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.

项目概要 跨性别者和性别多样化 (TGD) 人群——性别认同与其实际性别不同的个人 出生时就被分配——约占美国成年人的 1.6% 性别认同代表了一个人的概念。 自己的性别，可以与出生时指定的性别相同（顺性别），也可以与出生时指定的性别不同 出生（跨性别），或超越传统分类（非二元、性别流动、性别多样化）。 人口承受着身心健康不平等的沉重负担，并被指定为 NIH 人口健康差异最近生物样本库的爆炸式增长，以及更常规的性别收集。 身份数据并提供了研究可能的基因组与性别身份关联的机会。 研究可以确认性别认同，或用于病态化和歧视，限制获得护理的机会，或 我们的目标是引导该领域的发展，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时间敏感的需求，以告知如何收集基因组数据， 进行分析和报告，以造福不同的 TGD 人群并促进科学理解。 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/族裔群体排除在行为和报告之外 与 和 合作，开展影响这些人群并进一步具体化刻板印象和耻辱的研究。 由种族、民族、专业和地域多元化的执行利益相关者委员会指导， 由 TGD 社区成员、倡导者、信徒以及伦理、法律和基因组学组成的工作组 和健康公平学者，我们将探讨研究基因组学的潜在风险和益处的观点 我们将共同：1）评估文献中的差距并定义 ELSI 主题。 进一步探索纳入指南；2) 进行连续的混合方法研究，包括： 对 TGD 社区成员进行深入的定性访谈（N=40）； 社区成员（N=400）；以及与主要利益相关者（基因组研究人员、TGD- 现任道德和法律学者、机构审查委员会成员）（N=32）；以及 3) 召开 我们将通过由一个更大规模的峰会来制定指导方针。 协调员，在促进 TGD 社区对话以确定优先事项、解决冲突、 做出决定，制定指导方针和建议，并将其广泛传播到政策、研究 和 TGD 社区 该项目将解决 NHGRI/ELSI 的所有四个优先研究领域的各个方面。 我们的工作将产生最好的标准和实践来指导有关性别认同的基因组研究。 工作组和峰会参与者将作为一个全国网络提供持续的咨询、 对 TGD 人群基因组学研究的指导和领导。