But Francis Collins is no ordinary human or scientist. Homeschooled until the sixth grade by parents who were generally viewed as somewhat counterculture, he has lived in several worlds: the world of music (he has long had his own rock band); the world of genetics and medicine; the world of improving health care in the developing world; the world of religion (he is a born-again Christian who has written a book explaining why science and religion are compatible); and the world of ethics and privacy.
As if that were not enough for one person to do, he has led the largest biomedical research and funding complex in the world for a record length, beginning in 2009 and continuing into 2021. He is a rare person whose talents and skills are considered so vital to the country that he was appointed to lead the National Institutes of Health (NIH) by President Barack Obama and then reappointed by President Donald Trump, and later by President Joe Biden.
As director of the NIH, Dr. Collins has led efforts to enhance the country’s capabilities in precision medicine, oncology research, and opioid mitigation. Too, he led the institutes in working to deal with the COVID-19 crisis of 2019-’20. (Dr. Anthony Fauci directs the National Institute of Allergy and Infectious Diseases, one of the NIH’s twenty-seven institutes and centers of medical research under Dr. Collins.)
I have known Dr. Collins for many years and have interviewed him on a number of occasions. This interview took place in September 2017 at the National Institutes of Health.
* * *
DAVID M. RUBENSTEIN (DR): What is the human genome, and why do we care about your having codiscovered it?
FRANCIS COLLINS (FC): The genome is basically the entire instruction book, written in the language of DNA, for an organism. Animals, plants, bacteria, they all have a genome. Ours is pretty big.
If you think of DNA as a language, it’s an interesting one. It has just four letters in its alphabet, which we call A, C, G, and T. They’re abbreviations for chemical bases.
Our genomes are six billion of those letters. You get three billion from Mom and three billion from Dad. That’s a lot, although it’s pretty amazing to contemplate that that’s a bounded set of information sufficient to build a human being from a single cell.
DR: Why is any human being better off because we now have mapped the human genome?
FC: The whole thing got finished in 2003, and there were some silly comments: “Medicine will be transformed in the next two weeks because of this.” Of course not. Six billion letters, you don’t really know the language, it’s going to take a while to figure it out.
What’s happened over the years since then has, however, been transformative in medicine, and particularly in cancer. If you develop that terrible disease, you want to know exactly what misspellings have happened in the genome of those cancer cells that are causing those good cells to go bad. That’s now affordable because of the genome project, and it pretty much has changed everything in terms of the way in which we approach the diagnosis and treatment of cancer.
DR: Today it’s the case that anybody can have their genome mapped for less than $1,000. Have you had yours mapped?
FC: I had a sampling of it done. I was writing a book about personalized medicine and I wanted to use myself as a guinea pig. One thing I did learn was that my risk of diabetes was substantially higher than the average person based on my genetic inheritance, and that was sort of a shock, because that’s not something that’s run in my family.
But my family are all pretty lean, athletic people, so maybe they managed to avoid it. I learned this at a point where I was not lean and athletic. I was indulging in too many muffins and honey-buns and not doing any exercise, and I was getting chunky. That genetic information was enough to motivate me to change all of that, to lose thirty-five pounds, to get into an exercise program. I’m a different person now than I would have been if I had stayed on that same path.
DR: Muffins and honey-buns are not healthy for you is what you’re saying?
FC: They are not healthy for anybody, I’m afraid.
DR: Somebody might say, “The man who is running the NIH must come from a family of medical professionals and scientists, because this is one of the most important scientific jobs in the world.” You were raised on a farm. You were homeschooled?
FC: I was. Not because my parents were religious in their persuasion at all, but because they thought the county schools where I grew up in the Shenandoah Valley of Virginia were not up to their standards in terms of what they thought their four boys should have as far as education that would get them excited about learning. But my mother was incredibly gifted as a teacher. She was a polymath. What she really gave us was this excitement about learning new things, which I carry with me to this day.
DR: You did this until the sixth grade, and then you went to school?
FC: We moved into town. My grandmother, who lived about seven miles away, had a stroke and needed somebody in the house. I think my mom was a little tired of teaching these four boys at that point and figured, “The public schools in the city of Staunton are probably up to a better standard.”
DR: Did you realize that after homeschooling you were ahead of everybody else or behind everybody else?
FC: I was ahead. I ended up two years younger than everybody else in sixth grade, and that was maintained all the way through. I graduated from high school at sixteen because my mom got me started in this particular way of learning quickly.
DR: I graduated at sixteen too. I wouldn’t recommend it necessarily, because you’re a little bit younger than your friends when you go to college.
FC: The social part of it is a little conflicting.
DR: You went to college at the University of Virginia. Were you an academic superstar there?
FC: I was a bit of a nerd. I got excited about science in high school. What got me interested in science didn’t come from my family—no scientists, no physicians for generations. It was a tenth-grade chemistry teacher. I majored in chemistry at UVA because I had figured that’s what I wanted to do based on the course I had from John House in tenth grade at Lee High School in Staunton, Virginia.
DR: You then went to Yale to get a PhD in what?
FC: Chemical physics. Quantum mechanics. It was mathematical physical science.
DR: You’ve got a degree from the University of Virginia, you have a PhD from Yale. You’re ready to get a job, right?
FC: You would think so, wouldn’t you? But I had made this mistake of narrowing my focus at a very early stage. I thought life science was really messy and not very interesting. It seemed very descriptive. I couldn’t perceive there were a lot of principles, partly because it wasn’t taught very well. So I avoided biology or biochemistry or any of those things in college. I took straight chemistry, physics, math, that was it, likewise in graduate school.
But here I was as a graduate student, working late at night. There was another guy one floor above me who was also there in the middle of the night, working in a lab on the chemistry of DNA. I had no idea about this stuff.
The more I read about it, and talked to him about it, and began to read articles about it, the more excited I got. This was an area of science ready to burst forward with all kinds of potential. Frankly, I was feeling a little bit lonely, and a little bit like what I was pursuing wasn’t going to be my way of making the world a better place, and maybe there was something else I could do.
This was a pretty dramatic change of heart. I had had no inkling of being interested in biology or in medicine until I was already a second-year graduate student. And yet it became more and more compelling.
DR: You got your PhD at Yale, and then you said to your parents, “Guess what, I’m going to go to medical school”? Did they say, “We’ve given you enough degrees already”?
FC: Fortunately for them, they hadn’t paid for any of my education. I was the youngest kid, and the money kind of ran out before they got to me. Fortunately tuition at the University of Virginia was about $900 a year, so I could make that mone
y in the summer. For Yale I had an NSF scholarship. Thank you, National Science Foundation.
To go to medical school was going to be a challenge, because I was already married and had a kid at that point. But the University of North Carolina offered an occasional medical student a Morehead Foundation opportunity to have their fees and tuition paid for, and even a little bit of a stipend.
As a medical student I was trying to figure out, “How do I put this all together—my love for digital information, for mathematics, which is what I got out of chemistry and physics, with this messy thing called medicine?”
Where does it all come together? In genetics. DNA is digital information. It’s something you can compute on. It also is fundamental to life and it’s fundamental to medicine. So by the time I was halfway through my first year as a medical student, I knew I wanted to be a medical geneticist.
DR: When you were younger, you were an agnostic. Now you have become very involved in religion, and you’ve written books about it. How did you transform yourself into somebody who’s a committed Christian?
FC: It does seem like an odd story, doesn’t it? My parents were not opposed to religion, they just didn’t think it was particularly relevant, so I had no religious background.
So I was an agnostic. But by the time I got to graduate school, I was shifting even more to being an atheist, and I would not be too comfortable keeping quiet if somebody was talking about the supernatural. All that mattered was nature and how you study it and how you describe it.
Then I went to medical school. That third year of medical school, you’re thrust onto the wards, and you’re sitting at the bedside of wonderful people, many of whom are not going to survive, and you start to realize that your own thinking about life and death has been pretty unsophisticated compared to the reality of what these people are facing.
I realized that I was a scientist, I was supposed to make decisions about really important questions based on evidence, and I’d never really considered whether there might be evidence supporting the idea that there really is a God. I just assumed the answer was no. That was a bit unsettling, but it seemed like something that I shouldn’t ignore. It took me a couple of years of fighting against that, trying to prove that this was all wrong and that I could stick with my agnosticism, but ultimately I realized I couldn’t, that it was so compelling.
DR: The Bible would say that maybe the earth is a couple thousand years old. Scientists would say it’s much older, five billion years old. How do you reconcile those two different strands of thought?
FC: A lot of people are tripped up by what they interpret as a conflict between a literal interpretation of Genesis 1 and 2 and what science teaches us very convincingly about the age of the universe—almost fourteen billion years—and the age of the earth—almost five billion years. But you know what? That idea that there’s a conflict is a fairly recent arrival on the scene, based on an insistence of an ultraliteral interpretation of Bible verses that were almost certainly not intended to be read that way.
I wrote a book, The Language of God, about this perceived conflict, because for me there really has never been a discrepancy between what I know as a scientist—if you’re going to ask me a question about nature, science is going to be the answer—but also as somebody who’s interested in questions that science can’t answer, like “Why am I here?”
DR: At the National Institutes of Health, you have twenty-seven institutes, and they do research. If somebody has an acute problem that can’t be solved elsewhere, they can get into the National Institutes of Health hospital?
FC: It’s called the NIH Clinical Center, and it’s the largest research hospital in the world. People come to that hospital to participate in clinical trials that are experimental. Many of the people who come there have exhausted all of the other opportunities for any kind of help for whatever it is that ails them.
The taxpayers pay the whole cost, and we think that’s the right way to do this. The people who come there trust in us to do the best we can to find an answer for something that doesn’t have answers.
DR: In the business world, biotech medicine and other companies in the health sciences can get a lot of venture capital funding. Why do we need the government to still provide research money?
FC: The private sector does do an awful lot of the good stuff that results in America leading in biomedical research. They are our partners, and important ones. They actually spend about twice what the government does in this whole ecosystem of biomedical research.
But the private sector has to focus on things where their shareholders are going to see that there’s some possibility of a profit. Most of the things that you now see that are getting to profit would never have gotten there without the government having invested first in the basic science that it takes to make those discoveries.
DR: Give me one or two examples, if you could, of something that you or your predecessors funded that became very helpful to the health of individuals.
FC: There’s a long, long list of examples. Let’s just take what’s happened with heart disease. Death rates from heart attack are down by more than 70 percent. Why is that? Part of that is our funding something called the Framingham Study in Massachusetts, which taught us what the risk factors are that you could actually interfere with. We didn’t really know how important hypertension and high cholesterol were and how critical it was to treat them until that came along. Part of this is also drugs, statins, the most commonly prescribed drug these days.
DR: Do you think it’s possible to eliminate all heart problems by diet, exercise, and statins?
FC: There again, heart disease has a strong genetic component. Cholesterol is certainly a big risk factor. It’s particularly important for somebody who’s had a heart attack and doesn’t want to have another one to get on a statin and to really manage their cholesterol very tightly.
But people are different. We still have this need for individualized data. We are about to launch a program to enroll one million Americans—one million—in a prospective long-term study of health and illness, which will begin to give us some answers to those questions. Ask me again in ten or fifteen years, I think I’ll have a better answer about what works, and what works for which person.
DR: President Nixon famously said, “We’re going to have a war on cancer,” and we’re still fighting that war, though we’ve made a lot of progress. Do you think within fifty years or a hundred years it’s possible to eliminate all the various things that are called cancer?
FC: I think we’ll get very close to that if you’ll give us thirty to fifty years, because we’re already making remarkable strides. And what we have been able to do, which was not possible when Nixon declared the war, is to develop some really good weapons to figure out how to go after this disease.
We also have the ability to diagnose it earlier and earlier, and that’s obviously an important part of making sure that it’s curable. But of the big, exciting developments, one is the fact that every cancer has DNA mutations in it that are driving those cells to grow when they should not. We can now say for that individual which genes are driving that malignancy and which drugs we have that work for that pathway.
So instead of chemotherapy, which is a form of carpet-bombing the situation, we now have smart bombs that go after that particular cancer with fewer side effects. Then we have immunotherapy, activating the immune system to tackle a cancer.
DR: As people live longer, one of the side effects has been more prevalence of Alzheimer’s, or dementia. Do you think we have any progress being made on Alzheimer’s, and what do you think causes it?
FC: This is a huge challenge. We now have more than five million people affected in the U.S., and that’s going to go up as our average age goes up. We have an enormous investment in this at NIH, and are working closely with the private sector in a partnership to try to come up with ways to prevent or at least delay the onset of this.
Clearly some of the factors are genetic, and w
e now know about more than a dozen places in the genome where a little change in the spelling will increase or decrease the likelihood of this disease. But some of it is still a bit of a mystery. What is it that triggers it? Can we come up with a solution? I’m guardedly optimistic, based on the things we have learned about what’s going on at the molecular level. But it’s not right around the corner.
DR: Why should somebody go through the agony of medical school and then work for the government or do things relating to health care but not making lots of money by the standards of Wall Street? Why should somebody come and work at NIH or become a medical doctor or a researcher?
FC: It really comes down to this: what is it that we all hope to do in that brief time that we’re here on this planet? Right now I would say medical research is very much near the top of the list of opportunities that people have to make a difference, because it is such an exciting time. We are making progress at a pace now that would have been unimaginable a few decades ago, and that’s going to continue.
So if you want to spend your time working hard but feeling as if you made a contribution to help people who are suffering, this is a great way to do it. And money alone is probably not going to give you that same satisfaction.
It’s also an adventure, it’s also like a detective story. Scientific discovery is one of those amazing moments where you learn something that nobody knew before, and that’s such a rush. You don’t get to have that experience in a lot of other professions.
What I worry about, though, is that this current generation of budding scientists is feeling pretty anxious about whether there is a career path for them. We’ve gone through a tough time in terms of support of biomedical research in this country, and we’re not done with it yet.
DR: What would you like to see as your legacy when you ultimately do retire from this position? Would you like to do something else in medical research? Would you like to ride your motorcycle? Would you like to start a rock band?
The American Experiment Page 28
