Genetic Privacy and Identity in Sexual and Gender Minorities: GetPrISM

性少数群体的遗传隐私和身份：GetPrISM

• 批准号: 10005405
• 负责人: ELLEN WRIGHT CLAYTON
• 金额: $ 21.25万
• 依托单位: VANDERBILT UNIVERSITY MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-01 至 2022-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10005405
• 关键词: Academic Medical Centers; Address; Advocate; Affect; Attitude; Behavioral; Biological Factors; Characteristics; Clinic; Collection; Communities; Complex; Country; Data; Data Analyses; Educational Materials; Enrollment; Ensure; Environment; Ethics; Focus Groups; Fright; Gays; Gender Identity; Genes; Genetic; Genetic Identity; Genetic Privacy; Genetic Research; Genetic Variation; Genomics; Goals; Health; Healthcare; Heritability; Individual; Leadership; Methods; Minority; Minority Groups; Participant; Phenotype; Pilot Projects; Play; Policies; Politics; Population; Privacy; Protocols documentation; Qualitative Research; Recording of previous events; Reporting; Research; Research Personnel; Role; Sex Orientation; Sexual and Gender Minorities; Site; Societies; Time; Translations; United States National Institutes of Health; cohort; data sharing; ethical legal social implication; evidence base; experience; genomic data; health disparity; improved; member; minority communities; precision medicine; programs; research in practice; risk perception; sexual minority; social; social stigma; tool; trait; willingness

Sexual and gender minorities (SGMs) experience significant disparities in health and health care. These inequities result from complex interactions among social, political, environmental, and genomic factors, all of which must be understood if we are to address these disparities. The research needed to understand the health issues faced by SGM populations will often require analysis of large collections of individual phenotypic and behavioral information, community characteristics, and large-scale genomic data. Some investigators may seek to explore hypotheses that sexual orientation and gender identity are complex traits with a polygenic, but non- determinative component and that those genetic components may contribute to health disparities. These research strategies, which analyze large amounts of genomic and other data, represent a dramatic change from earlier research practices in their implications for research participants. The history of research involving SGMs has been particularly controversial, especially in the wake of the ultimately unsuccessful search for a “gay gene” in the 1990s. Some writers at the time supported the search for genetic contributions to sexual orientation in order to decrease stigma. Others opposed this research for fear that the results would be used to discriminate against SGMs. Even now, surprisingly little is known about what SGMs think about research involving genetics and sexual orientation and gender identity (SOGI) data or whether they would be willing to participate in such research. A recent study reported that SGMs, in a hypothetical setting, expressed greater willingness than others to take part in the All of Us Cohort Program, whereas a comprehensive review cited several studies showing that SGMs were more reluctant to enroll in genomics research due to fears of misinterpretation. Identifying and addressing these concerns is crucial not only to protecting/representing the SGM community, but also to inviting participation of these groups to ensure their access to precision medicine. The overarching goal of this application is to investigate perspectives on research using genetic and SOGI data among a diverse group of self-identifying SGM community members. We will use a qualitative approach to examine the following two aims: 1) To identify and understand the range of perspectives about research involving genetic and SOGI data, including perceptions of risks, harms, and benefits to individuals of conducting research on biological factors related to health problems as well as related to sexual orientation and gender identity; and 2) To characterize SGM attitudes and opinions about the appropriateness of genetic research using SOGI data and the issues they would want to see addressed and safeguards they would require before participating in research. This project will allow us to refine strategies for use at other sites to enhance the generalizability of our findings and to develop a robust evidence base for developing ethically acceptable research protocols that will identify and address the health disparities affecting SGMs.

性少数群体（SGM）在健康和保健方面存在显着差异。这些 不平等是由社会、政治、环境和基因组因素之间复杂的相互作用造成的，所有这些因素 如果我们要解决这些差异，就必须理解这一点。了解健康状况所需的研究 SGM 群体面临的问题通常需要对大量个体表型和 行为信息、社区特征和大规模基因组数据。一些调查人员可能会寻求 探索性取向和性别认同是具有多基因但非非遗传性的复杂特征的假设 决定性因素，而这些遗传因素可能会导致健康差异。这些 分析大量基因组和其他数据的研究策略代表了从 早期的研究实践对研究参与者的影响。 SGM 的研究历史 特别是在寻找“同性恋基因”最终失败之后，引起了很大的争议 20世纪90年代。当时的一些作家支持寻找基因对性取向的贡献 以减少耻辱感。其他人反对这项研究，因为担心结果会被用来歧视 反对 SGM。令人惊讶的是，即使是现在，人们对 SGM 对涉及遗传学的研究的看法仍知之甚少。 以及性取向和性别认同（SOGI）数据，或者他们是否愿意参与此类活动 研究。最近的一项研究报告称，在假设的环境中，SGM 比其他人表达了更大的意愿 参加“我们所有人队列计划”，而一项综合评论引用了几项研究表明 由于担心被误解，SGM 更不愿意参与基因组学研究。识别和 解决这些问题不仅对于保护/代表 SGM 社区至关重要，而且对于邀请 这些群体的参与，以确保他们获得精准医疗。 此应用程序的总体目标是调查使用遗传和 SOGI 数据进行研究的观点 一群自我认同的 SGM 社区成员。我们将使用定性方法 检查以下两个目标： 1）识别和理解涉及研究的观点范围 遗传和 SOGI 数据，包括对进行研究的个人的风险、伤害和益处的看法 与健康问题以及性取向和性别认同相关的生物因素；和 2) 描述 SGM 对使用 SOGI 数据进行基因研究的适当性的态度和意见 以及他们希望看到解决的问题以及他们在参与之前需要的保障措施 研究。该项目将使我们能够完善在其他站点使用的策略，以增强我们的通用性 调查结果并为制定伦理上可接受的研究方案建立强有力的证据基础，该方案将 识别并解决影响 SGM 的健康差异。