A market in the making: the past, present and future of direct-to-consumer genomics

References

• Anonymous. 2012. “What Happened to Personalized Medicine?” Nature Biotechnology 30 (1): 1. doi: 10.1038/nbt.2096
   PubMed Web of Science ®Google Scholar
• Bloss, C. S., N. J. Schork, and E. J. Topol. 2011. “Effect of Direct-to-Consumer Genomewide Profiling to Assess Disease Risk.” New England Journal of Medicine 364 (6): 524–534. doi: 10.1056/NEJMoa1011893
   PubMed Web of Science ®Google Scholar
• Borry, P., M. C. Cornel, and H. C. Howard. 2010. “Where are You Going, Where have You Been: A Recent History of the Direct-to-Consumer Genetic Testing Market.” Journal of Community Genetics 1 (3): 101–106. doi: 10.1007/s12687-010-0023-z
   PubMedGoogle Scholar
• Borry, P., R. E. Van Hellemondt, D. Sprumont, C. F. D. Jales, E. Rial-Sebbag, T. M. Spranger, L. Curren, J. Kaye, H. Nys, and H. Howard. 2012. “Legislation on Direct-to-Consumer Genetic Testing in Seven European Countries.” European Journal of Human Genetics 20 (7): 715–721. doi: 10.1038/ejhg.2011.278
   PubMed Web of Science ®Google Scholar
• Caulfield, T., S. Chandrasekharan, Y. Joly, and R. Cook-Deegan. 2013. “Harm, Hype and Evidence: ELSI Research and Policy Guidance.” Genome Medicine 5 (21). doi:10.1186/gm425.
   Web of Science ®Google Scholar
• Caulfield, T., R. M. Cook-Deegan, F. S. Kieff, and J. P. Walsh. 2006. “Evidence and Anecdotes: An Analysis of Human Gene Patenting Controversies.” Nature Biotechnology 24 (9): 1091–1094. doi: 10.1038/nbt0906-1091
   PubMed Web of Science ®Google Scholar
• Curnutte, Margaret. 2017. “Regulatory Controls for Direct-to-Consumer Genetic Tests: A Case Study on how the FDA Exercised its Authority.” New Genetics and Society. doi:10.1080/14636778.2017.1354690.
   Web of Science ®Google Scholar
• Finlay, Teresa. 2017. “Testing the NHS: the tensions between personalised and collective medicine produced by personal genomics in the UK.” New Genetics and Society. doi:10.1080/14636778.2017.1351873.
   Web of Science ®Google Scholar
• Geransar, R., and E. Einsiedel. 2008. “Evaluating Online Direct-to-Consumer Marketing of Genetic Tests: Informed Choices or Buyers Beware?” Genetic Testing 12 (1): 13–23. doi: 10.1089/gte.2007.0024
   PubMedGoogle Scholar
• Green, R. C., and N. A. Farahany. 2014. “Regulation: The FDA is Overcautious on Consumer Genomics.” Nature 505: 286–287. doi: 10.1038/505286a
   PubMed Web of Science ®Google Scholar
• Green, E. D., M. S. Gruyer, E. D. Green, M. S. Guyer, T. A. Manolio, and J. L. Peterson. 2011. “Charting a Course for Genomic Medicine from Base Pairs to Bedside.” Nature 470 (7333): 204–213. doi: 10.1038/nature09764
   PubMed Web of Science ®Google Scholar
• Harris, A., S. Kelly, and S. Wyatt. 2016. CyberGenetics: Health Genetics and New Media. London: Routledge.
   Google Scholar
• Harris, A., and S. Wyatt. 2011. “Conceptualizing Trust in Digital Environments: Health-e Skepticism: Trust in the Age of the Internet.” Symposium on the Dynamics of the Internet and Society.
   Google Scholar
• Harris, A., S. Wyatt, and S. E. Kelly. 2013. “The Gift of Spit (and the Obligation to Return It).” Information, Communicaton & Society 16 (2): 236–257. doi: 10.1080/1369118X.2012.701656
   Web of Science ®Google Scholar
• Harvey, A. 2010. “Genetic Risks and Healthy Choices: Creating Citizen-Consumers of Genetic Services Through Empowerment and Facilitation.” Sociology of Health & Illness 32 (3): 365–381. doi: 10.1111/j.1467-9566.2009.01202.x
   PubMed Web of Science ®Google Scholar
• Hawkins, A. K., and A. Ho. 2012. “Genetic Counseling and the Ethical Issues Around Direct To Consumer Genetic Testing.” Journal of Genetic Counseling 21 (3): 367–373. doi: 10.1007/s10897-012-9488-8
   PubMed Web of Science ®Google Scholar
• Hennen, L., A. Sauter, and E. Van Den Cruyce. 2010. “Direct to Consumer Genetic Testing: Insights from an Internet Scan.” New Genetics and Society 29 (2): 167–186. doi: 10.1080/14636778.2010.484232
   Web of Science ®Google Scholar
• Hogarth, S. 2017a. “Valley of the Unicorns: Consumer Genomics, Venture Capital and Digital Disruption.” New Genetics and Society 36 (3): 250–272.
   Web of Science ®Google Scholar
• Hogarth, S. 2017b. “Diagnostics.” In Routledge Handbook of Genomics, Health and Society, edited by S. Hilgartner, S. Gibbon, B. Prainsack and J. Lamoreaux. London: Routledge.
   Google Scholar
• Hogarth, S., G. Javitt, and D. Melzer. 2008. “The Current Landscape for Direct-to-Consumer Genetic Testing: Legal, Ethical and Policy Issues.” Annual Review of Genomics and Human Genetics 9: 161–182. doi: 10.1146/annurev.genom.9.081307.164319
   PubMed Web of Science ®Google Scholar
• Ibaretta, D, and S. Hogarth. 2010. “International Conventions on Genetic Testing.” In Quality Issues in Clinical Genetic Services, edited by J.-J. Cassiman, U. Kristofferson, and J. Schmidtke. Springer.
   Google Scholar
• James, K. M., T. C. Cowl, J. Tilburt, P. S. Sinicrope, M. E. Robinson, K. R. Frimannsdottir, and B. A. Koenig. 2011. “Impact of Direct-to-Consumer Predictive Genomic Testing on Risk Perception and Worry among Patients Receiving Routine Care in a Preventive Health Clinic.” Mayo Clinical Proceedings 86 (10): 933–940. doi: 10.4065/mcp.2011.0190
   PubMed Web of Science ®Google Scholar
• Janssens, A. C. J. W., M. Gwinn, L. A. Bradley, B. A. Oostra, C. M. van Duijn, and M. J. Khoury. 2008. “A Critical Appraisal of the Scientific Basis of Commercial Genomic Profiles Used to Assess Health Risks and Personalize Health Interventions.” American Journal of Human Genetics 82 (3): 593–599. doi: 10.1016/j.ajhg.2007.12.020
   PubMed Web of Science ®Google Scholar
• Kaphingst, K. A., C. M. McBride, C. Wade, S. H. Alford, R. Reid, E. Larson, and L. C. Brody. 2012. “Patients’ Understanding of and Responses to Multiplex Genetic Susceptibility Test Results.” Genetics in Medicine 14 (7): 681–687. doi: 10.1038/gim.2012.22
   PubMed Web of Science ®Google Scholar
• Lippman, A. 1991. “Prenatal Genetic Testing and Screening: Constructing Needs and Reinforcing Inequities.” American Journal of Law and Medicine 17: 15–50.
   PubMed Web of Science ®Google Scholar
• Martin, P. 2015. “Commercialising Neurofutures: Promissory Economies, Value Creation and the Making of a New Industry.” BioSocieties 10 (4): 422–443. doi:10.1057/biosoc.2014.40 doi: 10.1057/biosoc.2014.40
   Web of Science ®Google Scholar
• McGowan, M. L., J. R. Fishman, and M. A. Lambrix. 2010. Personal Genomics and Individual Identities: Motivations and Moral Imperatives of Early Users. New Genetics and Society 29 (3): 261–290. doi: 10.1080/14636778.2010.507485
   PubMed Web of Science ®Google Scholar
• Messner, D. A. 2011. “Informed Choice in Direct-to-Consumer Genetic Testing for Alzheimer and Other Diseases: Lessons from Two Cases.” New Genetics and Society 30 (1): 59–72. doi: 10.1080/14636778.2011.552300
   PubMed Web of Science ®Google Scholar
• Nelkin, D. 1994. “Promotional Metaphors and Their Popular Appeal.” Public Understanding of Science 3 (1): 25–31. doi: 10.1088/0963-6625/3/1/002
   Google Scholar
• Nerlich, B., and I. Hellsten. 2004. “Genomics: Shifts in Metaphorical Landscape Between 2000 and 2003.” New Genetics and Society 23 (3): 255–268. doi: 10.1080/1463677042000305039
   PubMed Web of Science ®Google Scholar
• Nordgren, A., and E. T. Juengst. 2009. “Can Genomics Tell Me Who I Am? Essentialist Rhetoric in Direct-to-Consumer DNA Testing.” New Genetics and Society 28 (2): 157–172. doi: 10.1080/14636770902901595
   Web of Science ®Google Scholar
• Nuffield Council on Bioethics. 1993. Genetic Screening: Ethical Issues. London.
   Google Scholar
• Parthasarathy, S. 2007. Building Genetic Medicine: Technology, Breast Cancer and the Comparative Politics of Health Care. Cambridge: MIT Press.
   Google Scholar
• Philips, A. M. 2016. “Only a Click Away – DTC Genetics for Ancestry, Health, Love … and More: A View of the Business and Regulatory Landscape.” Applied & Translational Genomics 8: 16–22. doi: 10.1016/j.atg.2016.01.001
   PubMed Web of Science ®Google Scholar
• Philips, A. M. 2017. “Reading the Fine Print When Buying your Genetic Self Online: Direct-To-Consumer Genetic Testing Terms and Conditions.” New Genetics and Society. doi:10.1080/14636778.2017.1352468.
   Web of Science ®Google Scholar
• Plagnol, A. C., E. Rowley, P. Martin, and F. Livesey. 2009. “Industry Perceptions of Barriers to Commercialization of Regenerative Medicine Products in the UK.” Regenerative Medicine 4 (4): 549–559. doi: 10.2217/rme.09.21
   PubMed Web of Science ®Google Scholar
• Prainsack, B., J. Reardon, R. Hindmarsh, H. Gottweis, U. Naue, and J. E. Lunshof. 2008. “Personal Genomes: Misdirected Precaution.” Nature 456: 34–35. doi: 10.1038/456034a
   PubMed Web of Science ®Google Scholar
• Reardon, J. 2011. “The ‘Persons’ and ‘Genomics’ of Personal Genomics.” Personalized Medicine 8 (1): 95–107. doi: 10.2217/pme.10.74
   PubMed Web of Science ®Google Scholar
• Ruckenstein, M. 2017. “Keeping Data Alive: Talking DTC Genetic Testing.” Information, Communication & Society 20 (7): 1024–1039. doi: 10.1080/1369118X.2016.1203975
   Web of Science ®Google Scholar
• Saukko, P. 2013. “State of Play in Direct-to-Consumer Genetic Testing for Lifestyle-related Diseases: Market, Marketing Content, User Experiences and Regulation.” Proceedings of the Nutrition Society 72 (1): 53–60. doi: 10.1017/S0029665112002960
   PubMed Web of Science ®Google Scholar
• Saukko, P. 2017. “Shifting Metaphors in Direct-To-Consumer Genetic Testing: From Genes as Information to Genes as Big Data.” New Genetics and Society. doi:10.1080/14636778.2017.1354691.
   Web of Science ®Google Scholar
• Saukko, P. M., M. Reed, N. Britten, and S. Hogarth. 2010. “Negotiating the Boundary Between Medicine and Consumer Culture: Online Marketing of Nutrigenetic Tests.” Social Science & Medicine 70 (5): 744–753. doi: 10.1016/j.socscimed.2009.10.066
   PubMed Web of Science ®Google Scholar
• Stelmach, A., and B. Nerlich. 2015. “Metaphors in Search of a Target: The Curious Case of Epigenetics.” New Genetics and Society 34 (2): 196–218. doi: 10.1080/14636778.2015.1034849
   PubMed Web of Science ®Google Scholar
• Tutton, R. 2014. Genomics and the Reimagining of Personalized Medicine. Ashgate.
   Google Scholar
• Van Dijck, J., and T. Poell. 2016. “Understanding the Promises and Premises of Online Health Platforms.” Big Data & Society 3 (1). doi: 10.1177/2053951716654173
   Web of Science ®Google Scholar
• Wicklund, E. 2016. “FTC Takes the Lead in MHealth App Regulation.” mHealth Intelligence, March 24. https://mhealthintelligence.com/news/ftc-takes-the-lead-in-mhealth-app-regulation.
   Google Scholar
• Williams-Jones, B. 2003. “Where There’s a Web, There’s a Way: Commercial Genetic Testing and the Internet.” Community Genetics 6: 46–57.
   PubMedGoogle Scholar
• Wright, C. F., A. Hall, and R. L. Zimmern. 2011. “Regulating Direct-to-Consumer Genetic Tests: What is all the Fuss About?” Genetics in Medicine 13 (4): 295–300. doi: 10.1097/GIM.0b013e3181f69dd2
   PubMed Web of Science ®Google Scholar