Return of Research Results: General Principles and International Perspectives

Authors

  • Emmanuelle Lévesque,

    1. Lawyer and an Academic Associate at the Centre of Genomics and Policy of McGill University (Canada).
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  • Yann Joly,

    1. Lawyer and Assistant Professor at the Department of Human Genetics, Faculty of Medicine at McGill University (Canada).
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  • Jacques Simard

    1. Canada Research Chair in Oncogenetics, the Director of the Interdisciplinary and International CIHR Team in Familial Risks of Breast Cancer, a Professor at the Department of Molecular Medicine, Faculty of Medicine at Laval University (Canada), and Researcher at the CHUQ Research Center.
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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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