Review of 'Ethical Issues in Governing Biobanks: Global Perspectives'
JAMA. 2009;301(24):2596-2597 (doi:10.1001/jama.2009.924)
3 Pages Posted: 2 Jul 2009
Date Written: June 23, 2009
Abstract
Many nations are now establishing large population-based biobanks and associated human genetic research databases that combine genetic information derived from biological samples with personal data about environment, medical history, lifestyle, or genealogy. Notable examples in addition to the pioneering Icelandic Health Sector Database Project are the Karolinska Institutet(Sweden), CARTaGENE(Canada), National Heart, Lung, and Blood Institute (National Institutes of Health, United States), KORA-GEN(Germany), the Western Australian Genome Health Project (Australia), and the Centre for Integrated Genomic Medical Research (United Kingdom).There have been few texts dedicated to the regulatory issues posed by biobanks.
Ethical Issues in Governing Biobanks arose from a collaborative research project between the World Health Organization Department of Ethics, Trade, Human Rights, and Health Law and the Institute for Biomedical Ethics (IBE), University of Geneva.
Keywords: Biobanks, Consent, Informed Consent, Commercialisation, Privacy, Human genetics, genome
JEL Classification: D64, D63, H41, I18
Suggested Citation: Suggested Citation