Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden.
Eur J Hum Genet. 2009 Dec;17(12):1544-9. doi: 10.1038/ejhg.2009.87. Epub 2009 May 27.
During the past decade, various guidelines that imply a duty for researchers to disclose information obtained through research to participants have emerged. The character and extent of this obligation have been debated extensively, with much attention devoted to the decisiveness of the validity and utility of the results in question. The aim of this paper is to argue that individual results from research on materials stored in large-scale biobanks, consisting of samples taken within the healthcare system or of altruistically donated materials, should not be returned. We will defend the thesis that medical research on these biobanks should be viewed as a collective project to improve public health, and that available resources should be utilized to pursue this goal. We argue that there is a need for a change of perspectives. Medical research should not primarily be viewed as a danger that individuals must be protected from, but rather be recognized as constituting a necessary defense against current and future diseases. Research that bears the prospect of advancing medicine and that can be carried out at no risk to individuals should be endorsed and facilitated. This calls for a shift of focus from autonomy and individual rights toward collective responsibility and solidarity.
在过去的十年中,出现了各种指南,暗示研究人员有责任向参与者披露通过研究获得的信息。这项义务的性质和程度已经被广泛讨论,其中很多关注的焦点是所涉及的结果的有效性和实用性的决定性。本文的目的是论证,不应该返还存储在大型生物库中的材料的研究中的个体结果,这些生物库包括在医疗保健系统中采集的样本或出于利他目的捐赠的材料。我们将捍卫这样的论点,即对这些生物库的医学研究应该被视为改善公共卫生的集体项目,应该利用现有资源来实现这一目标。我们认为需要改变观点。医学研究不应该主要被视为个人必须防范的危险,而应该被视为对当前和未来疾病的必要防御。应该支持和促进那些有望推进医学并对个人没有风险的研究。这需要从自主和个人权利向集体责任和团结转移焦点。