Direct-to-consumer genetic testing: User motivations, decision making, and perceived utility of results

J. Scott Roberts, Michele C. Gornick, Deanna Alexis Carere, Wendy R. Uhlmann, Mack T. Ruffin, Robert C. Green

Research output: Contribution to journalArticlepeer-review

50 Scopus citations

Abstract

Background/Aims: To describe the interests, decision making, and responses of consumers of direct-to-consumer personal genomic testing (DTC-PGT) services. Methods: Prior to 2013 regulatory restrictions on DTC-PGT services, 1,648 consumers from 2 leading companies completed Web surveys before and after receiving test results. Results: Prior to testing, DTC-PGT consumers were as interested in ancestry (74% very interested) and trait information (72%) as they were in disease risks (72%). Among disease risks, heart disease (68% very interested), breast cancer (67%), and Alzheimer disease (66%) were of greatest interest prior to testing. Interest in disease risks was associated with female gender and poorer self-reported health (p < 0.01). Many consumers (38%) did not consider the possibility of unwanted information before purchasing services; this group was more likely to be older, male, and less educated (p < 0.05). After receiving results, 59% of respondents said test information would influence management of their health; 2% reported regret about seeking testing and 1% reported harm from results. Conclusion: DTC-PGT has attracted controversy because of the health-related information it provides, but nonmedical information is of equal or greater interest to consumers. Although many consumers did not fully consider potential risks prior to testing, DTC-PGT was generally perceived as useful in informing future health decisions.

Original languageEnglish (US)
Pages (from-to)36-45
Number of pages10
JournalPublic health genomics
Volume20
Issue number1
DOIs
StatePublished - Jun 1 2017

All Science Journal Classification (ASJC) codes

  • Public Health, Environmental and Occupational Health
  • Genetics(clinical)

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