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

Research output: Contribution to journalArticlepeer-review

Abstract

An informed choice about health-related direct-toconsumer 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.

Original languageEnglish (US)
Pages (from-to)433-439
Number of pages7
JournalJournal of Genetic Counseling
Volume21
Issue number3
DOIs
StatePublished - Jun 2012

Keywords

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

ASJC Scopus subject areas

  • Genetics(clinical)

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