What's the Harm? Harms in Research With Adults With Intellectual Disability
What's the Harm? Harms in Research With Adults With Intellectual Disability
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DOI：
10.1352/1944-7558-122.1.78
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发表时间：
2017-01-01
影响因子：
2.1
通讯作者：
Olick, Robert S.
中科院分区：
文献类型：
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作者：
McDonald, Katherine E.;Conroy, Nicole E.;Olick, Robert S.
科学进步可以改善有智力残疾的成年人的生活，然而对参与研究可能造成伤害的担忧阻碍了科学进步。什么是有害的可能是主观的，利益相关者对伤害的看法可能各不相同。我们研究了研究事件对智力残疾成人、家庭成员和朋友、残疾服务提供者、研究人员和机构审查委员会成员的危害。我们发现了相当大的差异。例如，智力残疾的成年人认为被排除在研究之外更有害，但大多数社会心理伤害没有其他伤害那么严重。所有利益相关者都同意，让别人来做参与决策是有害的。研究结果提供了对成人智力残疾的危害概念和伦理研究的见解。
Scientific advances can improve the lives of adults with intellectual disability, yet concerns that research participation may impose harm impede scientific progress. What counts as harmful can be subjective and perceptions of harm may vary among stakeholders. We studied perspectives on the harmfulness of research events among adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board members. We found considerable variance. For example, adults with intellectual disability see exclusion from research as more harmful, but most psychosocial harms as less significant than others. All stakeholders agree that having someone else make the participation decision is harmful. Findings provide insights into the concept of harm and ethical research with adults with intellectual disability.