Genetic testing is gaining popularity and can be beneficial, but consumers have to watch out for quality standards in an industry with limited government regulation, legal experts say. (Photo by Alicia Gonzales/Cronkite News)
PHOENIX – Federal guidelines that govern genetic testing were relaxed last year, raising concerns about safety and accuracy, an Arizona legal expert says.
“To be able to understand our own bodies and our own futures is wonderful. It’s just a matter of us making sure that we aren’t getting ahead of the science – that we’re not spending millions of dollars on tests that aren’t yet proven to be valid” and don’t offer clinical insights, said Christopher Robertson, associate dean for Research and Innovation for Law at the University of Arizona.
Robertson and Charles Piller, an investigative journalist for “Science” magazine, said most people aren’t aware of the disadvantages of genetic tests, but they warned there are several to watch out for, including emotional and psychological distress. They spoke during a session of the Association of Health Care Journalists conference last week in Phoenix.
Test results can be wrong
Tests can show a genetic predisposition to a condition, such as breast cancer or Alzheimer’s, Robertson said, but that doesn’t mean the findings are accurate. Some people reading test results are unqualified, and certain genes can trigger allergies to foods and medicines but false readings of those can endanger someone’s health.
“You can do real damage if (tests are) not read properly,” Robertson said.
Piller reported and wrote about a genetic testing company that worked on testing for about 50,000 participants, which is worrisome because accurate and quality testing takes time and is costly and tedious, he said.
Your doctor may have an ulterior motive
Doctors can receive money from a genetic testing company but may not disclose that when suggesting a patient take a test. And physicians may be biased toward products they sponsor, which can lead to unnecessary testing, Piller said.
Government regulation is limited
The FDA in 2017 announced less strict regulations for genetic health tests. Robertson said deregulation means consumers are less protected. Pricing isn’t standard, so that means prices could soar and people can’t determine if the tests are worth the money. And the quality of a company quality is unknown under loosened guidelines.