Comprehension and data-sharing behavior of direct-to-consumer genetic test customers

Scott P. McGrath, Jason D Coleman, Lotfollah Najjar, Ann L Fruhling, Dhundy Raj Bastola

Research output: Contribution to journalArticle

15 Scopus citations

Abstract

Aim: The aim of this study was to evaluate current direct-to-consumer (DTC) genetic customers' ability to interpret and comprehend test results and to determine if honest brokers are needed. Method: One hundred and twenty-two customers of the DTC genetic testing company 23andMe were polled in an online survey. The subjects were asked about their personal test results and to interpret the results of two mock test cases (type 2 diabetes and multiple sclerosis), where results were translated into disease probability for an individual compared to the public. Results: When asked to evaluate the risk, 72.1% correctly assessed the first case and 77% were correct on the second case. Only 23.8% of those surveyed were able to interpret both cases correctly. χ2 and logistic regression were used to interpret the results. Participants who took the time to read the DTC test-provided supplemental material were 3.93 times (p = 0.040) more likely to correctly interpret the test results than those who did not. The odds for correctly interpreting the test cases were 3.289 times (p = 0.011) higher for those who made more than USD 50,000 than those who made less. Survey results were compared to the Health Information National Trends Survey (HINTS) phase 4 cycle 3 data to evaluate national trends. Conclusions: Most of the subjects were able to correctly interpret the test cases, yet a majority did not share their results with a health-care professional. As the market for DTC genetic testing grows, test comprehension will become more critical. Involving more health professionals in this process may be necessary to ensure proper interpretations.

Original languageEnglish (US)
Pages (from-to)116-124
Number of pages9
JournalPublic Health Genomics
Volume19
Issue number2
DOIs
Publication statusPublished - Apr 1 2016

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Keywords

  • Data-sharing behavior
  • Direct-to-consumer genetic test
  • Honest brokers
  • Risk comprehension

ASJC Scopus subject areas

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

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