Genetic testing industry's future under the microscope

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Has the industry gotten out of hand?

Technology has outpaced regulation. There are all sorts of other products available where as consumers we all need to be informed before making a purchase. This may not be any different.

Where there may need to be more scrutiny is in the claims being made about the value of the information. If we're going to give consumers information, it should be valid, useful information. People have to enter into the testing knowing exactly what the limits, the benefits and the risks potentially are. Otherwise it's unethical.

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What's the potential harm?

The emotional harm of finding out something that completely blindsides you, like [being at risk for] Alzheimer's disease. There's the financial harm of doing a lot of screening tests [for a disease] and then finding out five years later you never needed to do that. If you find out you're at low risk for heart disease, then you don't cut back on that extra hamburger, you don't exercise. What if that's against the medical advice you've gotten from your physician? That's a potential harm.

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Are there other consequences of getting a genetic test?

People should think about how it might impact the rest of their family. It's a little different than other tests like cholesterol testing.

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How so?

If you find out you have a baby affected with some condition, and your female relatives could have the same thing, I think there's an obligation to share that information.

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Are you surprised by the proliferation of genetic tests offered directly to consumers?

Yes, I am absolutely surprised by the proliferation of DTC [direct-to-consumer] tests and nonmedical tests in general. When I graduated in 1994, the BRCA1 and BRCA2 genes [for breast cancer] had not yet been identified, and cystic fibrosis and Huntington disease genes had just been identified. I am amazed at how quickly the number of even the medical genetic tests has increased.

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What is your greatest worry about the future of genetic testing?

Access. If personalized medicine does what it promises to do, we should all be healthier. But personalized medicine will not work if we still have over 30% of our population uninsured or without access to affordable healthcare. This will result in more health disparities.

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Have you taken any of these tests yourself?

No. I'm not sure I'd want to know I'm at risk for something that I might not really be at risk for. Why do I want to make myself worried?

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karen.kaplan@latimes.com