Stakeholder Views on Intellectual Disability Research Ethics

描述(由申请人提供)：智障成年人(ID)面临着严重的身心健康差距。伦理挑战可能会阻碍他们被纳入研究，并阻碍减少这些健康差距的科学进步。五个核心群体--智障成年人、为智障成年人提供非正式支持的个人、为智障成年人提供服务的个人、智障研究人员和机构审查委员会(IRB)成员--在智障成年人的研究参与中具有重要的利害关系。对于如何在伦理上将智障成年人纳入研究，这些利益相关者的意见知之甚少。增加这一知识库，特别是邀请意见很少被审查的团体提供意见，对于帮助科学界设计和部署敏感和反应灵敏的做法，并鼓励研究以减少紧迫的差距至关重要。我们的长期目标是鼓励对研究的伦理和社会层面敏感的科学，对患有ID的成年人和更具包容性的这一人群进行研究。本研究的目的是：1.定性研究成人智力障碍者、为智力障碍成年人提供非正式支持的人和为智力障碍成年人提供服务的人对智力障碍成年人参与自我报告研究的看法(研究1)；2.创建可访问的、有效的工具，就智力障碍成年人参与自我报告研究中的关键问题发表看法(研究2)；3.定量研究成人智力障碍者、为智力障碍成年人提供非正式支持的人、为智力障碍成年人提供服务的人、智力障碍研究人员和IRB成员对研究风险、研究实践(包括保障和激励)、利益以及对参与自我报告研究的态度的看法(研究3)。这些发现将具有重大的伦理和公共卫生影响，有可能鼓励将ID患者更多地纳入可能导致积极健康结果的研究中。该项目将产生各种研究产品，包括同行评议的文章、研究简报和演示文稿。它还将阐明研究、干预开发和测试以及政策方面的前进道路。这项研究具有很高的创新性，因为没有研究使用混合方法来调查多个利益相关者对成人ID纳入研究的伦理纳入。

DESCRIPTION (provided by applicant): Adults with intellectual disabilities (ID) face significant physical and mental health disparities. Ethical challenges may discourage their inclusion in research and hinder scientific advancements to reduce these health disparities. Five core groups - adults with ID, individuals who provide informal support to adults with ID, individuals who provide services to adults with ID, ID researchers and Institutional Review Board (IRB) members - have noteworthy stakes in the research participation of adults with ID. Little is known about these stakeholders' opinions on how to ethically include adults with ID in research. Increasing this knowledge base, especially by inviting input from groups whose opinions are rarely examined, is critical to helping the scientific community devise and deploy sensitive and responsive practices and encouraging research to reduce pressing disparities. Our long-term goal is to encourage science that is sensitive to the ethical and social dimensions of research with adults with ID and more inclusive of this population. Our aims here are to: 1. Qualitatively study the views of adults with ID, persons who provide informal support to adults with ID, and persons who provide services to adults with ID on the participation of adults with ID in self-repor research (Study 1); 2. Create accessible, valid instruments of views toward key issues in the participation of adults with ID in self-report research (Study 2); and 3. Quantitatively study th views of adults with ID, persons who provide informal support to adults with ID, persons who provide services to adults with ID, ID researchers, and IRB members on research risks, research practices (including safeguards and incentives), benefits, and attitudes toward participation in self-report research (Study 3). The findings will have significant ethical and public health implications with the potential to encourage greater inclusion of people with ID in research that can lead to positive health outcomes. The project will generate a variety of research products including peer-reviewed articles, research briefs, and presentations. It will also shed light on paths forward in research, intervention development and testing, and policy. This research is highly innovative because no studies have used mixed methods to investigate multi-stakeholder perspectives on the ethical inclusion of adults with ID in research.