N.I.H.’s New Leader Wants to Broaden Participation in Medical Research

When Dr. Monica M. Bertagnolli moved into the director’s suite at the National Institutes of Health, she brought with her a single piece of art, a lithograph created by the granddaughter of a cancer patient she once treated. It depicts an abstract geometric female figure and the organs she lost to cancer. Its title: “We Are Not What You Have Taken: A Response to Cancer.”

The image speaks to Dr. Bertagnolli, a cancer surgeon who previously led the National Cancer Institute and is a breast-cancer survivor herself.

After being nominated by President Biden in the spring and winning Senate confirmation last month, she became the 17th director of the N.I.H., which has a budget of more than $47 billion and occupies a sprawling campus in Bethesda, Md. She is only the second woman to lead the biomedical research agency on a permanent basis.

Several weeks into her tenure, The New York Times visited Dr. Bertagnolli at her office in Building 1, a stately brick structure where President Franklin D. Roosevelt dedicated the Bethesda campus in 1938. This interview has been edited and condensed.

You’ve been here a few weeks. What are your observations?

The research laboratories that get funded out of here are amazing for fundamental science. We need to continue all of that work. But what we’ve had challenges with is really being able to go with our research deeply into clinics at every community where people are treated and cared for.

I think we’ve done really well in our major academic medical centers. But if we’re going to really do clinical research in a way that achieves the results we need, we need everybody to have a chance to participate.

It sounds like you want more participation in clinical trials from people in rural areas, and you want to infuse the data that we have into the treatment that they get.

Exactly.

I can’t help but ask if that is informed by your growing up on a ranch in rural Wyoming.

Sure. Because I understood that health care delivery was just different for the people I grew up with. From my ranch house to a paved road was 18 miles. And from the ranch house when I was growing up to the next landline for a telephone was about 50 miles.

You had a telephone, though?

No, we didn’t. Not at the ranch in the summertime. When school would start, my mom would move with the kids down to town. We had a house in town as well. And we’d go back and forth to the ranch on the weekends. We had a telephone in town.

Activists are pressing the N.I.H. to use so-called march-in rights to lay claim to patents on drugs developed with tax dollars, as a way of lowering prices. Are you open to that?

Absolutely. It’s part of my authorities as N.I.H. director. But I have to really be certain that if march-in rights are ever used, that the result is the intended one — meaning people get better access, because that’s really the goal. We want every single person to have access to the benefits of biomedical research. (After this interview, the Biden administration issued a proposed framework to guide the use of march-in rights by the agency.)

The N.I.H. has come under scrutiny for funding gain-of-function research — including in Wuhan, China — that some experts think is dangerous and could lead to the next pandemic. Are you reviewing that kind of research and do you plan to make any changes?

The gain-of-function research that you’re specifically referring to is modifications that are done of potential pandemic pathogens, right? What if we can develop a vaccine way before we ever have to see a new virus that’s going to be another Covid-19 virus? That would be a huge benefit. But if we’re going to do that kind of research, we have to make sure that the risks are absolutely minimized and always be mindful that the benefits justify the risks.

The White House is weighing recommendations from the National Science Advisory Board for Biosecurity for improving oversight. Where does that stand?

To be fair, I don’t know yet. But it’s a huge priority for all of us, and I will be a very active participant, because oversight is critical for that kind of research.

The Pew Research Center recently put out a poll showing that Americans’ trust in science has continued to decline — and more so among Republicans than Democrats. Does that worry you?

Very much so. Everything we are trying to do in science is about getting better care to people. It’s absolutely impossible to deliver better care to treat people without trust.

But I’m thinking of trust, writ large, in institutions like the N.I.H. We’re seeing Republicans on Capitol Hill be critical of the N.I.H. What can you do to bridge that partisan gap and restore Americans’ faith in the institution?

Be very transparent, very honest in what we know and what we don’t know. Think about what we’ve all just been through as a nation — the trauma we’ve all been through. It’s ridiculous to think we’re not going to come through a trauma like that without some real consequences. But I also think that we can use it as an opportunity to really build trust in science, because I do believe that science has helped us cycle out of the dark days of this pandemic.

You’ve been a patient, and you’ve talked about that. How are you feeling? Can you talk about your status?

I am a cancer survivor. I think we all have to be humble in the face of a cancer diagnosis. So my chance of living the rest of my life free from cancer is very, very high. That’s the good news. And the point that I make to everyone when asked about this is that all of the evidence that guided my care came from N.I.H.-funded research.

I would be remiss if I didn’t ask you about being only the second woman out of 17 directors. I walked down this hallway and I saw a lot of portraits of men. How does that affect your thinking about the role that you inhabit?

I’m very glad to see women getting opportunities to show what women can do. If you look down that hallway, for all those years, there were really talented, capable women out there, too. They just didn’t have the chance.