Individual Findings in Genetic Research in Africa (IFGeneRA)

非洲基因研究的个体发现 (IFGeneRA)

• 批准号: 9386096
• 负责人: Jantina De Vries
• 金额: $ 49.98万
• 依托单位: UNIVERSITY OF CAPE TOWN
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-20 至 2022-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9386096
• 关键词: AIDS/HIV problem; Adult; Affect; Africa; African; Anthropology; Attention; Autistic Disorder; Back; Belief; Bioethics; Bioinformatics; Bipolar Disorder; Botswana; Cameroon; Child; Childhood; Communities; Consult; Country; Data Set; Development; Disease; Drama; Enrollment; Ethical Analysis; Ethics; Ethnography; Family; Feedback; Focus Groups; Fragile X Syndrome; Frequencies; Genetic; Genetic Counseling; Genetic Research; Genomics; HIV; Hereditary Disease; Income; Individual; Interview; Knowledge; Learning; Literature; Medical Genetics; Mental Retardation; Methodology; Methods; Modernization; Murder; Nature; Outcome Study; Parents; Participant; Pathogenicity; Patients; Policies; Policy Developments; Prospective Studies; Psychotic Disorders; Publications; Regulation; Reporting; Research; Research Personnel; Research Project Grants; Resources; Rural; Schizophrenia; Social Sciences; South Africa; Surveys; Testing; Variant; Work; base; cohort; cost; development policy; evidence base; expectation; experience; feeding; genetic disorder diagnosis; health economics; insight; low and middle-income countries; man; meetings; member; preference; rural setting; urban setting; virtual; working group

Project Summary - IFGeneRA OVERALL Component The Individual Findings in Genetics Research in Africa (IFGeneRA) H3Africa ELSI Collaborative Centre aims to progressively build an evidence base that forms the basis for context- and country specific development of policies relating to the return of individual genetic research results for African genomic research, and to act as an ethics resource for the H3Africa Consortium. We will a) collect empirical evidence from a wide range of stakeholders in both rural and urban settings in three African countries, b) combine methodologies from genetic counselling, social science, anthropology, bioinformatics, health economics and normative ethical analysis to progressively develop this evidence base, and c) test the wider acceptability and applicability of findings we generate in a continental survey that will be administered to relevant stakeholders throughout Africa. In Project 1, we will retrospectively investigate the effect of a genetic diagnosis on the lives of families affected by Fragile X in rural Cameroon. In that project, we will also explore the relation between traditional and modern genetic knowledge, and develop a video documentary about our study as part of our community engagement activities. In Project 2, we will conduct a prospective study to explore the expectations and preferences for feedback of individual genetic research findings in a cohort of healthy controls and patients involved in genomics research in Gaborone, Botswana and Cape Town, South Africa. The study involves (parents or guardians of) children and adults enrolled in genomics research projects focusing on HIV/AIDS, neurodevelopmental conditions and psychotic disorders. In that project, we will also conduct in-depth interviews with people involved in developing, implementing and applying ethical standards and policies for return of individual study results in genomics research in Botswana and South Africa. We will use drama as a means to discuss ethical aspects of our work with community members involved in our research. In Project 3, we will focus on exploring practical and normative considerations relating to decisions to feedback findings in African Genomics Research. Step 1 will combine methods from medical genetics, bioinformatics and health economics to generate practical insight into the scope of the feedback of findings discussion in Africa. In Step 2 we will conduct a normative ethical analysis of ethics literature describing obligations to (not) feedback individual genetic findings for researchers based in low- and middle income African countries. In Step 3 we will draw on the findings from all stages of the three projects to develop an online continental survey exploring wider approaches to practical and ethical considerations relating to the feedback of individual genetic research results.

项目摘要 - IFGeneRA 整体组件 非洲遗传学研究的个体发现 (IFGeneRA) H3Africa ELSI 合作中心的目标 逐步建立证据基础，为具体情况和国家具体发展奠定基础 与归还非洲基因组研究的个人基因研究结果有关的政策，并充当 H3Africa 联盟的道德资源。我们将 a) 从广泛的领域收集经验证据 三个非洲国家农村和城市环境中的利益相关者，b) 结合来自 遗传咨询、社会科学、人类学、生物信息学、卫生经济学和规范伦理学 分析以逐步发展这一证据基础，以及 c) 测试更广泛的可接受性和适用性 我们在大陆调查中得出的结果将在整个过程中向相关利益相关者进行管理 非洲。在项目1中，我们将回顾性调查基因诊断对家庭生活的影响 喀麦隆农村地区受到脆弱 X 病毒的影响。在这个项目中，我们还将探讨传统与传统之间的关系。 现代遗传知识，并作为我们社区的一部分制作关于我们研究的视频纪录片 参与活动。在项目2中，我们将进行一项前瞻性研究来探索期望和 在一组健康对照组和患者中对个体基因研究结果反馈的偏好 参与博茨瓦纳哈博罗内和南非开普敦的基因组学研究。该研究涉及 参与艾滋病毒/艾滋病基因组学研究项目的儿童和成人（的父母或监护人）， 神经发育状况和精神障碍。在那个项目中，我们还将深入进行 与参与制定、实施和应用道德标准和政策的人员进行访谈 返回博茨瓦纳和南非基因组学研究的个人研究结果。我们将用戏剧作为 是指与参与我们研究的社区成员讨论我们工作的道德方面。在项目3中， 我们将重点探索与反馈调查结果的决策相关的实际和规范性考虑因素 非洲基因组学研究。第 1 步将结合医学遗传学、生物信息学和健康学的方法 经济学，以对非洲调查结果讨论的反馈范围产生实际的见解。步调一致 2 我们将对描述反馈（而非）义务的道德文献进行规范性道德分析 为低收入和中等收入非洲国家的研究人员提供个体遗传发现。在第 3 步中，我们将 利用这三个项目各个阶段的调查结果，开发在线大陆调查，探索 与个体基因研究的反馈相关的实际和伦理考虑的更广泛方法 结果。