It’s a feat not usually accomplished in Washington: surviving as the top political appointee of a federal agency when an administration changes power and political stripes. Yet Francis Collins, MD, PhD, the director of the National Institutes of Health, has held that position for 10 years, from Obama through two years of Trump. During that time, he has seen his agency flourish.
After years of financial turbulence, the NIH’s budget has recently increased, and stability has been restored, thanks largely to consistent bipartisan support in the U.S. Congress. The NIH is the largest public financial supporter of biomedical science in the world, spanning the spectrum from basic to clinical research.
Before heading the organization, Collins, a physician-geneticist, led the international Human Genome Project, the project that successfully determined the DNA sequence of the entire human genome.
A man of many achievements, he was awarded the Presidential Medal of Freedom in November 2007 and the National Medal of Science in 2009. Stanford Medicine’s contributing editor Paul Costello spoke with Collins and asked him why, amid all of his duties leading NIH, he still spends time in his own lab at the agency doing research. He said it helps keep him grounded and, well (with a laugh), sane.
Costello: Funding for the NIH has stabilized and increased through bipartisan support of Congress. What expectations have come with those increased dollars?
Collins: Congress has put an additional $9 billion back into our budget during the past four years, which puts us in a much better place to fund young investigators to take new and risky approaches that, if they turn out to work, are going to be incredibly significant.
Congress does expect us to be good stewards of those dollars and has certain areas of particular interest. Alzheimer’s is at the top of that list. Funding for Alzheimer’s disease has more than tripled in the past five years because of the crisis it causes many families, and how it could bankrupt our economy in the long run.
Costello: All of Us is a new NIH research initiative to create an unprecedented database of biometric, genetic and health data from U.S. volunteers. How will that data be used, shared and accessed?
Collins: I’m incredibly excited about this project, which is the most ambitious longitudinal cohort study that NIH has launched in a very long time. About 187,000 people have started the enrollment process, more than 139,000 of them have fully enrolled and we’re on the way to a million.
One of our goals is to have 50% of the participants coming from minority groups — African Americans, Hispanics, Native Americans and other groups that are sometimes left out of studies for other reasons, such as those from lower socioeconomic groups or because they’re from rural communities.
That goal is being met quite nicely since we launched in May last year. Another goal is to have these participants be fully empowered as our partners. They’ll get back a lot of information about themselves and will contribute a lot about their medical circumstances, from their electronic medical records, various lab measures and, before too long, whole-genome sequences.
Any qualified researcher who is willing to sign a pledge to not try to identify the individuals will have access to the anonymized data.
Costello: Where do you see the greatest opportunity for the NIH to address the opioid crisis?
Collins: There are many. We are fortunate that Congress recognizes this national public health crisis. It also recognizes the role that the very best research could play in coming up with answers and has provided funding on top of what we’ve already been spending through the National Institute on Drug Abuse and National Institute of Neurological Disorders and Stroke. The $500 million a year Congress added gave us a chance to inspire new, bold efforts through the NIH HEAL (Helping to End Addiction Long-term) Initiative: Are there better ways to treat addiction or to manage overdose risk?
We also have a big project to develop, as quickly as possible, nonaddictive pain treatments as substitutes for opioids that we know are not a good answer for chronic pain. That includes not just drugs, but also devices and integrative medicine approaches.
Costello: The 10-year NIH initiative on the brain is in its fourth year. What are you most proud of?
Collins: I would pick the cell atlas of the brain. New technology that allows you to look at single cells enables us to really understand that there are, in fact, hundreds of different cell types in the brain, something that previously we didn’t appreciate.
Costello: How do you explain the value of basic biology research to the public, who may look at it and say, “Well, there’s no obvious connection to human health”?
Collins: Individual examples can readily make the case for the value of basic research.
We’re all excited about cancer immunotherapy, but that has come about only after decades of basic science trying to understand the immune system. We wouldn’t be where we are if not for investments in what seemed, at the time, pretty basic stuff. I don’t think anybody would have guessed we would end up having such a big impact on cancer. Maybe on something else, but cancer? Really?
Look at where we are with gene editing and all that that means, both for laboratory science but also, increasingly, in terms of cures we’re starting to see for conditions like sickle cell disease.
And look at the whole story of CRISPR/Cas9 and how that was revealed by the most fundamental kind of science — trying to understand how bacteria fight off their own viruses. It’s a great example of how investment in research that didn’t have any obvious clinical connection can turn out to be absolutely revolutionary.
Costello: Global collaboration is an increasingly important part of clinical and basic research, and academic institutions like Stanford Medicine work to strike the balance between collaboration and protecting intellectual property. How does the NIH approach this?
Collins: I am very troubled about the way in which the information about foreign influences has cast a dark cloud in the direction of individuals working in this country who were born in other parts of the world, and who are noble, upstanding, hardworking, conscientious, ethical people.
Chinese scientists are concerned that they are being looked at in a way that’s almost like racial profiling. That would be a terrible mistake in our country, where we welcome people who have lots to contribute.
On the other hand, we can’t simply ignore egregious instances where a few foreign scientists took advantage of their circumstances to misuse the peer review system, passing along confidential information to supporters in their nation of origin. Other instances include not disclosing in grant applications that they had significant financial support, and engaging in serious attempts to divert intellectual property to other countries that rightly belonged to the U.S. institution where they did the work.
I think those are very uncommon circumstances, but there’s enough of it going on that we had to alert our grantee institutions, which had largely not been aware of the risk, to have a look and ensure their own house was in order.
Costello: You still have a lab at the NIH. What draws you to do basic science research amid your significant responsibilities at the NIH?
Collins: One reason is it’s part of who I am. The opportunity to not just oversee what’s happening in the research community, but also to participate, at least in a small way, drives me to get up in the morning. It also helps me, as the NIH director, stay grounded in the realities of what research is all about.
My lab is working on epigenomics of Type 2 diabetes and on a rare disorder of premature aging, called progeria. The latter project is very much in the translational space. We’re hoping to initiate the third clinical trial in the next year or two with a very high-tech, sophisticated, RNA-based therapeutic.
Frankly, sometimes having a personal role in scientific research is good for my mental health. Being the head of the NIH, with all the administrative challenges and political issues that entails, can seem a little heavy at times. It’s great to run across to the lab and ask a scientist to show me some data.