"It's not like judgment day": Public understanding of and reactions to personalized genomic risk information

Erynn S. Gordon, Georgia Griffin, Lisa Wawak, Hauchie Pang, Sarah E. Gollust, Barbara A. Bernhardt

Research output: Contribution to journalArticlepeer-review

47 Scopus citations

Abstract

The value of genomic risk assessment depends upon patients making appropriate behavioral changes in response to increased risk leading to disease prevention and early detection. To date, few studies have investigated consumers' response to personalized genomic disease risk information. To address this gap, we conducted semistructured interviews with 60 adults participating in the Coriell Personalized Medicine Collaborative. The interviews took place after receiving results providing genomic and other risk information for up to eight common complex diseases. We found that participants were most likely to recall results which conferred an increased risk or those of particular personal interest. Participants understood the multi-factorial nature of common complex disease, and generally did not have negative emotional responses or overly deterministic perceptions of their results. Although most participants expressed a desire to use results to improve their health, a minority had actually taken action (behavior change or shared results with their doctor) at the time of the interview. These results suggest that participants have a reasonable understanding of genomic risk information and that provision of genomic risk information may motivate behavior change in some individuals; however additional work is needed to better understand the lack of change seen in the majority of participants.

Original languageEnglish (US)
Pages (from-to)423-432
Number of pages10
JournalJournal of Genetic Counseling
Volume21
Issue number3
DOIs
StatePublished - Jun 1 2012

Keywords

  • Behavioral change
  • Direct-to-consumer genetic testing
  • Genetic testing
  • Genomic risk
  • Personalized medicine
  • Public understanding
  • Qualitative research
  • Risk assessment

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