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Genetic testing debate: A DIY do or don't?

April 18, 2011 |  6:29 pm

Gentic Testing

Genetic testing has always provoked debate. Among the arguments is whether people should know that they're predisposed to diseases there's no cure for. The controversy has been kicked up a notch now that genetic testing has hit the consumer market in the form of DIY kits similar to home pregnancy tests. On the one hand, it makes genetic information more accessible. On the other, that information is unfiltered.  

In Monday's Los Angeles Times, the Health section presents both sides of the argument in "Do-it-yourself DNA testing: A risk or a right?"

Speaking against DIY gene tests is Dr. Bruce R. Korf, chairman of the department of genetics at the University of Alabama at Birmingham. He argues that genetic information should be provided by medical professionals who understand what the data mean. Here's part of his argument:

First, people could make decisions about their health based on information that they have incorrectly interpreted. Because of their test results, they may want to pursue invasive or expensive interventions, ranging from imaging studies to blood tests, when their risk for disease is actually very modest. Also, the test results may not even be accurate for them if the genetic link to a disease were found in people of European descent but they happen to be of different heritage, such as Asian or African.

Other people might mistakenly think they are protected from disease and modify their behavior in a negative way. For instance, someone who finds out that he is at decreased risk for type 2 diabetes might decide that losing weight and exercising isn't important for him anymore, so he changes his lifestyle in a way that could still lead to diabetes.

Misha Angrist, assistant professor at the Duke University Institute for Genome Sciences and Policy, presents the other side of the debate, reasoning that people have a right to their personal information should they seek it out:

You hear talk of people jumping off buildings because they view their genetics information as deterministic, that the tests are dangerous and people can't handle the truth. But all of the evidence we have suggests that those types of responses are extremely rare. […]

By pursuing direct-to-consumer genetic testing, we stand to gain a different relationship with genetics and with ourselves. We are less likely to be governed by fear, and we are more apt to understand that genes are not destiny. If and when interventions or therapies become available for what are currently untreatable, devastating inherited diseases, by already having our susceptibility information we presumably will be in a better position to act.

I suspect that the public is not as stupid as the paternalists think they are.

The Opinion pages recently shed light on the genetic testing debate as well. In an Op-Ed article, Lilly Fowler pointed to the Government Accountability Office, which found:

Inconsistent results:
In the 2010 investigation, GAO staffers sent the same DNA samples to four companies and received wildly varying results. In one case, a DNA donor was declared by one company to be at below-average risk of getting prostate cancer and hypertension, while other test kit companies found the donor to be at average or above-average risk.

Dubious agendas:
The GAO investigators also discovered that some of the kit companies were making bogus pitches to try to peddle dietary supplements, including claiming that they could use a consumer's DNA to create personalized supplements to cure diseases.

Careless evaluation:
Aside from the slippery evaluations and shoddy marketing practices, there also is the question of whether consumers -- even those lucky enough to buy kits from aboveboard companies -- are up to the challenge of interpreting the results. Last month, an FDA official said the agency might require some of the evaluations to be ordered or interpreted by a doctor.

Where do you fall on the matter of genetic testing? Is knowledge power, so long as it's taken with a grain of salt? Or should the FDA pull these DIY genetic tests from the shelves?

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--Alexandra Le Tellier

Illustration by Jose J. Santos / Los Angeles Times

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