PhotoConsumers are taking a more proactive approach to managing their health care, which is probably a good thing. But they should always make sure the information they use to make decisions is reliable.

That's the takeaway from a new report that analyzed 55 cancer-related gene tests marketed directly to consumers on the Internet.

Problems with health information on the Internet isn't exactly new. A 2014 University of Florida study highlighted some of the areas where Dr. Internet comes up short. Now, researchers at the Dana-Farber Cancer Institute say they found that websites marketing personalized cancer care services tend to overemphasize the tests' purported benefits and downplay their limitations.

More problematic, they say, many sites promote genetic tests whose value for guiding cancer treatment “has not been shown to be clinically useful.” Their findings appear in the Journal of the National Cancer Institute.

Not always balanced information

“We wanted to see if consumers are getting a balanced picture of benefits and limitations of these services,” said Dr. Stacy Gray, first author of the report. “We found a lot of variation. Some of the information is good, but all of it needs to be looked at critically by consumers and health care providers.”

Besides focusing on the positives and glossing over the drawbacks, these tests include some that didn't pass the researchers' smell test.

“Eighty-eight percent of the websites offered one or more 'nonstandard' test that lacked evidence of clear clinical utility in routine oncology practice,” Gray said.

The report found a wide variety of marketing claims, such as reducing medication errors and improving patient care. Some said their “enhanced treatment options” extended life expectancy.

“Our laboratory analyzes your tumor’s response to 8-16 drugs and combinations to identify which treatments will work best to kill your cancer,” one claim boasts.

Not regulated

Gray points out that claims and other information posted on Internet sites are not subject to regulation by agencies such as the Food and Drug Administration (FDA) or the Federal Trade Commission (FTC). Recently, however, the FDA has said it intends to begin regulating genomic testing more broadly.

What does the FTC have to say about these tests? It cites other agencies – in particular the FDA and the Centers for Disease Control and Prevention (CDC) in saying “some of these tests lack scientific validity, and others provide results that are meaningful only in the context of a full medical evaluation.”

Because of the complexities of both the tests and the interpretation of their results, both the FDA and CDC say that genetic tests should be conducted in registered laboratories that are certified to handle specimens. Also, the results may need to be interpreted by a doctor or trained counselor who understands the value of genetic testing for a particular situation.

Company claims

Some companies claim that genetic tests can measure the risk of developing a particular disease, like heart disease, diabetes, cancer, or Alzheimer’s. But according to the FTC, again citing the FDA and CDC, the risks of developing these diseases come from many sources, not just genetic changes, and that valid studies are necessary to prove these tests give accurate results.

Gray says regulation of these websites may become a reality, but even if it does oncology providers will still need to guide patients as they navigate decisions about personalized cancer medicine.

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