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

跨性别/形成基因组学：涉及跨性别和性别多样化人群的研究指南

• 批准号: 10728997
• 负责人: Kellan Enstad Baker
• 金额: $ 85.34万
• 依托单位: ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-20 至 2027-07-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10728997
• 关键词: Address; Adult; Advocate; Ally; Area; Benefits and Risks; Birth; Categories; Classification; Collaborations; Collection; Communication; Communities; Complex; Consultations; Data; Data Collection; Decision Making; Development; Disclosure; Discrimination; Disparity population; Ethics; Ethnic Origin; Ethnic Population; Exclusion; Explosion; Female; Gender; Gender Identity; Genes; Genetic; Genomics; Geography; Goals; Guidelines; Harm Reduction; Health; Health Services Accessibility; Individual; Institutional Review Boards; Interview; Knowledge; Laws; Leadership; Legal; Liquid substance; Literature; Measures; Mental Health; Methodology; Methods; Modeling; National Human Genome Research Institute; Participant; Pathology; Patient Self-Report; Persons; Phase; Policies; Population; Population Heterogeneity; Process; Race; Recommendation; Reporting; Reproductive Technology; Research; Research Personnel; Research Priority; Review Literature; Risk; Scanning; Scientific Advances and Accomplishments; Sex Orientation; Shapes; Standardization; Stereotyping; Strategic vision; Surveys; Techniques; Technology; Terminology; Thinking; Time; United States National Institutes of Health; Voice; Work; biobank; cisgender; community engagement; conflict resolution; design; diverse data; ethical, legal, and social implication; experience; gender affirmation; gender confusion; gender diversity; gender expression; gender fluid; genetic analysis; genetic variant; genomic data; health care delivery; health disparity populations; health equity; health inequalities; male; member; nonbinary; people of color; physical conditioning; polygenic risk score; precision medicine; sex; sex assigned at birth; social stigma; symposium; transgender; unethical

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.

项目摘要 跨性别和性别多样性（TGD）的人-个人的性别认同不同于他们的性别， 在出生时就被分配了，约占美国成年人的1.6%。性别认同代表一个人的概念 自我的性别，可以与一个人出生时的性别相同（顺性别），也可以与一个人出生时的性别不同。 出生（变性），或超越传统分类（非二元，性别流动，性别多样性）。TGD 人口不成比例地承受着身心健康不平等的负担， 美国国立卫生研究院的健康差距人口。最近生物库的爆炸式增长，以及更多常规的性别收集， 身份数据，并提供了一个机会，研究可能的基因组与性别认同的关联。等 研究可能会肯定性别认同，或被用于病态化和歧视，限制获得护理，或 影响生殖技术的使用。我们的目标是指导该领域，以实现利益最大化， 最大限度地减少此类研究的危害，并满足告知如何收集基因组数据的时间敏感需求， 分析和报告，以造福不同的TGD人群，并促进科学的理解。研究 基因组学和性别认同应该与TGD社区一起进行，而不是在TGD社区进行，以确保我们这样做 不重复过去的错误，例如，将种族/族裔群体排除在行为和报告之外， 研究影响到这些人群，并进一步具体化陈规定型观念和污名化。在与和 由一个种族、族裔、专业和地域多样化的执行利益攸关方理事会指导， 由TGD社区成员、倡导者、临床医生和伦理学、法律的和基因组学组成的工作组 和健康公平学者，我们将探讨研究基因组的潜在风险和好处的观点， 与性别认同的关系。我们将共同：1）评估文献中的差距，并确定ELSI主题， 进一步探索并纳入指南; 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）;对TGD进行定量调查 社区成员（N=400）;以及与关键利益相关者（基因组学研究人员，TGD- 在职临床医生、伦理和法律的学者、机构审查委员会成员）（N=32）;以及3）召开 更大的首脑会议，以制定准则。我们将使用一个正式的审议参与过程， 具有在TGD社区促进对话方面经验的促进者，以确定优先事项，解决冲突， 制定决策，制定指导方针和建议，并将其广泛传播到政策，研究， 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 这项工作将产生标准和最佳做法，以指导关于性别认同的基因组研究。我们的董事会， 工作组和首脑会议与会者将作为一个国家网络，提供持续的协商， 指导和领导TGD人群的基因组学研究。