Towards a Data Sharing Code of Conduct for International Genomic Research

Genome Medicine, Vol. 3, No. 7, p. 46, 2011, DOI: 10.1186/gm262

4 Pages Posted: 17 Jan 2013

See all articles by Bartha Maria Knoppers

Bartha Maria Knoppers

McGill University - Centre for Genomics and Policy

Jennifer Harris

Norwegian Institute of Public Health

Anne-Marie Tassé

McGill University - Centre for Genomics and Policy

Isabelle Budin-Ljøsne

Norwegian Institute of Public Health

Jane Kaye

University of Oxford - Faculty of Law

Mylène Deschênes

McGill University - Centre for Genomics and Policy

Ma'n H. Zawati

McGill University - Centre of Genomics and Policy

Date Written: July 14, 2011

Abstract

Data sharing is increasingly regarded as an ethical and scientific imperative that advances knowledge and thereby respects the contributions of the participants. Because of this and the ever-increasing amount of data access requests currently filed around the world, three groups have decided to develop data sharing principles specific to the context of collaborative international genomics research. These groups are: the international Public Population Project in Genomics (P3G), an international consortium of projects partaking in large-scale genetic epidemiological studies and biobanks; the European Network for Genetic and Genomic Epidemiology (ENGAGE), a research project aiming to translate data from large-scale epidemiological research initiatives into relevant clinical information; and the Centre for Health, Law and Emerging Technologies (HeLEX). We propose seven different principles and a preliminary international data sharing Code of Conduct for ongoing discussion.

Suggested Citation

Knoppers, Bartha Maria and Harris, Jennifer and Tassé, Anne-Marie and Budin-Ljøsne, Isabelle and Kaye, Jane and Deschênes, Mylène and Zawati, Ma'n H., Towards a Data Sharing Code of Conduct for International Genomic Research (July 14, 2011). Genome Medicine, Vol. 3, No. 7, p. 46, 2011, DOI: 10.1186/gm262, Available at SSRN: https://ssrn.com/abstract=2201850

Bartha Maria Knoppers

McGill University - Centre for Genomics and Policy ( email )

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

Jennifer Harris

Norwegian Institute of Public Health ( email )

PO Box 4404
Nydalen, N-0403
Oslo
Norway

Anne-Marie Tassé

McGill University - Centre for Genomics and Policy ( email )

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

Isabelle Budin-Ljøsne

Norwegian Institute of Public Health ( email )

PO Box 4404
Nydalen, N-0403
Oslo
Norway

Jane Kaye

University of Oxford - Faculty of Law ( email )

St. Cross Building
St. Cross Road
Oxford, OX1 3UJ
United Kingdom

Mylène Deschênes

McGill University - Centre for Genomics and Policy ( email )

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

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