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（由适用提供）：非洲基因组学研究提出了许多道德问题。仍然可以理解的问题是基因组知识与疾病污名之间的关系。污名可能是基因组学研究对个人和人群有害的方式之一，但是在非洲或其他地方，这一挑战尚未得到很好的理解。该项目旨在探讨南非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。该项目采用一种混合方法研究方法来借鉴社会科学和心理学来追求以下目的：目标1：探索疾病遗传属性的潜在影响 南非西开普省诊断出患有精神分裂症和风湿性心脏病的患者经历的内部污名。目的2：探索代表患者护理人员，家庭成员，医疗保健专业人员以及患者利益小组成员的个人对疾病遗传属性的潜在影响对与精神分裂症和流变心脏病相关的结构性污名的潜在影响。我们将检查该项目的第1阶段中诊断出患有这两种状况的患者的内部污名经历。在第1阶段，我们将1）建立对每种参与的内部污名的基线测量，使用精神疾病量表（ISMIS），2）进行焦点小组讨论（FGD），总共120名Amaxhosa患者（每种疾病的60例）和3个Amaxhosa患者和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演算的小插曲，并在组中进行讨论。在该项目的第二阶段中，我们将在最多50次半结构化污名的组成部分，最多50次半结构化访谈，与患者护理人员，家庭成员，医疗保健专业人员以及涉及南非精神分裂症或风湿性心脏病的患者利益群体的成员。研究将涉及来自南非西开普省目前正在进行的两个H3AFRICA基因组研究项目的Amaxhosa参与者。该项目将是第一个明确研究非洲疾病污名与遗传学之间关系的项目，也是第一个研究与风湿性心脏病有关的污名的项目。我们的发现将有助于理解对污名的担忧如何影响对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