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Journal of Genetic Counseling

, Volume 22, Issue 2, pp 277–288 | Cite as

Counseling Customers: Emerging Roles for Genetic Counselors in the Direct-to-Consumer Genetic Testing Market

  • Anna HarrisEmail author
  • Susan E. Kelly
  • Sally Wyatt
Original Research

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 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 

Notes

Acknowledgements

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.

Open Access

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.

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© The Author(s) 2012

Open AccessThis article is distributed under the terms of the Creative Commons Attribution 2.0 International License (https://doi.org/creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Authors and Affiliations

  1. 1.ESRC Centre for Genomics in Society, EgenisUniversity of ExeterExeterUK
  2. 2.Technology & Society Studies Department, Faculty of Arts and Social SciencesMaastricht UniversityMaastrichtThe Netherlands

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