Keeping Genetic Discrimination at Bay If made into law, the Genetic Non-Discrimination Act would bar prejudicial treatment based solely on genetic data, such as genetic predisposition to disease. Dr. Kathy Hudson strongly recommended the move when she appeared before the House Energy and Commerce Committee on Health.
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Keeping Genetic Discrimination at Bay

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Keeping Genetic Discrimination at Bay

Keeping Genetic Discrimination at Bay

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  • <iframe src="" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
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So if this bill passes, are the concerns of people like Rebecca Fisher over? For answers, we turn to Kathy Hudson. She's the founder and director of the Genetics and Public Policy Center, and she's also an associate professor at the Johns Hopkins Berman Bioethics Institute.

So glad you're with us here in the studio. Welcome to the program.

Dr. KATHY HUDSON (Founder and Director, Genetics and Public Policy Center): Glad to be here. Thank you.

NORRIS: So you are strongly in favor of the bill. Are there any loopholes that you're worried about?

Dr. HUDSON: Well, this bill is a very complicated bill, and it's going through three committees in the House simultaneously, and so it's still sort of being work out - the details. But if the bill, as it was introduced, is the bill that is passed on the floor of the House, it will provide really strong protections against genetic discrimination.

NORRIS: Now a lot of this genetic information is going to be in your medical record if you undergo these tests, and that is available to insurers. So what's to keep them from denying coverage based on that information and claiming that it's actually for some other reason?

Dr. HUDSON: Well, it would be against the law if this bill passes for them to do that. It is inevitable that genetic information will end up in medical records. And, in fact, we want it to encourage genetic information to be in people's medical records so that doctors can take the very best possible care of their patients. Right now, patients are getting tested under assumed names, not putting that information in the medical records or having the medical record - their doctors keep shadow medical records.

And so that really prevents them from getting the very best care. So if they can be confident in the protections that are available and know that this information can't be used to discriminate against them, then hopefully we'll have better help-seeking behaviors on the part of patients.

NORRIS: Right now, a lot of patients, though, seem to take a don't-ask, don't-tell approach to genetic testing. They avoid it because they're afraid that it might harm their chances of getting employment in the future. How do you change that, even with this legislation?

Dr. HUDSON: Once this bill passes, I think we have a very big challenge in front of us, which is making sure that doctors, employers, employees and the general public know that their information is protected, and that when they make decisions to get a genetic test, there's many things you need to think about. Do you want that information? How is it going to affect your life? How is it going to affect your medical care? How is it going to affect your family members? These are really profound questions that people need to be thinking about. But one thing that they shouldn't have to worry about and won't have to worry about is that this information will be used to discriminate.

NORRIS: Kathy Hudson, there's actually been very few documented cases of genetic discrimination. Is this bill essentially a solution in search of a problem?

Dr. HUDSON: You know, when this bill was originally drafted and introduced in the mid-90s, there were far fewer genetic tests available, and it was very forward-thinking legislation. It was trying to make sure that the policies were in place to protect this information in advance of it becoming widely available and widely integrated in to medical care. That's sort of counter to how Congress usually does things. They respond to the crisis de jure.

So now, we're 10 years later, and there's more than triple the number of genetic tests out there. And it is becoming routine in medical care, and so we need to put these protections in place.

NORRIS: If insurers don't have access to this information, could you argue that this is going to essentially raise the cost for everyone else, that insurers can't make the best decisions because they don't have the best information?

Dr. HUDSON: I think, you know, before we had predictive genetic tests available, insurers had to figure out how to cover a group of people and still remain viable as a business.

NORRIS: Profitable.

Dr. HUDSON: Yeah. And so having those tests available now and having them not usable by the industry really doesn't affect that equation. If a person has a genetic test and they know they're at risk for a disease in the future, it increases their likelihood of being insured, and it may be 10 years, 20 years, 30 years or never that they actually develop that disease.

So this is an incentive for people to become insured, but it really doesn't affect the profitability, I think, of the industry.

NORRIS: But the industry has raised questions about this because they say that you might asking them, essentially forcing them through this legislation, to do something that is not in their best interest.

Dr. HUDSON: You know, the principles in this legislation were really intended to make sure that we're taking care of the American public. So on the one hand, if what we're balancing is some very narrow restrictions on the insurance industry versus massive protections for the American public, which will enable research and enable good clinical care, I think that, you know, which way that balance falls is pretty clear.

NORRIS: Kathy Hudson, thank you so much for coming in to talk to us.

Dr. HUDSON: You're welcome.

NORRIS: That was Kathy Hudson. She's the founder and director of the Genetics and Public Policy Center.

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