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Human Genomic Databases: A Global Public Good?

Human Genomic Databases: A Global Public Good? European Journal of Health Law 10 : 27-41, 2003. 27 © 2003 Kluwer Law International. Printed in the Netherlands Human Genomic Databases: A Global Public Good? BARTHA MARIA KNOPPERS * and CLAUDINE FECTEAU ** While the last quarter century has seen great strides in the ethical and legal frame- works governing the protection of privacy generally and more recently, of personal data, the same evolution has not accompanied genetic data. This hesitation may be due to the very legitimate concern of avoiding three current fallacies: genetic exceptionalism (genetics requires novel ethical principles), genetic determinism (genes determine who we are), and, genetic overgeneralization (all genetic informa- tion carries psycho-social risks). 1 Paradoxically, it may be this very failure to define, standardize and harmonize approaches to the collection, protection and dissemination of genetic data that has served to avoid a wholescale, premature adoption of such fallacies. We would argue that these fallacies only serve to contribute to the further stigmatization of genetic risk. Yet, will the next decade witness their incorporation in the regulation of human genomic databases? The advent of the completion of the sequence map of the human genome is turning attention to functional genomics and to the http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png European Journal of Health Law Brill

Human Genomic Databases: A Global Public Good?

Knoppers; Fecteau
European Journal of Health Law , Volume 10 (1): 27 – Jan 1, 2003
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Publisher
Brill
Copyright
© 2003 Koninklijke Brill NV, Leiden, The Netherlands
ISSN
0929-0273
eISSN
1571-8093
DOI
10.1163/157180903100384659
Publisher site
See Article on Publisher Site

Abstract

European Journal of Health Law 10 : 27-41, 2003. 27 © 2003 Kluwer Law International. Printed in the Netherlands Human Genomic Databases: A Global Public Good? BARTHA MARIA KNOPPERS * and CLAUDINE FECTEAU ** While the last quarter century has seen great strides in the ethical and legal frame- works governing the protection of privacy generally and more recently, of personal data, the same evolution has not accompanied genetic data. This hesitation may be due to the very legitimate concern of avoiding three current fallacies: genetic exceptionalism (genetics requires novel ethical principles), genetic determinism (genes determine who we are), and, genetic overgeneralization (all genetic informa- tion carries psycho-social risks). 1 Paradoxically, it may be this very failure to define, standardize and harmonize approaches to the collection, protection and dissemination of genetic data that has served to avoid a wholescale, premature adoption of such fallacies. We would argue that these fallacies only serve to contribute to the further stigmatization of genetic risk. Yet, will the next decade witness their incorporation in the regulation of human genomic databases? The advent of the completion of the sequence map of the human genome is turning attention to functional genomics and to the

Journal

European Journal of Health Law – Brill

Published: Jan 1, 2003

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