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Highly Accessed Opinion

Harm, hype and evidence: ELSI research and policy guidance

Timothy Caulfield1*, Subhashini Chandrasekharan2, Yann Joly3 and Robert Cook-Deegan2

Author Affiliations

1 Health Law and Science Policy Group, University of Alberta, Edmonton, Alberta Canada, T6G 2H5

2 Institute for Genome Sciences and Policy, North Building, Duke University, USA Drive, Box 90141 Durham, NC 27708, USA

3 Department of Human Genetics, McGill University, 740 Dr. Penfield Avenue, Montreal, Quebec, Canada, H3A 0G1

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Genome Medicine 2013, 5:21  doi:10.1186/gm425

Published: 26 March 2013

Abstract

There has been much investment in research on the ethical, legal and social issues (ELSI) associated with genetic and genomic research. This research should inform the development of the relevant policy. So far, much of the relevant policy - such as in the areas of patents, genetic testing and genetic discrimination - seems to be informed more by speculation of harm and anecdote than by available evidence. Although a quest for evidence cannot always be allowed to delay policy choice, it seems axiomatic to us that policy options are improved by the incorporation of evidence.