By CRG staff - interview with Congresswoman Louise Slaughter

U.S. Rep. Louise Slaughter, D-N.Y., first introduced genetic privacy legislation in Congress in 1995 and went on to champion the bill that would become the Genetic Information Nondiscrimination Act (GINA).


GeneWatch: After GINA's passage, do you see continuing problems with  the way genetic information is regulated? Do you think new laws will be needed in the near future?

Rep. Slaughter: I'm not so sure. I think we did a pretty thorough job [with GINA] on ownership of your genes-of making sure that you own them. The remaining difficulty might be, I think, inhibition of research. The fact that 20% of the genes are under patent to companies-who can charge $2,600 anytime anyone with breast cancer wants to get tested for BRCA1 and BRCA2 genes-it flies in the face of what we were trying to do: to make it much easier to identify cancer as early as we could. We want to identify those people who are more likely to get breast and ovarian cancer, and suddenly we find that they have to go through this company that charges what I think is a fairly exorbitant price. I'm looking forward to the Supreme Court overturning this, because genes should not be patented.

That was the biggest surprise to us as we were working to get the bill passed. This company came forward and patented those genes. The identification of BRCA1 and BRCA2 came about because of the extraordinary generosity of the Ashkenazi Jews who gave their blood so they could be tested. I think it's an affront to them, and to all women, that a product of that should be patented and not in the public domain.

What do you think are the chances that additional genetic privacy legislation could be passed in Congress?

You know, it took me thirteen and a half years to get this passed. I imagine that we would be able to pass further legislation, but with this Congress, we don't know. I hope that the promise of genomics will not be stymied by what we dealt with trying to pass GINA. There were a number of people who had thought we were talking about cloning-but when the time came for the vote, they all voted for it, which was really astonishing after what we'd been through. As you know, the Senate passed our bill unanimously twice, which I think was because Senator Frist was a physician. Over here [in the House of Representatives], we had committee chairs who bottled it up at some group's request.

Do you expect any future expansion of GINA's protections-for example, to cover life insurance?

Life insurance is really not a part of the bill. One thing we can change is that right now it does not cover military personnel; that's something we're working on.

How do you envision GINA changing medicine and healthcare in the next 20 years?

What we want for this bill is to cut down on hospital stays and unnecessary surgeries. Since we all have different genes, we need individualized medicine, so doctors can find what treatments we will personally respond to. It's happening, and that's a remarkable achievement.

For the first time in our history, science and politics should go hand in hand. Research is growing by leaps and bounds, and I do believe this science is limitless. It's going to change a lot of the scourges of mankind.

As so often happens in legislation, nobody has heard about the bill ... but we're very pleased that it's working so well. 

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Genetic Testing, Privacy and Discrimination
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