International Normative Perspectives on the Return of Individual Research Results and Incidental Findings in Genomic Biobanks

Genetics in Medicine, Vol. 14, No. 4, April 2012

6 Pages Posted: 11 Jan 2013

See all articles by Ma'n H. Zawati

Ma'n H. Zawati

McGill University - Centre of Genomics and Policy

Bartha Maria Knoppers

McGill University - Centre for Genomics and Policy

Date Written: April 1, 2012

Abstract

Managers of genomic biobanks constantly face ethical and legal challenges ranging from issues associated with the informed consent process to procedural concerns related to access by researchers. Yet, with the availability of next-generation sequencing technologies, one topic is emerging as the focus of ongoing debate: the return of individual research results and incidental findings to participants. This article examines this topic from an international perspective, where policies and guidelines discussing the matter in the context of genomic biobanks and genomic research are analyzed and commented. This approach aims to highlight the shortcomings of these international norms, mainly the danger arising from both the therapeutic misconception and the conflation of research results with incidental findings. This article suggests some elements to consider in order to complement available guidance at the international level.

Suggested Citation

Zawati, Ma'n H. and Knoppers, Bartha Maria, International Normative Perspectives on the Return of Individual Research Results and Incidental Findings in Genomic Biobanks (April 1, 2012). Genetics in Medicine, Vol. 14, No. 4, April 2012, Available at SSRN: https://ssrn.com/abstract=2199106

Ma'n H. Zawati

McGill University - Centre of Genomics and Policy ( email )

740 Dr. Penfield Avenue, Suite 5200
Montreal, Quebec H3A 0G1
Canada

Bartha Maria Knoppers (Contact Author)

McGill University - Centre for Genomics and Policy ( email )

740 Dr. Penfield Avenue, Suite 5200
Montreal, Quebec H3A 0G1
Canada

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