Evaluating community perceptions and ethical considerations in genetics research in small scale populations

评估小规模人群遗传学研究中的社区认知和伦理考虑

• 批准号: 10453380
• 负责人: Anne C. STONE
• 金额: $ 31.06万
• 依托单位: ARIZONA STATE UNIVERSITY-TEMPE CAMPUS
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-08-15 至 2024-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10453380
• 关键词: Address; Africa; African; Americas; Anxiety; Attitude; Australia; Benefits and Risks; Codes of Ethics; Collaborations; Communities; Consent; Consent Forms; Data; Data Science; Demographic Factors; Development; Discrimination; Effectiveness; Ensure; Ethics; European; Focus Groups; General Population; Genetic; Genetic Research; Genetic Structures; Genetic study; Genomics; Guidelines; Human; Indigenous; Individual; Interview; Kenya; Knowledge; Linguistics; Literature; Measures; Minority Groups; Modeling; Monitor; Motivation; Native-Born; Participant; Perception; Persons; Play; Population; Prevalence; Privacy; Process; Recording of previous events; Regulation; Religion and Spirituality; Research; Research Ethics; Research Ethics Committees; Research Personnel; Risk; Role; Societies; Structure; Suggestion; Testing; Urban Community; Variant; Work; community engagement; data management; demographics; effectiveness evaluation; expectation; genome sciences; geographic population; human subject; novel; personalized medicine; preference; rare variant; success

PROJECT SUMMARY Historically, minority populations and indigenous peoples have borne the brunt of poorly implemented regulations to protect human subjects in research. As genomic research expands to be more inclusive of global diversity, indigenous perspectives about genetic research and data management should be considered, and the success of dissemination efforts to participants should be evaluated. Research on participant perspectives on genomic research in Africa that aim to dissect current governance and consent models demonstrate population specific engagement is necessary to decipher preferences. In Kenya, where participation in genetic research is amongst the highest in Africa, it is also one of the most understudied for participant perspectives amongst researchers and participants from small scale societies and urban communities. Consent and governance models should be built on participant perspectives which offer culturally relevant motivations that local research ethics committees can use to better address consent documents and research processes. Our proposed study will address whether and how Western ethical practices used in genetic studies accurately align (or fail to align) with the understandings, attitudes, and perceptions of the Turkana, Borana, Rendille, and Samburu pastoral populations of northern Kenya. Ongoing genetic work by our group has characterized the evolutionary history and genetic structure among and between these groups, and this unique relationship facilitates the opportunity to explore ethical practices and concerns. Specifically, we have three aims that will be assessed across all four populations. First, we will assess the effectiveness of dissemination efforts and materials by determining the level of understanding of genetics research using pre- and post-dissemination assessments. Second, we will identify and compare attitudes and perceptions towards genetics and genomic research. The third aim will characterize in-depth views on privacy, consent, data use, and governance of data. We will test the generalizability of these results to a novel population in Kenya so that we may observe how other populations and researchers may use these data. The growing field of research ethics has produced many ethical codes, suggestive guidelines to work with small scale populations, and perspectives of Western populations and indigenous populations from the Americas and Australia detailing the concerns elicited by genetic studies. Mostly, these fail to include the perspectives of African populations and also fail to determine the impact of the work itself. The research proposed here will provide a framework for collaborating with small indigenous populations, generate new knowledge about the success of dissemination efforts and document specific ethical concerns and perspectives of the Turkana, Borana, Rendille and Samburu.

项目摘要 从历史上看，少数民族和土著人民在执行不力的情况下首当其冲， 在研究中保护人类受试者的法规。随着基因组研究的扩展， 应考虑到多样性、土著人对遗传研究和数据管理的看法， 应评估向参与者传播工作的成功情况。参与者视角研究 旨在剖析当前治理和同意模式的非洲基因组研究表明， 要解读偏好，就必须有针对具体人群的参与。在肯尼亚， 研究是非洲最高的研究之一，也是参与者观点研究最不足的研究之一 在来自小规模社会和城市社区的研究人员和参与者中。同意和 治理模式应建立在参与者的观点之上，这些观点提供了与文化相关的动机， 地方研究伦理委员会可以使用它来更好地处理同意文件和研究过程。我们 拟议的研究将解决是否以及如何在遗传学研究中准确使用西方伦理实践 与图尔卡纳人、博拉纳人、伦迪勒人的理解、态度和看法保持一致（或不一致）， 肯尼亚北方的桑布鲁牧民。我们小组正在进行的遗传学工作已经描述了 这些群体之间的进化历史和遗传结构，以及这种独特的关系， 促进探索道德实践和问题的机会。具体来说，我们有三个目标， 在所有四个人群中进行评估。首先，我们将评估传播工作的有效性， 通过使用传播前和传播后确定对遗传学研究的理解水平， 评估。其次，我们将确定和比较对遗传学和基因组学的态度和看法。 research.第三个目标是对隐私、同意、数据使用和数据治理的深入看法。 我们将测试这些结果在肯尼亚的新人群中的普遍性，以便我们可以观察如何 其他人群和研究人员可能会使用这些数据。不断增长的研究伦理学领域产生了 许多道德规范，小规模人群工作的建议性指导方针，以及西方的观点， 美洲和澳大利亚的土著居民和土著居民的报告， 基因研究。大多数情况下，这些都没有包括非洲人口的观点，也没有确定 工作本身的影响。这里提出的研究将提供一个框架， 土著居民，产生关于传播工作成功的新知识， Turkana、Borana、Rendille和Samburu的具体伦理问题和观点。