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The return of results of deceased research participants.

机译:已故研究参与者的结果返回。

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摘要

The death of a research participant raises numerous ethical and legal issues regarding the return of research results to related family members. This question is particularly acute in the context of genetic research since the research results from an individual may be relevant to each of the biological relatives. This paper first investigates the ethical and legal frameworks governing the return of a deceased participant's individual research results to his or her related family members. Then, it weighs the rights and interests of both the deceased individual and related family members in an attempt to identify key ethical considerations underlying the return of such results. This analysis of international guidelines and national laws and regulations reveals that though the legal framework regarding privacy and confidentiality of clinical and research information is well established (albeit not homogenous), guidelines are generally absent in the post-mortem context. Nevertheless, a brief analysis of this issue through two ethical perspectives (principlism and consequentialism) allows us to identify six key elements to be taken into consideration when returning a deceased participant's research results.
机译:研究参与者的死亡引发了有关将研究结果归还给相关家庭成员的许多道德和法律问题。在基因研究的背景下,这个问题尤为突出,因为个人的研究结果可能与每个生物学亲戚有关。本文首先研究了关于将死者的个人研究结果归还给其相关家庭成员的道德和法律框架。然后,它权衡了已故个人和相关家庭成员的权益,以试图确定返回此类结果所依据的关键伦理考虑。对国际准则和国家法律法规的分析表明,尽管关于临床和研究信息的隐私和机密性的法律框架已经建立(尽管不是同质的),但是在事后调查中通常没有准则。尽管如此,通过两种伦理学观点(原理主义​​和结果主义)对该问题进行简要分析,使我们能够确定返回死者研究成果时要考虑的六个关键因素。

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