The NIH director on his future, a favorite book, and the time he disobeyed his mom

Eight years ago, questions swirled around Dr. Francis Collins — a geneticist whose nomination as director of the National Institutes of Health left many wondering how he would lead and how his abiding religious faith might factor into his decision-making.

Today, the main questions swirling around Collins center on the agency’s direction and whether its 27 separate centers and institutes might see a funding increase after 12 years during which the NIH budget has remained flat. Collins recently sat down with STAT at NIH’s sprawling campus to discuss those issues and more.

The conversation that follows has been edited and condensed.

Is one of the institutes in more need of funding than the others?

They’re all hurting and the various ways of measuring the pain, a way that we often look at is, if your grant went into that institute, what’s your chance that it’s going to get funded? Across all of NIH, that now stands at about one chance in six, which is terrible and in fact much worse than it’s been over the course of most of the last 50 years. Usually it’s been more like one in three, which is still not a cakewalk. … When you get down to this point, one in six, we know we are leaving really wonderful science on the table.

If you look across the institutes, there’s some variability. I think the ones that are in the toughest shape, it may be a one out of 10 instead of one out of six, but they’re all hurting. There’s no institute here that feels good about their ability to support the science that they’re asked to look at.

What’s the hardest part of educating lawmakers about how important NIH is for the country?

I guess I've stopped counting, but I am sure I have met with more than 300 members of the Congress face-to-face, and had a conversation about what medical research is about right now, and how does it happen, and what are the most exciting developments — and I can’t think of a single one of those that went badly. That would include people whom you would think of as not necessarily friendly to any kind of government spending, but who, after a conversation, kind of get it: "Oh, this is something that government does that is really beneficial and that we should support."

I often also point out that if you’re really concerned about the cost of health care, we need to make advances to understand how to keep people healthy and maybe we won’t pay so much for care for people with chronic illnesses, and if you care about America’s economy and American leadership, the evidence is that science and technology investments are the best way to maintain that, and we are losing ground where other countries are actually rocketing upward. That gets attention and it should.

I don’t have to be all that articulate to get this case across. The story tells itself, it’s incredibly compelling.

If there were a science literacy test for presidential candidates, what would you like to see in it?

I don’t think we should expect presidential candidates to have that kind of command of the details that maybe as scientists we do, but I think we would expect them to have an appreciation of the importance of evidence, an appreciation of the importance that data is different than an opinion, and a willingness always to keep an open mind and see what the facts tell you about an issue, whether it’s climate change, whether it’s some policy decision that you’re trying to make about electronic health records, or whether you’re going to buy into somebody’s position about whether vaccines are safe or not.

Are there books you would recommend for presidential candidates?

I think the best book that’s been written about science recently is “The Emperor of All Maladies,” about cancer. Siddhartha Mukherjee’s really wonderfully well-written and page-turning description of how we got to where we are and where we’re going next, that gives both incredible component of human stories but also a really, I think, accessible insight into the scientific process, its successes, its failures, its personalities, all that. I’d start there.

What are your plans for January 2017?

I have no idea. I am fully aware that the NIH director is appointed by the president, and so the future depends very much on who the next president is and what they want to do.

Would you be willing to stay?

I don’t know, eight years is a long time to do a job of this intensity, and I also think it’s good for institutions to have turnover, so I’m not sure I would want to do this.

How did you decide to go into administration?

Kicking and screaming.

Tell me.

Before I came here, I was a professor at the University of Michigan, taking care of patients, running the research lab, teaching medical students. I loved all of those things, I loved Ann Arbor, and then this call came: Do you want to be considered to come to NIH and lead the Human Genome Project? I just never thought of myself in those terms, the biggest thing I’d ever run was my own lab. So I called my mom, and she listened, and she said, “Well, you should be very complimented that they called you, but if there’s one thing I never want any of my sons to be, it’s a federal employee. Say no.” My mom’s a Republican.

Oh, that’s quite funny.

Obviously I didn’t listen. It was tough, though. I did say no. The first time, I said no and walked away from it and finally realized that there was only going to be one Human Genome Project. It was going to be transformative, it was something that I cared deeply about in terms of wanting it to succeed and could I really look myself in the mirror and say I just walked away because it wasn’t convenient and I didn’t want to be a fed and I didn’t want to have to run something? Not good enough. So I said yes.

And because that went so well, then you decided you could stay in administration and move up?

It’s really all about science. It’s not the kind of, oh my God, it’s mountains of paper that many people might think of in terms of what one has to do. Most of what I do that you might call administration is think about scientific priorities and how to move the needle in one direction or the other with the resources we have. That’s inspiring, and NIH has this ability to basically lead the world in the direction that science is going to go. We’re still the largest supporter of medical research. It helps me to keep a lab going, over in that building.

Oh that’s right, you do have a lab.

I have 11 people over there right now, we’re doing experiments and pushing back the frontiers in diabetes and aging research. That’s a wonderful way to stay anchored and to keep that part of who I am alive and not having it sort of atrophy.

You had a wonderful quote about how, after the Human Genome Project, you had seen some of God’s instruction manual. I wonder if since then, you’ve seen anything else more in the instruction manual. Have you seen another chapter?

Oh, many chapters. I mean, the chapters just keep appearing. That initial discovery of the human genome instruction book was exhilarating because here it was in front of us, but it was also almost impossible to read, written in this strange language, with these just four letters in the alphabet. You need it to sort of keep moving through the chapters, figuring out, how does this work. It’s still awesome to me. It should be to anybody who thinks about it, that this essentially book of instructions of 3 billion letters has the sufficiency to take a single cell and turn it into a human being.

We’ve all gone through that process and it’s astounding that it’s sufficient to build all the complexities of human biology, including the brain, with its 86 billion neurons. It’s breathtaking, you can’t look at that without just having a sense of awe.

You’re a person of faith?

I am.

And you’re a scientist. How do you reconcile those, when you preside over a place with so much suffering?

Why does a child get cancer? Nobody did something evil to make that happen, it just happened, and it’s heartbreaking to watch, and we watch it a lot over here in our clinical center. Walk through the pediatric oncology ward on any afternoon and see the kids that are there who’ve already failed their first line therapy and desperately hoping that something’s going to make them better, or their parents are.

I still wrestle with that. Maybe that’s part of why we are called to be God’s agents in that situation and try to solve that with our science and our medicine.

Originally published at statnews.com
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