And many sites offer tests that have not been proven to be useful in guiding cancer treatment, according to the Dana-Farber Cancer Institute team that analyzed 55 such websites.
“We wanted to see if consumers are getting a balanced picture of benefits and limitations of these services,” said study first author Dr. Stacy Gray in an institute news release. She is a medical oncologist and investigator at the Dana-Farber Center for Outcomes and Policy Research in Boston.
“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,” she said.
In general, “the benefits of these personalized cancer products are reported much more frequently than are the limitations,” Gray said.
The researchers also found that 88 percent of the websites offered one or more “nonstandard” tests that lacked evidence of having value in routine cancer care.
The study was published March 5 in the Journal of the National Cancer Institute.
Some sites marketed tests of a tumor’s genetic characteristics, while others analyzed a patient’s personal genome, or gene profile, looking for altered genes that might raise a healthy person’s risk of developing cancer.
Claims and other information on websites are not regulated by agencies such as the U.S. Food and Drug Administration or the Federal Trade Commission, the researchers noted. Recently, the FDA said it intends to start regulating genetic testing more broadly.
Even if genetic testing websites become regulated, cancer specialists “will need to guide patients as they navigate decisions about personalized cancer medicine,” the study authors wrote.
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