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Personal genetic tests: genius or bogus?

From Thursday's Globe and Mail

When Kathy Dyck's weight ballooned to a lifetime high of 250 pounds, she ditched her usual weight-loss tricks: Atkins and other commercial diets.

Instead, Ms. Dyck, who lives on Vancouver Island, turned to the Internet and discovered a new and rapidly growing genre of personalized health products -- diets tailored to genetic makeup.

Ms. Dyck swabbed her inner cheek and mailed a DNA sample, along with a $550 (U.S.) fee, to a Seattle laboratory run by Genelex Corp. Soon, a 45-page report came back with nutritional advice that it said matched her genetic profile. Ms. Dyck's body needed more calcium, the report said, and was programmed to metabolize certain fats slowly.

"Some of it was Greek to me," admits Ms. Dyck, 56, a retired university administrator with two grown children. But she overhauled her diet according to the company's advice, adding more salmon, fruit and a daily multivitamin - and lost 42 pounds in six weeks. "It wasn't just everybody's diet," she says. "It was for me."

Canadians are increasingly tapping into a rapidly growing and largely unregulated world of direct-to-consumer genetic testing. With a quick Internet search, consumers can order tests that promise to reveal their risk for specific diseases, determine the best medicines for their genetic make-up, or personalize their diet and exercise program. The tests can cost up to $1,000 each and involve obtaining a DNA sample and mailing it to a laboratory, in most cases in the United States, for analysis.

But the alliance between genetics, the Internet and big business may not deliver on its promises.

Critics, including leading geneticists and health-policy advisers, say that many of the tests are unproven and unnecessary, and promise more than science can currently deliver. For most diseases, they say, genes are only one component of a complicated puzzle that determines who is at risk.

"Whatever information they're giving, it's not the whole story," says Kathy Siminovitch, a doctor who runs a genetic counselling service at Toronto's Mount Sinai Hospital.

Even more problematic, she and others say, is that people receive information but are not offered the resources to understand their results. Those who learn they carry risk genes for diseases such as breast cancer or cystic fibrosis get that news without having a doctor or genetic counsellor to advise them.

Dozens of companies, most of them U.S.-based, now offer direct-to-consumer genetic tests. Some predict a customer's risk for such ailments as heart disease, osteoporosis and cystic fibrosis. Pharmacogenetic tests are used to recommend medicines and dosages. Nutrigenetic tests, such as the one used by Ms. Dyck, use genetic information to tailor diet and exercise programs.

Right now, Canadian regulators have little authority over these tests. Only a small part of the service - the collection kits containing the inner-cheek swab materials - falls under Health Canada legislation. Once the cheek is swabbed and the sample is mailed back to the United States, testing falls under U.S. guidelines. And even if the lab and the tests are up to par, it's still up to the consumer to discern whether genetic testing companies are making legitimate claims.

A year ago, one of the industry's major players set up shop in Canada. Quixtar Inc. of Grand Rapids, Mich., has sold 10,000 of its two genetic tests to Canadians since opening up a distributor in London, Ont., says Lise Beland, the company's senior health-product marketer.

Its heart health genetic test, which predicts risk of cardiovascular disease, accounts for 60 per cent of sales and costs about $245 per test. A general nutrition genetic test costs about $135 and recommends vitamins and supplements, which are also sold by Quixtar.

"We're not trying to treat disease," Ms. Beland says. "We're giving risk factors and showing you how you're predisposed to different things."

Canadians are also buying genetic tests and services from U.S. companies through the Internet.

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