Rep. Louise SlaughterAn interview with U.S. Rep. Louise Slaughter, D-N.Y.

GeneWatch: If any legislator can be called a champion of GINA, it would have to be you. You've pushed for genetic nondiscrimination legislation for seven sessions - why did you stick with it for so long?

Rep. Slaughter: Because of the importance of it. We had an opportunity, when they first announced that they were going to decode the genome, to have science and political policy go hand in hand. Obviously we recognized how marvelous the science could be, but we also recognized that there were pitfalls there for people who were already being discriminated against because of genes, and people were terrified to know what their genetic makeup was - people who had Alzheimer's in their family, a lot of cancer in their family, women who thought they might have a gene for breast cancer or were afraid to find out - and their doctors told them not to have a test until the bill passed.

It was a very strange odyssey. It passed the senate unanimously twice, but didn't have a single hearing in the House of Representatives for all those years, until Nancy Pelosi became speaker and George Miller became chair [of the House Education and Labor Committee]. Both of them struggled all these years, they were cosponsors of the bill, and I can't praise George Miller enough for what he did to make it possible to get this passed.

So is that the main reason it came about?

Politics. There's no question about it. The National Association of Manufacturers, Small Business Association, Chamber of Commerce, and some drug companies were very much against it. Drug companies, I think, because what they like to do for research is rifle through medical records and see who's got the most of what. And I don't object to that, but I saw no reason for them to know who this person was, where they lived or where they worked.

Did you ever hear a justification for why they would need to know those details?

No, they never spoke to me. All those years we had no real contact.

What sorts of justifications did you hear from other opponents?

They didn't give us any. Well, they thought it would be a handicap for employers, and that it would result in tremendous numbers of lawsuits. Bu it took so long that a number of states had already passed legislation - which isn't good enough, because it shouldn't be luck of the draw, based on where you live, whether you're going to be protected or not.

What do you think are the next pressing genetics issues?

There's so much more happening out there. There's the epigenome, which we all need to understand better.  But let me tell you the most important thing that we're going to find from this debate, in my book. We ought to be able to do individualized health care - your genes will tell you what medicine will help you, individually.  Dr. (Elias) Zerhouni, who was head of the NIH, told me that 80% of patients on Lipitor are not benefitted by it. But that is the drug of choice, so 20% benefit and it costs an awful lot of money. Obviously, by doing specialized medicine we can not only keep people in better shape medically, but we're also going to save a lot of money.

One concern about GINA is that part of what it does is reassure people to get genetic tests.

Well, everybody doesn't have to do that - we're by no means encouraging everybody to run out and get a genetic test.

In terms of public awareness of genetic discrimination issues in general ... a lot of people, when I talk to them about this -

They don't even think about it.

They don't think about it at all. Do you think that's changed?

No, I'm not sure it has. It's there, it's a tool for science, it's critically important. But personally, nobody comes up to me to say, "thank you for making it so that I can get a genetic test."

I take great pride in the fact that we have done this, and I know that it's critically important. I think Sen. Kennedy said it's the first civil rights bill of the century, and Francis Collins said it's the equivalent of splitting the atom. So I'm perfectly aware of the importance of it, but I don't have much reason to believe that the public knows or cares what we've done here.

It seems that it's pretty difficult for the average person to notice when they're being discriminated against, or to avoid it - to know to think twice about that blood test.

I think the day will come when if you're going to be treated for high blood pressure or arthritis, that we would be able to, because of your genetic makeup, have the specific medicine to help you. But again, when the genome first came out, we were very much concerned that they were going to sell the information or it would fall into private hands. That would not be a good thing. And if you're alluding to the testing that's popping up all over the place, I think it needs to be regulated. It is really an opportunity, I think, for a lot of scams.

Is there much political interest in regulating consumer genetic tests?

Well, I think we're going to do it. Whether there's political interest or not, I think we can get it done. When it comes to any kind of regulation, they get skittish around here ... but it's coming.

I remember trying to get this bill passed early, talking about breast cancer, and Collins was saying 'we don't want to micromanage medicine.' I think they felt that breast cancer was a women's disease. And they felt that it was really a sad thing. But I didn't get much indication from a lot of them that it was anything they were really concerned about.

So I think it was really all the outside groups. Your group, Hadassah, all the others - we had enough outside support to represent at least half the population of the country. And the Senate, as I said, passed it unanimously twice.

Considering that it passed unanimously in the Senate, and when it did pass in the House there was what, one dissenting vote - it seems like something everyone could get behind.

We always knew it would pass. The chairs of the committee just wouldn't let it out because of the groups who were opposed to it. So it never had a hearing here until George Miller was the chair.

What about the lobbying on the other side?

They were mostly groups, individualized groups. Hadassah worked so hard and they were so generous. We would have never known so much about the gene, the BRCA1 gene, if they hadn't been so generous to let themselves get tested for it. I know a woman here who had seven major operations because she had the gene and breast cancer, and I think she's going to be one of our best advocates for young women to get tested.

But ultimately, getting GINA passed came down to the politics.

Let me tell you right out top, it was the leadership change.

And I should say about President Bush, on his behalf - he said in his State of the Union that he wanted to sign this bill. And he did sign the bill. It was the House leadership that needed to change, and if we had not changed it, we would be in bad shape.


Rep. Louise Slaughter has served western New York state in the U.S. House of Representatives since 1987. She introduced some of the first federal genetic nondiscrimination legislation in 1995. In 2006, Rep. Slaughter became Chair of the influential House Rules Committee.


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