Undercover investigation finds “egregious examples of deceptive marketing”

“Egregious examples of deceptive
marketing”. No, not door-to-door life insurance or encyclopaedias. This was how
the US Government Accountability Office described firms selling genetic testing
kits after an undercover operation.

Federal investigators bought 10 kits each
from four of the companies, selected real donors to send in samples for
testing, and made calls to the companies posing as fictitious customers seeking
health advice. The four companies were 23andMe, Pathway Genomics, DeCode Genetics and Navigenics.

According to the GAO, the companies had
sent donors different results for the same sample and told donors that they had
a reduced risk of getting diseases that they already had. Also, the report said
that two companies suggested that personalised supplements to cure diseases
could be formulated using a customer’s DNA. One company representative told a
consumer she had a high risk for breast cancer, despite the fact that the
company did not actually test for the BRCA1 and BRCA2 breast cancer mutations.
Another customer with a pacemaker implanted 13 years ago to treat an irregular
heartbeat was told that he was at a decreased risk of developing that
condition.

Kari Stefansson, executive chairman and
president of research at Iceland-based DeCode Genetics,
has denied the charges in the report, calling them “slanderous claims about
sloppiness and misleading work.”

Stefansson said that DeCode provides
consumers with accurate genetic risk assessments that are based on validated
science. He also says that both genetic and environmental risk factors must be
taken into account for certain diseases. “The fact that someone develops a
heart attack,” he said, “does not mean he has a high genetic risk for heart
attack.”

Congress and the Food and Drug
Administration are currently investigating the genetic testing market for. Some
officials have expressed concerns over the quality of the tests and the degree
of variance between analyses by different companies. Also, many are concerned
that people will make medical decisions based on the results without consulting
the appropriate medical professionals. ~ New York
Times, Jul 22

Jared Yee
genetic testing

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Michael Cook

Michael Cook edits BioEdge, a bioethics newsletter, and MercatorNet, an on-line magazine whose focus is human dignity. He writes from Sydney, Australia.

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