Journal of Genetic Counseling

, Volume 21, Issue 3, pp 433–439 | Cite as

Informed Choice in Direct-to-Consumer Genetic Testing (DTCGT) Websites: A Content Analysis of Benefits, Risks, and Limitations

  • Amanda Singleton
  • Lori Hamby Erby
  • Kathryn V. Foisie
  • Kimberly A. Kaphingst
Original Research

Abstract

An informed choice about health-related direct-to-consumer genetic testing (DTCGT) requires knowledge of potential benefits, risks, and limitations. To understand the information that potential consumers of DTCGT services are exposed to on company websites, we conducted a content analysis of 23 health-related DTCGT websites. Results revealed that benefit statements outweighed risk and limitation statements 6 to 1. The most frequently described benefits were: 1) disease prevention, 2) consumer education, 3) personalized medical recommendations, and 4) the ability to make health decisions. Thirty-five percent of websites also presented at least one risk of testing. Seventy-eight percent of websites mentioned at least one limitation of testing. Based on this information, potential consumers might get an inaccurate picture of genetic testing which could impact their ability to make an informed decision. Practices that enhance the presentation of balanced information on DTCGT company websites should be encouraged.

Keywords

Direct-to-consumer Genetic testing Internet Informed choice Persuasion Content analysis 

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Copyright information

© National Society of Genetic Counselors, Inc. 2011

Authors and Affiliations

  • Amanda Singleton
    • 1
    • 3
  • Lori Hamby Erby
    • 2
  • Kathryn V. Foisie
    • 3
  • Kimberly A. Kaphingst
    • 4
  1. 1.GeneDxGaithersburgUSA
  2. 2.Health, Behavior and SocietyJohns Hopkins Bloomberg School of Public HealthBaltimoreUSA
  3. 3.National Human Genome Research InstituteBethesdaUSA
  4. 4.Division of Public Health Sciences, Department of SurgeryWashington University School of MedicineSt. LouisUSA

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