In an Era of Misinformation, Does Science Stand a Chance?

JOEL BERVELL: My guest on this episode of The Dose is physician–scientist Dr. Francis Collins. Under his direction, the Human Genome Project produced the first finished sequence of the human DNA instruction book in 2003. From 2009 to 2021, Collins was the director of the U.S. National Institutes of Health, serving under three presidents. Following a year in the White House as the president’s acting science advisor, he returned to NIH to oversee a research laboratory as a distinguished investigator in the intramural program of the National Human Genome Research Institute. He has also worked with advocates in Congress to launch a bold initiative to eliminate hepatitis C in the United States and to help design a Genomic Centers of Excellence Program in Africa.

His contributions to science, medicine, and society have been recognized by the Presidential Medal of Freedom, the National Medal of Science, and the Templeton Prize. His most recent book is The Road to Wisdom: On Truth, Science, Faith, and Trust. Earlier this year, Dr. Collins and I shared a stage on a panel. It’s a true honor to bring him here for a deeper conversation. In fact, his work was part of the foundation for my own advocacy. I launched much of my social media presence by drawing on genomic research he pioneered to dispel race-based myths in medicine.

In that sense, Dr. Collins, you’ve been a mentor to me for a long time, long before this moment. Thank you so much for joining me here.

FRANCIS COLLINS: Well, I’m honored to join you. And I didn’t know about this connection that I might’ve had with you even before I had met you, so thanks. It’s a pleasure to be part of your program and I hope we can talk about stuff that people will find interesting because there’s a lot going on.

JOEL BERVELL: There’s a lot going on and absolutely. I mean, I was a molecular biology major, so your contributions have been pivotal to everything I’ve done throughout my life, and I want to start there. You’ve had such a remarkable career shaping science at the highest levels, leading the National Institutes of Health for 12 years, and maintaining a lab there until just February of this year. I want to start by talking about what you’re doing now and why.

FRANCIS COLLINS: Well, my departure from NIH after 32 years was not exactly the way I had imagined it happening. After January 20th, it became very difficult to do research at the NIH. Various restrictions were placed upon purchasing, doing any new experiments, or even speaking in public or submitting articles. And I found it was pretty untenable and was also made to feel very unwelcome. So I left on February 28th, and now here I find myself somewhat unexpectedly unemployed. So what to do? I deeply believe in the value of medical research. And I think the case supporting that is overwhelming in terms of lives saved, suffering reduced, people given a chance to have better health spans, not just life spans. But I also see that many of the projects that are in the spot of being able to make progress are now really having to slow down — universities where most of NIH-funded research goes on, and many of them also under attack and sustaining really serious threats about loss of support.

Young scientists who are our most important resource, the people who are going to make the next generation of breakthroughs, are really troubled about whether there is a path forward for them anymore. So what to do? I feel like I’ve got to contribute something here. I care so much about this and I have a bit of a track record of looking well, I think, with both parties and with leaders and all the branches of government. Maybe I could be a source of some kind of encouragement to get this remarkable engine of discovery running again. But my sense is that the real message has to come from people whose lives are affected.

So Joel, right now I’m working on trying to put together a story bank of hundreds of stories of patients whose lives have been greatly benefited in the past or at the present time by medical research, and who would like to tell you about that. Deaths from cancer dropped now by 25 percent over what they were a couple decades ago. HIV/AIDS is no longer a death sentence. Sickle cell disease has been cured by gene therapy. Cystic fibrosis, after 30 years of hard work that actually began with discovering the gene in my own lab back in 1989, now leading to this amazing drug breakthrough so that most people with cystic fibrosis can start thinking about retirement instead of about an early funeral. And we’re on this exponential curve of research potential. It’s the worst time to pull the plug on this or in a way restrict the engine. We got to do more for cancer, for Alzheimer’s, for diabetes, for kids with rare diseases that we might be able to cure. All of that hangs in the balance. And I guess, I’m a bit obsessed about trying to do something to help with that.

JOEL BERVELL: I absolutely love that. The idea of that story bank and bringing what’s abstract to make it concrete. What’s the format that this takes place in? Is it video? Is it audio? Is it an interview format? And how are the stories being captured?

FRANCIS COLLINS: It should be all of the above, but I think the most critical place is video and it’s short, punchy videos. I want to bank of at least a couple hundred of these one-minute, maybe one-and-a-half at the most, starting out in the first five or six seconds with, “Okay, I am so-and-so, I have cancer, but I am actually now in remission because of medical research. I am living proof.” And that sort of stops people in their tracks like, “Okay, I want to hear the rest of this one minute.” That, together with social influencers like you, maybe.

JOEL BERVELL: I’m in, you sold me already.

FRANCIS COLLINS: I had the opportunity to meet with 250 young people who are cancer survivors everywhere from age 15 to age 30, and many of them now in remission, but not sure the remission will last and counting on medical research to be one step ahead of whatever they need. And very alarmed to see that that enterprise might be slowing down. Those kinds of voices really can break through all the noise and actually wake us up and say, wait a minute, this is a truly good thing. This is not political. It is a noble enterprise to try to alleviate suffering and save lives. And by the way, also, it’s great for our economy, on top of that. The return on investment of government funding and medical research is somewhere between three and eightfold. So all of that, it’s a case that can basically make itself compelling, but I think it starts with a story. That’s what we respond to.

JOEL BERVELL: Absolutely. I think while data is important, it’s so important to have these stories that illuminate that data and why it matters. We as humans respond more to emotion, unfortunately, than we do to facts sometimes. And then I love also that you’re taking this to the social media format, meeting people where they’re at. Today, we have more data than ever before. Technology is accelerating the science, and I wonder how you see care. Is it keeping pace with capacity? We have to do better to keep people healthier? And then how does this also play into this need to stay connected to people when so many people lack science literacy right now today?

FRANCIS COLLINS: Yeah, there’s a lot to unpack there. I’m afraid we are not taking full advantage of the way in which our knowledge about health and disease has been exponentially expanding. The translation of that into everyday clinical care is slow and imperfect, oftentimes held up by various things like decisions about whether a particular new development is going to be reimbursed by third parties or not because of the way our system works. And sometimes that takes a decade or more before it actually settles in.

Give you a case in point, and I don’t know when this will get solved: I’m totally convinced at this point that all of us would benefit if we had our complete DNA sequence, our genome sequence, as part of our medical record. So that when something comes up in terms of advising you about how to stay healthy, that information is right there written into your own instruction book about what things you might be at higher or lower risk than somebody else. And you could individualize your health maintenance instead of doing the one-size-fits-all thing that people kind of ignore. And if you got sick and you needed a drug to be prescribed, there’s a hundred drugs now where the FDA label says, knowing this individual’s genetic predisposition to whether this drug is going to work or not is going to be really helpful in getting the right dose for the right person at the right time of the right drug. And we’re not using that information because it’s not available.

And some might say, well, it’s the cost. Well, come on. Yes, it used to be — that first human genome that took us 13 years to produce cost about $400 million. Now you can have your genome sequenced for about $200 and it can be done in a couple of days. So a lot less than an MRI scan that we seem to think is perfectly reasonable to spend money on. How many of us listening to this have had multiple MRI scans? I have. And the genome sequence, you just need to do it once, it’s there. Now you got to be careful about how to protect it in terms of privacy and not having it spill out in places it doesn’t belong. But there are ways to deal with it. But we are so slow in coming around to this because third parties will not pay for that. They want to have 10 years of evidence that this has actually changed outcomes.

I think that evidence is very compelling already in small scale and it shouldn’t require this kind of demonstration. We also have the fact that our health care system is broken in lots of ways and it does not reach people equivalently. We are a diverse population, and health disparities are quite real. And what zip code you were born in has more to do with how you’re going to do in terms of survival than your DNA.

JOEL BERVELL: Absolutely. Hearing you speak about both the potential for that whole-genome sequencing plus these disparities that still exists makes it clear just how much more science can offer to improve care. But alongside that promise, one thing that I think about a lot is a growing risk that’s happening right now, which is disinformation — that we can have all this information out there, but oftentimes it can be information that is wrong or that’s purposely leading people down an incorrect pathway. And we’re right now living in a disinformation ecosystem. Technology has created this capacity to spread information that is intentionally untrue, could be harmful, and is often spread with the aim of financially bettering bad actors. When we were on the panel together not so long ago, there’s a moment where you said, “At the moment, politics plus science has basically resulted in politics. The science gets lost along the way.” And I thought that was so poignant. How should we be addressing this as scientists, medical doctors, as just citizens of the world?

FRANCIS COLLINS: I agree, it’s a real crisis. There is so much information that’s flying around that is just plain wrong, and it’s hard sometimes to distinguish that. We need to develop our filters so that they’re better at identifying whether this is information we should trust or not. I write about all this in this book you mentioned at the beginning, The Road to Wisdom, which has a lot about this misinformation epidemic. And before we were so polarized, I think we were better at figuring out how do we decide who or what to trust? We have somehow lost the ability to see truth in unusual places, including from sources that we normally wouldn’t agree with. We’ve gone from thinking people that are sometimes misguided, maybe they’ll come around to thinking, no, they’re never going to come around. They’re evil.

And that is troubling to the deepest level of what’s happened to our society. So for misinformation for the general public, again, figure out how do you decide what information to accept. I think there are three things you ought to pay attention to. One is, does this source have competence? Have they done the work? Do they have evidence that they really have dug through the nuances and know the history? And if it’s a scientific issue, have they actually studied all the peer-reviewed literature and tried to assess, okay, which claims have held up over and over again and been reproducible? Do they have integrity or are there some funny things there in the background that you ought to be careful about?

And then the third one is, do they have humility? Are they willing to say when they made a mistake? Are they willing to say their boundaries of expertise are actually limited. If you don’t find those three things — the competence, the integrity, the humility — be careful. And don’t bring that particular claim into your own storehouse of information. Then it’ll be there and it’ll confuse you and misguide you.

JOEL BERVELL: Yeah. Well, everything you said is so poignant and so important. The things I would add too is I wish that we had more digital literacy classes. We need more of that critical thinking in today’s world, but I think we’re getting less of it. And for many students, they’ve never gotten it in the digital ecosystem at all. Making people more privy to jump into disinformation ecosystems.

FRANCIS COLLINS: That’s a really important comment. And I, sort of looking at my grandkids who are all in that phase where they’re also trying to develop what is their own level of critical thinking. And they spend a vast amount of time soaking up information without necessarily having the tools to sort through it.

JOEL BERVELL: Well, I will say even with all the noise and disinformation, the reality is that science has delivered breakthroughs that fundamentally have changed how we think about health. I think one of the clearest examples is the Human Genome Project, which I want to jump back to. You’ve said the driver for you in genomic research was an effort to foundationally shift the focus in health care away from treating sickness, to enhancing the understandings of what can keep us well, disease prevention. Can you talk about that original impulse you had and the way the Human Genome Project has evolved?

FRANCIS COLLINS: Sure. So I’m a doctor. I’m trained in internal medicine. I spent a lot of time earlier in my career taking care of very sick patients in hospitals and others that were chronically ill in clinic. And it was pretty clear that an awful lot of what I was seeing could have been prevented if we’d had the tools and the appropriate health behaviors to be able to implement to avoid terrible examples of heart disease or hypertension out of control, or even a lot of cancers that are due to things like smoking. And yet we weren’t doing much about that. We didn’t really have a health care system. We had a sick care system that really didn’t offer you much until you got sick. And that’s just all upside down. And I knew that a lot of the ways in which we could do a better job of prevention would have to take you beyond this one-size-fits-all approach to really understanding the individual. We’re all different. We have different inheritance, different DNA risks, but we have different health behaviors, different nutrition, different environmental exposures.

Wouldn’t you want to have all of those things folded together in a plan that was really going to focus on prevention? Of course you would. But we’re not going to get there if we don’t have the tools to do those kinds of measurements on a very large number of people. So you can begin to sort out what actually correlates. As a start, you’d want to have everybody’s genome sequenced as part of such a big cohort study, but you’d also want tools to do a better job of measuring how they’re making their own health decisions, what their nutrition is, what environmental exposures they have. So we now have that program, it’s called “All of Us.” You could be part of this, although it’s getting close to the point of being fully enrolled.

We have 880,000 Americans who have signed up for this effort over the last five or six years. I’m one of them. Basically you sign up to say, I want to be part of this. I will give you a blood sample where you can get some DNA and sequence my entire genome, and you give me that information back. I will undergo a physical exam and you can measure a lot of things about me in that blood sample, and I’m going to answer a lot of questionnaires about things that I’m doing as far as my health and maybe wear a Fitbit and I’ll allow you to collect that data as well. That’s been going on. Already of those 880,000 people, 600,000 of them have had their complete genomes obtained. The rest are coming along pretty soon. It’s the largest collection of complete genome sequences on Americans so far. And it’s all anonymized and then made available in what’s called a researcher workbench, where some 12,000 researchers are now trying to mine through this and figure out how do we keep people healthy.

Because most of the people enrolled in this are actually reasonably healthy. Some of them have chronic diseases. Some of them are younger and so far are fine. And so we’re following them prospectively. They also make their medical records available so we know what diagnoses they have, what medicines they’re taking, and we have the chance to see if something happens, what happened, and was there a way that we might’ve predicted that and avoided it. This is a dream that I had hoped to see come true. And you’ll get all the information back on yourself. You’re a partner in this enterprise and you deserve to know what we know, and you will.

JOEL BERVELL: Absolutely. And in that same vein, you’ve had, I said at the beginning, but you’ve had an extraordinary list of accomplishments, but there’s one that I don’t want to be overlooked. And that’s the fact that a little over a decade ago, after concerns arose about the publication of the genome of the HeLa cell line, cells that were taken from Henrietta Lacks. I talk about her a lot in my own account, and I actually have a video coming out pretty soon with her family.

FRANCIS COLLINS: Oh, really?

JOEL BERVELL: Yes. Yes. Her granddaughter, we did a great about HELA100 and the work that they’re doing there. But for those who don’t know, Henrietta Lacks is a Black woman. Her tissues were harvested without her consent in 1951. But you and other NIH leaders worked with the Lacks family to reach an agreement that both protected their privacy and allowed researchers controlled access to that genomic data. First, I want to say thank you for that because I think it’s really meaningful, especially when we look at the history of mistrust within the health care system. But can you talk about the meaning of that work and of that agreement?

FRANCIS COLLINS: That was one of the most powerful experiences I had my whole 12 years as NIH director. It was, of course, the case that this cell line was obtained from Henrietta back in 1951. At the time, there were really no guidelines about consent for such issues, which now in retrospect we think, “Oh, what were we thinking?” But that was the norm at that point. So a biopsy was taken of her cancer and a group that had been trying to see if it would be possible to grow human cells in the laboratory and having multiple failures succeeded with her cells. The cells that ultimately got called HeLa for Henrietta Lacks, they’re growing in my laboratory, my former laboratory right now. And that’s true of many laboratories around the world. These have been the kind of cells where we’ve made all kinds of amazing discoveries. They’ve been involved in multiple Nobel Prize work because they are the way in which we really understand a lot about how a human cell does what it does.

But of course, this was done in a fashion that in retrospect did not stand up to appropriate ethical norms, even though at the time it was. It became clear that along the way the source of these cells was made public by an investigator at Hopkins. So the Lacks family, descendants of Henrietta, kids and grandkids, then became identifiable. Now at the point where we were able to start sequencing entire genomes, there were lots of interest in sequencing various cell lines, and HeLa was one of those that was put forward.

And, in fact, a group in Germany sequenced that genome from HeLa cells and was purporting to publish a paper in it when it became clear that the family had no input to this and might potentially be at risk of having things about them revealed as blood relatives of Henrietta. So I got engaged at that point feeling like, “Whoa, wait a minute. This isn’t right.” We did manage to slow down any public release of that information, and there was another group that was also about to publish. And I reached out with help from people who knew them to the Lacks family and had the most amazing series of meetings in a conference room at Hopkins with multiple members of the family. And it was fascinating. They were both really troubled that this had happened and that their relative, Henrietta, had never really been recognized for her contribution. But also that now that it was known it was her, that they were at risk and hadn’t had the chance to have any input into this.

But they wanted the work to continue. They made that very clear. You might’ve thought they would say, “Okay, you got to stop. Nobody should be using these cells anymore.” Oh, no. They wanted those cells to be out there working. I think that’s something one of them said. So how would we do that? The conclusion that we reached was that the actual sequence of those cells ought not to be something that was just available to anybody who might use it in some way to discriminate against the family. It ought to be available to researchers who had a really good explanation of what they were going to do with it, who agreed not to use that in any way to contact Lacks family members. And who agreed to acknowledge that this was an important resource for them in whatever publication they came out with, and to publish all the data.

And that is what we did. We set up a review group who would look at the applications. Two members of the Lacks family were on that review group. And over the course of many years, I think by now probably approved 60 or 70 applications and rejected a few that didn’t meet that standard. And as a result, I think this close connection happened between medical researchers and the Lacks family who previously had been on very different sides of the issue. It doesn’t change the fact that maybe things shouldn’t have been done that way they were 70 years ago. But it was an effort to try to come back together and listen to each other and try to come up with a fair judgment about the best way for research to go forward but the family’s wishes to be attended to.

JOEL BERVELL: Thank you for doing that. I don’t think it was . . . For many people, they may not have even thought that, but you took it upon yourself to reach out to make sure that we understood how ethics and equity are inseparable from scientific progress. Looking more broadly, what discoveries or directions from the Human Genome Project have surprised you in ways that you may not have anticipated at the beginning?

FRANCIS COLLINS: I didn’t realize how profound this would be for cancer, for the ways in which we now manage cancer and in certain instances prevent it. I mean, we knew that cancer was a disease of the genome. We knew that a good cell can go bad if it acquires a mutation that causes it to grow when it should have stopped. But the idea that that could be actually brought into the standard of clinical care, which it now is in many fairly advanced cancer centers, was pretty astounding. Most people now, if you go to a cancer center and have a new diagnosis of cancer, they will want a bit of that tumor. And they will sequence its genome and compare that to your DNA sequence in your blood, which is what you were born with, and look to see what happened here. What is the misspelling that’s popped into an oncogene or a tumor suppressor gene that’s causing those cells not to have the appropriate breaks on their growth behavior?

And very importantly, that’s not just an idle academic question, that may be the best predictor about how to pick the right intervention that’s going to help you stop that cancer and maybe cure that patient. Most of the big developments in new drugs for cancer have come about because of genomics, because we’ve discovered, oh, that gene seems to get mutated fairly often. That’s something we could target with a drug. I have friends who have lung cancer that we used to think was the worst kind of thing you could have. These are nonsmokers, they developed this lung cancer. Very often, they have a specific mutation in a gene called eGFR, and there’s a very effective drug that goes after that. I have another friend who has leukemia, diagnosed 20 years ago, doing fine because his leukemia also has a gene that’s activated, a tyrosine kinase, for which there’s a very effective drug that seems to basically stop those cells from growing and allows him to live a normal life.

So genomics is just totally revolutionized our understanding of cancer. For me personally, that might even matter. I have prostate cancer. I’m fortunate at the moment, after a radical prostatectomy, to be cancer-free, but you’re never sure about that. And if it happens to recur, I already know, from the way in which they analyzed the original tumor, of a possible drug target that might be worth pursuing. Right now, I hope I don’t need it, but if I do, there’s going to be something there. I wouldn’t really imagine this would be so dramatically transforming cancer care when we first sequenced that first genome.

JOEL BERVELL: Yes. Well, thank you and congratulations. That’s wonderful news, hearing that you’re cancer-free after your experience of prostate cancer. But also as you mentioned, some of the surprises that you’ve described when it comes to cancer treatments. So just how far-reaching the Human Genome Project has been. But another legacy is the recognition that not all communities have been equally represented in genomics research. In 2013, you launched Human Heredity and Health in Africa to help address that. Can you talk about the status of that initiative and any challenges you faced with it?

FRANCIS COLLINS: I’d love to. I first went to Africa as a volunteer, a missionary physician, to Nigeria. That was about 35 years ago, and it was fascinating and inspiring and the people are so courageous, and smart, and they take things in stride that we spoiled Americans would never be able to deal with. But I also saw, boy, there’s a lot of research opportunities here that aren’t being pursued. I was in a little hospital in Nigeria. There was a fair amount of diabetes, but the diabetes was not in people who were obese because not very many people were obese in that part of the world. And it behaved a little differently in terms of the way in which the disease progressed, but nobody was working on it. So I started out thinking, “Well, maybe we should start a little project on diabetes in Nigeria and Ghana.” And got some funds for that from NIH. And it actually started to look pretty successful.

But then it was clear, well, that’s not good enough. So when I became NIH director, it was like, what can we do about global health that we aren’t really pursuing? And for a geneticist, Africa is the place where you really want to study everything because that’s where we all came from. That’s the cradle of humanity. That also is the place where the greatest amount of genetic diversity still exists, because as people migrated out of Africa, they brought some of that with them. So with a lot of conversation with a lot of people and a big help from the Wellcome Trust in the U.K. who agreed to be a partner with NIH on this, we started this program of H3Africa, Human Health and Heredity in Africa. Invited institutions across the continent to apply to be part of this, rigorously reviewed their proposals, and then set up this network that brought together institutions that hadn’t really had those links before.

Now, Joel, it’s interesting, many of these institutions in Africa had a North–South collaboration. Maybe they were working with Harvard, or Ohio State, or University of Oxford. But almost none of them had been South–South collaborations with each other. We made that happen with H3Africa by building better internet connections between them, sharing faculty and educational opportunities, and building research projects that involved just more than one institution. And what was possible there in terms of expanding technology capabilities and making some really new insights, obviously, about infectious disease because that is still a scourge of many of those countries, but also noncommunicable diseases. What’s really happening with cancer and heart disease in these different environments, and what’s the difference in the genetic contributions? Oh, yeah, diabetes. I think we figured out something about why diabetes in Nigeria is a little different because the genetic factors are a little different.

So all of that over the course of 10 years, I would say, was just an unparalleled success. And it trained a whole bunch of investigators who otherwise might’ve gotten frustrated and just left to go somewhere else. The brain drain, which has been doing so much harm to Africa, started to get reversed, but it was a 10-year program and now it needs to go on. So the big push now is to try to develop an even bolder Centers of Excellence Program across Africa. It will focus on pandemic preparedness. We know that’s critical. And a lot of that’s genomics, that’s how you know whether you’ve got a pathogen, sequence its genome. But it’s also going to be about precision health, prevention, as well as management of chronic disease.

And a lot of it is going to be about workforce development. Africa has the largest cohort of young people by far on the planet. Incredible talent, and also talent that if it’s not given a chance to pursue something is going to be restless. So this is on the business plan scale, pretty far advanced, has a little bit of seed money, looking now for possible big-time support. It would take about 120 million dollars a year to do this right. That would be about 30 of these centers. And there are some philanthropists very interested in this and looking to see if we could get it off the ground in the next year or two. And I got to say, very importantly, this whole project, the Centers of Excellence, is not designed by me. It’s designed by African scientists who can see what the African needs are and what the workforce is going to need to do in order to achieve those. That’s the way it ought to be. We’ve had too much colonialism in Africa. This is not that.

JOEL BERVELL: Yeah. Oh, I absolutely love that. And I think you’ve previously called this the African moonshot when you’re envisioning —

FRANCIS COLLINS: Yeah.

JOEL BERVELL: Yes, this network of building and training capacity among African scientists and developing common standards for use across, as you mentioned, not the North–South, but South–South across the continent. And I actually don’t know if we talked about this, but my family’s from Ghana, and so we go back every single year. But I’m so curious, how might some of these efforts make an impact on people living in the diaspora?

FRANCIS COLLINS: Well, there’s good examples of how what we learn in Africa has enormous consequences for the diaspora as well. There’s this new observation about kidney disease that I think is pretty profound. If you walk into a dialysis unit in the United States and you look around, you will see there’s an awful lot of Black people who are there with basically complete kidney failure where the dialysis is keeping them alive, hoping that a transplant will become available. But why is this so disproportionate? And I think if you’d asked somebody 10 years ago, they’d say, “Well, it’s probably our health care system and the fact that Black people are particularly unlikely to get the care they need for hypertension or diabetes. And so that was going to be why their kidneys failed.” And there’s certainly some of that going on. But it turns out there’s this other story, and it’s a genetic story.

It’s about a gene called APOL1, which we all have. But if you have a variant in APOL1, and you live in West Africa, you’re protected against sleeping sickness. And sleeping sickness, having taken care of people with that when I volunteered there, is a pretty horrible disease for which many people don’t survive. So it’s this, over the course of many generations, a selection has been happening for those variants in APOL1 that are protective. But guess what? Those same variants also predispose people to kidney failure. So if you’re one of the 15 percent of African Americans, you are at risk of that kidney failure. And that’s now not just a observation about, well, here’s somebody who should be particularly watched.

There is now a clinical trial for a small-molecule drug. The phase 1 trial looked pretty promising. The larger trial — we’ll see what happens — might actually be what we need. If you know you’re a genetic risk, get on this particular intervention and you don’t end up in the dialysis unit. Wouldn’t that be a good thing? And much of this really comes about because of studying genetics in Africa and finding these APOL1 variants and wondering what else they do.

JOEL BERVELL: Wow. I may have to steal that for a TikTok video because I think —

FRANCIS COLLINS: Do it.

JOEL BERVELL: — I knew about the APOL1, but I did not realize the connection to African sleeping sickness. But I always often talk about sickle cell being connected to malaria. It’s the same idea of genetic . . .

FRANCIS COLLINS: Same idea.

JOEL BERVELL: . . . yeah, genetic protections that were built over time that we may no longer need now, but have offered us protection in the past.

FRANCIS COLLINS: Exactly.

JOEL BERVELL: Well, Dr. Collins, I want to say thank you so much. Thank you for everything we’ve talked about, from your current lab work to the clinical promise of whole-genome sequencing, whether care is keeping pace with technology. The challenge of misinformation and defending trust, the Human Genome Project, Henrietta Lacks: we talked about so much today. Truly being here and having the opportunity to speak to you feels like a full circle moment for me. Like I mentioned, I was a microbiology major in college, and I was reading so much of your research, seeing so much of the incredible work you were doing with the Human Genome Project. That it’s what continued to inspire me to enter into medicine in the first place. And I’m just so thankful for you for taking the time to be here with us today.

FRANCIS COLLINS: Well, I appreciate the chance to chat with you. Great to talk to you.

JOEL BERVELL: You too.

This episode of The Dose was produced by Jody Becker, Mickey Kapper, and Naomi Leibowitz. Special thanks to Barry Scholl for editing, Jen Wilson and Rose Wong for art and design, and Paul Frame for web support. Our theme music is “Arizona Moon” by Blue Dot Sessions. If you want to check us out online, visit thedose.show. There you’ll be able to learn more about today’s episode and explore other resources. That’s it for The Dose. I’m Joel Bervell, and thank you for listening.