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J Law Med Ethics. 2011 Winter;39(4):583-92. doi: 10.1111/j.1748-720X.2011.00625.x.

Return of research results: general principles and international perspectives.

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  • 1Centre of Genomics and Policy of McGill University, Canada.

Abstract

Five years ago, an article co-written by two of us (Joly and Simard) presented an emerging trend to disclose certain individual genetic results to research participants. Since then, both technologies and research practices have evolved significantly. Given this rapid evolution, our goal is to provide updated and thorough guidance on this issue. Our paper begins by identifying the ethical principles that support the return of results: justice, beneficence, and respect for persons. Then, it presents the results of an analysis of international norms on the return of results, covering both general and individual research results. It reveals existing divergence and consensus on these topics within the international community. With the goal of promoting greater harmonization, we conclude by proposing a flexible framework for the return of individual research results.

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