Funding Considerations for the Disclosure of Genetic Incidental Findings in Biobank Research

Clinical Genetics, 397, 2013

31 Pages Posted: 7 Aug 2015

See all articles by Lee Black

Lee Black

McGill University

Denise Avard

McGill University

Ma'n H. Zawati

McGill University - Centre of Genomics and Policy

Bartha Knoppers

McGill University

Josée Hébert

University of Montreal

Guy Sauvageau

University of Montreal - Molecular Genetics of Stem Cells Laboratory; University of Montreal - The Leucegene Project

Date Written: June 10, 2013

Abstract

The use of biobanks in biomedical research has grown considerably in recent years. As a result of the increasing analysis of tissue samples stored in biobanks, there has also been an increase in the probability of discovering — in addition to the research target — incidental findings (IF). We identified 23 laws, policies and guidelines from international, regional and national organizations that provide guidance or identify the need for the disclosure of IF to research participants. We analyzed these instruments to determine their contemplation of the funding considerations for the disclosure of IF, examining their guidance for who discloses and the extent of researcher responsibilities. We found that the available normative documents provide little guidance to researchers and biobanks for how they should address cost and funding concerns associated with IF disclosure. It is therefore essential that the research and policy communities think through the financial implications of imposing an ethical responsibility to disclose IF. Concerted efforts should be made by policymakers, ethicists, researchers, clinicians and research institutions to develop detailed funding recommendations, potentially universal in application, to aid in the disclosure of IF, and we provide recommendations on steps that can be taken to ensure full consideration of these issues.

Keywords: Biobank, Disclosure, Ethics, Incidental Findings, Research

Suggested Citation

Black, Lee and Avard, Denise and Zawati, Ma'n H. and Knoppers, Bartha and Hébert, Josée and Sauvageau, Guy, Funding Considerations for the Disclosure of Genetic Incidental Findings in Biobank Research (June 10, 2013). Clinical Genetics, 397, 2013, Available at SSRN: https://ssrn.com/abstract=2640266

Lee Black

McGill University ( email )

1001 Sherbrooke St. W
Montreal, Quebec H3A 1G5
Canada

Denise Avard

McGill University ( email )

1001 Sherbrooke St. W
Montreal, Quebec H3A 1G5
Canada

Ma'n H. Zawati (Contact Author)

McGill University - Centre of Genomics and Policy ( email )

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

Bartha Knoppers

McGill University ( email )

1001 Sherbrooke St. W
Montreal, Quebec H3A 1G5
Canada

Josée Hébert

University of Montreal ( email )

C.P. 6128 succursale Centre-ville
Montreal, Quebec H3C 3J7
Canada

Guy Sauvageau

University of Montreal - Molecular Genetics of Stem Cells Laboratory ( email )

C.P. 6128 succursale Centre-ville
Montreal, Quebec H3C 3J7
Canada

University of Montreal - The Leucegene Project ( email )

Canada

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