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(IFGeneRA)H3Africa ELSI合作中心的个人发现旨在 逐步建立证据基础，为针对具体情况和国家的发展奠定基础 与为非洲基因组研究归还个人基因研究成果有关的政策，并作为 H3非洲联盟的伦理资源。我们将a)从广泛的 三个非洲国家农村和城市环境中的利益攸关方，b)将以下方法结合起来 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 我们在大陆调查中产生的结果将在整个过程中管理给相关利益相关者 非洲。在项目1中，我们将回顾研究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。在该项目中，我们还将探索传统和 现代遗传知识，并制作一部关于我们作为社区一部分的研究的视频纪录片 参与活动。在项目2中，我们将进行一项前瞻性研究，以探讨人们的期望和 一组健康对照和患者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研究。这项研究涉及 参加以艾滋病毒/艾滋病为重点的基因组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。在该项目中，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。我们将把戏剧作为一种 与参与研究的社区成员讨论我们工作的伦理方面的方法。在项目3中， 我们将重点探讨与决定反馈调查结果有关的实际和规范考虑因素 非洲基因组学研究。第一步将结合医学遗传学、生物信息学和健康学的方法 经济学，以产生对非洲讨论结果反馈的范围的实际洞察。步调一致 2我们将对描述对(不)反馈的义务的伦理文献进行规范的伦理分析 低收入和中等收入非洲国家研究人员的个人基因发现。在步骤3中，我们将 借鉴三个项目所有阶段的调查结果，开发一项在线大陆调查，探索 对与个体基因研究反馈有关的实际和伦理考虑采取更广泛的方法 结果。