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Insights from patients who have done genetic testing

saliva testDirect-to-consumer genetic testing is becoming increasingly common. With a simple saliva sample and a credit card swipe, patients can trace their DNA ancestry, find out their potential risks for certain diseases, and learn how they might respond to certain drugs. But access to this kind of information also raises questions and concerns about how these results may be interpreted and used outside of the doctor's office. So investigators at Loyola University Chicago Stritch School of Medicine did a small study to learn more about patients' genetic-testing experience.

For the study, researchers interviewed 20 patients recruited from primary care clinics and followed them through four points: saliva sample, results, three months after results, and 12 months after results. Among the findings, as outlined in a release:

  • Most participants thought results were fairly easy to understand – with the help of a genetic counselor (provided by the study, not the testing company). But fewer than half said they might be able to understand results on their own.
  • Most participants expressed no concern or hesitation about testing. But a few worried about confidentiality, especially whether the results could affect their health insurance coverage. A few also expressed fears about getting bad results. As one participant explained, “I mean, you want to know, but then you don’t want to know."
  • Participants gave several reasons why they decided to undergo testing. Most simply said they were curious. “I don’t have a scientific background, so a lot of it is just fascinating to see how all of that can spin out,” one participant said.

...

  • Most participants were pleased with results of the tests, mainly because they had not received bad news, despite the uncertainty of the results. “This makes me feel great,” said one such participant. “I know I’ll be around at least another year or two."
  • About half the participants said they had made no changes in response to results, mainly because there was nothing on which to act. But among a few participants, receiving “low-risk” results was a motivating factor to improve their health behavior, mainly through more exercise and a better diet.
  • One year after testing, most participants said they would take the test again and recommend it to others. “It’s as if you stepped into a time capsule and you went ahead in time and you can see something,” one participant said.

The work appears in the Journal of Community Genetics.

Previously: New recommendations for genetic disclosure releasedWhen it comes to your genetic data, 23andMe’s Anne Wojcicki says: Just own it, Film to document Stanford student’s decision to be genetically tested for Huntington’s disease, How genome testing can help guide preventative medicine and Stanford’s Hank Greely responds to reporter’s DNA dilemma
Photo by pellesten

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