title: Harm, hype and evidence: ELSI research and policy guidance.
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.
authors.affiliation: Health Law and Science Policy Group, University of Alberta, Edmonton, Alberta Canada, T6G 2H5.
authors.forename: Timothy
authors.initials: T
authors.lastname: Caulfield
authors.affiliation: Institute for Genome Sciences and Policy, North Building, Duke University, USA Drive, Box 90141 Durham, NC 27708, USA.
authors.forename: Subhashini
authors.initials: S
authors.lastname: Chandrasekharan
authors.affiliation: Department of Human Genetics, McGill University, 740 Dr. Penfield Avenue, Montreal, Quebec, Canada, H3A 0G1.
authors.forename: Yann
authors.initials: Y
authors.lastname: Joly
authors.affiliation: Institute for Genome Sciences and Policy, North Building, Duke University, USA Drive, Box 90141 Durham, NC 27708, USA.
authors.forename: Robert
authors.initials: R
authors.lastname: Cook-Deegan