Stigma in African genomics research on Schizophrenia and Rheumatic Heart Disease

非洲精神分裂症和风湿性心脏病基因组学研究中的耻辱

• 批准号: 9249658
• 负责人: Jantina De Vries
• 金额: $ 8.37万
• 依托单位: UNIVERSITY OF CAPE TOWN
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-05-01 至 2019-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9249658
• 关键词: Africa; African; Area; Attention; Attenuated; Belief; Cardiovascular Diseases; Caregivers; Communicable Diseases; Diagnosis; Disadvantaged; Disease; Disease Pathway; Ensure; Ethical Issues; Ethics; Etiology; Family member; Focus Groups; Funding; Genetic; Genomics; Goals; Health Professional; Individual; Interest Group; Interview; Investigation; Justice; Knowledge; Literature; Measures; Mental Health; Mental disorders; Methodology; Methods; Participant; Patients; Phase; Population; Poverty; Prevention; Protocols documentation; Randomized; Research; Research Methodology; Research Project Grants; Rheumatic Heart Disease; Risk; Role; Sampling; Schizophrenia; Social Psychology; Social Sciences; South Africa; Structure; Work; experience; member; programs; public health relevance; social; social stigma; virtual

 DESCRIPTION (provided by applicant): Genomics research in Africa raises a host of ethical issues. An issue that remains understudied is the relation between genomics knowledge and disease stigma. Stigma may be one of the ways in which genomics research could be harmful to individuals and groups of people, but this challenge is not well understood, in Africa or elsewhere. This project seeks to explore the relationship between genomic research and two diseases, namely schizophrenia and rheumatic heart disease, in South Africa. The project employs a mixed methods research approach drawing on the social sciences and psychology to pursue the following aims: Aim 1: to explore the potential impact of genetic attribution of disease causation on internal stigma experienced by patients diagnosed with schizophrenia and rheumatic heart disease in the Western Cape, South Africa. Aim 2: to explore beliefs of individuals representing patient care-givers, family members, healthcare professionals, and members of patient interest groups about the potential impact of genetic attribution of disease causation on structural stigma associated with schizophrenia and rheumatic heart disease in the Western Cape, South Africa. We will examine internal stigma experiences of patients diagnosed with either of these two conditions in Phase 1 of this project. In Phase 1, we will 1) establish a baseline measure of internalized stigma for each participant using the Internalized Stigma of Mental Illness Scale (ISMIS), 2) conduct Focus Group Discussions (FGDs) with a total of 120 amaXhosa patients (60 for each disease) and 3) conduct semi-structured interviews with a 10% randomized sample (n=12) of the patient groups. During the FGDs we will give participants vignettes describing different degrees of genetic causality, and discuss these in the groups. In Phase 2 of the project, we will examine components of more structural stigma in a maximum of 50 semi-structured interviews with patient care-givers, family members, healthcare professionals and members of patient interest groups involved with either schizophrenia or rheumatic heart disease in South Africa. Research will involve amaXhosa participants from two H3Africa genomics research projects currently ongoing in the Western Cape of South Africa. This project will be the first to explicitly investigate the relation between disease stigma and genetics in Africa, and also the first to examine stigma in relation to rheumatic heart disease. Our findings will contribute to an understanding of how concerns about stigma may impact on decisions about the governance of genomic research in Africa.

 描述（由申请人提供）：非洲的基因组学研究引发了一系列伦理问题。仍有待研究的一个问题是基因组学知识与疾病耻辱感之间的关系。耻辱可能是基因组学研究对个人和人群造成伤害的方式之一，但在非洲或其他地方，这一挑战还没有得到很好的理解。该项目旨在探索南非的基因组研究与两种疾病（即精神分裂症和风湿性心脏病）之间的关系。该项目采用社会科学和心理学的混合方法研究方法，以实现以下目标： 目标 1：探索疾病遗传归因的潜在影响 南非西开普省被诊断患有精神分裂症和风湿性心脏病的患者所经历的内部耻辱的原因。目标 2：探讨代表患者护理人员、家庭成员、医疗保健专业人员和患者利益团体成员的个人对于疾病病因的遗传归因对南非西开普省精神分裂症和风湿性心脏病相关结构性耻辱的潜在影响的看法。我们将在该项目的第一阶段检查被诊断患有这两种疾病的患者的内部耻辱经历。在第一阶段，我们将 1) 使用精神疾病内在耻辱量表 (ISMIS) 为每个参与者建立内在耻辱的基线测量，2) 与总共 120 名 amaXhosa 患者（每种疾病 60 名）进行焦点小组讨论 (FGD)，3) 对患者组的 10% 随机样本 (n=12) 进行半结构化访谈。在 FGD 期间，我们将为参与者提供描述不同程度的遗传因果关系的小插图，并在小组中进行讨论。在该项目的第二阶段，我们将通过最多 50 次半结构化访谈来检查更多结构性耻辱的组成部分，采访对象包括南非的患者护理人员、家庭成员、医疗保健专业人员以及涉及精神分裂症或风湿性心脏病的患者利益团体成员。研究将涉及目前在南非西开普省正在进行的两个 H3Africa 基因组学研究项目的 amaXhosa 参与者。该项目将是第一个明确调查非洲疾病耻辱与遗传学之间关系的项目，也是第一个研究耻辱与风湿性心脏病相关的项目。我们的研究结果将有助于了解对耻辱的担忧如何影响非洲基因组研究治理的决策。

项目成果

RESEARCH ETHICS. Ethics review for international data-intensive research.

• DOI: 10.1126/science.aad5269
• 发表时间: 2016-03-25
• 期刊: Science (New York, N.Y.)
• 作者: Dove ES;Townend D;Meslin EM;Bobrow M;Littler K;Nicol D;de Vries J;Junker A;Garattini C;Bovenberg J;Shabani M;Lévesque E;Knoppers BM
• 通讯作者: Knoppers BM