Miller F A, Christensen R, Giacomini M, Robert J S
Department of Health, Policy, Management & Evaluation,University of Toronto, 155 College St, 4th Floor, Toronto, Ontario MST 3M6, Canada.
J Med Ethics. 2008 Mar;34(3):210-3. doi: 10.1136/jme.2006.020289.
Many research ethics guidelines now oblige researchers to offer research participants the results of research in which they participated. This practice is intended to uphold respect for persons and ensure that participants are not treated as mere means to an end. Yet some scholars have begun to question a generalised duty to disclose research results, highlighting the potential harms arising from disclosure and questioning the ethical justification for a duty to disclose, especially with respect to individual results. In support of this view, we argue that current rationales for a duty of disclosure do not form an adequate basis for an ethical imperative. We review policy guidance and scholarly commentary regarding the duty to communicate the results of biomedical, epidemiological and genetic research to research participants and show that there is wide variation in opinion regarding what should be disclosed and under what circumstance. Moreover, we argue that there is fundamental confusion about the notion of "research results," specifically regarding three core concepts: the distinction between aggregate and individual results, amongst different types of research, and across different degrees of result veracity. Even where policy guidance and scholarly commentary have been most forceful in support of an ethical imperative to disclose research results, ambiguity regarding what is to be disclosed confounds ethical action.
现在,许多研究伦理准则要求研究人员向参与研究的对象提供其参与研究的结果。这种做法旨在维护对人的尊重,并确保参与者不被仅仅当作达成目的的手段。然而,一些学者已开始质疑披露研究结果的普遍义务,强调披露可能带来的危害,并质疑披露义务的伦理依据,尤其是针对个体结果。支持这一观点的是,我们认为当前关于披露义务的基本原理并不能构成一项伦理命令的充分基础。我们审视了有关向研究参与者传达生物医学、流行病学和基因研究结果的义务的政策指导和学术评论,发现对于应披露什么以及在何种情况下披露,存在广泛的意见分歧。此外,我们认为对于“研究结果”这一概念存在根本性的混淆,特别是在三个核心概念方面:总体结果与个体结果之间的区别、不同类型研究之间的区别以及不同程度的结果准确性之间的区别。即使在政策指导和学术评论最有力地支持披露研究结果的伦理命令的情况下,关于应披露内容的模糊性也会使伦理行动变得混乱。