Harm, hype and evidence: ELSI research and policy guidance

Timothy Caulfield, Subhashini Chandrasekharan, Yann Joly, Robert Cook-Deegan

Research output: Contribution to journalArticle

30 Citations (Scopus)

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.

Original languageEnglish (US)
Article number21
JournalGenome Medicine
Volume5
Issue number3
DOIs
StatePublished - Mar 26 2013
Externally publishedYes

Fingerprint

Research
Anecdotes
Genetic Research
Patents
Policy Making
Genetic Testing

ASJC Scopus subject areas

  • Genetics(clinical)
  • Genetics
  • Molecular Biology
  • Molecular Medicine

Cite this

Harm, hype and evidence : ELSI research and policy guidance. / Caulfield, Timothy; Chandrasekharan, Subhashini; Joly, Yann; Cook-Deegan, Robert.

In: Genome Medicine, Vol. 5, No. 3, 21, 26.03.2013.

Research output: Contribution to journalArticle

Caulfield, Timothy ; Chandrasekharan, Subhashini ; Joly, Yann ; Cook-Deegan, Robert. / Harm, hype and evidence : ELSI research and policy guidance. In: Genome Medicine. 2013 ; Vol. 5, No. 3.
@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",
year = "2013",
month = "3",
day = "26",
doi = "10.1186/gm425",
language = "English (US)",
volume = "5",
journal = "Genome Medicine",
issn = "1756-994X",
publisher = "BioMed Central",
number = "3",

}

TY - JOUR

T1 - Harm, hype and evidence

T2 - ELSI research and policy guidance

AU - Caulfield, Timothy

AU - Chandrasekharan, Subhashini

AU - Joly, Yann

AU - Cook-Deegan, Robert

PY - 2013/3/26

Y1 - 2013/3/26

N2 - 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.

AB - 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.

UR - http://www.scopus.com/inward/record.url?scp=84874771931&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84874771931&partnerID=8YFLogxK

U2 - 10.1186/gm425

DO - 10.1186/gm425

M3 - Article

AN - SCOPUS:84874771931

VL - 5

JO - Genome Medicine

JF - Genome Medicine

SN - 1756-994X

IS - 3

M1 - 21

ER -