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Francis Collins Interview (page: 3 / 6)
Presidential Medal of Freedom
What are the greatest satisfactions you derive from what you do?
Francis Collins: Satisfaction comes in a variety of flavors. There is the satisfaction simply of seeing this instruction book take shape. Before this year (1998) is over, we will finish the complete instruction book of a multi-cellular organism, a roundworm; it's part of the Genome Project. This is a very exciting milestone.
All 100 million base pairs in the DNA sequence of this particular organism will be completely determined. That's never happened before. I will feel a great sense of satisfaction when that comes together. I will feel it to a much greater extent when it's the human genome sequence we're talking about. Simply from the pure joy of having achieved that kind of milestone.
But the joys are more extensive for me as a physician seeing those discoveries utilized in a medical setting. When I talk to a family who have been torn apart by concerns about a genetic disease, and because of this new molecular insight that we have, we can explain to them precisely what's going on. Sometimes we can tell people who assume they're going to die of this terrible disease, that they're not even at risk, because they didn't inherit it. That's very gratifying.
This is an early stage in the application of genetics to medicine, but there are already circumstances where you can tell somebody that they're not going to die young of cancer or Huntington's disease. More often than not, it turns out they're in the same boat as everybody else and they have a long life ahead of them. That's an experience, to convey that kind of information to someone and change their life.
That must be satisfying, to know that your work could have this impact on the lives of millions of people.
Francis Collins: Yes, but there's one thing I worry about in these discussions about achievement. Young people might assume that unless your life has a huge and lasting impact on millions of people, that you haven't quite succeeded, you haven't measured up. I fell into that trap a few times and it's very dangerous to take that view.
I went to West Africa to work in a small mission hospital for a month. I went there in the midst of all sorts of other scientific endeavors. It was a bad time to leave, but I really wanted to do this. I went there with this image that I was going to make a profound difference in that situation. After a couple of weeks, I was really depressed. Here was a circumstance where all the patients I was trying to take care of had diseases that didn't have to be. They were the consequence of poor public health, of contaminated water, of inadequate nutrition. I knew I could pull some of these people back from death, but I knew they'd go right back out to that situation. My dreams of myself as the healer for this large population were lying in pieces on the floor.
One morning I walked in to see a young farmer who we had treated the day before for tuberculosis, and he looked at me and he said, "You know, I get the feeling that you're wondering why you're here." He said, "You came here for one reason. You came here for me, and that ought to be enough." And that sticks in my mind -- more than any moment I think I have experienced in my life -- as truth. We should have our grand dreams, we should pursue them, that's what being human is all about, that's part of the nobility of our enterprise. But we should never forget that what really matters is what you do one-on-one with a single human being. Where you reach out and you try to help them make their life a little better.
And if that's all you do, your whole life is to do that occasionally, then you have succeeded.
[ Key to Success ] Integrity
If you don't do that, you may have wonderful grand dreams and maybe even succeeded at some of them, but I think you will end up being disappointed, frustrated and unfulfilled.
When we finish documenting the human genome, what's it going to do for us?
Francis Collins: I believe that the goal of medicine, one of the noblest undertakings of human beings, is to alleviate suffering. So much suffering comes from disease. We've eliminated some terrible diseases like small pox and polio. We have treated childhood cancer, so that most of those kids, who used to die, now survive and live a normal life. We have made major advances with heart disease, and other kinds of cancer, but far too often we find ourselves trying to treat the symptoms of a disease we don't understand.
The goal of the Human Genome Project is to open a new window and allow us to see the molecular level. What is the cause of diabetes? What is the cause of hypertension, of heart disease, of schizophrenia, of the common cancers? We can use that information to try to prevent the disease before it even starts. That's the dream, that's what gets me up in the morning. It's a wonderful intellectual achievement to imagine we're going to have this instruction booklet out in front of us, but the real point of it is to use that information to alleviate suffering and allow people to live long and healthy lives. I think that's one of the most important things we can do as human beings, and this is a tool to get us there.
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.
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This page last revised on Sep 19, 2010 13:25 EST
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