Public Health, Food Studies, and Nutrition and the Burton Blatt Institute, Syracuse University, Syracuse, NY 13244, USA.
Am J Intellect Dev Disabil. 2012 Jul;117(4):263-74. doi: 10.1352/1944-7558-117.4.263.
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.
尊重是医学研究伦理准则的核心。科学界长期以来一直在争论，有时甚至不同意如何在针对智障和发育障碍成年人的研究中表现出尊重。为了阐明那些受影响最大的人的意见，作者研究了智障和发育障碍成年人对研究中尊重的看法。研究结果与残疾人权利的理念一致，并表明智障和发育障碍成年人对讨论有很大的贡献，他们重视参与，并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。讨论了其影响，包括如何将社区支持的价值观和偏好融入研究标准。
