Stakeholder Views on Intellectual Disability Research Ethics

描述（由申请人提供）：智力残疾（ID）的成年人面临着显着的身体和心理健康的差距。伦理挑战可能会阻碍他们参与研究，并阻碍科学进步，以减少这些健康差距。五个核心群体-成人ID，个人谁提供非正式的支持成人ID，个人谁提供服务的成人ID，ID研究人员和机构审查委员会（IRB）的成员-有值得注意的利益相关者参与研究的成人ID。鲜为人知的是，这些利益相关者的意见，如何在道德上包括成人ID的研究。增加这一知识基础，特别是邀请其意见很少受到审查的群体提供投入，对于帮助科学界设计和部署敏感和反应迅速的做法以及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ID成人研究的伦理和社会层面敏感的科学，并对这一人群更具包容性。我们的目标是：1.定性研究的意见，成年人与ID，人谁提供非正式支持的成年人与ID，人谁提供服务的成年人与ID的参与自我报告研究（研究1）; 2。创建可访问的，有效的工具，对关键问题的意见，在参与成人ID的自我报告研究（研究2）;和3。定量研究ID成人，为ID成人提供非正式支持的人，为ID成人提供服务的人，ID研究人员和IRB成员对研究风险，研究实践（包括保障措施和激励措施），利益和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意义，有可能鼓励ID患者更多地参与可能导致积极健康结果的研究。该项目将产生各种研究产品，包括同行评审的文章，研究简报和演示文稿。它还将阐明研究、干预措施开发和测试以及政策方面的前进道路。这项研究具有高度创新性，因为没有研究使用混合方法来调查多利益相关者对研究中ID成人的道德包容的观点。

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.