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tv   Inside Story  Al Jazeera  April 6, 2016 6:30pm-7:01pm EDT

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your mind. >> our experts go inside the innovations, impacting you. >> this is the first time anybody's done this. >> i really feel my life changing. >> techknow, where technology meets humanity. only on al jazeera america. >> the national institutes of health is an enormous organization. a medical research agency dedicated to preserving health, extending life. and given $1 billion a year doing it. the nih director is one of the pioneers sequencing the human jeno, a tireless advocate for biomedical r&d. and he's my guest. precision medicine, prev entive
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care. necessary's future, it's the "inside story". welcome to "inside story," i'm ray suarez. if you are like a lot of people, you probably didn't think about the american institutes of health, not today, or not at all. yet you supported its work. it's $30 billion budget makes it the largest institution in the world. it exists at the cutting edge of new techniques and knowledge. but often in the congressional appropriations process, the never ending battles over medical ethics, decades long philosophical debates, and funding that may be taken up by
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the private marketplace. the national institutes of health are led by dr. collins, and he has been there since 2009, and it's my pleasure to welcome you to "inside story". great to have you here. >> great to be here on your birthday, ray. >> what's the thing this you're thinking about now that is taking up a ton of your time, that you worry about at night or open your eyes in the morning? >> there's not just one thing, but one thing right now, the precision medicine initiative that we're trying to launch, and we're in the phase right now of a very rapid scale effort that we aim to offer to 1 million americans to take part in. this is the largest study of this sort that has ever been we aim to invite 1 million americans to be our partners in this effort that will collect
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every kind of data you can think of factors that play out in health and disease, and use that information to do a better job of disease prevention. >> so when you say precision medicine, is it personalized medicine that's able to be more precise because we're able to know you more specifically, down to your molecular level. >> that's exactly right. much medicine for all of human had history has been based on an one size fits all approach. and we try to personalize things when we can, like eye glasses or blood transfusions but most of the time when you go to the doctor, it's prescribed by the average response of the average person, and most of us are not all that average, and we're better at determining what those are, and how that will improve outcomes. so it's partly about your inheritance, and your jeno, and
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that's something that we're able to measure, but it's about your environmental exposures, and your lifestyle. about what's happening in your life at that point, as far as social determinants of heaping. putting all of those things together, we, with a very large number of individuals, when we measure those things, ought to be able to figure out what's the way for not just the average person, but for each of us to maintain health? >> those variables that you describe are as individual as a thumbprint, but are the results of those lifestyle differences also as different as human beings are? if we take two people who have tumors, let's say, in an organ in the body. and we analyze those tumors, would they be genetically different, though they're tumors of the same organ? >> they would be totally different. and you put your finger on precision medicine, which is cancer, and cancer is after all
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a disease of the jeno. it happens because of misspells in the dna. some of them inherited or some of them later in life, picks up a glitch that allows the cell to grow when it should have stopped growing, and a glitch comes along, and pretty soon, it's growing way too past or spreading to other places. but if you took two peopling with lung cancer, the same age, with the same risk factors, that had a tumor in the lung that was about the same size, and even under a microscope, kind of the same thing, and then you look at the dna, and say the same mutations, into those two people? and the answer would be no, and it would be quite different. each of them would have five or six driver mutations, responsible for those cells growing and they shouldn't, but they would not be the same list. there might be an overlap. and we're learning but to study large numbers of people, that's the point. if you want to be precise, you
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can't just study hundreds of people, but you have to study thousands or a million. why do you care? i would care. if i was one of those people and i wanted to be cured, i would want to know exactly what is driving my cancer to do what it's doing, and if there are a million drug therapies and a lot of them come along, pick the right one for my tumor, instead of a random spin of the dice to have a better outcome. >> but in jen raising of modern medicine, we have tried to find silver bullets that treat everyone who is suffering from a specific malady, or help to prevent a specific malady, and the economics of medicine rest on aspirin addressing inflammation, art meeseium, being a presentive for mallario. but you're talking about something that works in the opposite direction, a medical
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approach that's tailored to the single human individual. >> i don't want to overlap that individual concept because there will be commonalities. if we had 1 million people with lung cancer, there would be 100,000 of them with the same target that you would want to go after, but you wouldn't want to give it to all 1 million because 90% wouldn't benefit. they're not the only person on the planet at that point, you're just trying to narrow down your focus so people can have the best benefit. >> what amounts of predispositions to illness that exist in the certain varieties of the human family would there be medicines eventually that willed work better on african-americans than european americans? preventive medicines that work better on asian americans because of the way that the human family tree has splint
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apart overtime? >> certainly, that's turning out already to be the case, if you look at the dna, because variations in the geneum are not precisely the same, we're all one family from common ancestors, but even the fda has indicated that in more than 100 drugs on the label, it would be a good idea to know what your dna sequence is for the particular gene that's responsible for metabolizing this drug. because you might be one of the people for whom the usual dose is too high. and that does get influenced a bit by your ethnic background, but to get it right, you want to have mention the dna variation itself.
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we have shown in various studies that it can be a better outcome for the right level in your body. but if you go to the doctor, your dna sequence is not available at the moment. and the doctor writes the prescription anyway. but think where we're going, as it plummets in cost, it's down to about $100,000. and why should that now not starting to part of your medical record? protectked by privacy and have confidentialities, so another doctor wants to write the prescription, click of the mouse, oh, ray, you're the one who should not have this drug because of a hyper sensitivity reaction, and we'll give you this drug instead. that seems like a good model. and we could get there if we push pretty hard. >> that's where i want to pick it up when we come back. we have had questions about
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whether everything possible is necessarily allowable or even a good idea. and we'll talk about some of the ethical frontiers. medicine in the future with dr. francis collins of the nia.
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>> you were watching "inside story". i'm ray suarez. we're talking about medicine's future with dr. francis collins, the director of the national institutes of health.
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you may recall that earlier in the century, collins raced to find the sequence for the human an jeno. and it was completed more than a decade ago. it was supposed to hold great promise for untold suffering. has it lived up to its promise? and what do we have to be careful about as we move forward. at the time, it was a celebratory move, an exciting home. and now here we are more than 12 years later. have those codes, the cs, the as, the ts, the gs, opened up everything that you would have thought by 2016? >> it's possible these days, when you make pricks to be held accountable because you make a power point presentation and it gets saved somewhere, and i went back and looked at the
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talks that i gave in 2023 about what we might expect. and i'm happy to say that i was pretty close to right, but there were some surprise that we hadn't anticipated because we do not know what was hiding in the jeno. one of the things, that her owed tear things like diabetes, there might be a few genes, and the latest count, up to 8, each one of them shining a light on the cause of the disease, which is pretty breathtaking because we wouldn't have known it without the tools. but one thing, to make a prediction about your future or mine, by looking at the geno in a healthy person, it's a complicated analysis, and we're still learning to do it. and on the other hand, what we have learned about certain conditions, and we were talking about cancer a little bit ago,
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and its bracke breath take and i wouldn't have thought it. anybody who has a cancer ought to have this dna analysis done, to determine the most effective treatment. and i didn't expect to get to this point by 2016. >> at the same time, there have been nervous conversations and interesting dystopian conversations about sin authentic biology, using this knowledge to create genes, and edit existing genes, and have those possibilities run ahead of our ability to control, to channel, to considerhe consequences? >> well, i think that's a very appropriate question, and i will take some provide in the fact that the geno project started a new way of thinking ethical consequences in biology. mainly that you don't wait for the expected crisis, and did you actually have a thoughtful
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process of anticipation, and try to be sure that you have put appropriate things in place to avoid outcomes that most people would disagree with, and i think that that has played out well. for instance, there was a big anxiety about dna scrim nation. if i had my dna analyzed, will it take away my coverage? will my employer say, we are not going to hire that guy because he might get sick, and that's prohibited by law as a result of the process of preparing for it. we took care of one of the biggest anxieties, but there are other things. >> but databases and what's in them is prohibited by law, but people do find out things about you, and about your past that you may not want them to, and now it makes possible, knowing more things about you. this recent discovery with the c4 and the predisposition to schizophrenia.
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it's not a one-to-one correlation, but if you have a predisposition and the boss doesn't know that, he has a downsized risk. >> he has a tough case against him. because the generation discrimination act, he should have known that, and if he used it against you, you have a strong case to bring damage to him that's illegal of what he would contemplate doing. and a federal law since 2008. >> what about gene editing? if we get to a wine where we can really synthesize the concentrations and the mix of proteins involved in this, and take certain experience out of human experience, and in to human experience through manipulation, i don't think that i'm talking science fiction anymore, do we have good guidelines? do we have barriers put in place to go where you're going
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and no further? >> i think that we do in this country, if there's an anxiety, and if there's a national go ahead that has such clout that such guidelines would be adhered to across the world. you're talking about this amazing thing, an editing system that has very recently come into play, and which everybody is enormously excited about. it allows you to take any cell and go in and surgically change the dna sequence in a precise spot. fixing it by changing an a to a t or a c to a g. the power of that for research is breathtaking. things that would have taken us a couple of years can be done in a week, and everybody is fired up about that. every laboratory, including my own is using it to find out how life works. >> wha what do you have to do wh it >> the question is, do we want
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to start informedfying our own species? that would be a major step, of which many of us, including me, are very concerned that we do not do, unless we have much more information than now, and this is getting outside of the scientific arena, into the theological arena, and philosophical arena, are we ready to take charge of our species? and yet there are experiments in other countries where human embryos, they're not to be implanted, this is not to make a baby, but to try to understand early steps in human development. i think right now in the u.s., there's a strong prohibition against such experiments by the congress, at least with federal fund being, but internationally, the debate is going on, the national academy of sciences held a discussion about this. jointly with the chinese academy of sciences and the uk
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is beginning the process. having said that, i think that the benefits of gene editing, when it comes to treating terrible diseases, are going to be much greater than this anxiety. but we have to pay attention to it. >> stay with us, it's "inside story".
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>> welcome back to "inside story," i'm ray suarez. medicine's future this time on the program. i'm with francis collins, the director of the national institutes of health. your boss, president barack obama unfailed what he called a moon shot for cancer, what is that and how do you fund it,
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and how does it work. >> well, he unveiled it, and assigned the job of control to the vice president, joe biden, who has gotten passionate and involved in the effort, especially after the death of his son last year of a brain tumor. i guess people heard this and said that's exciting and wondered what is it? i'm happy to say that just this past monday, the new england journal of medicine, the director of the cancer institute, brother an essay about this, so people can read what we're talking about. but it's still in the process of having a scientific plan laid out. why is this an especially important time to tackle cancer? one. areas which people are most excited about, is immune therapy. we understand the immune system is out there all the time looking for trouble, looking for invading pathogens, but looking for your own cells that
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have gone bad. and a cancer has properties that immune systems ought to be able to go after, but they don't always. there are dramatic examples, just in the last few years, of how to wake the immune system up, and even very late stage melanoma or leukemia, or lymphoma, they have been essentially cured by these checkpoint inhibiters, using something called car t says, and it still doesn't work for many other tumors, for lung cancer, pancreatic cancer, and prostate and breast cancer. only a few cases have they have been successfully treated by immune therapy. but they have the same thing going on. their cancer cells are abnormal too. so figuring out how can we understand the specific science of cancer immunology and
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activate the same approach to treat disease that's we currently don't have good answers for. suppose we could do that for pancreatic cancer, and brain tumors, for which we don't have good treatments. that's part of the moon shot. but there's prevention, there's early detection, and there's the art of looking at single cells instead of a lump of a tumor, and trying to create a buzz in the community for people to try innovative ideas. >> does that require you in a process for department heads all over the federal above the and fight for your share of the pie? they're doing it in the interior, in commerce, and in defense. do you have to do that as well? >> part of my job as the director of the national institutes of health is to respond when congress wants to hear about how this money is being spent, and other opportunities out there,
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tomorrow i'll be a witness before the subcommittee that determineels the future budget for next year. i'm sure that the cancer moon shot will come up. because they're very interested? in as well. the president has laid out an idea. the president proposes and the congress disposes and we shall see what the house and the senate want to do with this great idea. i think it's a great time to put the foot hard on the accelerator and try to speed it up. to make it happen, but we can make it happen faster. don't get me wrong. cancer is hundreds of diseases. it's not as and we have a bright day where sum, we cure awful them, but some are faster than others, but we go faster now than i would have thought possible, and why not really pull out the stops? >> you'll be talking to a mix of laymen with a pretty good feel for it. actually, there are many doctors who are now members of
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congress, and people who took the last science class 40 years ago. how do you taylor your pitch to let's say a mixed group of legislators about something that you want to sell as well as teach. >> i love doing this. medical research is not a partisan problem, and it doesn't get caught up in a political environment. everybody is concerned about the health for themselves, for their families and their constituents. sure, they're worried about where is it going to come from, but we all agree, we need to cure cancer, and we need to neeo something about diabetes and find out about the causes of oughtism. and those are not debatable issues. and then the question is going to get there. and i have this great opportunity, where science is going, and what we know, what we don't know, and what we could do with the sources. i have met with hundreds of
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members of congress, one-on-one since i've been the nih director, and i can't think of a single one that went bad. >> we have about a minute and a half bad. and what do you want to guest done in the next nine months that you have on the job? >> i want to get this precision cohort launch had.ed. we won't have 1 million americans, i want to see the cancer moon shot. and i want to see the brain initiative, the bold effort to see the 186 billion neurons between your ears, and i want to see that going forward faster, though it has been rocketing forward. and i want to see the bio medical industry launched with the power of ideas. and be sure that we can offer them some confidence that the support all of this is going to be an upward trajectory. >> that's all for this edition
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of "inside story". i want to thank any guest, nih director, dr. francis collins, and great to have you with us. >> great to be here. >> like the old song says, the days are dwindling down on a precious few. we're going to bring our last programs before we sign-off. tomorrow, our conversation with the u.s. ambassador for international religious freedom. i'm ray suarez, thank you for watching, good night.
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