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Dr. Francis Collins recently announced his retirement after the longest tenure of any director of the National Institutes of Health. The only presidentially appointed NIH director, Collins has served for 12 years, under presidents Obama, Trump and Biden.
A geneticist, early in his career he helped identify the gene that causes cystic fibrosis, and later oversaw the Human Genome Project, the mapping of every gene in the body, which he still considers one of his greatest achievements.
Collins, who will step down by the end of the year, spoke with USA TODAY about scientific advances, pandemic preparedness and his worries about the future.
Coping with COVID
Question: What do you want your legacy to be? What should people remember your tenure for?
Answer: I hope they will remember me for having steered this amazing ship of scientific discovery in a way that led to advances across the board from basic science to clinical accomplishments, and who, in the last 22 months of it, also brought to bear the amazing power of scientific excellence, to develop vaccines, therapeutics and diagnostics, to try to save us all in the worst pandemic in more than a century.
Q: Do you think we are in a better place today to fight the next pandemic than we were 20 months ago?
A: We are indeed. We've learned a tremendous amount by having to do the all-hands-on-deck effort that has been mounted over these 22 months, and we're having a lot of serious discussions right now about the lessons learned and what kind of preparation we should be making for the inevitable next pandemic. I hope we don't slip back into complacency, as has sometimes happened in the past – but the momentum behind efforts to prepare better is pretty unstoppable.
Q: Maybe next time we could make a vaccine even faster than 11 months?
A: Even before we know which pathogen we're going to have to deal with. The messenger RNA technology (used in the Moderna and Pfizer-BioNTech vaccines) makes it a particularly opportune moment to invest in this kind of pandemic preparedness, because we could actually begin the process of designing and manufacturing at small scale vaccines for the 20 most likely next pathogens, so we'd be already that much further along if we need them.
Politics and pandemics
Q: What about the other pandemic of misinformation and disinformation?
A: How indeed do we deal with that? It is a pandemic and it's a dangerous one and it has casualties: 1,000 people died today who could have had a COVID vaccine a few months ago and said they didn't need it.
I didn't see this coming. I knew there were anti-vax sentiments out there. People who were really strongly opposed, oftentimes for reasons that are not very scientific. I didn't realize that this was going to be so contagious. And then I didn't realize that the misinformation and the disinformation would spread so widely and so effectively by social media, whereas the actual correct information has been harder to get into people's minds. That is deeply troubling. But it also doesn't bode well for our future as a nation if it is so readily possible for lies to triumph over the truth.
Q: You've managed to survive in a very political environment for a long time. How have you been able to do that?
A: I try not to become political – to live in the political environment but not be a part of it. I never registered with a political party. My relationships on Capitol Hill, I think, are equally strong in both parties and both houses.
And I'm fortunate that what I work on – medical research – is one of those areas which, while not entirely free of partisan intervention has mostly been able to rise above that fray. (Politicians) care about protecting people from illness – themselves, their families and their constituents. And if NIH is their best hope for doing that, they want to support us.
And I have a number of really remarkable heroes to thank in the administrations and in the Congress who have made that possible and made our budget grow by 40% in the last six or seven years, which has made a whole lot of these new initiatives that I'm excited about possible. It would have been hard to do those if you were in a shrinking budget situation.
Mapping all human genes
Q: What do you see as the most important benefits of the Human Genome Project?
A: One benefit is to be able to track with great speed and great precision the emergence of threatening microbes, including being able to assess their evolutionary development almost in real time. It's a whole course in evolution right there.
Cancer is a disease of the genome because of mistakes in DNA. Almost anybody who was diagnosed with cancer today would want to know exactly what are the mutations in their tumor that are driving those good cells to go bad. And what can be done as far as choosing a therapy that's a good match for the pathways that need to be targeted.
Another area I think increasingly is attracting attention as it should is the use of genomics in the newborn nursery – to make a diagnosis of a puzzling situation which might otherwise be hard to resolve, sometimes for months or even years. Increasingly in those puzzling cases, a genome sequence can be derived in a couple of days and something like 40% of the time to get an answer. It's made a huge difference in the ability to care appropriately for those babies.
Q: Presumably you see a lot of promise in gene editing, where doctors go in and change the actual genetics causing the disease?
A: I'm totally jazzed about what's possible with gene therapy, and especially so if we can figure out how to utilize gene editing to approach the thousands of genetic diseases for which we know the DNA misspelling, but we don't currently have a treatment.
Q: There have been some bumps with gene editing recently, where the "cures" turned out to be only temporary or the side effects extreme. Do you think those will be resolved?
A: They won't happen quite as smoothly as you want them to. That's the nature of science. But you learn as you go along and ultimately you get to where you want to be – you just can't always predict how many bombs lie on that road or how long it will take to get past them. And we have to be incredibly grateful to the patients who are our most important partners in trying to go down that road knowing that they are with us facing an uncertain future with every new trial that gets started.
Q: You've said you're going to go back to your lab after stepping down as director. What are you still hoping to accomplish as a scientist?
A: I am excited about being able to bring all the tools of genomics to bear on type 2 diabetes as a big project in the lab, and we're really starting to understand how this very complicated disorder does have hereditary influences and how those can teach us about the pathways that are involved that can lead to new ideas about therapies.
And I continue to chase after the possibility of treating this rare disease progeria (which causes extremely rapid aging) with increasingly effective strategies like gene editing.
Q: And is that going to be enough for you after such a busy career?
A: I don't know. I'm going to have to figure out what I want to do when I grow up. I might want to do some writing. I want to dig a little deeper into areas of science that I find fascinating, but rarely have the time to really explore. And I don't know. Watch this space. Let's see where I end up in a few more years. I'm not ready to start playing golf – at least not very often.
This interview has been lightly edited and condensed.
Contact Karen Weintraub at firstname.lastname@example.org.
Health and patient safety coverage at USA TODAY is made possible in part by a grant from the Masimo Foundation for Ethics, Innovation and Competition in Healthcare. The Masimo Foundation does not provide editorial input.
This article originally appeared on USA TODAY: NIH Director Francis Collins on his legacy, COVID-19 and the future