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Francis Collins

Interview: Francis Collins
Presidential Medal of Freedom

May 23, 1998
Jackson Hole, Wyoming

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Dr. Collins, you had a major change of direction early in your career. You started out as a chemist. You had started a family and were getting a Ph.D. when you changed courses and went to medical school. What was that like?

I was kind of in a crisis. Here I was, already had a kid who was a couple of years old, and I was facing the idea of starting over again, and what to do. And I was pretty shaken up about whether research was the right thing for me or not. So I considered many options, and stayed up many nights wondering which was right. And finally decided, even though it had not been a childhood dream at all, that medicine was a really interesting option for me. That it would allow me to learn about the life sciences and see if there was something there that really grabbed my fancy in the way of research. But if that didn't happen, I knew I loved working with people. I knew I had this urge to try to do something for other human beings, an urge that I hadn't been able to experience quite in the way I wanted to in the physical sciences. And if I just ended up being a doc out in the hills somewhere, that would be okay too.

You can see how fragmentary this logic was. Yet somehow things worked out. I went to medical school at the University of North Carolina in Chapel Hill, a wonderful place to find yourself.

In that first few months as a medical student I remember a day just as clear as if it was yesterday, where a pediatrician came to talk to us, and he brought with him a couple of patients who had genetic diseases. And it was so powerful to see the consequences of a small change in this wonderful molecule called DNA. Just one letter out of place causing a disease like sickle cell anemia, which was one of the individuals that he brought, or galacticemia, a newborn baby that he brought to class. And that, maybe because it also appealed to the mathematical part of me that liked the precision of DNA and its coding capacity -- it's a digital molecule after all -- made it so clear at that moment, that day, that's what I want to do.

It took a long time, so I'm sympathetic with young people who find themselves surrounded by others who seem to have zeroed in exactly on what they want to do, and yet they're not so sure themselves whether they've found their dream. I encourage people to take their time. I found my dream a little early I think. It was a good dream, but there was a better dream for me that I had to develop, with some changes in the plan. I think that change has served me very well.

I now think I'm the luckiest guy in science. I have a chance to stand at the helm of a project that I honestly believe is the most significant undertaking that we have mounted so far in an organized way in all of science. I believe that reading our blueprints, cataloguing our own instruction book, will be judged by history as more significant than even splitting the atom or going to the moon. This is an adventure into ourselves. To figure out, what are the instructions that allow us as human beings to carry out all of our biological attributes? I think all of history, and the history of biology and medicine, will be divided by this stunning achievement. Of what we knew before we knew the human genome sequence, and what we were able to do after that. And for me, this kid from the small farm in Virginia, to have a chance to oversee that is just an astounding thing.

I could never have planned this, never have dreamed it. It just gradually came about.

You said a small farm in Virginia. Really? What was your childhood like?

Francis Collins: I grew up in the Shenandoah Valley of Virginia, on a small farm with no plumbing. It was a fairly arduous existence during the winter, because we had stock that had to be taken care of. It all sounds very pastoral. It was hard work, but it was also educationally challenging in a good way, because my father was a Ph.D. in English, and my mother a very talented playwright. My mother decided that the county schools were not a place where a young person would learn to love learning. And so she kept my brother and me at home and taught us there until the sixth grade. And that was I think probably a very important part of my life's experience, because I really did learn how to love acquiring new information.

She was very good at figuring out when a topic had caught my fancy and let me run with it. When it reached a point where it wasn't so much fun anymore, we'd quickly shift to something else. Whether it was mathematics, or studying languages, or understanding the roots of various words, which was a big thing for her. There were no lesson plans, there was no sort of organized curriculum, but somehow it sort of worked out. I was really fortunate to have that experience.

My parents were also very involved in the arts. My father ran the drama department in a small college, and when I was three years old they founded a summer theater in the grove of trees above the farmhouse. It's now in its 45th consecutive season. So summertimes were great fun, with all of these interesting people and different productions going on. My father had been a folk song collector in the '30s in North Carolina, so he knew amazing people who were real musicians, in the old style. So there was always music around.

Nobody in this environment had any particular involvement in science or medicine, that was not part of my upbringing, yet that's what I've ended up doing. I started going to regular school in the 6th grade, when we moved in town to be with my grandmother, who'd had a stroke. My mother decided those schools were okay and it was safe to send her boys there.

Do you have brothers and sisters?

Francis Collins: I have three brothers, I'm the youngest.

What was that like, being on the bottom in that pecking order?

Francis Collins: My two oldest brothers were much older, they were almost in college by the time I was born. They seemed more like uncles. The brother closest to me was only two years older and I think it was much harder on him than it was on me to be growing up together. My mother taught both of us at the same time. It was a lot easier to do that than to have two different curricula for these two boys who were so close in age. As a result, he was always being threatened by this younger brat brother of his, who wanted to be just as advanced as he was in whatever we studied. I think that took a toll on him. It was great for me, I had a ball.

Do you think it affected you, being the youngest of that group?

Francis Collins: I think it was a good position for me to be in. I'm not sure I thought so at the time. I knew my brother could beat me up if we got into a real tussle, 'cause he was a little bigger. But once in a while I would score a few points. Other than that, I think it was really helpful to have a brother who's a little bit older. I could watch the things that he had figured out and learn how to do them myself. All kids will copy somebody who's a little older, and he was right there to copy.

What books were important to you when you were growing up?

Francis Collins: I read everything that Frank Baum wrote, The Wizard of Oz and all the rest. I was very much into the Dr. Doolittle series, and a whole series of books about exploration, that I read all the time. My mother took me to the library, that was a real important outing. We would pick a book and that was a big part of my life. On the farm in the wintertime, when you weren't working outdoors, there wasn't a lot to do, so reading was a big part of my childhood.

There was no television, we didn't have one. My parents thought it was an evil force, and I think they're probably right. Without that kind of distraction, and books were my friends. I wouldn't say I dug into the classics. I preferred Winnie The Pooh to reading Homer, but Dickens was important to me. Every evening my father would read after dinner. We'd sit around and he'd read a chapter from whatever book we were going through. We went through a lot of Dickens that way.

I really learned to love the language and my father's voice reading it. And the cohesiveness of this family sitting around the fire, a special time that nothing was allowed to interfere with. That was a very clever idea on my parents' part to teach this love of reading, and of language, and of togetherness, and how that can all work together.

How do you think it affected you, learning at home, instead of going to school with the other kids?

Francis Collins: I think it affected me in a positive way, getting excited about learning. I had the best teacher/pupil ratio you can imagine. It probably affected me in a negative way socially, because I had no other kids to interact with, except my brother who was two years older than me. There were no other kids my age for two miles. I had to catch up, which was a little difficult when I was suddenly thrust into the social scene of the sixth grade. But one copes and compensates, and I don't think I sustained any lasting damage.

Didn't you resent it at the time that you couldn't go to school with the other kids?

Francis Collins: I did feel like I was missing out on things like sports, social activities and birthday parties. During the year, when everybody else was in school and seemed to be having a good time, I was not always so happy. There was a lot of hard work on the farm, not a lot of chance to get out and fool around. But during the summer, when the theater was happening, I thought I was the luckiest kid on earth, with this swirl of activity going on.

When I got to public school I wasn't at all clear what my interest was. I wanted to be a truck driver, I knew that much. That was the major goal in my life for several years.

What made you want to become a scientist? What persuaded you that this is what you wanted to do?

Francis Collins: When I got to high school I had an experience like that of almost everybody I've talked to who's become interested in science or mathematics. I had a teacher who took a real interest in my interest, who taught me chemistry in a way that emphasized the power of the human mind to get answers to questions, as opposed to memorizing things. I really liked that. With the scientific method you could discover things that weren't known before. I liked mathematics, and chemistry, and physics. Those suited me quite well, because they were organized and had principles. You didn't have to memorize stuff. I didn't like memorizing stuff and I wasn't very good at it.

It was the 10th grade in high school, it was the first day of the chemistry course. Mr. House, this wonderful man who'd dedicated his life to getting high school students excited about science, came in and said, "We're going to do an experiment today. I'm going to give you this box, which is painted black, and it has an object inside it and I want you figure out all the ways that you might investigate this to figure out what the object is." And my initial reaction was, "What a dumb idea!" And then I started to try to come up with a list of the kinds of experiments one could do to determine what's inside this black box. And I got caught up in it. It was the first time I think that somebody had challenged me to come up with the ideas. I had some exposure to science in previous courses, but it was, "Here's the facts, learn them." This was, "Okay, I'm challenging you. Here's a problem, how would you solve it?" And I knew something was different here.

He built on that. I just happen to remember that first experiment, there were many others after that. Here was a teacher who really knew how to excite your interest in the exploration of the unknown. That grabbed me and it never let me go. I also took biology in high school and I didn't like it at all. It was focused on memorization. Learning the parts of the crayfish was a typical assignment. I didn't think that was very interesting. I might have made a bit of a mistake. I didn't appreciate that biology also had principles and logic. I concluded at the age of 15 or 16 that I had no interest in biology, or medicine, or any of those aspects of science that dealt with this messy thing called life. It just wasn't organized, and I wanted to stick with the nice pristine sciences of chemistry and physics, where everything made sense. I wish I had learned a little sooner that biology could be fun as well. Unfortunately, it was not taught that way to me in high school.

The very well-intentioned biology teacher really was not at all attuned to the fact that learning involves more than pouring information into somebody's head, that you ought to challenge them to actually think about it. There's a wonderful quote from Yeats that I ascribe much significance to and try to adhere to when I get the chance to do teaching myself. Which is that, "Education is not the filling of a pail, it's the lighting of a fire." Mr. House knew how to light my fire in chemistry and physics. The biology teacher was filling the pail, and the consequences were very different. I didn't get much of a bang out of that.

You weren't exactly one-dimensional as a kid. You had other interests, didn't you?

Francis Collins: I was lucky to grow up in a home that had so much music and theater. When I was four years old I took The Wizard of Oz, my favorite book and turned it into a play, which was then produced by the Children's Theater. I got to play the Cowardly Lion, that was the best part. I was very interested in music, so I played the piano, I played the guitar. I sang in the choir at the local church. I didn't learn any theology, but I learned a lot of music. There were many things I was exposed to that I enjoyed, but none of them grabbed me the way science did, once I discovered it, to throw myself into with this kind of intensity.

I went off to college at 16, which was a positive and a negative. I loved being in college, but I was making decisions about my future when I wasn't all that mature. I stuck with this idea that I wasn't interested in life science. I was only interested in physical science, and that's all I did in college. I took every course in chemistry and physics and math that I could, and not a thing in biology.

When I graduated, I did the natural thing, and went off to get a Ph.D. in physical chemistry. For the first year and a half I loved that, it was exciting and stimulating, but I had this uneasy feeling that I'd been a little narrow in my choices of what to pursue. I ended up taking a course in biochemistry, and talking to some of the other graduate students who were working in this thing that was breaking wide open, called recombinant DNA. I was totally captivated, in a way that I'd never been before.

That was exhilarating, because it was so exciting, but it was also terribly distressing, because I'd I was already a second year graduate student when I discovered I was going the wrong way. I was going to have to change and move in another direction. I think lots of people have that experience. The good news was, that's probably a really good thing to go through in the long run. The question was, what should I do at that point? Should I stop what I was doing?

Why do you think that was a good thing to go through?

Francis Collins: When I look back on it now, I can see that all the things I learned in college and in graduate school in physical chemistry are enormously helpful to me as I approach this job now (1998) of being Director of the Human Genome Project. That taught me scientific rigor. People who go into biology and medicine I think really are well served to dig deeply into the physical sciences, before they get totally focused on life science. The principles are so important. The insistence on a rigorous analysis of a situation, where you don't settle for sloppy data if you don't have to, is a really useful training, and I cherish that. Even what I did as a graduate student, which was quantum mechanics, is not something I think about anymore. The intellectual process of developing those skills I think was useful in preparing for something else.

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.

Francis Collins Interview Photo
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.

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.

Francis Collins Interview Photo
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.

Any way you look at it, you have an enormous responsibility. How do you deal with that?

Francis Collins: I surround myself with brilliant people who are wise and whose advice I can lean on at every possible moment. The Genome Project is a wonderful team effort. It's not my project, this is a project that involves close to 1,000 scientists at institutions all over the world. The United States is taking a larger role than any other country, but many other countries are participating.

In the U.S. we have a large number of genome centers. We have experts in almost every area. I have advisors who are willing to give up their time and energy to making sure we get there responsibly. It is a heavy load of responsibility, but I can share that load with people who are every bit as committed to the future of this endeavor as I am. If I had to do this by myself it would be very difficult to sleep at night.

What is the fallout on your personal life, on the way you live and your family?

Francis Collins: I am unapologetic about the fact that I'm very intense about the things that I care about. I've been that way since I was three years old, I'm told. That's the way I'm wired. At the same time, relationships matter a lot to me. I have two fabulous daughters, both adults. One is a physician, one's a social worker. I think I have the best father/daughter relationships with them of anybody I know. They are just terrific kids.

I was married for 23 years. That marriage came to an end, sadly, for a whole host of reasons. I'm happy to say that after a few years of getting over that, I'm getting married in one month. That reflects my optimism about maintaining a happy, healthy relationship and being intense about work issues. It's very important to me not to become so one-dimensional that work takes over everything else.

Another thing that's very important to me is my faith, and that surprises people. They assume that scientists in general would find it difficult to have coexisting within them a belief in a personal god. And yet to me that is the unifying principle of who I am. And it's not a faith which was sort of acquired as a child and which I've just not been able to grow out of, which is the other thing people tend to assume. I acquired that faith at age 27, and through a series of basically logical explorations into whether or not a belief in God is something that makes sense. If it didn't make sense, I would not be able to do it. And I can assure you that after looking at those issues, for me I find absolutely no conflict between being a scientist who absolutely insists on, "Show me the data, before I will accept your conclusions," and being a person who has a strong belief in a personal god. They are areas of human existence which overlap in some ways, but they look at the world in different fashions. And for me as a scientist, to be able to blend those things together so that a new discovery takes on some sort of eternal significance is really gratifying. And it's something that I would never want to give up.

Is intensity the key to what you've been able to achieve, or is there more to it?

Francis Collins: I think you have to really care about what you're doing, because anything worth doing is going to be challenging and it's going to have a high risk of failure. I have failed more times in my life than I could tell you about. Hunting for disease genes is a very failure-prone process and that's mostly what I've done in my scientific career -- for cystic fibrosis, for Huntington's disease. We're right now hunting for the genes for adult onset diabetes, which is the hardest thing I've ever done and I don't know if it's going to work. I have a sign on my wall which is a quote from Winston Churchill, which says, "Success is nothing more than going from failure to failure with undiminished enthusiasm."

I think that says a lot. You've got to expect this, especially in science.

I don't know any scientists who have a success rate of their experiments greater than about one in ten. Ninety percent, total flops, learn nothing, something was dreadfully wrong, just wasted time. Of the ten percent that actually succeed, maybe ten percent of those actually contribute in some way to new knowledge, and the rest just sort of confirmed something that was already known. So if one is going to do this -- and don't get me wrong, it's the most exhilarating thing in the world to do if you decide that this is your calling -- that one has to expect failure. If you're doing experiments that work all the time, you're not working on anything very interesting. You're not really at the cutting edge, you're just sort of replicating things that were already known.

That's a hard thing to get used to at first.

Boy, I can remember when I first got into science, in genetics in a serious way, I felt the clock was ticking and I just had to do something meaningful. And I had to prove myself in short order, or everybody would figure out that I was really clueless and I had no talent, and was not going to pan out. And the first few months everything I tried failed. And I would go home at night just feeling so depressed and so discouraged and wondering, "Should I just quit?" I still remember that sort of intense feeling of failure. Not to say that I've gotten any better at this, I still fail at the same rate, but I think I've learned that that just comes with the territory. And it's okay to fail at the experiment. It doesn't mean you've failed as a human being. One has to learn that.

I've also been lucky in this regard: I'm trained as a physician as well as a scientist. Mixing these two things together is wonderful: clinical interactions with real patients, and then going back to the lab and doing an experiment When I go see a patient, even if I have nothing to offer that person, even if they have a disease that I have no therapy for and all I can do is hold their hand and talk to them about what's coming, and if necessary cry with them -- and one needs to do that sometimes -- I know when I walk away from that interaction I will feel like something important happened there. It might be wrenching, it might be heartbreaking, sometimes it might be exhilarating, but it was meaningful, it mattered. I can count on that, that never fails. The lab isn't like that.

In the lab, you could go for three or four weeks, sometimes longer, without having the sense that you did anything worthwhile. But when you have that occasional flash -- it doesn't come very often -- that occasional flash where you see something, you know something that nobody else ever knew before, that makes it all worthwhile. That's that sort of moment of inspiration, that recognition of some new phenomenon that only God is aware of until that moment. That keeps you going. That gets you through all those months of failed experiments and flawed hypotheses, and keeps you wanting to go on to the next step.

What are the biggest frustrations, the biggest disappointments you have to deal with?

Francis Collins: One area that's a constant frustration is the way we, in this country and in many others, undervalue what we're capable of doing in research. We believe that we ought to have the best health care in the world. In some ways we do, and in some ways we don't, because of the inequities in our health care system. But we're not willing to invest in research over the long term.

Scientists who have good ideas bring them to the National Institutes of Health, where I work. They put forward their proposals, they're evaluated by peers and experts. Roughly one-quarter of them that are approved and judged meritorious actually get funded; the rest are turned away, because we can't afford to pay for them.

We spend about one-and-a-half percent of our health care budget on research. No company would dream of only plowing back one-and-a-half percent of their business into research. Yet we seem comfortable doing that with something as important as health care. That's frustrating. There's so many things that we could do.

What does it take to do this work? When a young man or a woman comes to you and says, "I want to do this," what do you tell them?

Francis Collins Interview Photo
Francis Collins: I believe that genetics and genomics and molecular biology are the sciences that are going to drive the 21st century. Anybody who has a heart for scientific investigation is going to find themselves in a glorious way. There's room here for all kinds of interests and all sorts of disciplines are needed.

We need computer scientists to interpret all this data. We need engineers to speed up the process of deriving that information. We need chemists and physicists, people who understand optics, and we need biologists, lots of them. We need people who are concerned about physiology. How do you take all of this genetic information and actually build a liver or a heart and make it work? We need people who care about law and the genetic interface with the law, whether it's in forensics, or in discrimination or privacy. We need ethicists. We need theologians. I think there is far too little dialogue between the church and the scientific community when it comes to genetics.

What personality traits are required to be successful at this kind of work?

Francis Collins: I think genetics, like most science, requires persistence. Experiments don't work all the time. Putting in an hour here and there will not make progress you need to make. Experiments have a nasty habit of going on beyond five o'clock.

It requires, genetics in particular, an interest in sort of the mathematical side of science, because it is a very mathematical part of biology. The way the DNA works, it's just a simple four-letter alphabet, it's like a digital code. And some degree of feeling comfortable with that is a good thing, although one need not be an expert in calculus. I don't think I've use calculus since I became a geneticist, but it's good to have some good familiarity and friendliness with the concepts of probability, for instance.

It requires keeping your mind broad. A narrow geneticist doesn't make the kind of observations that ought to be possible. Genetics is a tool, but it has to be applied to an interesting biological problem. The geneticists I know who are the most successful are the ones who also are willing to read voraciously about cell biology, about physiology, about biochemistry. Not that they need to be experts on that, but they can't be scared of those fields. Take an observation that's occurred in one of those fields and apply it to what you know. That's often the way the revelations come through.

Outside of that, I don't think one needs special attributes. You don't have to be an Einstein to be a very successful genetic scientist. It's almost easy now. The technology of genetics has come so fast that there's a long list of interesting problems nobody's had time to get to yet. If you're interested in the problem, the tools are there. You have a high likelihood of discovering something really exciting.

What's the next challenge you look forward to?

Francis Collins: When you have a chance to oversee a project of such significance, it's hard to imagine what to do next. The time will come when role in this comes to a close and it will be time for somebody else to do it. Something else will come along that really appeals to me. I don't know how to plan for that. I'm having too good a time to worry about it. I never dreamed I'd be doing this, and whatever I do next will probably be something I haven't dreamed of either.

I learned early on that targeting your own future too precisely is really a mistake. There may be a few people who go through their whole life following precisely the path that they imagined for themselves at age 15, but I can't think of any. One does much better I think to expect change it, to see it as an opportunity to do something you wouldn't have thought of. That's how you stay fresh. That's how you stay interested. That's how you stay inspired. It's a wonderful privilege we have in this country.

What challenges do you see for America in the 21st century?

Francis Collins: It's hard for me to look more than 5 or 10 years into the future. When I think about what I knew 20 years ago, I would not have been able to predict what's going on now. I think we need to live up to our responsibility as the leaders of the free world. I think we need to look at the ways that we are treating our own people and root out some of the inequities that we turn our heads always from. Inequities that relate to prejudice. We are always figuring out ways to think that somebody else is lesser and we are greater.

As a geneticist, I look forward to the time when we can say -- because we'll have all the data -- that race doesn't really exist. It may be a social construct, it may be a cultural construct, but it sure ain't a scientific construct. And I think we already know that in some generalities, but we'll know that in detail pretty soon. And that will be good, because I think that is a chronic sore on our culture that we are unwilling to cope with. And for the 21st century, if we could focus on that as our highest priority, that would be wonderful.

There are many other inequities, for me as a physician. A situation where we allow 40 million people to go without any form of health care is appalling. We, of all the countries in the civilized world, have the least sense of equity in the way we distribute those resources. It's an embarrassment, yet we go on year after year accepting this, and crowing about how wonderful our medical system is. It is if you've got money, but it sure isn't if you don't. That does not reflect well on us as a country that prizes justice. I don't think access to health care is a privilege, I think it's a right. We have not offered those rights to everybody equitably.

As the leader of the free world, with such wonderful resources, we ought to invest more in the way of research. I'm not just talking about the kind of research I do. We need to encourage research of all sorts. The things that are going on in space and physics and chemistry and engineering are all exciting. We never know how they're going to fit together. We should attach more value to that. We're not fighting any wars right now. We don't have any great enemies. If there was ever a time in history that we ought to put more value in planning for the future, this is it.

Was there someone in your career who was instrumental in giving you the start that you needed? Who saw you and believed in you?

Francis Collins: As a senior in college I had a mentor who had just arrived from Yale as an assistant professor. He oversaw my senior research project, and spent countless hours helping me understand issues that related to theoretical calculations in quantum mechanics, something I was very interested in. He made me believe in myself, that I had the ability not just to copy somebody else's ideas, but to come up with one of my own occasionally. That was very important.

After I went to medical school and got into molecular biology, made this transition into research and genetics, I was fortunate to work in the laboratory of the most brilliant man I've ever met. He has 10 new ideas an hour. He's also somebody who doesn't communicate very well. He's on another plane. In the first month I was there I don't think I understood a word he said. He was speaking English, but it made no sense to me. I was really lucky to have a chance to watch his mind work and to see how he could take really disparate observations and come up with an idea.

That was inspiring, opening up your mind, getting rid of the limitations of the direct approach. When somebody said, "That's not an experiment that you can do," questioning it. "Why not? Just because nobody ever did it before?" He really taught me that.

When you become a grandfather, and sit down to read something to your grandchildren, what do you think it might be?

Francis Collins: Probably Winnie The Pooh or The Wizard of Oz, hearkening back to my own youth, and wanting to recreate that for a grandchild.

Are there books that have been important to you as an adult?

Francis Collins: There are several.

Perhaps the books that have changed my life most profoundly are a couple of books written by the Oxford scholar, C.S. Lewis. Not about science, actually, about faith. When I was 27, I was a medical intern, I was a pretty obnoxious atheist at that point. I began to realize that while in other parts of my life I didn't make decisions without accumulating data and then looking at it, I hadn't really done that when it came to this very important decision about, "Do you believe in God, or not?"

Francis Collins Interview Photo
Because I had no real grounding for that, I discovered in college that I couldn't debate those who said, faith was just a superstitious carry-over from the past and we've gone beyond that. I assumed that must be right, and I promoted that same view. And at 27, particularly as a medical intern, watching so many tumultuous things happening around me -- young people dying for terrible reasons that shouldn't have come to pass -- you can't avoid noticing some pretty scary questions that don't seem to have answers. So I decide I'd better resolve this.







Somebody pointed me towards C.S. Lewis's little book called Mere Christianity, which took all of my arguments that I thought were so airtight about the fact that faith is just irrational, and proved them totally full of holes. And in fact, turned them around the other way, and convinced me that the choice to believe is actually the most rational conclusion when you look at the evidence around you. That was a shocking sort of revelation, and one that I fought bitterly for about a year and then finally decided to accept. And that's a book I go back to regularly, to dig through there for the truths that you find there, which are not truths that Lewis would claim he discovered for the first time, but he certainly expresses them in a very powerful way to somebody who is not willing to accept faith on an emotional basis, and I wasn't.

What do you know now about achievement that you didn't know when you were younger?

Francis Collins: Achieving requires you to find that place where you get electrified by what you're involved in. I am sure there are people who achieve considerable things in areas that they never really loved, but they were sort of asked to do. We in America are very fortunate, because we have those choices. Not everybody does, yet people achieve anyway.

To make the most of your resources, it helps to be really captivated by what you're involved in. When I was growing up I did not know what that would be like. There were a lot of things I enjoyed doing, but I wasn't sure I would find something that really made me feel at home, the way I do now. I think that's fairly typical.

Francis Collins Interview Photo
There's a great fear you can have when you're growing up that this will never happen to you, that you'll go through your whole life feeling lost, that you haven't been able to discover your niche, or maybe there just isn't one for you. Yet eventually it happens. That's a critical part of the achievement equation.

To be determined, if necessary, to stay up until one o'clock in the morning doing an experiment over and over again, until you get some kind of meaningful result. As a kid, I hadn't experienced the dedication and the hard work that's part of getting somewhere in something you care about.

As a kid you're kind of focused on yourself. What I also have learned is that any real achievement comes from working with other people, or standing on their shoulders. I've had that experience. In everything I've done that turned out well, I had lots of partners who were both my colleagues and my friends. The experience of doing this together made it much more meaningful than it ever would have been in some isolated way. There may be a few people who achieve great things all by themselves, but not too many. I wouldn't even want to be one of them, I like doing this in a fashion where I have lots of other folks to share with.

What do you think are the most important documents of this century?

Francis Collins: Since I'm a scientist, I will tell you that the most important document in my field of this century is a one page paper published on April 25th, 1953 in the journal Nature, authored by James Watson and Francis Crick, describing the structure of DNA and the double helix that makes up this thread of life. Everything changed when that was laid out, because the elegance of that structure immediately explained a whole long list of the critical features of how life exists.

I think that will stand the test of time as the most important document of the century in science. I'd like to believe the most important document of the early part of the next century will be an electronic one, which is the reference sequence of the human genome, our instruction book, our blueprint. It's a pretty big document. If you print it all out and make a hard copy of it, you'd better have a lot of storage space. When you consider the significance of that, it would be difficult to match.

What does the American Dream mean to you?

Francis Collins: It means the opportunity to follow the area that inspires you. The opportunity to learn about something, regardless of your family background, or your degree of resources, to be able to pursue interesting areas that just appeal to you. Not to be obstructed in that path by unfair rules that say, "That's not an appropriate thing for you to do."

To a significant extent, that dream is true, but we could do better. It's easy for me to say it's true; I came from a family that valued learning. I was exposed to wonderful opportunities almost from the day I was born. I've never had a serious illness to get in the way of what I wanted to do. I had a family that was stable. My parents are about to celebrate their 66th wedding anniversary. Those are wonderful blessings and not everybody has that kind of experience. That's the dream, I think, to keep those opportunities available.

What do your parents think of what you have become?

Francis Collins: My parents are wonderfully open-minded, excited people about every area of life's mysteries. They have a son who turned out to be interested in science and medicine, which is different from their other three sons. They think it's terrific. They've always been 100 percent supportive of that. They read everything they can get their hands on about genetics. Whenever I call them or come to visit, they want to have a conversation about it. "What was this latest report about that breast cancer gene? What's happening today with gene therapy for cystic fibrosis?" They're big fans. I think that reflects the enormous breadth of their interest as human beings, which is something they taught me early on. So many people are satisfied with a narrow view of the world, because it's a little more comfortable that way. They taught me that you miss out on a lot that way.

This has been an extraordinary conversation. Thank you very much.




This page last revised on Sep 19, 2010 13:25 EDT