Counseling Customers: Emerging Roles for Genetic Counselors in the Direct-to-Consumer Genetic Testing Market
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ORIGINAL RESEARCH
Counseling Customers: Emerging Roles for Genetic Counselors in the Direct-to-Consumer Genetic Testing Market Anna Harris & Susan E. Kelly & Sally Wyatt
Received: 11 October 2011 / Accepted: 1 October 2012 / Published online: 25 October 2012 # The Author(s) 2012. This article is published with open access at Springerlink.com
Abstract 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 A. Harris (*) : S. E. Kelly ESRC Centre for Genomics in Society, Egenis, University of Exeter, Byrne House, St German’s Road, Exeter EX1 4PJ, UK e-mail: [email protected] S. E. Kelly e-mail: [email protected] S. Wyatt Technology & Society Studies Department, Faculty of Arts and Social Sciences, Maastricht University, PO Box 616, 6200 MD, Maastricht, The Netherlands e-mail: [email protected]
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. Keywords Genetic counseling . Internet . Direct-to-consumer genetic testing . Discourse analysis
Introduction While genetic testing has been an established clinical practice for some time (de Vries 2008), it has only been in recent years that direct-to-consumer genetic testing (DTC GT) has emerged as part of what is now a thriving healthcare marketplace. Through the internet, people currently have access to a variety of genetic testing products which make claims about establishing paternity, ancestry and predisposition to a growing num
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