Counseling customers: Emerging roles for genetic counselors in the direct-to-consumer genetic testing market

A. Harris*, S. E. Kelly, S. Wyatt

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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.
Original languageEnglish
Pages (from-to)277-288
Number of pages12
JournalJournal of Genetic Counseling
Volume22
Issue number2
Early online date25 Oct 2012
DOIs
Publication statusPublished - Apr 2013

Keywords

  • Direct-to-consumer genetic testing
  • Discourse analysis
  • GENOMIC ERA
  • Genetic counseling
  • Internet
  • MEDICINE
  • RISK
  • SERVICES
  • UNITED-STATES

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