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Users’ motivations to purchase direct-to-consumer genome-wide testing: an exploratory study of personal stories

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Abstract

The relatively rapid growth of the direct-to-consumer (DTC) genetic testing market in the last few years has led to increasing attention from both the scientific community and policy makers. One voice often missing in these debates, however, is that of the actual user of these genetic testing services. In order to gain a better picture of the motivations and expectations that propel individuals to purchase DTC genome-wide testing, we conducted an exploratory study based on users’ personal stories. Through qualitative content analysis of users’ personal stories found on Internet blogs and DTC genetic testing companies’ websites, we identified five major sets of motivations and expectations towards DTC genome-wide testing. These themes are related to (1) health, (2) curiosity and fascination, (3) genealogy, (4) contributing to research, and (5) recreation. Obtaining such information can help us to understand how users consider genome-wide testing and forms the basis for further research.

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References

  • 23andMe (2010) Terms of service. https://www.23andme.com/about/tos/ Accessed 11 Nov 2010

  • Allison M (2010) Genetic testing clamp down. Nat Biotechnol 28:633

    Article  PubMed  CAS  Google Scholar 

  • American College of Obstetricians and Gynaecologists (2008) ACOG Committee Opinion no. 409: direct-to-consumer marketing of genetic testing. Obstet Gynecol 111:1493–1494

    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 12:556–566

    Article  PubMed  Google Scholar 

  • Bloss CS, Schork NJ, Topol EJ (2011) Effect of direct-to-consumer genomewide profiling to assess disease risk. New Engl J Med 364 (6): 524–534

    Article  PubMed  CAS  Google Scholar 

  • Borry P, Howard HC, Senecal K, Avard D (2009a) Direct-to-consumer genome scanning services. Also for children? Nat Rev Genet 10:8

    Article  PubMed  CAS  Google Scholar 

  • Borry P, Howard HC, Senecal K, Avard D (2009b) Health-related direct-to-consumer genetic testing: a review of companies' policies with regard to genetic testing in minors. Fam Cancer 9:51–59

    Article  PubMed  Google Scholar 

  • Borry P, Cornel MC, Howard HC (2010a) Where are you going, where have you been. Direct-to-consumer genetic tests for health purposes. J Community Genet 1:101–106

    Article  PubMed  Google Scholar 

  • Borry P, Henneman L, Lakeman P, ten Kate LP, Cornel MC, Howard HC (2010b) Preconceptional carrier genetic testing and the commercial offer directly-to-consumers. Hum Reprod 26:972–977

    Article  Google Scholar 

  • Cherkas LF, Harris JM, Levinson E, Spector TD, Prainsack B (2010) A survey of UK public interest in internet-based personal genome testing. PLoS ONE 5:e13473

    Article  PubMed  Google Scholar 

  • Collins F (2010) The language of life: DNA and the revolution in personalized medicine. Harper Collins, New York

    Google Scholar 

  • Burril & Company/Change Wave Research (2008) Personalized medicine and wellness survey. Executive summary. http://www.burrillandco.com/content/CWSurvey_61708.pdf. Accessed 21 Sept 2010

  • deCODE (2010) deCODEme Genetic scan service agreement and informed consent. http://www.decodeme.com/service-agreement Accessed 11 Nov 2010

  • Duncan D (2009) The experimental man. Wiley, Hoboken

    Google Scholar 

  • European Society of Human Genetics (2010) Statement of the ESHG on direct-to-consumer genetic testing for health-related purposes. Eur J Hum Genet 18:1271–1273

    Article  Google Scholar 

  • Federal Trade Commission (2009) FTC facts for consumers. At-home genetic tests: a healthy dose of skepticism may be the best prescription. http://www.ftc.gov/bcp/edu/pubs/consumer/health/hea02.shtm. Accessed 26 Apr 2011

  • Foster MW, Royal CDM, Sharp RR (2006) The routinisation of genomics and genetics: implications for ethical practices. J Med Ethics 32:635–638

    Article  PubMed  CAS  Google Scholar 

  • Foster MW, Mulvihill JJ, Sharp RR (2009) Evaluating the utility of personal genomic information. Genet Med 11:570–574

    Article  PubMed  Google Scholar 

  • Gulcher J, Stefansson K (2010) Genetic risk information for common diseases may indeed be already useful for prevention and early detection. Eur J Clin Investig 40:56–63

    Article  CAS  Google Scholar 

  • Hogarth S, Javitt G, Melzer D (2008) The current landscape for direct-to-consumer genetic testing: legal, ethical, and policy issues. Annu Rev Genomics Hum Genet 9:161–182

    Article  PubMed  CAS  Google Scholar 

  • Howard HC, Borry P (2009) Personal genome testing: do you know what you are buying? Am J Bioeth 9:11–13

    PubMed  Google Scholar 

  • Howard HC, Knoppers BM, Borry P (2010) Blurring lines. The research activities of direct-to-consumer genetic testing companies raise questions about consumers as research subjects. EMBO Rep 11:579–582

    Article  PubMed  CAS  Google Scholar 

  • Human Genetics Commission (2010) A common framework of principles for direct-to-consumer genetic testing services. http://www.hgc.gov.uk/Client/document.asp?DocId=280&CAtegoryId=10 Accessed 17 Feb 2011

  • Hunter DJ, Khoury MJ, Drazen JM (2008) Letting the genome out of the bottle—will we get our wish? N Engl J Med 358:105–107

    Article  PubMed  CAS  Google Scholar 

  • Janssens AC, Gwinn M, Bradley LA, Oostra BA, van Duijn CM, Khoury MJ (2008) A critical appraisal of the scientific basis of commercial genomic profiles used to assess health risks and personalize health interventions. Am J Hum Genet 82:593–599

    Article  PubMed  CAS  Google Scholar 

  • Kaufman D, Murphy Bollinger J, Devaney S, Scott J (2010) Direct from consumers: a survey of 1,048 customers of three direct-to-consumer personal genomic testing companies about motivations, attitudes, and responses to testing.http://www.ashg.org/cgi-bin/2010/showdetail.pl?absno=21043 Accessed 26 Apr 2011

  • Kettis-Lindblad A, Ring L, Viberth E, Hansson MG (2007) Perceptions of potential donors in the Swedish public towards information and consent procedures in relation to use of human tissue samples in biobanks: a population-based study. Scand J Public Health 35:148–156

    Article  PubMed  Google Scholar 

  • Khoury MJ (2003) Genetics and genomics in practice: the continuum from genetic disease to genetic information in health and disease. Genet Med 5:261–268

    Article  PubMed  Google Scholar 

  • Lachance CR, Erby LA, Ford BM, Allen VC Jr, Kaphingst KA (2010) Informational content, literacy demands, and usability of websites offering health-related genetic tests directly to consumers. Genet Med 12:304–312

    Article  PubMed  Google Scholar 

  • McBride CM, Alford SH, Reid RJ, Larson EB, Baxevanis AD, Brody LC (2009) Characteristics of users of online personalized genomic risk assessments: implications for physician–patient interactions. Genet Med 11:582–587

    Article  PubMed  Google Scholar 

  • McBride CM, Wade CH, Kaphingst KA (2010) Consumers' views of direct-to-consumer genetic information. Annu Rev Genomics Hum Genet 11:427–446

    Article  PubMed  CAS  Google Scholar 

  • McGowan ML, Fishman JR, Lambrix MA (2010) Personal genomics and individual identities: motivations and moral imperatives of early users. New Genet Soc 29:261–290

    Article  PubMed  Google Scholar 

  • McGuire A, Diaz CM, Wang T, Hilsenbeck S (2009) Social networkers' attitudes toward direct-to-consumer personal genome testing. Am J Bioeth 9:3–10

    PubMed  Google Scholar 

  • Mezuk B, Eaton WW, Zandi P (2008) Participant characteristics that influence consent for genetic research in a population-based survey: the Baltimore epidemiologic catchment area follow-up. Community Genet 11:171–178

    Article  PubMed  Google Scholar 

  • Mihaescu R, van Hoek M, Sijbrands EJ, Uitterlinden AG, Witteman JC, Hofman A, van Duijn CM, Janssens AC (2009) Evaluation of risk prediction updates from commercial genome-wide scans. Genet Med 11:588

    Article  PubMed  Google Scholar 

  • Nuffield Council on Bioethics (2010) Medical profiling and online medicine: the ethics of ‘personalised healthcare’ in a consumer age. Nuffield Press, Oxfordshire

    Google Scholar 

  • Ransohoff DF, Khoury MJ (2010) Personal genomics: information can be harmful. Eur J Clin Invest 40:64–68

    Article  PubMed  CAS  Google Scholar 

  • Richards M (2010) Reading the runes of my genome: a personal exploration of retail genetics. New Genet Soc 29:291–310

    Article  Google Scholar 

  • Silverman D (2006) Interpreting qualitative data. Sage, London

  • United States Government Accountability Office (2006) Nutrigenetic testing: tests purchased from four websites mislead consumers. US GAO, Washington

    Google Scholar 

  • United States Government Accountability Office (2010) Direct-to-consumer genetic tests misleading test results are further complicated by deceptive marketing and other questionable practices .http://energycommerce.house.gov/documents/20100722/Kutz.Testimony.07.22.2010.pdf. Accessed 10 Aug 2010

  • Wade CH, Wilfond BS (2006) Ethical and clinical practice considerations for genetic counselors related to direct-to-consumer marketing of genetic tests. Am J Med Genet C Semin Med Genet 142:284–292

    Google Scholar 

  • Wilde A, Meiser B, Mitchell PB, Schofield PR (2010) Public interest in predictive genetic testing, including direct-to-consumer testing, for susceptibility to major depression: preliminary findings. Eur J Hum Genet 18:47–51

    Article  PubMed  Google Scholar 

  • Wright CF, Gregory-Jones S (2010) Size of the direct-to-consumer genomic testing market. Genet Med 12:594

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

YS was funded by an Erasmus Mundus Masters studentship, PB is funded by the Research Fund Flanders (FWO), and HCH is funded by the European Commission FP7 Marie Curie initiative. The authors thank the editor and two anonymous reviewers for their thoughtful and helpful comments.

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The authors declare that they have no conflict of interest.

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Correspondence to Yeyang Su.

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Su, Y., Howard, H.C. & Borry, P. Users’ motivations to purchase direct-to-consumer genome-wide testing: an exploratory study of personal stories. J Community Genet 2, 135–146 (2011). https://doi.org/10.1007/s12687-011-0048-y

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  • DOI: https://doi.org/10.1007/s12687-011-0048-y

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