Ethical challenges and complexities of including people with intellectual disability as participants in research
Ethical challenges and complexities of including people with intellectual disability as participants in research
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DOI：
10.1080/13668250600876392
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发表时间：
2006-09-01
影响因子：
1.3
通讯作者：
Iacono, Teresa
中科院分区：
文献类型：
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作者：
Iacono, Teresa
无论是否知情，每个向研究伦理委员会提交提案的研究人员都是在威洛布鲁克研究和其他类似的臭名昭著的实验的阴影下进行的，这些实验是针对因认知能力有限和/或处于无能为力的地位而易受伤害的个体（例如战俘）（比彻，1966）。威洛布鲁克与本文的重点特别相关，因为智力残疾儿童在不知情的情况下感染了病毒性肝炎，并且从其父母那里获得的知情同意书的性质值得怀疑（比彻，1966）。对战俘所发生的类似恐怖的揭露是1949年《纽伦堡法典》和1964年《世界医学协会赫尔辛基宣言》的催化剂（世界医学协会，2004年）。今天，这一宣言继续成为各种政府机构提出的伦理准则的基础，如澳大利亚的国家健康和医学研究理事会（NHMRC）、美国的国立卫生研究院和英国的国家卫生服务局。这篇文章的目的是考虑涉及智力残疾人的研究的影响，一个弱势群体，伦理委员会的尝试，应用这些准则。探讨的问题是，委员会在决定和方法上是否变得越来越保守，有可能将至少一些智力残疾者排除在研究之外。
Knowingly or not, every researcher submitting a proposal to a research ethics committee does so in the shadow of the Willowbrook study and other similarly infamous experiments conducted with individuals who were vulnerable because of their limited cognitive capacity and/or being in a powerless position (eg, prisoners of war)(Beecher, 1966). Willowbrook is of particular relevance to the focus of this article because children with intellectual disability were infected with viral hepatitis without their knowledge, and the nature of the informed consent obtained from their parents was questionable (Beecher, 1966). Revelations of similar horrors that had occurred with prisoners of war were the catalysts for the development of the Nuremburg Code of 1949 and the World Medical Association Declaration of Helsinki in 1964 (World Medical Association, 2004). This declaration continues today to form the basis for ethical guidelines proposed by various government bodies, such as the National Health and Medical Research Council (NHMRC) in Australia, the National Institutes of Health in the United States, and the National Health Service in the United Kingdom. The aim of this article is to consider the implications for research involving people with intellectual disability–a vulnerable group–of ethics committees’ attempts to apply these guidelines. The issue explored is whether committees are becoming increasingly conservative in their decisions and approaches, with the potential to exclude at least some people with intellectual disability from research.