Eric Lander Interview (page: 7 / 9) Founding Director, Broad Institute	Print Interview

There are other ethical dilemmas regarding genetic data. For instance, suppose a woman learns she carries the gene for a very serious breast cancer. What kind of deleterious effect could that have on her career, on her life, on her health insurance? There are woman who have already faced this issue.

Get the Flash Player to see this video. Eric Lander: There are tremendous ethical dilemmas raised by genetic research. Take the example of breast cancer. We know of two genes, mutations in which predispose to early onset breast cancer, and it's possible for a woman to be screened and know that she does have such a mutation that greatly increases her risk of breast cancer. How should we handle this? I think there are a number of considerations. First off, we have to ask who has the right to find out this information. I think the woman alone. We have to be very careful that under no circumstances can anyone compel her to find out that information -- say an insurance company -- or can anyone else find out that information from her. I think this has to be a completely personal decision, but I think that's not enough. I think to say it's up to each person, it's a private question whether you want to seek that information, isn't enough with a society where most people wouldn't know how to use that information, how to interpret that information. If we're really going to be serious about individual choice in this information, then we've got to be deeply serious about education. We have to make it the case that the general public knows enough about genetics that when situations like this arise they can go find out more. They have to have access to information, to counseling. I think we have a long way to go before we're in a situation that people -- that we can really say people have free choice about it, because no choice is free without it being informed.

Finally, there's the question: Is it information you could act on? And how could you act on it? A couple of years ago, when I would talk about the dilemmas raised by breast cancer screening, there were no clear therapies that you could use. That's no longer the case. There are now therapies that can be used. If a woman knows that she has a high risk of early onset breast cancer, she can take tamoxifen, and there's increasingly good evidence that tamoxifen will decrease the risk of breast cancer. She can also have a bilateral mastectomy. It's also clear that this reduces greatly the risk of breast cancer.

There's a new drug, isn't there?

Eric Lander: Yeah, there's raloxifene. There's a variety of drugs. None of these are without serious issues. Therefore, people are going to need counseling to say, "Should I follow any of these courses?" and we have to be careful that counseling is nondirective, that it is up to the person, and that the person is informed enough. But then we have the difficult situation where we don't have a therapy.

Get the Flash Player to see this video. It's possible today to explain about half of the risk for early-onset -- I'm sorry -- for late-onset Alzheimer's disease by a single mutation, a single common variant, in fact, on chromosome 19: apolipoprotein E gene. Individuals who have apolipoprotein form four, E4, have a much higher risk of Alzheimer's disease. And those who have a double dose have a very much higher risk. You can find out. It's cheap and easy. In principle, the lab reagents to do that test cost me a dollar, but there's nothing that I could tell you to do about it. There's not a single therapy you could do in the face of knowing that you have much higher risk for early-onset Alzheimer's disease. That's going to be the case for a lot of situations. In order to be able to create therapies and cures, we need to know the molecular basis of a disease. But that means we're going to know the molecular basis first, be able to diagnose, and not to be able to offer therapies perhaps for a few years. A decade, maybe decades, maybe in some cases never. There's no guarantee that understanding leads to a cure. Ignorance almost always prevents a cure, but understanding takes time, and for each disease it will be different. So we're going to live through a period where we have a tremendous amount of accreting knowledge, but each disease will be its own situation, and how to act on that knowledge will be a changing matter, and people will need continuing information and education about it. We have a tremendous amount of work to do to make sure that people are able to use the fruits of the genetic revolution themselves, and to use them to full advantage.

The privacy issues in this informational age are really serious.

Get the Flash Player to see this video. Eric Lander: The privacy issues are stunning. If I wanted to invade someone's privacy, it's easy enough. It doesn't take much genetic material. Some unscrupulous reporter could easily get a cocktail napkin that a presidential candidate wiped his or her mouth with, take it back to a laboratory, extract DNA, and find out whether this candidate is at high risk of Alzheimer's disease. We had a president of the United States who later had Alzheimer's disease, and it's not unreasonable to guess that a genetic test in 1979 might have identified Ronald Reagan as at high risk for Alzheimer's disease. I don't know if, in fact, he had the apolipoprotein E4 variant or not, but it's reasonable he might have. Would we have elected our oldest president if, in fact, we had known this? There are tremendous ways to invade privacy, and I think there is a need to protect privacy in the strongest possible terms. Here is where we do need legislation -- and legislation with teeth -- to say that genetic information is a very personal thing, and there are very serious consequences for invading the privacy of it.

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