to include TGD individuals as core members of the research team. Moreover, due to the serious ethical issues outlined in this study, TAGR should be reconsidered altogether.
近期的基因研究探索了基因变异如何导致性别焦虑以及跨性别和性别多样化(TGD)身份认同。在调查被边缘化的群体时,研究人员将研究目标群体的观点纳入研究非常重要。因此,鉴于TGD身份曾被病理化以及遗传学被用于优生学的历史,研究人员应将TGD群体的意见纳入此项研究,以减轻潜在的伦理问题。本研究的目的是了解TGD个体对跨性别相关基因研究(TAGR)的看法。对TGD群体的成员进行了18次半结构化访谈,以探讨TGD个体如何看待TAGR。通过归纳性内容分析,出现了五个主要主题:(1)TAGR可能影响身份认同的自我认知;(2)TAGR可能影响外界对TGD人群的看法;(3)TAGR可能影响获得性别肯定服务的机会;(4)TAGR可能导致TGD身份的病理化和消除;(5)研究人员在开展研究前应咨询TGD群体成员并考虑伦理问题。参与者强调了对TAGR被用作歧视工具的担忧。那些指出TAGR潜在优势的人警告说,TAGR不太可能只产生积极影响。基因研究人员优先考虑本研究中突出的TGD人群的观点和担忧非常重要。关于TGD群体的研究需要将TGD个体纳入研究团队的核心成员。此外,鉴于本研究中概述的严重伦理问题,应重新全面考虑TAGR。