Francis Collins Interview (page: 5 / 9) Presidential Medal of Freedom	Print Interview

Do you ever consider the possibility of failing, of not getting that information?

Francis Collins: I worry a lot about how this information will be derived, and how it will be used. How difficult will it be? I was fortunate to be involved in the study of cystic fibrosis. It's the most common potentially fatal genetic disease in Caucasians. One in 2,500 babies is born with this disease.

Thirty years ago, the average survival was about age four, it's now age 30. We've come a long distance with better medical care, better antibiotics, better ways to deal with the malnutrition that is part of this disease. Yet this is still a totally unacceptable outcome, where people in their 20s gradually go downhill and die a terrible death, not being able to breathe because their lungs are the most affected organ.

After 10 years of effort, in 1989 we cloned the gene for cystic fibrosis, bringing to an end an era of complete mystery about. With the gene in hand, it's possible to design therapies that aren't just shots in the dark, but are targeted specifically at what's wrong. Those can be gene therapies. There have now been several different attempts to treat cystic fibrosis by gene therapy. They may be drug therapies, where you develop a new idea about a drug because you really understand the problem. On the one hand, I'm very excited about this, because we have seen clinical trials of both gene and drug therapies for cystic fibrosis that never would have happened. On the other hand, we haven't cured the disease yet.

The fear of failure is a time-limited fear. Over time, this information will make it possible for us to cure cystic fibrosis. We're going to figure this out. But will we do it during the lifetime of individuals who are already suffering the consequences of this disease, or will it take us another 10 or 15 or 20 years? I don't know.

There's another kind of failure with genetics which worries me a lot. This is powerful information. We will have the ability five to 10 years from now to look at anybody's DNA and say, "That person's at risk for these four diseases." That ought to be a good thing, because if you know what your specific risks are, you can change your lifestyle, your medical surveillance, and you're more likely to stay healthy. That's individualized preventive medicine, something we ought to be very excited about. But if you lose your health insurance or your job because somebody else found that information, then the public won't want anything to do with this, and justifiably so. We are not in a situation yet to be reassuring about this.

I spend a huge amount of my time on the ethical, legal and social consequences of this revolution in genetics, much more than I ever thought I would. We have to roll up our sleeves and put every bit as much energy into resolving those issues as we are putting into the scientific advances, maybe even more. Otherwise, this whole promising revolution could end up with a lot of casualties that shouldn't have to occur. That would be truly tragic.

It's unusual to have a scientific revolution of this sort, where we are trying to anticipate those consequences. That didn't happen with splitting the atom. From the outset, the Genome Project has set aside a percentage of the budget to pursue these issues. We now fund the largest research enterprise in bioethics in the history of the planet. I'm optimistic that that's the right thing to do, but it's an experiment. We don't know whether all of that scholarship and all of these recommendations will result in action. It requires enthusiasm of people who control legislative initiatives and decision making. So you get from science to politics in a hurry.

What the public is most worried about is that their genetic information might be given out without their permission, and that it might be used to deny them a job or health insurance. It's so clear that that's something we need to address. Getting it done has been a slower process. It's one thing to know something scientifically, it's another thing to get something done. At the moment I can tell you that in there is much enthusiasm for fixing this problem in both parties and both Houses of the United States Congress. The President of the United States himself said, this is a high priority in a big ceremony at the White House last summer. Nine months have gone by and it hasn't happened. That's frustrating, to see something so clearly. To see the opportunity to protect people, before we have a crisis, before hundreds, thousands, millions of people have been damaged. Why can't we just do that?

There are no compelling arguments against it, although the insurance industry, as you might guess, would just as soon not have anybody tell them what to do. They're not being asked to cover people they're not already covering. This is not destabilizing to their economics. We ought to be able to do that. So I spend a huge amount of my time trying to make that argument. Yet other factors, completely outside of my control, derail the process, and that's frustrating.

Can you foresee the possibility of a conflict between your own values and the results of your work?

Francis Collins: I wonder about the future use of genetic information, particularly when we talk about enhancing traits. I feel passionately that if we learn how to use genetics to cure terrible diseases, that's a wonderful thing. But if we move away from that and talk about changing human characteristic to improve ourselves, that makes me very uneasy. Who is to decide what is an improvement?

How far are we as a society willing to go with the use of genetics to change ourselves? I'm fairly conservative on this point. I may find myself in disagreement with my own colleagues, or even with the midrange views of society.

I think another obligation I have is not to imagine that my opinion on those matters is particularly weighty. I can weigh in when it comes to the scientific facts. When it comes to the uses to which genetics should be put, I don't think scientists like myself have any unique abilities to decide what's moral and ethical. We need everybody's input on that. And in that regard, I think I have to be careful not to use my own circumstance as the scientific leader of this project to imagine that I'm also in some special ethical position where my opinion must be the right one. That I think is something to constantly keep in front of me.
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