Freedman R I
School of Social Work, 264 Bay State Rd., Boston University, Boston, MA 02215, USA.
Ment Retard. 2001 Apr;39(2):130-41. doi: 10.1352/0047-6765(2001)039<0130:ECITCO>2.0.CO;2.
Researchers face challenges in balancing the demands of sound research methods and ethical standards in studies involving persons with mental retardation. While the autonomy of individuals must be respected, researchers also have an ethical responsibility to protect vulnerable individuals from social, psychological, or physical risks of research participation. Some individuals may face significant barriers in the research decision-making process due to cognitive limitations, lack of information and support, and limited experience and opportunities for exercising choice. The historical context of biomedical and behavioral research involving persons with mental retardation and current ethical issues related to informed consent and surrogate decision-making are examined. Implications for researchers and professionals are discussed, including ways to support individuals with mental retardation and their families in research decision-making.
在涉及智力迟钝者的研究中，研究人员在平衡可靠的研究方法要求与道德标准方面面临挑战。虽然个人的自主权必须得到尊重，但研究人员也有道德责任保护弱势群体免受参与研究带来的社会、心理或身体风险。由于认知限制、信息和支持不足以及行使选择权的经验和机会有限，一些人在研究决策过程中可能面临重大障碍。本文探讨了涉及智力迟钝者的生物医学和行为研究的历史背景以及与知情同意和替代决策相关的当前伦理问题。还讨论了对研究人员和专业人员的启示，包括在研究决策中支持智力迟钝者及其家庭的方法。
