Stigma in African genomics research on Schizophrenia and Rheumatic Heart Disease

 描述（由申请人提供）：非洲的基因组学研究提出了一系列伦理问题。基因组学知识与疾病污名化之间的关系是一个研究不足的问题。污名化可能是基因组学研究可能对个人和群体造成伤害的方式之一，但在非洲或其他地方，人们对这一挑战并没有很好的理解。该项目旨在探讨基因组研究与南非两种疾病，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为精神分裂症和风湿性心脏病的患者所经历的内部耻辱的因果关系。目标二：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集团成员的个人对南非西开普省精神分裂症和风湿性心脏病相关的结构性耻辱感的潜在影响的信念。在本项目的第一阶段，我们将研究被诊断患有这两种疾病的患者的内部耻辱经历。在第1阶段，我们将1）使用精神疾病内化污名量表（ISMIS）为每位参与者建立内化污名的基线测量，2）对总共120名amaXhosa患者（每种疾病60名）进行焦点小组讨论（FGD），3）对10%随机样本（n=12）的患者组进行半结构化访谈。在FGD期间，我们将给参与者描述不同程度的遗传因果关系的小插曲，并在小组中讨论这些。在该项目的第二阶段，我们将在最多50个半结构化访谈中研究更多结构性耻辱的组成部分，访谈对象包括南非精神分裂症或风湿性心脏病患者的护理人员、家庭成员、医疗保健专业人员和患者利益集团成员。研究将涉及目前正在南非西开普省进行的两个H3非洲基因组研究项目的amaXhosa参与者。该项目将是第一个明确调查非洲疾病耻辱感与遗传学之间关系的项目，也是第一个研究风湿性心脏病耻辱感的项目。我们的研究结果将有助于了解对污名的担忧如何影响非洲基因组研究治理的决策。

 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.