Counseling Customers: Emerging Roles for Genetic Counselors in the Direct-to-Consumer Genetic Testing Market
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Individuals now have access to an increasing number of internet resources offering personal genomics services. As the direct-to-consumer genetic testing (DTC GT) industry expands, critics have called for pre- and post-test genetic counseling to be included with the product. Several genetic testing companies offer genetic counseling. There has been no examination to date of this service provision, whether it meets critics’ concerns and implications it may have for the genetic counseling profession. Considering the increasing relevance of genetics in healthcare, the complexity of genetic information provided by DTC GT, the mediating role of the internet in counseling, and potential conflicts of interest, this is a topic which deserves further attention. In this paper we offer a discourse analysis of ways in which genetic counseling is represented on DTC GT websites, blogs and other online material. This analysis identified four types of genetic counseling represented on the websites: the integrated counseling product; discretionary counseling; independent counseling; and product advice. Genetic counselors are represented as having the following roles: genetics educator; mediator; lifestyle advisor; risk interpreter; and entrepreneur. We conclude that genetic counseling as represented on DTC GT websites demonstrates shifting professional roles and forms of expertise in genetic counseling. Genetic counselors are also playing an important part in how the genetic testing market is taking shape. Our analysis offers important and timely insights into recent developments in the genetic counseling profession, which have relevance for practitioners, researchers and policy makers concerned with the evolving field of personal genomics.
KeywordsGenetic counseling Internet Direct-to-consumer genetic testing Discourse analysis
We thank Jan Hodgson, Ine van Hoyweghen and Heather Skirton for their insightful comments on earlier drafts of this paper.
The research is funded from a grant from the Netherlands Organisation for Scientific Research-Economic and Social Research Council Bilateral Agreement Scheme.
This article is distributed under the terms of the Creative Commons Attribution License which permits any use, distribution, and reproduction in any medium, provided the original author(s) and the source are credited.
- American Board of Genetic Counseling. (2009). Practice-based competencies. https://doi.org/www.abgc.net/docs/Practice%20Based%20Competencies_Aug%202006%2010-29-09.pdf. Accessed 6 January 2012.
- American College of Medical Genetics Board of Directors. (2004). ACMG statement on direct-to-consumer genetic testing. Genetics in Medicine, 6(1), 60. doi: https://doi.org/10.1097/01.GIM.0000106164.59722.CE.Google Scholar
- Arribas-Ayllon, M., Sarangi, S., Clarke, A. (2012). Ethical decision-making in expert and family systems: The dynamics of trust-distrust in genetic testing. Paper presented on the 29th June at the Tenth Interdisciplinary Conference Communication, Medicine & Ethics, Trondheim, Norway.Google Scholar
- Denzin, N., & Lincoln, Y. (2011). The SAGE handbook of qualitative research. London: Sage.Google Scholar
- Featherstone, K., Atkinson, P., Bharadwaj, A., & Clarke, A. (2006). Risky relations: family, kinship and the new genetics. Oxford: Berg.Google Scholar
- Genetics and Public Policy Center. (2006). Direct-to-consumer genetic testing: empowering or endangering the public? https://doi.org/www.dnapolicy.org/policy.issue.php?action=detail&issuebrief_id=32. Accessed 10 May 2011 (Archived by WebCite® at https://doi.org/www.webcitation.org/5znzdZmqv).
- Genetics and Public Policy Center. (2010). Direct-to-consumer genetic testing companies. https://doi.org/www.dnapolicy.org/resources/AlphabetizedDTCGeneticTestingCompanies.pdf. Accessed 10 May 2011 (Archived by WebCite® at https://doi.org/www.webcitation.org/5znzI162L).
- Genetics and Public Policy Center. (2011). Direct-to-consumer genetic testing companies. https://doi.org/www.dnapolicy.org/news.release.php?action=detail&pressrelease_id=145. Accessed 17 August 2011 (Archived by WebCite® at https://doi.org/www.webcitation.org/610DDbCns).
- Hall, S. (Ed.). (1997). Representation: cultural representation and signifying practices. London: Sage/Open University.Google Scholar
- Hercher, L. (2009). DC takes on DTC: The “T” doesn’t stand for tomorrow anymore. https://doi.org/thednaexchange.com/2009/09/04/dc-takes-on-dtc-the-t-doesnt-stand-for-tomorrow-anymore. Accessed 28 April (Archived by WebCite® at https://doi.org/www.webcitation.org/5yHgvXiTK).
- Hudson, K., Javitt, G., Burke, W., Byers, P., Social Issues, A. S. H. G., & ASHG Social Issues Committee. (2007). ASHG statement on direct-to-consumer genetic testing in the United States. The American Journal of Human Genetics, 81, 635–637. doi: https://doi.org/10.1097/01.AOG.0000292086.98514.8b.CrossRefGoogle Scholar
- Lea, D. H., Jenkins, J. F., & Francomano, C. A. (1998). Genetics in clinical practice: new directions for nursing and health care. Toronto: Jones and Bartlett Publishers.Google Scholar
- Lupton, D. (1997). Foucault and the medicalisation critique. In A. Petersen & R. Bunton (Eds.), Foucault, health and medicine (pp. 94–112). London: Routledge.Google Scholar
- National Society of Genetic Counselors. (2010a). Consumers should be mindful of DTC genetic testing: Don’t bypass genetic counselors, medical geneticists or other healthcare providers. Chicago. https://doi.org/www.nsgc.org/client_files/news/040609dtc.pdf. Accessed 5 May 2011 (Archived by WebCite® at https://doi.org/www.webcitation.org/5zx2YwWhX).
- National Society of Genetic Counselors. (2010b). National Society of Genetic Counselors Professional Status Survey 2010, Executive Summary. https://doi.org/www.nsgc.org/Publications/ProfessionalStatusSurvey/tabid/142/Default.aspx. Accessed 6 January 2012.
- National Society of Genetic Counselors. (2011). FAQs about Genetic Counselors and the NSGC. https://doi.org/www.nsgc.org/About/FAQsaboutGeneticCounselorsandtheNSGC/tabid/143/Default.aspx. Accessed 11 August (Archived by WebCite® at https://doi.org/www.webcitation.org/60qxjfXLH).
- Nuffield Council on Bioethics. (2010). Medical profiling and online medicine: The ethics of ‘personalised healthcare’ in a consumer age. London: Nuffield Council on Bioethics. https://doi.org/www.nuffieldbioethics.org/personalised-healthcare-0. Accessed 20 February 2011 (Archived by WebCite® at https://doi.org/www.webcitation.org/5zx5028ky).
- Petrakaki, D., Cornford, T., Hibberd, R., Lichtner, V., & Barber, N. (2011). The role of technology in shaping the professional future of community pharmacists: the case of the electronic prescription service in the English National Health Service. Researching the Future in Information Systems, 356, 179–195. doi: https://doi.org/10.1007/978-3-642-21364-9_12.CrossRefGoogle Scholar
- Powell, K., Christianson, C., Cogswell, W., Dave, G., Verma, A., Eubanks, S., & Henrich, V. (2012). Educational needs of primary care physicians regarding direct-to-consumer genetic testing. Journal of Genetic Counseling, 21(3), 469–478. doi: https://doi.org/10.1007/s10897-011-9471-9.CrossRefGoogle Scholar
- Rees, G., Young, M.-A., Gaff, C., & Martin, P. (2006). A qualitative study of health professionals’ views regarding provision of information about health-protective behaviors during genetic consultation for breast cancer. Journal of Genetic Counseling, 15(2), 95–104. doi: https://doi.org/10.1007/s10897-005-9009-0.CrossRefGoogle Scholar
- Skirton, H., Lewis, C., Kent, A., & Coviello, D. A. (2010). Genetic medicine and the challenge of genomic medicine: development of core competencies to support preparation of health professionals in Europe. European Journal of Human Genetics, 18, 972–977. doi: https://doi.org/10.1038/ejhg.2010.64.CrossRefGoogle Scholar
- Wade, C. H., & Wilfond, B. S. (2006). Ethical and clinical practice considerations for genetic counselors related to direct-to-consumer marketing of genetic tests. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 142C(4), 284–292. doi: https://doi.org/10.1002/ajmg.c.30110.CrossRefGoogle Scholar
- Waltho, S. (2011). Learning to create opportunity. https://doi.org/thednaexchange.com/2011/03/17/learning-to-create-opportunity. Accessed 21 April 2011 (Archived by WebCite® at https://doi.org/www.webcitation.org/5y6bmbwtT).
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