Literature DB >> 23534337

Harm, hype and evidence: ELSI research and policy guidance.

Timothy Caulfield1, Subhashini Chandrasekharan2, Yann Joly3, Robert Cook-Deegan2.   

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.

Entities:  

Year:  2013        PMID： 23534337      PMCID： PMC3707044          DOI： 10.1186/gm425

Source DB:  PubMed          Journal:  Genome Med        ISSN： 1756-994X            Impact factor:   11.117


  31 in total

1.  Diagnostic testing fails the test.

Authors:  Jon F Merz; Antigone G Kriss; Debra G B Leonard; Mildred K Cho
Journal:  Nature       Date:  2002-02-07       Impact factor: 49.962

2.  Banning genetic discrimination.

Authors:  Henry T Greely
Journal:  N Engl J Med       Date:  2005-09-01       Impact factor: 91.245

3.  Myriad and the mass media: the covering of a gene patent controversy.

Authors:  Timothy Caulfield; Tania Bubela; C J Murdoch
Journal:  Genet Med       Date:  2007-12       Impact factor: 8.822

4.  The phantom menace of gene patents.

Authors:  Sibylle Gaisser; Michael M Hopkins; Kathleen Liddell; Eleni Zika; Dolores Ibarreta
Journal:  Nature       Date:  2009-03-26       Impact factor: 49.962

5.  Direct-to-consumer testing: if consumers are not anxious, why are policymakers?

Authors:  Timothy Caulfield
Journal:  Hum Genet       Date:  2011-04-11       Impact factor: 4.132

Review 6.  Patents in genomics and human genetics.

Authors:  Robert Cook-Deegan; Christopher Heaney
Journal:  Annu Rev Genomics Hum Genet       Date:  2010       Impact factor: 8.929

7.  Impact of direct-to-consumer predictive genomic testing on risk perception and worry among patients receiving routine care in a preventive health clinic.

Authors:  Katherine M James; Clayton T Cowl; Jon C Tilburt; Pamela S Sinicrope; Marguerite E Robinson; Katrin R Frimannsdottir; Kristina Tiedje; Barbara A Koenig
Journal:  Mayo Clin Proc       Date:  2011-10       Impact factor: 7.616

8.  Perception, experience, and response to genetic discrimination in Huntington disease: the international RESPOND-HD study.

Authors:  Cheryl Erwin; Janet K Williams; Andrew R Juhl; Michelle Mengeling; James A Mills; Yvonne Bombard; Michael R Hayden; Kimberly Quaid; Ira Shoulson; Sandra Taylor; Jane S Paulsen
Journal:  Am J Med Genet B Neuropsychiatr Genet       Date:  2010-07       Impact factor: 3.568

9.  The dangers of diagnostic monopolies.

Authors:  Robert Cook-Deegan; Subhashini Chandrasekharan; Misha Angrist
Journal:  Nature       Date:  2009-03-26       Impact factor: 49.962

Review 10.  Effects of communicating DNA-based disease risk estimates on risk-reducing behaviours.

Authors:  Theresa M Marteau; David P French; Simon J Griffin; A T Prevost; Stephen Sutton; Clare Watkinson; Sophie Attwood; Gareth J Hollands
Journal:  Cochrane Database Syst Rev       Date:  2010-10-06
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  21 in total

1.  Expanding ELSI to all areas of innovative science and technology.

Authors:  Dov Greenbaum
Journal:  Nat Biotechnol       Date:  2015-04       Impact factor: 54.908

2.  Qualitative Research on Expanded Prenatal and Newborn Screening: Robust but Marginalized.

Authors:  Rachel Grob
Journal:  Hastings Cent Rep       Date:  2019-05       Impact factor: 2.683

3.  Public attitudes towards genomic risk profiling as a component of routine population screening.

Authors:  S G Nicholls; B J Wilson; S M Craigie; H Etchegary; D Castle; J C Carroll; B K Potter; L Lemyre; J Little
Journal:  Genome       Date:  2013-08-31       Impact factor: 2.166

4.  Personalised medicine, disease prevention, and the inverse care law: more harm than benefit?

Authors:  Jack E James
Journal:  Eur J Epidemiol       Date:  2014-04-12       Impact factor: 8.082

5.  Testing positive for a genetic predisposition to depression magnifies retrospective memory for depressive symptoms.

Authors:  Matthew S Lebowitz; Woo-Kyoung Ahn
Journal:  J Consult Clin Psychol       Date:  2017-11

6.  Blue Genes? Understanding and Mitigating Negative Consequences of Personalized Information about Genetic Risk for Depression.

Authors:  Matthew S Lebowitz; Woo-Kyoung Ahn
Journal:  J Genet Couns       Date:  2017-08-07       Impact factor: 2.537

7.  Genomic Essentialism: Its Provenance and Trajectory as an Anticipatory Ethical Concern.

Authors:  Maya Sabatello; Eric Juengst
Journal:  Hastings Cent Rep       Date:  2019-05       Impact factor: 2.683

8.  Public reactions to direct-to-consumer genetic health tests: A comparison across the US, UK, Japan and Australia.

Authors:  Jan Charbonneau; Dianne Nicol; Don Chalmers; Kazuto Kato; Natsuko Yamamoto; Jarrod Walshe; Christine Critchley
Journal:  Eur J Hum Genet       Date:  2019-10-23       Impact factor: 5.351

9.  How Do Patents Affect Follow-on Innovation? Evidence from the Human Genome.

Authors:  Bhaven Sampat; Heidi L Williams
Journal:  Am Econ Rev       Date:  2019-01

10.  Anticipating the ethical, legal, and social implications of human genome research: An ongoing experiment.

Authors:  Eric T Juengst
Journal:  Am J Med Genet A       Date:  2021-06-22       Impact factor: 2.802
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