Trans/Forming Genomics: Guidance for Research Involving Transgender and Gender Diverse People

项目总结 变性人和性别多元化(TGD)人群--性别认同与性别不同的人 出生时分配的--约占美国成年人的1.6%。性别认同代表了一个人的概念 可以与出生时指定的性别相同(顺性别)，不同于出生时指定的性别 出生(变性人)，或超出传统分类(非二元、性别不稳定、性别多样)。TGD 人口不成比例地背负着身体和心理健康不平等的负担，并被指定为 美国国立卫生研究院健康差距人口。最近生物银行的爆炸性增长，以及更常规的性别收集 数据，并为研究可能的基因组与性别认同的关联提供了机会。是这样的 研究可以肯定性别认同，或者被用来病理性地和歧视，限制获得护理的机会，或者 影响生殖技术的使用。我们的目标是指导现场，以实现利益最大化和 将此类研究的危害降至最低，并满足告知如何收集基因组数据的时间要求， 分析和报告，以造福于不同的TGD人群，并促进科学理解。研究 关于基因组学和性别认同的研究应该与TGD社区一起进行，而不是在TGD社区上进行，以确保我们这样做 不重复过去的错误，例如，将种族/族裔人口排除在行为和报告之外 对这些人群产生影响的研究，并进一步具体化陈规定型观念和耻辱。与And合作 由种族、民族、专业和地域多元化的执行利益攸关方董事会指导 由TGD社区成员、倡导者、临床医生以及伦理、法律和基因组学组成的工作组 和健康公平学者，我们将探索研究基因组的潜在风险和好处的角度 与性别认同的联系。我们将共同努力：1)评估文献中的差距，并为以下内容定义ELSI主题 进一步探讨并纳入准则；2)进行顺序混合方法研究，包括 对TGD社区成员进行深入的定性访谈(N=40)；与TGD进行定量调查 社区成员(N=400)；与关键利益攸关方(基因组研究人员、TGD- 在职临床医生、伦理和法律学者、机构审查委员会成员)(N=32)；和3)召开 更大规模的峰会，以制定指导方针。我们将使用一个由一个 具有在TGD社区促进对话以确定优先事项、解决冲突、 做出决策，制定指导方针和建议，并广泛传播到政策、研究中 该项目将涉及所有四个NHGRI/ELSI优先研究领域的各个方面。我们的 工作将产生指导关于性别认同的基因组研究的标准和最佳做法。我们的董事会， 工作组和首脑会议与会者将作为国家网络发挥作用，提供持续的协商， 指导和领导TGD人群的基因组研究。

PROJECT SUMMARY Transgender and gender diverse (TGD) people—individuals whose gender identity differs from the sex they were assigned at birth—comprise approximately 1.6% of U.S. adults. Gender identity represents one’s concept of self and can be the same as one’s sex assigned at birth (cisgender), different from one’s sex assigned at birth (transgender), or beyond traditional classifications (non-binary, gender fluid, 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 and 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. We aim 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, and not on 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 racially, ethnically, professionally and geographically diverse Executive Stakeholder Board and workgroups consisting of TGD 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: 1) assess gaps in the literature and define ELSI themes for further exploration and inclusion in the Guidelines; 2) conduct a sequential mixed-methods study comprised of in-depth qualitative interviews with TGD community members (N=40); quantitative surveys with TGD community members (N=400); and listening sessions with key stakeholders (genomics researchers, TGD- serving clinicians, ethical and legal scholars, institutional review board members) (N=32); and 3) convene a larger Summit to develop the Guidelines. We will use a formal process of deliberative engagement led by a facilitator with experience in facilitated dialogue in TGD communities to identify priorities, resolve conflicts, make decisions, develop guidelines and recommendations, and widely disseminate these to policy, research and TGD communities This project will address aspects of all four NHGRI/ELSI priority research areas. Our work will result in standards and best practices to guide genomic research about gender identity. Our Board, Workgroups and Summit participants will function as a national network to provide ongoing consultation, guidance, and leadership on genomics research with TGD populations.