Stakeholder Views on Intellectual Disability Research Ethics

利益相关者对智力障碍研究伦理的看法

• 批准号: 8609501
• 负责人: Katherine Elizabeth McDonald
• 金额: $ 22.13万
• 依托单位: SYRACUSE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2013
• 资助国家: 美国
• 起止时间: 2013-03-01 至 2016-02-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8609501
• 关键词: Adult; Agreement; Area; Attitude; Belief; Cognitive; Communities; Comparative Study; Consensus; Development; Dimensions; Equilibrium; Ethics; Face; Feeling; Generations; Goals; Health; Incentives; Individual; Institutional Review Boards; Intellectual functioning disability; Intervention; Interview; Knowledge; Lead; Light; Measures; Mental Health; Methods; Outcome; Participant; Patient Self-Report; Peer Review; Persons; Policies; Population; Public Health; Published Comment; Research; Research Ethics; Research Personnel; Risk; Science; Services; Suggestion; Testing; Translations; Uncertainty; Vulnerable Populations; community living; comparative; experience; health disparity; innovation; insight; instrument; knowledge base; member; physical conditioning; public health relevance; research study; social; therapy development; tool

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.

描述（由申请人提供）： 智障成人 (ID) 面临着显着的身心健康差异。道德挑战可能会阻碍他们参与研究，并阻碍减少这些健康差异的科学进步。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——在智障成年人参与研究方面具有显着的利害关系。人们对这些利益相关者对于如何在道德上将智力障碍成年人纳入研究的看法知之甚少。扩大这一知识库，特别是通过邀请意见很少受到审查的群体的意见，对于帮助科学界设计和部署敏感和响应性的实践以及鼓励研究以减少紧迫的差异至关重要。我们的长期目标是鼓励对患有智力障碍的成年人进行研究时对伦理和社会层面敏感的科学，并更加包容这一人群。我们的目标是： 1. 定性研究智障成年人、向智障成年人提供非正式支持的人员以及向智障成年人提供服务的人员对智障成年人参与自我报告研究的看法（研究1）； 2. 针对患有智力障碍的成年人参与自我报告研究的关键问题，创建易于使用、有效的观点工具（研究 2）； 3. 定量研究智力障碍成年人、为智力障碍成年人提供非正式支持的人员、为智力障碍成年人提供服务的人员、智力障碍研究人员和 IRB 成员对研究风险、研究实践（包括保障措施和激励措施）的看法，参与自我报告研究的好处和态度（研究 3）。这些研究结果将产生重大的伦理和公共卫生影响，并有可能鼓励更多的智障人士参与研究，从而带来积极的健康结果。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，因为还没有研究使用混合方法来调查多方利益相关者对将患有智力障碍的成年人纳入研究的伦理观点。

项目成果

Facilitating the inclusion of adults with intellectual disability as direct respondents in research: Strategies for fostering trust, respect, accessibility and engagement.

促进智力障碍成年人作为直接受访者参与研究：促进信任、尊重、可及性和参与的策略。

• 发表时间: 2022-01
• 作者: McDonald, Katherine E;Gibbons, Colleen;Conroy, Nicole;Olick, Robert S
• 通讯作者: Olick, Robert S

Is It Worth It? Benefits in Research With Adults With Intellectual Disability.

这值得么？

• 发表时间: 2016-12
• 作者: McDonald, Katherine E;Conroy, Nicole E;Olick, Robert S;Project ETHICS Expert Panel
• 通讯作者: Project ETHICS Expert Panel

"You can't be cold and scientific": community views on ethical issues in intellectual disability research.

“你不能既冷酷又科学”：社区对智力障碍研究伦理问题的看法。

• 发表时间: 2015-04
• 作者: McDonald, Katherine E;Schwartz, Nicole M;Gibbons, Colleen M;Olick, Robert S
• 通讯作者: Olick, Robert S

A quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?

对智力障碍成年人参与研究的态度的定量研究：利益相关者同意吗？

• 发表时间: 2018
• 作者: McDonald, Katherine E;Conroy, Nicole E;Olick, Robert S;Project ETHICS Expert Panel
• 通讯作者: Project ETHICS Expert Panel

Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability.

安全是情人眼中的事吗？

• 发表时间: 2016-12
• 作者: McDonald, Katherine E;Conroy, Nicole E;Kim, Carolyn I;LoBraico, Emily J;Prather, Ellis M;Olick, Robert S
• 通讯作者: Olick, Robert S