"We Want Respect": Adults with Intellectual and Developmental Disabilities Address Respect in Research
"We Want Respect": Adults with Intellectual and Developmental Disabilities Address Respect in Research
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DOI：
10.1352/1944-7558-117.4.263
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发表时间：
2012-07-01
影响因子：
2.1
通讯作者：
McDonald, Katherine Elizabeth
中科院分区：
文献类型：
--
作者：
McDonald, Katherine Elizabeth
尊重是研究伦理准则的核心。科学界长期以来一直在辩论，有时不同意，如何在研究中表现出对智力和发育障碍成年人的尊重。为了阐明受影响最严重的人的声音，作者研究了患有智力和发育障碍的成年人对研究中尊重的看法。调查结果与残疾人权利的想法是一致的，表明有智力和发育障碍的成年人对讨论有很多贡献，他们重视参与，他们同意关注人权和尊严的呼吁。值得注意的是，参与者详细讨论了研究人员和参与者之间互动的性质。影响进行了讨论，包括如何注入社区支持的价值观和偏好的研究标准。
Respect is central to ethical guidelines for research. The scientific community has long debated, and at times disagreed on, how to demonstrate respect in research with adults with intellectual and developmental disabilities. To illuminate the voices of those most affected, the author studies the views of adults with intellectual and developmental disabilities on respect in research. Findings are consistent with disability rights' ideas and indicate that adults with intellectual and developmental disabilities have much to contribute to the discussion, that they value participating, and that they agree with calls to focus on human rights and dignity. Notably, participants spoke at lengths about the nature of interactions between researchers and participants. Implications are discussed, including how to infuse research standards with community-supported values and preferences.