Literature DB >> 21479954

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

Timothy Caulfield1.   

Abstract

Direct-to-consumer genetic testing continues to receive significant attention from both the popular press and policymakers. While the demand for these services has not, to date, been significant, it nevertheless seems likely that more and more individuals will be accessing DTC services. As a result, commentators have suggested that the DTC industry requires more oversight. A common rationale for policy action is that DTC services might cause undue anxiety. However, emerging evidence suggests that this is not the case. Indeed, it appears that genetic risk information has little impact on individual behavior or anxiety levels. Though more research is clearly needed, this type of research should inform the regulatory response to DTC services.

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Year:  2011        PMID: 21479954     DOI: 10.1007/s00439-011-0987-8

Source DB:  PubMed          Journal:  Hum Genet        ISSN: 0340-6717            Impact factor:   4.132


  13 in total

1.  Is modern genetics a blind alley? Yes.

Authors:  James Le Fanu
Journal:  BMJ       Date:  2010-03-30

2.  Understanding FDA regulation of DTC genetic tests within the context of administrative law.

Authors:  Jennifer K Wagner
Journal:  Am J Hum Genet       Date:  2010-10-08       Impact factor: 11.025

3.  Science and regulation. Regulating direct-to-consumer personal genome testing.

Authors:  Amy L McGuire; Barbara J Evans; Timothy Caulfield; Wylie Burke
Journal:  Science       Date:  2010-10-08       Impact factor: 47.728

4.  Willingness-to-pay for predictive tests with no immediate treatment implications: a survey of US residents.

Authors:  Peter J Neumann; Joshua T Cohen; James K Hammitt; Thomas W Concannon; Hannah R Auerbach; Chihui Fang; David M Kent
Journal:  Health Econ       Date:  2010-12-28       Impact factor: 3.046

5.  Willingness to pay for genetic testing: a study of attitudes in a Canadian population.

Authors:  N M Ries; R Hyde-Lay; T Caulfield
Journal:  Public Health Genomics       Date:  2009-10-26       Impact factor: 2.000

6.  Effect of direct-to-consumer genomewide profiling to assess disease risk.

Authors:  Cinnamon S Bloss; Nicholas J Schork; Eric J Topol
Journal:  N Engl J Med       Date:  2011-01-12       Impact factor: 91.245

7.  Disclosure of APOE genotype for risk of Alzheimer's disease.

Authors:  Robert C Green; J Scott Roberts; L Adrienne Cupples; Norman R Relkin; Peter J Whitehouse; Tamsen Brown; Susan LaRusse Eckert; Melissa Butson; A Dessa Sadovnick; Kimberly A Quaid; Clara Chen; Robert Cook-Deegan; Lindsay A Farrer
Journal:  N Engl J Med       Date:  2009-07-16       Impact factor: 91.245

Review 8.  Being more realistic about the public health impact of genomic medicine.

Authors:  Wayne D Hall; Rebecca Mathews; Katherine I Morley
Journal:  PLoS Med       Date:  2010-10-12       Impact factor: 11.069

Review 9.  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

Review 10.  A systematic review of perceived risks, psychological and behavioral impacts of genetic testing.

Authors:  Jodi T Heshka; Crystal Palleschi; Heather Howley; Brenda Wilson; Philip S Wells
Journal:  Genet Med       Date:  2008-01       Impact factor: 8.822

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  11 in total

1.  Psychological distress with direct-to-consumer genetic testing: a case report of an unexpected BRCA positive test result.

Authors:  Lindsay Dohany; Shanna Gustafson; Whitney Ducaine; Dana Zakalik
Journal:  J Genet Couns       Date:  2012-01-21       Impact factor: 2.537

2.  Neither as harmful as feared by critics nor as empowering as promised by providers: risk information offered direct to consumer by personal genomics companies.

Authors:  Anders Nordgren
Journal:  J Community Genet       Date:  2012-04-05

3.  Risky business: risk perception and the use of medical services among customers of DTC personal genetic testing.

Authors:  David J Kaufman; Juli M Bollinger; Rachel L Dvoskin; Joan A Scott
Journal:  J Genet Couns       Date:  2012-01-26       Impact factor: 2.537

Review 4.  Direct-to-consumer personalized genomic testing.

Authors:  Cinnamon S Bloss; Burcu F Darst; Eric J Topol; Nicholas J Schork
Journal:  Hum Mol Genet       Date:  2011-08-09       Impact factor: 6.150

5.  Direct-to-Consumer Genetic Testing and Personal Genomics Services: A Review of Recent Empirical Studies.

Authors:  J Scott Roberts; Jenny Ostergren
Journal:  Curr Genet Med Rep       Date:  2013-09

Review 6.  Genomic medicine and neurological disease.

Authors:  Philip M Boone; Wojciech Wiszniewski; James R Lupski
Journal:  Hum Genet       Date:  2011-05-19       Impact factor: 4.132

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

Authors:  Timothy Caulfield; Subhashini Chandrasekharan; Yann Joly; Robert Cook-Deegan
Journal:  Genome Med       Date:  2013-03-26       Impact factor: 11.117

8.  Health care providers and direct-to-consumer access and advertising of genetic testing in the United States.

Authors:  Melanie F Myers
Journal:  Genome Med       Date:  2011-12-28       Impact factor: 15.266

9.  Associations between self-referral and health behavior responses to genetic risk information.

Authors:  Kurt D Christensen; J Scott Roberts; Brian J Zikmund-Fisher; Sharon Lr Kardia; Colleen M McBride; Erin Linnenbringer; Robert C Green
Journal:  Genome Med       Date:  2015-01-31       Impact factor: 11.117

10.  State of play in direct-to-consumer genetic testing for lifestyle-related diseases: market, marketing content, user experiences and regulation.

Authors:  Paula Saukko
Journal:  Proc Nutr Soc       Date:  2013-02       Impact factor: 6.297

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