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In-Home Genetic Tests Represent Risk

by Jesse ReynoldsNewsday
October 22nd, 2007

Residents of Long Island and elsewhere in the Northeast will soon see television ads recommending they "Be ready against cancer." One might assume these to be public service announcements calling for more exercise or diets rich in antioxidants. Instead, the ads will promote a test for genes related to breast cancer.

Although this will be the first major direct-to-consumer campaign promoting genetic testing, the manufacturer of the test will not be mentioned. Instead, small text at the bottom of the screens will let viewers know the ad is a "service" of Myriad Genetics, which holds patents on the tested genes.

Myriad's test is likely to be the tip of the iceberg, and what it suggests for the future is quite alarming. We'll soon see more advertising campaigns that, like those of drugs, prey on our insecurities and fears. And unlike Myriad's test, which must be ordered through your doctor, an increasing number of these will be available over the counter and performed in the privacy - and isolation - of your own home.

This trend highlights three troubling aspects of the increasing promotion of at-home genetic tests.

First, the relationship between genes and diseases is complex, and test results can easily be presented or interpreted poorly. Numerous factors - inherited, environmental and behavioral - contribute to most diseases. Testing positive for a gene related to a disease is not the same as having the disease, or even being certain to develop it.

Despite the complexity, news headlines regularly trumpet discoveries of "the Alzheimer's gene" or "the Parkinson's gene." It's no surprise that many people, including doctors, have an overly simplified view of this relationship. Many primary care physicians often are too busy or inadequately informed to help their patients fully understand test results. On top of this, there's a shortage of trained genetic counselors who can explain the consequences of testing positive for a gene and recommend a range of responses.

This situation will likely only worsen as such tests move from clinic to home, as the potentially profound information gleaned from genetic tests can be difficult to process in isolation from the broader medical context and counseling resources more readily available in clinics.

For example, how should you react to news of a positive test? What about the case of a positive test for a fatal, untreatable condition?

And will negative results lead people to be unduly apathetic? In the case of breast cancer, other genes as well as environmental factors contribute to the disease. A woman whose family has a history of breast cancer but who has tested negative for this particular mutation should still remain vigilant.

Secondly, the ubiquity of direct-to-consumer advertising reflects its success. In the United States - one of only two countries (New Zealand is the other) that readily allow ads of prescription drugs for the general public - it is a multibillion dollar annual business, and growing rapidly.

Of course, pharmaceutical and biotechnology companies are in the business of maximizing profits, and they advertise because it's effective. One study showed that for each dollar spent in promotion, companies see $4.20 in increased profit. Another found that 70 percent of doctors prescribe the drugs requested by patients who had seen or heard the commercials.

The persuasive power of advertising and the desire for corporate profits could eventually lead to excessive genetic testing. For example, ads helped propel Vioxx to $2.5 billion in annual sales before its manufacturer responded to evidence that the drug increased the risk of heart attacks and pulled it from the market.

Finally, users of genetic tests are vulnerable to discrimination by insurers and employers, particularly without regulatory checks in place to guarantee confidentiality of test results. It's in the interests of these powerful institutions to know any genetic dispositions toward diseases among their clients and employees. Although a bill prohibiting genetic discrimination - the Genetic Information Nondiscrimination Act - is working its way through Congress, it's presently legal for companies to refuse coverage or employment.

We must tread carefully into the profit-driven genetic test market. While passage of the Genetic Information Nondiscrimination Act would be a positive step, it is merely a first one. With the launch of Myriad's ad campaign, now is the ideal time to begin a public discussion of other protections, such as limits on claims ads can make. Our genome is too important, and complex, to entrust to Madison Avenue.

Jesse Reynolds is a policy analyst at the Center for Genetics and Society, a public interest advocacy organization, and a contributor to the blog Biopolitical Times.

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