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Return of Research Results: General Principles and International Perspectives

Published online by Cambridge University Press:  01 January 2021

Emmanuelle Lévesque ,
Yann Joly  and
Jacques Simard
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Extract

Five years ago, an article co-written by some of us (Joly and Simard) presented an emerging trend to disclose some individual genetic results to research participants within the international research community. At the time, ethical norms and scholarly publications on the return of results often did not distinguish between the return of research results in general and the return of unexpected results (also called incidental findings). Both technologies and research practices have evolved significantly. Today whole genome and exome sequencing are increasingly affordable and frequently used in genetic research. Because these techniques produce a vast amount of interpretable and non-interpretable data (i.e., data of unproven significance) about an individual, the issue of how to manage information generated by such technologies needs to be considered. However, the development of international ethical guidelines has not kept up with the rapid pace of technological progress. Indeed developments in genomic biobanking also challenge the duty to disclose research results.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 39 , Issue 4 , Winter 2011 , pp. 583 - 592
Copyright
Copyright © American Society of Law, Medicine and Ethics 2011

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