@article{3fd3dc55e1e24e909343cb4247956987,
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.",
author = "Timothy Caulfield and Subhashini Chandrasekharan and Yann Joly and Robert Cook-Deegan",
note = "Funding Information: TC would like to thank Robyn Hyde-Lay and Ubaka Ogbogu for their assistance, and AllerGen, Networks of Centers of Excellence, Canada and the CCRM for funding support. SC and RCD note that their research is funded in part by grant P50 HG003391 from the National Human Genome Research Institute (NHGRI) and by the Ewing Marion Kauf an Foundation. SC would also like to thank the NHGRI for research funding support (R03 HG005026). The views are those of the authors and not NHGRI, NIH or the Kauffman Foundation. YJ thanks the CIHR Team in Familial Risks of Breast Cancer and the Minist{\`e}re du D{\'e}veloppement {\'e}conomique, de l{\textquoteright}Innovation et de l{\textquoteright}Exportation du Qu{\'e}bec. We would also like to thank the participants of the Using and Abusing Evidence in Health and Science Policy (Ban,f Alberta, May 2012) conference for their thoughtful comments.",
year = "2013",
month = mar,
day = "26",
doi = "10.1186/gm425",
language = "English (US)",
volume = "5",
journal = "Genome Medicine",
issn = "1756-994X",
publisher = "BioMed Central",
number = "3",
}