Outgoing NIH director reflects on genome discoveries, COVID and what’s next

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Dr. Francis Collins has had a distinguished career by any measure. A leading figure in the mapping of the human genome sequence, he’s worked to translate that discovery into a revolution in medical treatment. In 11 years as director of the National Institutes of Health, he’s overseen a nearly 40% growth in the agency’s budget. He’ll be stepping down as director at the end of the year, but continuing to lead the laboratory at the National Human Genome Research Institute. Federal Drive with Tom Temin spoke with him about some of the big questions.

Interview transcript:

Tom Temin: Good to have you on.

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Francis Collins: It is nice to be with you, Tom.

Tom Temin: And I wanted to ask the basic question, because, you’ve been tied up with NIH for decades, and including running it for 11 years. But sometimes we take a step back and say, “Well, if I had a blank sheet, what would this organization actually look like?” Have you given that thought to NIH? And what would that thought be?

Francis Collins: Tom, it’s an interesting question. When Harold Varmus left after he had been NIH director for about seven years, he wrote an article in Science about how NIH is really way too complicated, it should be reorganized, and about six institutes instead of 27. I think at that point, they weren’t even quite 27. And it made a big buzz out there. And I’ve thought about that, in the course of the last 12 years overseeing the organization. Yeah, I suppose if you could hit the reset button and put together an org. chart, it would not have 42 direct reports, as I currently do. Anybody who studies organizations of businesses would say that’s just not workable. But you know what, it kind of works the way it is. I’m not sure I’m a fan of a major restructuring. Because what it gives you with these 27 institutes, each of whom has a institute director, who’s a world class scientist, you have a really amazing brain trust there – of leadership, and I depend on those people. And I’ve now recruited most of them over these 12 years. So I’m not sure I would reset things. I would reorganize some of what we’re doing. And that’s actually the basis for this proposal. For ARPA-H, this new component of NIH that would function like DARPA does for Defense, where you take high risk projects and you would move them at exceptional speed, and you would basically have NIH function and more of a venture capital mode. I’d like to see a lot more of that happen. And I hope this will get launched in the coming months, because that would be a part of NIH that we haven’t had, that we could really benefit from. Frankly, a lot of it, it really works well. We are the most admired and largest supporter of biomedical research in the world. So I wouldn’t want to make a huge explosion happen here. But adding some new things like ARPA-H, that would be great.

Tom Temin: Well, let’s keep McKinsey & Company out of there. And then no radical ideas will happen. But –

Francis Collins: No comment, no comment.

Tom Temin: But the ARPA-H, that would be, say, a good place to house things like the million-person tests going on and those big projects that cross cut.

Francis Collins: I’ve had the privilege of being able to start, like the million-person All of Us [Research] Program is going to be an incredible foundation for lots of interesting research going forward. A million people who are fully involved as partners in research making all of their data available, their electronic health records, their genome sequences, lots of information about their health practices, that’s going to be a way in which we learn a lot about not just how to treat disease, but importantly, how to keep you from getting sick in the first place – the prevention part. Yeah, that’s been one of the privileges of being NIH director is seeing projects like that have sort of the right moment to happen, convincing the Congress that they’re worth investing in. The BRAIN Initiative is another one like that where we now have, oh goodness, hundreds of scientists working together – many of them are engineers – figuring out how the brain works. And that would not have happened without the opportunity to pull a big bold project together and ask Congress to help support it.

Tom Temin: And what has been the biggest challenge in running a organization that big and that diverse? I’m guessing it’s maybe the lack of opportunity to do science yourself, perhaps and peer into a microscope once in a while.

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Francis Collins: You know, I’ve tried to keep myself anchored in the reality of research. So I’ve continued to run a research lab, Tom, since I arrived at NIH in 1993. I have a group of about 10, incredibly hardworking, devoted staff scientists, I have a lot of computational experts now, because that’s the way the science is going. And [postbaccalaureate] students, three of them this year who are just fantastic. And it gives me a chance to really keep my hand in. We’re working on Type 2 diabetes, we’re working on this rare form of premature aging called progeria. It’s very exciting. In fact, as I step away from NIH director role, I will step back into that lab more extensively. I hope they’re ready to see more of me.

Tom Temin: So you’re not retiring from work. You’re just leaving the seat as head of NIH?

Francis Collins: That’s right. After 12 years-plus, it’s time for a new vision, new leader. That’s the longest any NIH director appointed by presidents has ever served. And I’ve now actually served three presidents and no previous NIH director has served more than one. So yeah, my shelf life looks like it’s kind of reaching its limits, and it’s time to bring on somebody. And if I am gonna not stick it out here for the whole Biden first term, then it’s good to give the president a chance to appoint somebody before the term gets too late.

Tom Temin: Well, I’m hoping the next director will find a way to convince Congress to tunnel Route 355 under the NIH and we won’t have any more exits like

Francis Collins: Now, now, now!

Tom Temin: But what has it been like and how have you dealt personally with the pressures from the pandemic? Because there’s a kaleidoscope of things going on: Science, health, and frankly, political.

Francis Collins: Yeah. And I guess it’s fair to say this has been the most intense experience that you could imagine, as NIH Director. I’ve been pretty much flat out, probably 90% of my time focused on COVID since January 2020. And I added it up – it’s about 100-hour-a-week job now trying to just juggle all of the parts of this, the development of the vaccines, which was fantastically successful in record speed with amazing outcome of vaccines that are safe and remarkably effective. But also working on therapeutics developed a partnership with industry called ACTIV [Accelerating COVID-19 Therapeutic Interventions and Vaccines] which has 20 companies working with NIH, FDA, CDC – to really speed up the process of identifying possible therapies and getting them tested in rigorous clinical trials. And diagnostics – we have a program called RADx, Rapid Acceleration of Diagnostics, which has moved forward the ability to develop new technologies for testing for the virus in a way that’s never been done before, in which right now today is one of the reasons you can find those home testing kits at the pharmacy. Because that was developed in remarkable timetable by our program. So yeah, it has been utterly consuming, and it’s sort of paradoxical, I feel so proud of the scientific community for what was possible to do in the face of this pandemic. And so frustrated that in the state of vaccine resistance, we have not fully benefited from that. And we still have more than 1,000 people dying every day from COVID, almost all of them unvaccinated. Almost all of those deaths, therefore, were preventable. And somehow we may have won in the area of science advances. We have not really won in terms of public communication to convince those 65 million unvaccinated people that they’re putting themselves at a terribly unnecessary risk.

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Tom Temin: Alright, and I wanted to ask, too, you mentioned the pharmaceutical industry, which has been a big partner in this whole push. And over the years, the government has had kind of a love-hate relationship with the pharmaceutical industry, but it is a source of innovation and great products, and they’re costly to bring to market. If you could change anything about that industry, from the standpoint of a scientist and research funder, what would it be? What could they do differently maybe to, I don’t know, get the perception that they’re better citizens?

Francis Collins: You know, I think it’s easy to beat up on the pharmaceutical industry. Before I was NIH director, I’m not sure I really had that good a concept of how they operate, how they do their science. One of my goals, Tom, has been to try to build a better partnerships with industry, there is a lot of talent, a lot of resources. So seven years ago, working with a number of leaders, particularly Mikael Dolston of Pfizer, we set up something called AMP, the Accelerating Medicine Partnership. Let’s get the best scientists in academia, government and industry around the same table. And let’s ask what are the things that are holding us all up that we could go faster on if we did it together and did so in an open access format? NIH is not going to get engaged in something that’s going to benefit a single company. So we formed this project on Alzheimer’s and on diabetes and on rheumatoid arthritis. And that was going pretty well. So we added schizophrenia. And we’re now doing one on Parkinson’s disease. And pretty soon there’s going to be one on gene therapy, and a new kind of heart failure that needs a lot of attention. And bringing those experts together, this has been incredibly gratifying. And I think we did it the way you would want to see it done. Everybody has skin in the game, the government contributes half the funds. Industry contributes half the funds, and we work together to decide how to expand them and they’re very rigorous milestones, and they have to be met. Otherwise you pull the plug. It has been a learning experience. I think what’s happened is a lot of the pharmaceutical company scientists who kind of thought academics are more interested in publishing papers than in helping people – which is one of those attitudes you find out there – have learned otherwise. And a lot of the academic scientists who thought “Oh, those pharmaceutical people, all they want to do is make money and their scientists aren’t that great,” they’ve figured out, oh my gosh, these people are fantastic! This is what we need more of is that kind of willingness to work together. And I feel a sense of that and COVID-19 has certainly brought that even more into play. So what would I change? I’d say, Let’s do more of that. Let’s have fewer lawyers in the room – sorry, lawyers. Let’s figure out how we can do things without being so risk averse, and having so many ways that sort of, we can’t share this or we can’t share that. There’s a lot we can share. But I think we’re in a good place, the American ecosystem, involving government, academia, industry, philanthropy and stakeholders is remarkable – what it can do, if you actually get everybody in the same room around the same table, at least virtually. And I think we could do a lot more of that.

Tom Temin: Alright, so we’ve knocked off lawyers and consultants. But let me … I wanted to continue with a question about the genomics of the medicine field. And of course, even if you weren’t NIH Director, you would have had a claim to fame as leading the mapping of the human genome. Since that time, and it’s getting to be 20 years or so, how would you gauge the progress of what the potential of that mapping is versus what we’re able to do based on it at this point?

Francis Collins: Yeah, it is 20 years, the publication of the first draft of the human genome was in 2001. So here we are 20 years later. There’s something called the first law of technology, which is that when there is a significant technological advance, people will always overestimate its immediate implications and consequences and underestimate its long term consequences. That is applied precisely here. I think there were some crazy statements that were made in the immediate wake of the Genome Project, hopefully not many by me, that said, oh, everything’s going to change overnight. You’ll go to your doctor, and everything will be revamped to because your genome sequence will drive that. Most of us haven’t yet seen that happen. Unless, of course, we have somebody who unfortunately got a diagnosis of cancer. There, now you can start to see how this has been revolutionary. Cancer is just a totally different kind of problem now, because you don’t want to have your cancer treated without knowing exactly what caused those good cells to go bad in your situation. Every cancer is different at the DNA level, everybody should really be able to find out what that is, and then optimize the treatment, whether it’s a drug or immunotherapy. So that’s been a big consequence. Another one I would point to is the way in which we’re now able, particularly in the newborn nursery, where there are puzzling circumstances of a newborn, that doesn’t seem to be quite flourishing, and you’re not quite sure what’s going on. Getting a genome sequence, which can be done in like two days, for $1,000 – which is remarkable. – remember, the first one cost $400 million – gives you an answer that can be actionable immediately. That has been transformative for that field. And certainly in research, Tom, how you mean, a graduate student today, working in any area of biology just can’t imagine how you ever did anything without access to the complete genome sequence of whatever organism you’re working on with a click of your mouse. They just – it’s impossible to contemplate how research happens without those resources at your fingertips. So it’s been transformative. But the best is yet to come, I think in terms of the way in which this will really change other aspects of medicine. And here again, that brings me back to that All of Us Program and those million people whose complete genomes are going to be part of the way in which we figure out how do we use this to help people stay healthy? How do we go from one size fits all to really precision health?

Tom Temin: And let me ask a personal question: You are a person known to be a man of faith. And in this largely secular age that we live in, often, people say, well, faith and science are incompatible. I mean, in some sense, you’re living proof that that isn’t true. But how do you answer that question?

Francis Collins: It is unfortunate that there seems to be at least in our society, a general sense in a lot of people’s minds, that faith and science are just basically incompatible, and that you got to pick one or the other. I think that’s a terrible tragedy. They are different ways of knowing they are different ways of answering questions, but they ask, they answer different questions. Science is really good at answering questions about how things work. It is a reliable way of understanding nature. That’s what I’ve spent my professional life on. But science doesn’t help me so much with the “why” questions? Why am I here? Why is there something instead of nothing? What exactly are we supposed to be doing here? What’s the meaning of life? I’m interested in those questions, too. And I was an atheist back in my early 20s, and then discovered there was something really missing. I felt like my opportunity to ask and answer questions was impoverished by being totally focused on what you might called metaphysical naturalism which says, it’s science and nothing else. That’s scientism, that’s not just science. To be able to live my days, both as a person of faith and a person of science greatly enlarges and enriches my experience. And I find no conflict between those perspectives, as long as you’re careful about exactly how you’re applying them. And I wish that was more broadly appreciated. I read a little book about that called “The Language of God” 15 years ago, which, amazingly, people are still reading. And maybe one of the things I’ll do, once I step away from being NIH director is to provide a second edition because it’s about time for an update.

Tom Temin: All right, I guess in some ways, then medicine brings it together, because ethics and religion teach us how to treat one another. And maybe science gives us the medical tools to do that, when those are indicated?

Francis Collins: That’s well said, and I think those things do belong together. And for me, that’s been a source of great reassurance that there is a foundation not just of understanding, DNA and how it works, but also understanding moral principles and how best they can be applied in difficult situations.

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