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

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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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References

  • American Society of Human Genetics (2007) ASHG statement on direct-to-consumer genetic testing in the United States. Am J Hum Genet 81:635–637

    Article  Google Scholar 

  • Bloss CS, Ornowski L, Silver E, Cargill M, Vanier V, Schork NJ, Topol EJ (2010) Consumer perceptions of direct-to-consumer personalized genomic risk assessments. Genet Med 12(9):556–566

    Article  PubMed  Google Scholar 

  • Bloss CS, Schork NJ, Topol EJ (2011) Effect of direct-to-consumer genomewide profiling to assess disease risk. N Engl J Med 364:524–534

    Article  PubMed  CAS  Google Scholar 

  • Brice P (2010) Current DTC genetic testing market smaller than expected. Public Health Genomics Foundation (accessed 22 February 2011). http://www.phgfoundation.org/news/5658/

  • Evans JP, Meslin EM, Marteau TM, Caulfield T (2011) Deflating the genomic bubble. Science 331:861–862

    Article  PubMed  CAS  Google Scholar 

  • Green RC, Roberts JS, Cupples LA, Relkin NR, Whitehouse PJ, Brown T, Eckert SL, Butson M, Sadovnick AD, Quaid KA, Chen C, Cook-Deegan R, Farrer LA (2009) Disclosure of APOE genotype for risk of Alzheimer’s disease. N Engl J Med 361:245–254

    Article  PubMed  CAS  Google Scholar 

  • Hall WD, Mathews R, Morley KI (2010) Being more realistic about the public health impact of genomic medicine. PLoS Med 7(10):e1000347. doi:10.1371/journal.pmed.1000347

  • Heshka JT, Palleschi C, Howley H, Wilson B, Wells PS (2008) A systematic review of perceived risks, psychological and behavioral impacts of genetic testing. Genet Med 10:19–32

    Article  PubMed  Google Scholar 

  • Human Genetics Commission (2010) A common framework of principles for direct-to-consumer genetic testing services (accessed 22 February 2011). http://www.hgc.gov.uk/client/Content.asp?ContentId=816

  • Javitt G (2010) Assign regulation appropriate to the level of risk. Nature 466:817–818

    Article  PubMed  CAS  Google Scholar 

  • Le Fanu J (2010) Is modern genetics a blind alley? Yes. BMJ 340:c1156

    Article  PubMed  Google Scholar 

  • Marteau TM, French DP, Griffin SJ, Prevost AT, Sutton S, Watkinson C, Attwood S, Hollands GJ (2010) Effects of communicating DNA-based disease risk estimates on risk-reducing behaviours. Cochrane Database Syst Rev 10:CD007275. doi:10.1002/14651858.CD007275.pub2

  • McGuire A, Evans B, Caulfield T, Burke W (2010) Regulating direct-to-consumer personal genome testing. Science 330:181–182

    Article  PubMed  CAS  Google Scholar 

  • Neumann PJ, Cohen JT, Hammitt JK, Concannon TW, Auerbach HR, Fang C, Kent DM (2010) Willingness-to-pay for predictive tests with no immediate treatment implications: a survey of US residents. Health Econ. doi:10.1002/hec.1704

  • Ries N, Hyde-Lay R, Caulfield T (2010) Willingness to pay for genetic testing: a study of attitudes in a Canadian population. Public Health Genom 13:292–300

    Article  CAS  Google Scholar 

  • Secretary’s Advisory Committee on Genetic Testing (2000) Enhancing the oversight of genetic tests: Recommendations of the SACGT. National Institutes of Health (accessed 22 February 2011). http://oba.od.nih.gov/oba/sacgt/reports/oversight_report.pdf

  • Secretary’s Advisory Committee on Genetics, Health and Society (2010) Direct-to-consumer genetic testing. Department of Health and Human Services (accessed 22 February 2011). http://oba.od.nih.gov/oba/sacghs/reports/SACGHS_DTC_Report_2010.pdf

  • van El CG, Cornel MC (2011) Genetic testing and common disorders in a public health framework: recommendations of the European Society of Human Genetics. Eur J Hum Genet. doi:10.1038/ejhg.2010.176

  • Vorhaus D (2011) Update: FDA taking another (public) look at DTC genetic tests. Genomics Law Report. 2011/02/08/update-fda-taking-another-public-look-at-dtc-genetic-tests/ (accessed 22 February 2011). http://www.genomicslawreport.com/index.php/

  • Wagner JK (2010) Understanding FDA regulation of DTC genetic tests within the context of administrative law. Am J Hum Genet 7:451–456

    Article  Google Scholar 

  • Wright C (2009) Ban on direct-to-consumer genetic tests in Germany. Public Health Genomics Foundation (accessed 22 February 2011). http://www.phgfoundation.org/news/4562/

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Acknowledgments

I would like to thank Christen Rachul and Robyn Hyde-Lay for their helpful comments and Genome Alberta and AllerGen (NCE) for the funding support.

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I have no conflicts of interest to declare.

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Correspondence to Timothy Caulfield.

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Caulfield, T. Direct-to-consumer testing: if consumers are not anxious, why are policymakers?. Hum Genet 130, 23–25 (2011). https://doi.org/10.1007/s00439-011-0987-8

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  • DOI: https://doi.org/10.1007/s00439-011-0987-8

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