Prospective analysis of stakeholder expectations and preferences for Feedback of Individual Genetic Findings in genomics research in Botswana and South Africa

博茨瓦纳和南非基因组学研究中利益相关者对个体遗传发现反馈的期望和偏好的前瞻性分析

• 批准号: 10198977
• 负责人: Jantina De Vries
• 金额: $ 9.79万
• 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 2024-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10198977
• 关键词: Adolescent; Adult; Affect; Africa; African; Attitude; Back; Botswana; Cameroon; Categories; Child; Childhood; Clinical; Communicable Diseases; Communities; Complex; Country; Diagnostic; Disclosure; Disease; Enrollment; Ethics; Ethics Committees; Feedback; Focus Groups; Genetic; Genetic Research; Genomics; HIV; Health Personnel; Health Professional; Individual; Intervention; Interview; Laboratories; Mediating; Medical Genetics; Mental disorders; Methods; Nature; Parents; Participant; Policies; Policy Developments; Prospective Studies; Psychoses; Publishing; Randomized; Regulation; Research; Research Personnel; Research Project Grants; Research Proposals; Retrospective Studies; Review Committee; Sampling; Schizophrenia; Science; South Africa; Surveys; United States; cohort; design; evidence base; expectation; feeding; interest; member; novel; patient population; preference; prospective; psychiatric genomics; social implication

Project Summary IFGENERA Project 2 One important question in discussions around the feedback of individual genetic findings generated in the context of genomics research, relates to stakeholder expectations of and preferences for which findings are to be fed back, to and by whom, and when. A second question relates to what professionals involved in the regulation of science in Africa think about opportunities for and challenges in feeding back individual genetic research findings. In this project, we propose to conduct two studies that investigate these issues in two different stakeholder communities in Botswana and South Africa: genomics research participants and science regulators. Key questions that we will investigate relate to what people may want to know, why they want to know it, and how they would like to receive such results. Other questions relate to whether research results need to be verified in a diagnostic laboratory, and how important it is that participants who receive results, have access to the interventions that would mediate the effects of the genetic finding. Our study aims are: Aim 1: To explore expectations and preferences for feedback of individual genetic research findings with (parents of) participants involved in genomics research in Botswana and South Africa. Under this aim, we will conduct deliberative Focus Group Discussions with research participants in genomics research. This component of our study will take place in Gaborone, Botswana and Cape Town, South Africa, using three ongoing genomics research projects. In Botswana, we will involve parents of children and adolescents involved in the H3Africa CafGen project. In South Africa, we will involve parents of children and adolescents involved in genomics research on neurodevelopmental conditions, and adults involved in psychiatric genomics research on psychiatric disorders (schizophrenia and bi-polar disorder). Aim 2: To explore the views on feedback of individual pertinent and incidental genetic research results 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. Under this aim, we will 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. Specifically, this will involve interviews with healthcare providers, researchers, medical genetics professionals and members of ethics committees involved in genomics research.

项目概要 IFGENERA 项目 2 围绕个体遗传发现反馈的讨论中的一个重要问题 基因组学研究的背景，涉及利益相关者对研究结果的期望和偏好 反馈给谁、由谁以及何时反馈。第二个问题涉及哪些专业人士参与 非洲科学监管思考反馈个体遗传的机遇和挑战 研究结果。在这个项目中，我们建议进行两项研究，从两个方面调查这些问题 博茨瓦纳和南非的不同利益相关者社区：基因组学研究参与者和科学 监管机构。我们将调查的关键问题涉及人们可能想知道什么、为什么想知道 了解这一点，以及他们如何希望收到这样的结果。其他问题涉及研究结果是否 需要在诊断实验室进行验证，以及收到结果的参与者有多么重要 获得可调节基因发现影响的干预措施。我们的研究目标是： 目标 1：探索对个体基因研究结果反馈的期望和偏好 与参与博茨瓦纳和南非基因组学研究的参与者（的父母）。 在此目标下，我们将与基因组学研究参与者进行深思熟虑的焦点小组讨论 研究。我们研究的这一部分将在博茨瓦纳哈博罗内和南非开普敦进行， 使用三个正在进行的基因组学研究项目。在博茨瓦纳，我们将让儿童的父母和 参与 H3Africa CafGen 项目的青少年。在南非，我们将让儿童的父母和 参与神经发育状况基因组学研究的青少年，以及参与神经发育状况基因组学研究的成年人 精神疾病（精神分裂症和双相情感障碍）的精神基因组学研究。 目标2：探讨对个体相关和偶然的基因研究结果的反馈意见 与参与制定、实施和应用道德标准和政策的人们一起 返回博茨瓦纳和南非基因组学研究的个人研究结果。 在此目标下，我们将对参与开发、实施和实施的人员进行深入访谈。 在博茨瓦纳基因组学研究中应用道德标准和政策返还个人研究结果 和南非。具体来说，这将涉及对医疗保健提供者、研究人员、医疗人员的采访 参与基因组学研究的遗传学专业人士和伦理委员会成员。