Dr. Francis Collins is a physician and geneticist who helped lead the research of the Human Genome Project, which by 2003 had completed the first finished sequence of the human DNA instruction book. He has published numerous books, including The Language of God, The Language of Life, and The Language of Science and Faith. In 2009, he became director of the National Institutes of Health (NIH), the US government’s premier biomedical research organization. This past August, Collins spoke with the HIR on his work at NIH and his views on some of the pressing health problems facing the world.

NIH has supported numerous studies on the Zika virus, yet most of Zika’s impact so far has been in Latin America. Has Zika’s spread outside of the United States had any impact on NIH’s ability to research or respond to it?

Besides Zika’s spread among our Latin American neighbors, we have been very concerned about the rapid spread of mosquitoes carrying the virus into Puerto Rico, with thousands becoming infected. If the virus only caused rash and fever, it would probably not attract a lot of attention. It’s the devastating impact of the birth defects that it causes, particularly those affecting the brain, that makes the disease a tragedy in need of rapid attention. So, NIH is out in front of the effort to develop a vaccine, as well as identify therapeutics for people already infected.

NIH-supported vaccine research has not been slowed by the fact that the Zika epidemic has occurred in only a limited way in the continental United States. The task has been to create an appropriate vector to trigger an immune response against the virus. The leading vaccine at the moment is DNA-based; it has worked for other related viruses and seems to look really good for being effective against Zika. However, the location of our research will matter when we are ready to launch a phase 2-B trial around January 2017 to determine if the vaccine works. At that time, researchers will need to offer it to volunteers living in an area where Zika is continuing to spread.

One way the US Centers for Disease Control and Prevention responded to Zika was by going online and creating a GitHub repository to share data about the virus. How do you think the Internet has made medical research more open and collaborative, and how could it still be better used for medical research?

The Internet has been critical. One of NIH’s highest priorities is to push the agenda for data release and access. Researchers working on Zika have been voluntarily posting their data almost daily. That’s really the right model. NIH is moving to create a “data commons” where data produced by NIH-supported researchers has a place where it can land and be tagged appropriately. For any large-scale research project that generates data that a lot of people will want to use, we are increasingly making it a condition of the grant award that such data has to be released—and released quickly.  

This goes back to the Human Genome Project, which pioneered the idea that, if you’re a scientist doing a project of this scale and scope, you’re obligated to share the data. During that project, we did data releases every 24 hours, so that anybody who was interested in it had an opportunity to start working with the new data. It has been a real culture change for biomedical researchers to get into this mindset, to realize that it’s not about holding onto everything until you publish or sometimes even holding onto the data even after you publish. NIH will not allow that anymore. We are empowering everybody by providing data access as soon as possible.

It has been a real culture change for biomedical researchers to get into this mindset, to realize that it’s not about holding onto everything until you publish or sometimes even holding onto the data even after you publish.

The same goes for clinical trial data, as well?

If you look back, you will find that some NIH-funded clinical trials have concluded, but that researchers leading them have not published the results. Sometimes the results never get published. People have volunteered their time to take part in clinical trials, maybe even taking on some risks. Trial data ought to be available so knowledge can be advanced. To address this problem, NIH’s parent agency, the US Department of Health and Human Services (HHS), recently issued a final rule that requires all clinical trials involving US Food and Drug Administration-regulated drug, biological, and device products to register and post summary results information to ClinicalTrials.gov within 12 months after collecting the last data point. In addition, NIH issued a policy to apply those rules to all NIH-funded trials. The new HHS rule and NIH policy give us a framework to say to institutions, “unless you make sure that data gets put into an appropriate database in a timely fashion, we’re going to hold funding not just for that grant, but for every grant to your institution.” Compliance with NIH’s expectation on data release is actually getting much better, but it’s still not good enough.

Recent research has shown large regional variations in diseases and appropriate medical responses. To tackle ever more complex health problems, do you think major research institutions need to look more globally, conduct research in a wider range of places, or partner with more labs overseas?

All of the above. In medical research, I think we’ve moved beyond a narrow view of health, and have really begun to consider health in a global context. More and more Americans are realizing that if health is imperfect in one part of the world, that’s a problem for all of us. Diseases know no borders. Anybody who’s been involved in healthcare in a low-income country is very affected by it and becomes motivated to try to do something for those who have a lot fewer resources than we do.

US institutions that have talent and resources are increasingly interested in pursuing global health issues. Because the money that we allocate comes from American taxpayers, Congress established a requirement that NIH’s funding cannot be spent outside the United States unless it’s for a project that couldn’t be done within our borders. But if you’re trying to figure out whether your new vaccine for malaria works, that’s not something you’re going to learn in the United States, so it’s entirely justified that we do such research in other countries.

We also need to move away from the idea that countries with higher average incomes are better able to do research for countries with lower incomes. We need to empower institutions in low-income countries to build their own capacity to do research. That’s not how it has worked in the past. Often, the grant for research in sub-Saharan Africa would go to a US or UK institution with a subcontract to an African institution to support research in the country. The involvement of the African institution was rudimentary. That’s not the way to build capacity.

How can that capacity be built?

We have been trying to change the paradigm for building research capacity in Africa by coming up with different models to fund African investigators directly and to build networks in sub-Saharan Africa between universities. We have a program called the Medical Education Partnership Initiative (MEPI), which is jointly funded by NIH and the US President’s Emergency Plan for AIDS Relief (PEPFAR). At MEPI’s first meeting, there were heads of medical education at medical schools from 15 different countries in sub-Saharan Africa. Almost every one of those schools had a north-south arrangement with some university in Europe or the United States, but they had no connections to each other. At this meeting, they were getting a chance to meet with each other. It was electric to see that playing out, because they were quickly exchanging ideas. Since that meeting, it has become a very different environment. These institutions have figured out how to tighten up their administrative supports to be effective grant recipients.

Another capacity-building project is Human Heredity and Health in Africa (H3Africa), which NIH funds jointly with the Wellcome Trust. By working together to understand the genomic and environmental determinants of common, non-communicable diseases, the H3Africa research consortium has made fantastic progress in a space of five years. All H3Africa grants go to African investigators, not to US, UK, or European institutions. Africans running research overseen by Africans—this is where we need to go.

During the Cold War, NASA received a lot of attention as the US player in the “space race.” Today, with aging populations and growing political tensions, do you think we’re on a path toward a sort of “health race”?

A health race would be fine as long as it’s a race we do together! Our goal should be to win against disease, not compete against each other. You can certainly see the evidence of increasing international collaborations on projects like cancer. Take, for instance, the effort called The Cancer Genome Atlas to define the common genetic mistakes in cancer cells. You would want to know those genetic mistakes not just in cancers that occur in the United States, but around the world. From this international collaboration came the International Cancer Genome Consortium. Some countries have not done a lot of genomics research yet, but they have a lot of cancer, and a different spectrum of disease than we have in the United States. It’s really valuable to everybody to know what happens in those cancers. So, this “racing together” helps us figure out what is going on in all cancers, to better understand what driving factors are genetic and what are environmental, and what we can do about it.

Ten years ago, we knew maybe one or two genetic contributors, and now we have more than 80. The pace of scientific discovery is rocketing forward.

You wrote in The Language of Life that “the landscape [of genetics] is undergoing rapid change,” with this ability to make better predictions about risks of future illnesses. How would you evaluate that landscape now? Do you think the pace of change has slowed since your work on the Human Genome Project?

It certainly has not slowed. As just one example, in August 2016, Nature published the most extensive genomic architecture analysis of type II diabetes ever, covering a complete genome analysis of almost 140,000 people all over the world. My own research lab contributed to this work. The manuscript lays out a lot of things we didn’t know before in terms of the genetic risk factors for type II diabetes, which affects almost 10 percent of the world population and is increasing. Many of these risk factors identified potential drug targets that we didn’t know about before. Ten years ago, we knew maybe one or two genetic contributors, and now we have more than 80. The pace of scientific discovery is rocketing forward.

The challenge is in translating this sort of rigorous basic science analysis into preventing disease, or treating disease if it happens. Let me just state the obvious: the human body is incredibly complicated and we are still at an early stage in understanding those complexities. Basic researchers work hard to derive experimental information that looks actionable for medical purposes, but often the human interventions don’t turn out the way you expected. That’s why really rigorous clinical trials are so important, and those take time. There’s no question that from a scientific standpoint, the transformation of biomedical research by genomic technology has been absolutely profound. However, in terms of what happens when you go to your doctor, the transformation has been only modest. But it’s coming!

The HIR recently interviewed Rabbi Jonathan Sacks, who argued that “science tells us how but not why,” “technology gives us power, but cannot guide us as to how to use that power,” and “religion has returned because it is hard to live without meaning.” In your view, what kind of meaning do you think people should get out of scientific research today?

Science provides powerful access to knowledge about how life works, and that’s incredibly satisfying as you learn answers to mysteries that have vexed humanity for all time. But it doesn’t necessarily answer the really big questions of “Why am I here?” and “What’s the meaning of my life?” Science is not well suited to provide answers there. Those are questions of widespread human interest. If the view is taken that the only questions worth asking are scientific, that’s called “philosophical naturalism” or “scientism.” Supporters of that view essentially say “matter, energy, and natural laws are all there is, and there’s nothing more.” But I think most people are curious about questions that go beyond where science can take us, such as “Why is there something instead of nothing?” or “What is the meaning of beauty?” To wrestle with those, you need other approaches, like philosophy and theology.

Discussions about science and its limits often feature extreme voices. On one end, some commentators are of the persuasion that science has rendered all other approaches obsolete—so they argue aggressively that considering a spiritual worldview is just a waste of time. At the other end, some choose to challenge scientific conclusions because of a perceived disagreement with a particular reading of some sacred text, although those sacred texts often are full of uncertainties of interpretation that people have debated for centuries. Most people, I think, are somewhere in the middle. That’s certainly where I am. And I’m with Rabbi Sacks on this—the middle makes life more interesting.