A journalist by training, Meline Toumani shocked friends and family by moving to Turkey and embarking on a journey to understand a people and a country she'd been taught were the enemy. The result is "There Was and There Was Not," part political history, part deeply personal memoir.
Director Francis Collins and the NIH are undertaking several major initiatives, including imaging the brain, developing a universal flu vaccine, and advancing personalized medicine. But Dr. Collins warns the sequester’s across-the-board cuts threaten these and other crucial public-health programs and preparedness. Prior to heading the NIH, he led the Human Genome Project in mapping the sequence of human genes. He also explores the relationship between religion and science in several bestselling books. NIH Director Francis Collins joins us in studio.
- Francis Collins Director, National Institutes of Health (NIH); author, "The Language of God: A Scientist Presents Evidence for Belief" and "The Language of Life: DNA and the Revolution in Personalized Medicine."
NIH Director Plays “The Sequester Blues”
The song was written for the winner of the first annual Lurie Prize in Biomedical Sciences, Dr. Ruslan M. Medzhitov, for his ground-breaking work exploring the immune system.
Why It’s So Hard For Scientists To Believe In God
Some scientists see religion as a threat to the scientific method that should be resisted. But faith “is really asking a different set of questions,” says NIH Director Francis Collins.
MR. KOJO NNAMDIWhen Francis Collins took over as director of the National Institutes of Health, he arrived with a long track record of tackling some of the more vexing questions in human genetics, leading the Human Genome Project which mapped our complete gene sequence, helping discover genetic mutations behind cystic fibrosis and Huntington's disease while engaging with deeper theological questions, bestselling books about religious faith with scientific inquiry.
MR. KOJO NNAMDINow as director of the largest biomedical research organization in the world, Collins is steering new ambitious initiatives to better understand the human brain and find a universal flu vaccine. But he also finds himself tackling a different uniquely vexing kind of riddle, how to navigate the practical and political challenges of sequestration and keep the lights on for thousands of researchers and laboratories around the country. He joins us in studio.
MR. KOJO NNAMDIFrancis Collins is the director of the National Institutes of Health. Previously as I mentioned, he led the Human Genome Project. He's the author of the book "The Language of God: A Scientist Presents Evidence for Belief" and the book "The Language of Life: DNA and the Revolution and Personalized Medicine." He was awarded the Presidential Medal of Freedom and the National Medal of Science for his work in genetics. You can join the conversation by calling 800-433-8850. Are you concerned about what the sequester means for our ability to respond to public health threats, 800-433-8850? Francis Collins, thank you so much for joining us.
DR. FRANCIS COLLINSGreat to be with you, Kojo. I'm a big fan of your show.
NNAMDIGlad you could join us. Most of us know something about the National Institutes of Health but you probably have a sense of its scope. Can you talk about the range of research the NIH supports?
COLLINSIt's totally breathtaking. Everything from very basic investigations about how life works all the way through what you'd call translational science to clinical trials to try out new interventions for prevention or treatment of diseases like cancer or heart disease, diabetes. And it's a rather phenomenal track record when you look at what's happened over the last few decades with deaths from heart attack and stroke down by more than 60 percent in the last 30 or 40 years, death from cancer now falling about 1 percent per year.
COLLINSAnd I promise that they may fall even faster with some of the remarkable discoveries that are happening right now about cancer and what causes a good cell to go bad. So we are on a roll. What you've seen in the past is encouraging. What we see in front of us is breathtaking. And it's a real privilege for me to have a chance to stand at the helm of this...
NNAMDINot to mention an HIV infection no longer being the death sentence that it once was.
COLLINSWell, indeed. What a wonderful triumph that has been. Somebody now diagnosed as HIC positive can expect to lead almost a normal lifespan, as long as they have access to those antiretroviral therapies.
NNAMDIOnce of the biggest initiatives the NIH is undertaking right now is the brain initiative. Tell us about that.
COLLINSI'm very excited about this. It is finally time, it seems, to marshal all of the expertise of nanotechnologists, of neuroscientists, of computer scientists and a wide variety of other experts to see whether we can really figure out how the circuits in the brain do the amazing things that they do. How is it that when I decide to move my arm, it actually works? And how is it that when I have a visional experience where something comes across my vision, I can interpret it?
COLLINSAnd how about memories, Kojo? How is it that we manage to lay those down and then usually retrieve them when we're looking for them? We really don't understand that stuff. And we are perched on the brink of a time where with an appropriate organized effort over the next decade or so, we should be able to begin to answer those questions. And the consequences of that for autism, for schizophrenia, for Alzheimer's disease, for a traumatic brain injury, for epilepsy, all these conditions where we need better treatments. This is the foundation we need that we haven't yet had.
NNAMDIWhy is the brain still such a challenge for scientists and what are some advances that have made this possible?
COLLINSThe brain is the most complicated biological structure in the known universe. It's breathtaking when you image what your brain is doing every 30 seconds just in terms of all the information you have to process. And so some people have wondered, are our brains complicated enough to understand our brains? I think they are but we're going to need some help from excellent science and a lot of data analysis. This is a big data problem, to be sure.
COLLINSSome of the advances, we now have the ability to be able to record, not just from one neuron, one brain cell at a time, but a few hundred. If we could ratchet that up to a million or so, we could really begin to understand how circuits work. We have the ability also in experimental systems to be able to turn on particular neurons by shining light on them, which is pretty cool. We have the ability in humans to use imaging approaches, using MRI and pet scan that are increasingly sophisticated and allow us to see what's going on in the brain in somebody who's thinking about a particular issue or experiencing a particular sensory kind of input.
NNAMDIOur guest is Francis Collins. He is the director of the National Institutes of Health. We're inviting your calls at 800-433-8850, if you have questions or comments for the director. There's another area the NIH is investing in heavily. You mentioned big data before. What's the idea behind the Big Data to Knowledge Centers of Excellence?
COLLINSWell, biology has emerged as a producer, a consumer. And in need of analyzing big data we are no longer sort of falling behind the high energy physicists of the cosmologists in this arena. We have earned respect now. We're independent bytes and beyond. And it's going to be a very important part of biology to put together the kinds of centers that will be able to not just collect that data but figure out how to analyze it and make sense out of it.
COLLINSAnd whether that's from genomics where we are able now to sequence DNA at prodigious rates and very low costs, or from imaging or from electronic health records. Or better yet, a combination of all those things to figure out important answers to problems in human medicine. Big data is a time that has come and we think of it as data science. And at NIH this is going to be a major initiative in the next few years, even in a difficult budget time.
NNAMDIHow would that affect research?
COLLINSWell, researchers -- I would say today if you're involved in biomedical research, if you don't have a familiarity with computational biology, you're going to fall behind. Because the idea of simple experiments with simple analog outputs no longer really is the way that things get discovered. We deal with huge datasets and we push very hard, Kojo, to be sure that those are publicly accessible so that anybody with a good idea can start to work on understanding those datasets.
COLLINSWhether it's gene expression or how it is that genes turn on or off at a particular time in a particular organ. Or whether it's trying to figure out how it is that some particular very large dataset of medical records could give us insight. Anybody who wants to work in biology and medicine needs to have a big data kind of attitude. Otherwise we're not going to make the most of this current revolution.
NNAMDIHow has that changed since you were say in undergraduate school?
COLLINSOh, drastically. So I think when I was an undergraduate -- actually, I was an undergraduate in physical chemistry so I was kind of into physics, chemistry and data issues. But biology was pretty descriptive for the most part at that point. And then a bunch of things happened in the course, particularly the last ten years. The genomics revolution is a big part of that but not the only part. I mentioned the brain initiative. We're going to be able to start making recordings of millions of neurons at one time in a living organism.
COLLINSImagine trying to process all that data and make sense out of it. That's going to require really sophisticated people and very impressive algorithms and computers.
NNAMDIAnd so far the conversation we've had has been about what we've accomplished and the potential that we have before us. But let's talk about the reality that we're facing today. The across-the-board cuts mandated by the sequester are hitting the NIH hard. Can you talk about how much you've had to cut and what that has meant for research funded by the NIH?
COLLINSWell, Kojo, that's the paradoxical part of my daily existence. Science, particularly biomedical science has never been at a more exciting point than we are right now. But the support for that science historically has never been as threatened as it is right now. We, because of the sequester at NIH, lost $1.6 billion that would've gone to medical research supporting investigators all across this country in our best universities and medical centers. That means there are about 700 grants that had already been reviewed and considered to be in the top 20 percent or maybe the top 17 percent that are not going to get supported because the money is now not there.
COLLINSWhich of those might have been the next breakthrough in cancer? Which of those might have started the career of a young investigator who would go on to win the Nobel Prize? We'll never know. That's gone. And in the future doesn't look particularly bright right now unless something really wonderful happens between now and October 1, the sequester looks as if it will endure for at least a few more months. And more damage will get done to this remarkable enterprise. It's really heartbreaking.
NNAMDIYou have concerns about specific research that could be affected, including for example, work on developing a universal flu vaccine. Can you explain?
COLLINSWell, here's another very exciting scientific opportunity. All of us who sign up for our flu shot every year wish that we didn't have to do that. Why can't we come up with a vaccine that actually works for all influenzas? Until recently that seemed like science fiction but no more. Researchers have figured out how to convince the human immune system to go after the part of the flu virus that doesn't vary from year to year. And it's also the part of the flu virus that doesn't vary even in some of those scary avian epidemics that we keep hearing about potentially coming out of Southeast Asia or other places.
COLLINSWe are within a few years of being able to actually have such a universal flu vaccine as a reality. But we're going more slowly than I would wish we could because of the constraint on resources. And I hope that in the meantime we don't encounter a new pandemic for which such a vaccine would have been life saving for many people because we're not moving as fast as we could.
NNAMDIHow does one go about building a universal flu vaccine?
COLLINSOh, it's a great story. Basically you have to know something about the structure of the flu virus. And on its surface is this protein called hemagglutinin, which -- it's sort of shaped like a mushroom. And the top of the mushroom, the cap is what the immune system usually sees and that's the part that changes from year to year, which is why you have to keep making a new vaccine every year. But the stem of that mushroom is constant from virus to virus, season after season, all influenzas. You have to convince the human immune system to see that.
COLLINSAnd that's a clever scheme which is now being figured out about how to prepare a vaccine that triggers the immune system to go for that particular part of the virus and not the part that it normally would do so. But that's already in phase one clinical trials in humans. We are on the path. And I would not have been able to say that, nor would Tony Fouchi (sp?) my great expert in infectious disease -- excuse me -- even five years ago.
NNAMDIYou know, there are people who are saying, look this picture you're painting of gloom and doom does not really reflect the reality of what's going on in the federal government. Yes, sequestration may be a blunt instrument but there is fat in virtually every government agency that can be cut. What would you respond to that in terms of -- how would you respond to that in terms of the National Institutes of Health?
COLLINSWell, I wish somebody who would say that about NIH would come and spend a day with me. The fact is that we are facing a pretty difficult circumstance in that since 2003, the budget for biomedical research has actually been losing ground. So even before sequester, we had already lost almost 20 percent of our purchasing power for medical research. And sequester added another 5 or 6 percent to that. So it's been not just an overnight problem. It's a long trend over a decade.
COLLINSThe consequence to that is an investigator out there who has a great idea about research now has less than one chance in six, if they come to us, that we're going to be able to support it. And that's where most biomedical research in academic centers comes from these days. It's from the NIH support. People are getting very discouraged. A survey just issued last week by the American Society of Biochemistry and Molecular Biology points out something like 18 percent of the people they talk to are thinking of moving to another country because they're just not sure they're going to be able to live out their dreams here.
COLLINSAnd many of them are talking about people they've had to let go or grants they've not been able to get funded or how they have to spend now 80 percent of their time just writing and rewriting those grants that get turned away.
NNAMDI800-433-8850 is our number. Are you concerned about what the sequester means for our ability to respond to public health threats like a pandemic? Give us a call, 800-433-8850. Or if you don't see a problem you can call. Also you can send email to firstname.lastname@example.org or send us a Tweet at kojoshow. I guess people should know that more than 80 percent of the NIH budget funds research grants...
NNAMDI...at some 2500 universities.
COLLINSIn all 50 states. That's what we do. We're not just a bunch of buildings in Bethesda, Md., although we do great research there too in our intramural program. But most of the money goes out there to all of those bright, capable, visionary scientists who are trying to push back those frontiers and lead us to new ways to prevent and cure disease.
NNAMDIWhat do you expect down the line if sequestration continues?
COLLINSI'm really quite sobered by that. I mean, we are doing everything we can, even in the face of very difficult budget circumstances, to look for new innovative opportunities. Like this brain initiative we were talking about or big data or a new push on Alzheimer's disease, which is such a compelling need right now, with also some great science moving forward. But if we lose this youngest generation of scientists who are increasingly disheartened, they're not going to come back just because things get a little better in a few years.
COLLINSWe are on the brink, I think, of really having a circumstance that is going to be very hard for the United States to fully recover from. And the rest of the world, meanwhile, has read our playbook of success over the last 50 years. And they're increasing their support for medical research, which is great but why are we sort of stepping away from our leadership position just at the point when things are so exciting.
NNAMDIIndeed, beyond the effects of the sequester, as you've been pointing out, the U.S. invests more in total dollars in research and development than any other country in the world. But, in fact, for the past decade or so we have not kept up with inflation when it comes to scientific research.
COLLINSThat's correct. And actually, if you look at China in the next five years, they're going to spend more dollars on biotechnology research than the United States. I'm talking real dollars, not just a percent of GDP.
NNAMDIYou have been a scientist applying for government grants yourself. Now you run an agency that awards grants. You've said that a great investigator has a one in six chance of having his or her idea funded. Can you talk a little bit about serendipity and discovery? It seems like you can't really predict at the outset which ideas will really work to tackle our most vexing scientific challenges.
COLLINSThat's absolutely true. And if we only funded the projects that had guaranteed outcomes, we'd be missing out some of the most exciting innovative stuff. And our goal is to be sure -- we're encouraging people to have some really bold, slightly whacky ideas because sometimes that's where the big breakthroughs occur. When things are so tight, it's increasingly difficult to encourage people to be innovative. But we have to. That's our future.
NNAMDIIt's my understanding that you have visited several members of congress explaining what sequestration is doing to the NIH. What kinds of responses have you been getting?
COLLINSI've met with more than 200 members of congress in the last couple of years from both parties and both Houses. And I would say every one of those meetings has gone well. This case is so compelling, both in terms of its advance for medical health, but also for the economy. One of the best things we can do is to actually support medical research in terms of helping our economy get back on its feet. So everybody seems to agree this is important. It's just how do we get it done in the face of a difficult national fiscal crisis.
NNAMDIMaybe you might want to employ a different tactic when you talk to the members of congress about exactly what sequestration is doing because members of congress seem to like things in simple albeit, oh, harmonious ways of telling them. So if maybe you could put the message in a song, maybe a song called "Sequester Blues." Can you try that for us?
COLLINSWow, what an interesting idea. There just happens to be a guitar here and, oh my goodness, it seems to be in tune. So let's see if that would actually work out. You say the "Sequester Blues?"
NNAMDI"Sequester Blues," yes.
COLLINSOkay. It's got to be a blues. It's a 12-bar blues. Got to get a beat going. How does that sound?
NNAMDIIt sounds good.
COLLINSAll right. (singing) I'm a rational guy, if you know what I mean. But I wasn't prepared for 2013. Cut medical research, makes all American lose. Well, we could do so much, but we're plum out of luck. I got the low down sequester blues. I got the blues, man. Well, should our voices be shrill, should we move to Brazil, should we give up any hope on Capitol Hill. No, no, no, a better future we choose.
COLLINSWell, we really believe we can knock out disease and cure the low down sequester blues. Well, we've got a great team. We know how to dream. We'll be glad when there is less reason to scream. We're making discoveries and there's no time to lose. Well, the future is now and we've got the know-how. Let's blow away those sequester blues. Well, the future is now and we've got the know-how, Kojo. Let's blow away those sequester blues. Oh, yeah.
NNAMDIFrancis Collins. You may know him as the Director of the National Institutes of Health and the author of "The Language of God: A Scientist Presents Evidence for Belief." You just heard another he has authored. That was the "Sequester Blues," performed by Francis Collins himself. We're going to take a short break. When we come back, we'll continue this conversation about the National Institutes of Health and take your calls at 800-433-8850. I'm Kojo Nnamdi.
NNAMDIWelcome back. Our guest is Francis Collins. He is the Director of the National Institutes of Health. Previously he led the Human Genome Projects. He's the author of "Belief: Readings on the Reason for Faith," and co-author of the "The Language of Science and Faith: Straight Answers to Genuine Questions." We're taking your calls at 800-433-8850. Do you think religion and science can be reconciled? Give us a call, 800-433-8850. I'd like to go directly to the phones, and here now is Mary in Dale City, Va. Mary, you're on the air. Go ahead, please.
MARYHi. You sort of made the point that I just wanted to, which is, with science you don't know what the outcome is going to be, but it's terribly, terribly important, and I think it's really important that we fund research for science.
NNAMDIAnd you are concerned about the sequester?
MARYOh, yes. Yeah. In a lot of ways, but especially for something like this.
NNAMDIThank you very much for your call. I guess that's the point that the director has been making all along.
NNAMDIHere we go to Scott in Falls Church, Va. Scott, your turn.
SCOTTJust a quick story. There were some people who won the Nobel Prize a while back for basically tracing metabolic processes by embedding a gene that fluoresced under certain circumstances, and they went back to find the fellow that had discovered that gene (unintelligible) and -- because they wanted to help him get the Prize too. They've basically went through a trail of, I think it was two or three canceled grants and research projects they have been in and they eventually found him as a limo driver in Miami. There has to be a better way to use the intelligent people in this country than that.
NNAMDIWhat do you say to that, Francis Collins?
COLLINSI don't know that particular story, but I think this about the green florescent protein which comes from a jelly fish which is now a very powerful method that we use to understand how it sells and their proteins work. And I fear that with the current squeeze on medical research, there will be more researchers who find themselves basically giving up the opportunity to continue their life's trajectory and doing something very different. I don't know whether it'd be a limo driver.
COLLINSSome of them seem to talk now about going to other countries or picking another profession, but that is an enormous potential waste of talent at a time where we need those advances. You know, when you think about the health costs of what we are facing in terms of medicine on ourselves and our families and our friends, this enormous cost of taking care of illnesses, what we spend on research is a tiny fraction of that. Mary Lasker once said if you think research is expensive, try disease.
NNAMDIThank you very much for your call. Mapping the human genome has opened to door to a whole new approach to health care in the form of personalized medicine. Can you talk a little bit about that emerging field and what kinds of advances are occurring there?
COLLINSWell, the idea of personalized medicine is that we are all different in terms of our inherited characteristics, in terms of the environmental exposures we've had, in terms of health decisions we have made, and therefore, if you want medicine to be as effective as possible, it ought to take those personal differences into account. Let's take an example. When you're prescribed a drug, wouldn't it be nice to know that that drug is actually going to work for you at the dose it was given as opposed to treating you as sort of an average person, a sort of one size fits all, which you would never use for buying clothes or shoes, but which we seem to use in medicine because it's the best we have in most situations.
COLLINSWe can do better now. Our ability to be able to look at individual differences and account for those, is becoming more and more powerful. Cancer is a very compelling example right now because every cancer, when you look closely at it, seems to have a different set of things driving that cell to grow when it isn't supposed to. Those are mutations, misspellings in DNA. But each person has a different collection of them, which means you could probably do better to chose the drugs for each person with that information in front of you instead of the standard chemotherapy approach which pretty much treats everybody the same way.
COLLINSWe're getting there. Personalized medicine, I think, the full flowering of that is years away, but it is starting to emerge in some places like cancer, like drug prescribing for certain drugs as a reality, and one that we should all be pretty excited about. I am.
NNAMDIIt's not possible to simply mail away and get your DNA tested. What are the possibilities and maybe some concerns that you see in the commercialization of this field?
COLLINSWell, people are interested in this information. It tells you something about risks to your future as far as medical possibilities of what might be lurking down there for you. I've had my DNA analyzed. It taught me that I was at higher risk for diabetes than I thought I was. That actually got me to pay attention to some good sort of health management practices that I had ignored in terms of diet and exercise. It motivated me to actually lose 30 pounds. And I'm glad I did that and got into an exercise program.
COLLINSNow, it shouldn't have taken a DNA test to get the NIH director to take charge of those kinds of things, but it was a nudge. Certainly you want people who have access to that information to have it presented accurately, and you need to be a little careful out there in the wild west of the World Wide Web about who's advertising which kind of genetic tests and whether it's actually based on science. There are some increasingly good oversights of that, and increasingly, I think we as a nation want to be sure that's taken care of appropriately.
NNAMDIGot a Tweet from Fastercures who says, "How can everyday citizens help the fight for continued NIH funding?"
COLLINSFaster Cures is a wonderful organization that has certainly been spreading the word of how valuable public support of medical research must be. Again, since I'm a member of the executive branch, I can't lobby the Congress. I can educate. I can answer questions.
NNAMDIYou could write songs.
COLLINSI can write songs. I don't know if that's effective or not.
COLLINSBut certainly if you're a member of the public who cares about the future of your own health and wants to see these advances continue, this is a critical time for that whole enterprise. Are we going to expand and flourish, or are we going to see this hard won set of progress slowed down by the fact that there's not the resources there to support it.
NNAMDIYou know, in most circumstances religion would not come up in a conversation like this, but you have written and spoken quite a bit about your faith, including in your best-selling 2006 book, "The Language of God," and so we have a few questions for you on this issue. We will start with an email we got from Roger who writes, "No need exists to reconcile religion and science because no conflict exists. Religion answers the question why, and science answers the question how. Conflict only appears to exist when practitioners lose sight of these domain differences," which I think accurately reflects your own point of view.
COLLINSI think that's quite well said. Science is the reliable way to ask questions about how the universe does what it does, but it doesn't answer questions like, well, why does it all matter anyway, and why are we here, and is there a God. Surely those have to be questions for which other methods of answering have to be employed because they're not questions that science really has much to say about.
COLLINSBut they're really interesting questions, and for me, as somebody who has embraced the idea that there is both a spiritual world view and a scientific world view, being able to incorporate both of those into daily life has been actually a wonderful experience.
NNAMDIIt's a question that Eco (sp?) Dumfries, Va. has. I don't know if you answered it. Eco, you're on the air. Go ahead, please.
ECODr. Francis, good morning. I am a believer like you, and we've used one of your books in a men's Bible study and this issue came up. And I'm wondering both as director of the NIH and as a believer, how much of this -- how have you been able to reach out to faith-based people to educate them on the intersection between science and faith, and how has this impacted your work? How effective has this made your work to be -- to get to where it is. And then the second question I...
NNAMDIWell, allow me to have him one question at a time. Francis Collins?
COLLINSWell, I wrote about this harmony between science and faith in the book that Kojo has mentioned, "The Language of God," and started a foundation called the BioLogos Foundation which aimed to try to continue that civil discourse because oftentimes conversations about science and faith have not been easy ones for people, and it seemed like a meeting place for serious conversation was in order.
COLLINSWhen I became the NIH director, however, it is my responsibility to focus my energies on directing the National Institutes of Health. So I've had less opportunity to be engaged in some of those other deep conversations since then. But I certainly get lots of emails from people with interesting questions and try as best I can to provide responses or direct them to people who are engaged in this, particularly at the BioLogos Foundation.
NNAMDIIs there any scientific research at all that you find comes into conflict with your religious faith?
COLLINSWell, certainly. The whole area of bioethics, where you try to decide whether there are scientific experiments that cross a line into territory that we humans basically should not consider. For many people you ask the question, well, where does your ethical foundation come from, it's entirely feasible for somebody with no religious interest at all to have an ethical foundation, and I suspect theirs will be fairly similar to mine.
COLLINSBut it's certainly the case that when you look at our history as humans that much of our discussions about where ethics really gets its origins are tied up quite essentially in such things as the golden rule and love your neighbor as yourself.
NNAMDIWell, a very recent example, an advocacy group is asking that a study of blood transfusions in premature infants be stopped. How do you reconcile the needs of researchers and the rights of patients?
COLLINSWell, you're referring to a very controversial subject right now which is based on that study, and another one looking at the use of oxygen supplementation for extremely premature infants. This is an area where there are many unknowns in the practice of medicine where physicians basically do the best they can within something that we call the standard of care, but you don't really know whether you've got it right. One of research goals is to try to figure out, okay, what would be the sweet spot where you have the best possible outcomes whether it's oxygen supplementation or blood transfusion. In a very premature baby we don't know the answer.
COLLINSSo research studies are essential to try to get those answers, but they require then that families be willing to participate in clinical research which is a great gift that they give to the rest of the world if they're willing to say so. We do that with the greatest respect for their needs for absolutely the best medical care, but in a situation where we have to be honest that we don't quite know what that is. There is a debate going on about the degree to which such studies require an extremely detailed enumeration of all the potential risks of such research studies when we don't really quite know what the answer is going to be, or whether that is actually giving patients' parents more burdens than will be helpful.
COLLINSAnd there was a discussion about this week at NHHS and it's going to lead to some new guidelines coming from the office of Human Research Protections. NIH is intensely interested in this area. We want to do the right thing for parents and patients in every possible way, but we also need to figure out how we can get better answers.
NNAMDIAnd here is Mary in Washington D.C. Mary, you're on the air. Go ahead, please. We're running out of time. Please make your comment or question brief.
MARYI used to work for (word?), and we did a study in the late nineties or early 2000s finding that 9 out of 10 drugs -- of the top 10 drugs still under patent had been originally developed by the NIH. Private companies had been allowed to patent them, and then charged American citizens the highest price in the world. And could you do maybe one or two things. One is demand that these drugs developed by the NIH be sold to Americans at the lowest price, or take -- retain ownership of the patent and license it to companies to maybe help with the funding of the NIH.
COLLINSThat's a great question. NIH is deeply engaged in the discovery of new therapeutics, drugs, biologicals, and so on. And when you look at the way in which such drugs have been developed over the last many decades, NIH very frequently is seen to have played a major role in the early stages. But the companies then have to take that information and carry it all the way through to clinical trials, to FDA approval, and to actually making pills.
COLLINSAt the present time, as you heard earlier, most of NIH's money goes to universities around the country because of the Bayh-Dole Act, those universities have the intellectual property. We don't. And so NIH, though you might think that we would have some ability to say something about what happens next, we actually don't because of this congressionally-passed legislation.
NNAMDIFrancis Collins. He is the director of the National Institutes of health. Previously he lead the Human Genome Project. He's the author of "The Language of God: A Scientist Presents Evidence for Belief," and "The Language of Life: DNA and the Revolution in Personalized Medicine." He's also the author and performing of "Sequester Blues," which you heard on this broadcast today. Francis Collins, thank you so much for joining us.
COLLINSIt's been a pleasure, Kojo.
NNAMDIAnd thank you all for listening. I'm Kojo Nnamdi.
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