Diane speaks with Dr. Roger Kligler who is living with advanced stage cancer on why he's suing the state of Massachusetts for the 'Right to Die' and with Dr Jessica Vitter, and intensive care and palliative care specialist on why better communication is so needed between doctors and patients facing end-of-life issues.
President Barack Obama announced a new multi-year research initiative to map the human brain. He compared its potential to that of the Human Genome Project. Scientists hope the brain project will eventually lead to solutions to diseases like Alzheimer’s and Parkinson’s and better treatments for a range of mental illnesses. The National Institutes of Health will coordinate the project. The president wants Congress to approve $100 million in initial funding. Some critics argue the money could be better spent on smaller grants to a number of brain research projects with specific goals. But many scientists are enthusiastic. Join Diane and NIH Director Francis Collins for a discussion on mapping the human brain.
- Dr. Francis Collins director, National Institutes of Health.
Researchers from the Howard Hughes Medical Institute use high-speed light-sheet microscopy to image almost all neurons in the intact larval zebrafish brain at single-cell resolution, capturing activity in the entire brain once every 1.3 seconds. Source: Nature
MS. DIANE REHMThanks for joining us. I'm Diane Rehm. Yesterday, the White House announced a major government-funded initiative to map the human brain. The hope is it will lead to better treatments for mental illness and neurological diseases like Alzheimer's. The NIH, along with the National Science Foundation and the Pentagon's technology research agency, will share $100 million to get the project going.
MS. DIANE REHMJoining me in the studio to talk about the challenges and the promise of mapping the brain, Dr. Francis Collins. He's director of the National Institutes of Health. I hope you'll join us, 800-433-8850. Send us your questions by email, if you like, to email@example.com, or follow us on Facebook or send us a tweet. Good morning, Dr. Collins. It's great to see you.
DR. FRANCIS COLLINSIt's wonderful to be here again with you, Diane.
COLLINSI always love coming on your show.
REHMI'm so glad. When I first heard the announcement about mapping the brain, 100 questions came to mind, like, what brain? Who's brain? Aren't we all different? Are we talking about a mouse brain, a human brain? How can we map one brain and have it represent everyone's brain?
COLLINSWonderful questions to kick off this conversation. Well, at a first approximation, a human brain anatomy is pretty similar between individuals. You're quite right to point out that so much of what we value in terms of human individuality is a function of our brains, how they're wired, how experience and heredity has all been folded together into making us who we are. In many ways, who we are is what our brains are all about. But just as with the human genome, which we might end up talking about here 'cause there are some similarities...
COLLINS...the first goal there was to get sort of a reference human genome and then to focus on the differences between individuals which are absolutely critical. With the human brain, we would also be well-served if we sort have had a reference version of what we mostly have in common in terms of how our brains are wired. And we have nothing even close to that right now.
COLLINSThe human brain has about 86 billion neurons in it. Each one of those neurons has hundred or thousands of connections. Those are, to a certain degree, individualized because they do get built during early development based on experience. But there are some common themes amongst all of the functionalities of those circuits that enable us to do things, and we don't understand this.
REHMSo if you -- would you be studying one brain?
COLLINSI think, initially, we'll be studying not only the human brain, but we also need to study simpler systems and try to learn the language of how these circuits work. And that means including, in this project, simple models such as Drosophila, the fruit fly, such as C. elegans, the roundworm, such as the mouse, where a great deal of hard work has already gotten started in understanding the brain.
COLLINSWe will never really understand the human brain if we stop there, of course. We also have limitations in terms of what we can do for human studies, in terms of things that would be risky to people. So we will be somewhat dependent upon simpler systems where we can actually manipulate the system without dangers to humans.
REHMSo let's take the human brain as an example. How would you go about mapping the human brain? What would be the technique you would use?
COLLINSWell, some of this is already getting going, and this is sort of an interesting moment historically. If we try to talk about a BRAIN project five years ago, it might not have been time. If we wait five years, it would be a little late. Right now is just the moment because we do see these technologies developing, but they haven't been pulled together in a coordinated, foundational way.
COLLINSTake for instance, you know, this new ability through something called the connectome to be able to look at living human individuals in an MRI scanner that is particularly elegant in it's ability to see the connections from the front to the back and the side. And there are some absolutely spectacular pictures coming out of this where you can, in fact, see individual differences.
COLLINSJust a couple of weeks ago, the center at Washington University in St. Louis put up the first several hundred of these connectome pictures of individuals, some of whom have problems with their brain function, many of whom are just normal folks. And you can begin to see how there might be something there that you could use for identifying, in a much more refined way, what's going with depression or schizophrenia or autism.
REHMDescribe what you might see.
COLLINSWell, it's very interesting. When you look at these pictures, it looks as if the wiring of the brain is not at all chaotic. When you look at microscopic pictures where you're sort of looking at one pixel, you can't really figure out how things are connected. But this bigger picture, you can see the wires actually run very beautifully at right angles from front to back, from side to side. We should send you some of these pictures you can put up on your website.
REHMOf course, of course.
COLLINSYou would love to look at this. But again, there are individual differences. We're just beginning to get a handle on how those might relate to brain illnesses. There's another several thousand of these images that will be produced over the next year or so. That's just one kind of imaging approach.
COLLINSThe problem with that though, Diane, is that's basically a static picture. And the excitement about the project the president announced yesterday which has this acronym of BRAIN, which stands for Brain Research through Advancing Innovative Neurotechnologies...
REHMI like that.
COLLINS...B-R-A-I-N, is that the goal here is to look dynamically, to be able to actually record from individual neurons, hundreds of thousands of them, at one time while they're doing something to see how those circuits function. A static picture won't tell you that. We need to get to the point of having time in the picture as well.
REHMSo does that mean you'll be looking for volunteers?
COLLINSI think we will. And, in fact, in some ways, people are already doing some of this, particularly for those who need interventions. One of the places that I hope we will learn something that will be fairly importantly and not too far away applicable is, for instance, deep brain stimulation for Parkinson's disease.
REHMUsed in Parkinson's, yes.
COLLINSWe know that this ability to place a probe in the brain and deliver a particular kind of electrical signal can be enormously beneficial to some people with Parkinson's, not everybody.
REHMSome, yes. Right.
COLLINSWe don't really understand how that works. If we understood the circuitry in the brain better, we could probably do a much better job of fine tuning that to make it more effective. So there's a place where what we're trying to do in terms of building a foundation of information may have an immediate sort of direct impact on a clinical application.
REHMAnd are you already able to identify a brain function, for example, that could signal at some point the onset of Alzheimer's?
COLLINSWell, that would be a very important part of this. Could we come up with an even earlier indication? You know, with Alzheimer's, with other kinds of studies, particularly PET scans that look at the deposit of this protein called beta amyloid, we do now have the ability with people who are at very high risk because of their family history to have a very clear sense of who's likely going to get the disease years before they've showed any memory loss.
COLLINSAnd that has finally given us a position of being able to start clinical trials at the point where you're most likely to see benefit before you've already lost a lot of brain function. And certainly, this BRAIN project, by looking at the real-time connections, has a chance of going even further. But I don't want to overemphasize the idea that this is going to have immediate medical consequences.
COLLINSWe're talking about a long-term project here. This is not something that's going to happen in a year or two. This is at least a decade of work. We're building a foundation for understanding everything about the brain in the normal situation and in the situation where disease has occurred. And that foundation is going to take a while.
REHMDr. Francis Collins, he is director of the National Institutes of Health. We're talking about the president's announcement yesterday of the new brain mapping project. Do join us, 800-433-8850. Another element of this that could be off in the future is congressional approval of the $100 million allocated here. How good are your chances?
COLLINSWell, good question. And certainly, some people say, what, are you kidding? You're starting a brand new project that sounds like it's going to take a lot of money just in the middle of the sequesters?
REHMAnd you've already had reaction from some members of Congress, negatively, I might say.
COLLINSIt is a hard thing to imagine being innovative when you're trying to just keep your head above water. But you know what? One hundred million people in this country suffer from diseases of the brain. It's costing us $500 billion this year in terms of the medical management and probably close to a trillion if you add up all of the other factors that they in their families have to do in order to take care of these folks.
COLLINSThere's a sense of urgency here, and there's a sense of opportunity, scientifically. If -- as the director of the NIH, if my response to a very difficult budget circumstance -- and we have one right now -- is to just hunker down and wait for the sun to come out again, then I'm not doing much of a job as far as being a leader.
COLLINSAnd all of the other folks at NIH feel the some way. Tom Insel, Story Landis, two of the institute directors who work specifically on the brain, we all agree this is an opportunity we cannot pass up. We can go faster in this situation if the budget were more favorable. But even in a very unfavorable budget circumstance, you got to have priorities. And this is one of them.
REHMSo what do you mean? Do you simply go ahead and move forward?
COLLINSWe're determined to start this enterprise even if it means tightened belts in other places. The opportunity is to compelling and the consequences of waiting are too discouraging. So we will get started. And I have pulled together a dream team, the best and brightest elite neuroscientists that I can find, to design exactly what the steps in this project should look like in the coming months and we're going to see what they say.
REHMAnd we're going to hear about those steps when we come back. Dr. Francis Collins is with me. He is director of the National Institutes of Health. I know many of you will want to join the conversation. Do so by calling, emailing or tweeting.
REHMAnd we're back. The emails are coming in, as are the phone calls. We'll try to get to as many of your questions as we can for Dr. Francis Collins. He's director of the National Institutes of Health, which will coordinate the mapping the BRAIN project announced by the White House yesterday.
REHMHere's the first email: "The U.S. invested nearly 30 billion, with a B, in the Human Genome Project and nearly 24 billion in the Apollo program. The 100 million proposed allocation for the brain program is a pittance and speaks volumes about the potential erosion of American science under sequestration." Dr. Collins.
COLLINSOh, glad for the question, but I think I can clear up a couple of misunderstandings right there. Actually, Diane, it's interesting. You know, today is the 20th anniversary to the day of my arrival at NIH to run the Human Genome Project, April 1993.
COLLINSSo I know a little bit about what we spent on that. And it wasn't 30 billion. It was actually three, so the...
REHMThree billion. All right.
COLLINS$3 billion, but that was over 13 years.
REHMThat's what I thought.
COLLINSThe first year of the Human Genome Project, the funding was $28 million. Substantially less than 100, you might notice.
COLLINSThis is now what the president announced yesterday for the BRAIN project the first year, $100 million is a good start. But nobody expects that's the end of the story. This is a many, many-year project. Exactly what kind of trajectory the science will take and what kind of funding the science will need has not been worked out. And there were statements in some of the press stories that suggested that there was a number already in mind. I can assure you there's not.
COLLINSWe know that in FY14, which starts in October, we're going to try to have a $100 million to put into this effort. But after that, very much depends on how this stellar group of scientists that we've called to map out the milestones comes forward with a plan. And we'll see the first versions of that this summer and the final version by next summer.
REHMAll right. Here's another email: "Is this political posturing from the White House?" Michael goes on to say, "I can name a number of brain studies already in progress in the private sector. If fiscally responsible members of Congress agree to spend this money, the president seems to be a forward-thinking proponent of science. If members of Congress block this expenditure, the president can claim his efforts to save the world are being hindered." Political question, Dr. Collins.
COLLINSWell, I can assure all the listeners that this project is motivated by scientific opportunity. I'm fortunate to serve a president who is excited about science and its promise for improving human health and stimulating the economy. And there's a real opportunity there as well. But this would not be being put forward as a political agenda. This is a scientific moment in history. Yes, as the writer says, there are other projects going on studying the brain.
COLLINSBut they haven't been sort of coalesced into a real focused enterprise to build this foundation for everything that we're going to want to do in the future in neuroscience. Just like there were studies of DNA before the Genome Project, it took an organized effort with milestones and timetables to really pull it together, recruit some really bright people, aim for some high, audacious goals that would inspire things to go faster. That's what we're trying to do here.
REHMAnd with the Human Genome Project, were there other agencies involved as there are here with the Human Brain Project? The National Science Foundation and the Pentagon's technology research agency.
COLLINSYes. Very good point, yes. The Genome Project was done jointly between the National Institutes of Health and the Department of Energy. And we worked closely together on that effort and in collaboration with other countries.
REHMWhy would the Department of Energy get involved?
COLLINSThat's an interesting story.
COLLINSWell, in part because of their concerns about the health effects of radiation, and radiation damages DNA.
COLLINSSo Department of Energy had an interest in DNA for a long time. And when this all bubbled up in the mid-1980s, they raised their hands and said, we want to be part of it.
REHMAll right. And how about -- I understand the National Science Foundation.
REHMBut how come the Pentagon's technology research agency?
COLLINSWell, this is DARPA, the Defense Advanced Research Project Agency, which is the agency that brought us the Internet. Remember ARPANET? Well, that was from DARPA's initial version of hooking computers together. These are a very talented bunch of engineers, computer scientists. They're visionary. They're risk takers.
COLLINSWe've been working with them, by the way, on a variety of other projects, including several on drug toxicity testing, and they're a natural in this space. They're already very much involved in developing technologies to help wounded warriors in order to regain functions that have been lost, as for instance with traumatic brain injury.
REHMAt the same time, when you have more than one agency involved, you can have different criteria, goals that don't always mesh, Dr. Collins.
COLLINSThere is that risk. I've noticed that too.
COLLINSBut I think we have great relationships already with NSF. We worked with them for many, many projects over many years. And with DARPA, as I've just mentioned, we're in that space with them. And Arati Prabhakar, who is the new director of DARPA, is a wonderful colleague to work with. She and I wrote a blog together yesterday about this BRAIN project, which is up on the NIH website, if you want to read about how we see this as a joint enterprise. We've been over there...
REHMWe'll make sure to get that connected to our own website.
COLLINSYes. And I might also say other partnerships are important here. There's a big interest on the part of philanthropic foundations. The Kavli Foundation has played a big role in getting the idea of this under way. The Howard Hughes Institute has a big investment in this kind of neuroscience, the Allen Institute for Brain Science. Paul Allen, the co-founder of Microsoft along will Bill Gates, is also major donor in this kind of effort, and they've been in this space for 10 years. And they're plunging in even more vigorously.
REHMCould you have done this without government money?
COLLINSIt would be very hard. You know, in this country, the nature of our success story, when it comes to scientific advancements, has been government investment in basic science, and adding other partners to that has worked beautifully in other situations. But we wouldn't have gone to the moon. We wouldn't have done the Genome Project, and we wouldn't do the BRAIN Project without the government as the coordinator as one of the major funders.
REHMSo talk about, before we open the phones, the short-term goals.
COLLINSShort term, I think we really need to figure out how a simpler systems to learn the logic of how circuits work, maybe even something as simple as the C. elegans roundworm, which has only 308 neurons. That's it. But we don't understand how that works to do all the stereotype behaviors that that organism can do. And we should be able to learn that with a focused effort. We need also, though, particularly, Diane, to invest in technology development.
COLLINSWe know we need to be able to record from hundreds of thousands of neurons at the same time. That is potentially possible. It's going to take some very exquisite nanoscience approaches to be able to develop the tools to do that. People can see the path towards that. But we haven't gone down that path. That's going to be a big part of the front end of this project.
REHMAs coordinator, what involvement are you going to have to have with members of Congress?
COLLINSOur goal has always been to try to provide information, education, hopefully inspire people by the promise of this. And it is an inspiring story to imagine what we could do with this information. So I'm a member of the executive branch. I don't lobby the Congress. I'm not allowed to. I would go to jail if did. But I love it when they call me and say, would you come explain what you're doing? And I do that a lot.
COLLINSI spend a lot of my time with those kinds of briefings. And they are almost invariably positive experiences. Medical research is at this amazing space. I don't have to tell you. You do a wonderful job of getting some of those things on your show, and you rightfully were recognized, I might point out, by Research!America for playing that role.
COLLINSIt's a phenomenal time here. And to be able with the tools that we have and the bright minds that are just champing at the bit to chase after new visionary ideas to move this forward, that excites people no matter what party you're in. Fortunately, medical research has almost, throughout history, been a bipartisan, non-political enterprise. And even now, it manages to be so at a time where almost nothing is free of political feelings. We have such a good story to tell.
REHMAll right. We have many callers who want to hear about that story. Let's go first to Madison, Conn. Good morning, Jay. You're on the air. Jay, are you there? All right. Jay. Are you...
REHMGo right ahead, please.
JAYHi, Diane. My question is, what utility might the mapping of the brain have for the diagnosis and treatment of autism? Has anyone thought about that?
COLLINSOh, yes. In fact, I would say of the brain conditions where we most need new insights into cause and therefore into ways to do prevention and treatment, autism is right at the top of the list. Everybody who's been looking at the statistics has to be concerned about the frequency with which this condition is being diagnosed in children, particularly in boys.
COLLINSAnd we know that autism is a problem of brain connections. We know that some of it comes from genetic factors. And when you identify what those genetic factors are, they seem to involve the synapses -- that is, the places where neurons touch each other and where the transmission of information occurs.
COLLINSSo I would expect that if we had right now -- just imagine this as a dream -- if we had a full understanding of the connections in the human brain, and we could compare exactly what happens in an autistic child compared to one who doesn't have that, we would immediately see very important differences that should suggest ways in which we could prevent the disease. We have to get a whole lot of foundation built in terms of our technology before we can get to that kind of visionary goal. But that, for me, is one of the major drivers of doing this project.
REHMAll right. To Merritt Island, Fla. Hi, Daniel.
DANIELHi. Thanks for taking my call.
DANIELI'm -- I actually work at Kennedy Space Center, and we've been trying to buy some NASA technology to finding the cause -- some of the basic mechanisms behind Alzheimer's disease. So I'm well aware of the difficulty in getting resources to do basic research. And I'm wondering what we can do to persuade the public that it's a reasonable investment, that it's actually may be worth more their tax dollars to support basic research, that this is not really something that industry can do, that it's something that we need to do as a country...
REHMAll right. Daniel, if I could follow up, did you say you work for NASA and NASA is doing research on Alzheimer's?
DANIELI work for a contractor at Kennedy Space Center, and we're trying to -- right now, we're working on a plan to, among other things, to utilize the weightlessness to try to improve our ability to do X-ray diffraction on the filaments that form in cells from certain proteins. So I think...
REHMThat's very interesting.
COLLINSIt is. We have a joint program between NIH and NASA on so-called microgravity biology, and one of the interesting areas is whether you can do a better job of growing crystals of proteins, for instance, if gravity doesn't get in the way. Maybe that's part of what you're referring to. And your main question in terms of getting the public more aware of the value of basic science, interestingly, Research!America does these polls, and they would tell you the public is actually already fairly aware of this.
COLLINSIf you ask the general public -- I don't have the specific numbers in front of me. I'm sure we can put their poll up on your website. But something like 60, 70 percent of the public says, yes, basic science is an important government investment. And the majority of people would say they would even be willing to donate a little bit more of their tax dollars to make more basic science possible.
REHMAnd you're listening to "The Diane Rehm Show." And when you think of the number people predicted to suffer from Alzheimer's as the country ages, it becomes not a choice, but a mandate for us to find out the ways in which the healthy brain turns against itself.
COLLINSYou can't look at that without worrying about our future, and we have to do something if we have the chance.
REHMExactly. Let's go to Durham, N.C. Charles, you're on the air.
CHARLESHi. Yes. I have a question in regards to the sort of "Flowers of Algernon" book that I read back in school a long time ago in regards to the Pentagon's funding with military veterans coming back with this brain mapping research. Are there fears? We already have issues with PTSD among soldiers. You get more brain work mapped in. I'm just curious about what the -- what our caller has to say -- or what our panel has to say.
COLLINSSo DARPA, the Defense Advanced Research Project Agency, certainly is very concerned about any ideas that this is going to be misused. By the way, the president announced yesterday that he was charging his bioethics commission, led by the distinguished president of the University of Pennsylvania, Amy Gutmann, to look at some of the ethical issues that the BRAIN project may raise.
COLLINSSome of the work, though, that DARPA has done is really quite breathtaking, particularly in trying to provide functionalities back to people who have suffered grievous injuries, quadriplegics who are able now, simply by using their mind, to operate a prosthetic arm to give them the ability to interact with their environment in really remarkable ways. That's a component of what they're doing that fits quite nicely with this BRAIN project and is very much a wonderful, good thing to be able to do for people who need help.
REHMLet me ask a simple question: If you are watching my brain, and I move my arm, if I think about moving my arm, can you see my brain instructing my arm to move?
COLLINSIn a very sort of low-resolution way, we can see those kinds of activities using something like a PET scan, which measures where your glucose uptake is happening, which tells you which parts of your brain are most active. So if you were in a PET scanner and you did that, we would see your motor cortex, on the opposite side of your arm, light up in order to take on that sort of voluntary...
REHMAll right. That's a physical movement. Now, suppose I felt ashamed of something while you were watching my brain, could you see something?
COLLINSThere might be subtle findings of that with something like fMRI or PET scans where some part of your brain that's involved in emotion like the amygdala might change. But, again, this is very low resolution. It's very descriptive. It doesn't really explain to us how it all works, and we want to get past that. You know, we have, Diane, sort of this big gap between very fine measurements of single neurons and big picture of the whole brain. We want to fill in that gap.
REHMDr. Francis Collins, director of the National Institutes of Health. We'll be back after a short break to answer more of your questions and a few of my own.
REHMAnd welcome back. Let's go right back to the phones. Let's go to Pittsburg, Pa. Good morning, Jackie. You're on the air.
JACKIEGood morning, Diane. Thank you so much for taking my call.
JACKIEI really appreciate what you're able to accomplish on the show. And to the director, happy anniversary. I...
JACKIEAs a health care professional, I view the NIH website on a daily basis, and I really appreciate the information that you're able to get out there -- achieved.
JACKIESo thank you. And my question is, you know, I think this is very, very exciting, to have all of the, you know, potential money that's to be allocated to studying the brain. But I guess as a lot of other critics have brought forward, the whole concept of, you know, how to bring together all of these individual projects to kind of make the best of these resources that are available, I'm just kind of curious about how, maybe, you would see it possible to bring together researches already out there to, maybe, move forward in a more organized manner.
COLLINSThat's a great question. And there's always this tension between wanting to have a coordinated effort and not wanting to squash the wild and crazy creativity...
COLLINS...of people that might actually answer really important questions. What this dream team that I put together, which is being led by Cori Bargmann, who's a remarkable neuroscientist at Rockefeller and Bill Newsome from Stanford, they have agreed over the course of the next few months, along with 13 other really remarkable visionary scientists, to put together a description of what's missing, what's the core activities that aren't currently happening just based on the many flowers that are blooming.
COLLINSAnd then we will make sure that we have funds available to recruit people into those tasks. And I'm hoping, in the process, we will draw in scientists who maybe haven't thought of themselves as neuroscientists until now, and particularly, physicists, engineers and nanoscience experts who may have been working on something else and now seeing this opportunity will want to come and join the team.
REHMAnd here's the opposing side of that question. Some critics are suggesting that the project puts too many eggs in one basket, that the money would have been better spent on funding many smaller initiatives.
COLLINSWell, we will continue to fund many small initiatives. Just to put this in perspective, NIH right now is spending $5.5 billion each year on neuroscience across the board, some of this disease oriented, some of it basic. We're talking about adding $100 million to that. That's 2 percent of the total, but a very focused 2 percent to try to build some special capabilities that aren't currently there and which will actually inform and empower the rest of the enterprise.
REHMBack in January, the European Union announced a BRAIN project. How does this compare with that? Will there be coordination?
COLLINSVery good question. And I think there's a great opportunity here for synergism, and we've already started those conversations. The European project is of a different sort but a very complementary sort. Their goal basically -- just to put it into one sentence -- is to try to build a computer that does what the human brain does.
COLLINSIt tries to actually simulate the brain's ability in a very impressive, intuitive way to do an amazing range of functions. So they're trying to create in silico, if you will, something that functions like the brain, whereas our BRAIN project, I think, is actually trying to derive that data from real functional experiments on circuits.
REHMFrom the brain itself.
COLLINSYeah. So we will have a great opportunity to go back and forth in a virtuous circle.
COLLINSAnd that's great. This should be an international effort.
REHMHere's an email from Rudy who says, "I'm concerned about intellectual property and patents, especially since the court seemed to allow patents for everything. Will there be an effort to open source a lot of the results of this work, especially since it is government funded? How will the government" -- sorry -- "how will the public interest be protected if private corporations take the results of this forward?" And you've seen that happened?
COLLINSIndeed. Diane, your listeners ask the best questions.
REHMI know they do. Aren't they wonderful?
COLLINSThat's a great question, and this is a really important issue. So, again, intellectual property applied prematurely to basic information can be actually an impediment to public benefit into progress, and we will work very studiously to avoid that kind of outcome in this project, putting everything...
REHMHow can you do that?
COLLINSWell, one is to just put all the information in the public domain as soon as you derive it. And once it's in the public domain, it cannot be claimed as intellectual property...
REHMOK. I see.
COLLINS…'cause your public domain is now called prior art and that's that. That's what we did with the genome project, putting all the data on the Internet every 24 hours -- made it -- once we got to that point, no longer something that somebody could claim. A lot of claims had already happened in the early days before we got to that point. Here, we're going to learn from that lesson, and we are most definitely going to work very hard to make this an open-source enterprise.
COLLINSBut let me say one other thing. Intellectual property applied downstream to something that is going to result in the development of a therapeutic or a device that the public needs. That's where intellectual property has an important role because, otherwise, you won't se the development of those products because a company won't feel it's worth their time to do the investing. Their market will be gone as soon as they've done all of the investing by some other competitor taking it away. So we have to be careful. IP does belong there, but it's in a very downstream space.
REHMAll right. To Toledo, Ohio. Hi, Keith.
KEITHHi, Diane. Thank you for having me on your show.
KEITHI listen to you all the time. Thank you.
KEITHBare with me. I'm a little nervous, a first time caller.
REHMOh, it's OK.
KEITHMy question to your guest is -- I hear a lot of talk about Parkinson's and Alzheimer's. Is there -- what is -- what are they doing about Huntington's disease? My mom, who just passed away last month, was only 56 years old and...
REHMOh, I'm sorry.
KEITHYeah. And, you know, I'm 38. It's an adult onset disease. I've never been tested, my sisters haven't been tested, but we have a 50 percent chance. And I would just, really, eager to hear what his -- what he has as far as information on what they plan on doing or are doing about Huntington's disease.
REHMDo you plan to be tested, Keith?
KEITHI do. I do with my -- one of other sister -- sisters wants to be tested as well, but the other one doesn't want to.
REHMI understand. Dr. Collins.
COLLINSVery challenging personal decision that you're facing, as are your sister's. And over these years, where the test has been available, it's been very difficult for people to know what to do because at the moment, we don't have a therapy to offer people who test positive. You know, it's funny that this comes up because today -- this afternoon, I'm the keynote speaker at a meeting of the Huntington's Disease Society of America, HDSA. We're having a special meeting 'cause it's 20 years since the discovery of the Huntington's disease gene.
COLLINSA lot of anniversaries are happening here. Twenty years and we've learned a tremendous amount about how that glitch in the genome causes the consequences that it does in the brain. And there are some exciting developments in terms of therapeutic ideas coming out of that, particularly from animal experiments, not yet, unfortunately, to the point where I could say that we have answers. But, boy, there is a lot of work going on there by NIH and by some of the other organizations, and I think there's room to be optimistic.
COLLINSThe BRAIN project, again, will provide this kind of foundational information that we don't currently have about how the brain is wired that should be a benefit to Huntington's disease research, as well as all the other diseases we've mentioned on this program. We need that information. Imagine you were trying to understand heart attack, and you didn't know how the heart worked. That's kind of the way we are with Huntington's or Alzheimer's.
COLLINSWe need to get further.
REHMKeith, I wish you good health.
COLLINSIndeed. Me too.
REHMThanks for calling. Let's go to Charlotte, N.C. Harold, you're on the air.
HAROLDThank you, Diane. I'm glad to be on the show.
HAROLD...but a long-time listener.
HAROLDWell, my question to your guest is what kind of technology are we using to accomplish this?
COLLINSGreat question again. And some of technologies probably haven't been invented yet, and that's part of the point of this enterprise is to inspire some real creative innovation. But some of the ones that have been invented that I'll just quickly mention, one is something called optogenetics. Now, what is that?
COLLINSIt turns out that if you engineer in a mouse or another model organism the right kind of gene expression, you can set it up so that shining light on a neuron causes it to fire. And that means you can, in a very specific way say, well, what happens if you just activate that one neuron, where does the activation spread? What does it talk to? This amazing effort, which has just been invented a few years ago has really revolutionized our ability to figure out how these circuits work.
REHMWhat kind of a light?
COLLINSOh, well, you need a laser that will have the right light frequency to be...
COLLINSNo, no damage done at all. But it activates set systems so you can see the consequence.
REHMIsn't that interesting?
COLLINSIt is totally cool.
COLLINSThat's one of the technologies. Another one is the ability to image individual cells that are firing because there are calcium concentration changes. And we now have the ability to look and see that a neuron has fired because of a visual signal because the calcium has changed again -- very recent discovery. And you can look at lots and lots of cells at the same time.
COLLINSThis is -- Mark Schnitzer at Stanford and others have done things like this. And then there is this ability to develop these microprobes or nanoprobes that allow you to actually have a probe touching hundreds of neurons at the same time to see what they're doing in real time. And we want to expand that to even larger numbers of cells.
REHMHere's an email from Rita, who says, "This project is so critical to our future and future generations. I realized the sense of urgency when my volunteer screenings for participation in clinical studies begin. I cannot think of a better way to contribute to our future."
COLLINSWell, I really appreciate the interest here in taking part 'cause none of our medical research can go forward without that kind of participation. What the BRAIN project is going to do initially, much of this will not be involving human volunteers. But some will be. Right now, I mentioned this thing called the connectome that's going on in St. Louis where they're looking at the wiring at sort of the 20,000-foot level in individual's brains. They are certainly seeking volunteers for that effort.
COLLINSAnd if you're talking about interventions for disease or even people willing to serve as normal volunteers, the website called clinicaltrials.gov is your best place to go and find what's out there. If you go to that site and just punch in the name of a disorder, for instance, or even something like memory, if you're interested in learning who's study memory, you'll see all the trials that are currently in rolling and how you can sign up. It's a wonderful resource.
REHMAll right. And let's go now to St. Louis. Kyle, you're on the air.
KYLEThank you, Diane. Thank you, Doc. You are so awesome. I have a question about MS. Do you know what causes the body to attack itself?
COLLINSBoy, I wish I did. And, of course, a great deal of work has been done over a few decades by many investigators trying to understand what triggers that. MS, as you know, is an autoimmune disorder where your body attacks the lining, the insulation that occurs of these neural connections and results, therefore, in a very unpredictable series of neurologic problems in an unpredictable course, some people having really very serious problems, others only occasional episodes.
COLLINSWe do not understand as yet what triggers this. We know there are genetic factors that makes some people more susceptible than others. There's this is long-standing observation that MS is more common and people who spent their first 15 years in a more Northern climate as opposed to a Southern climate, which suggests there is some perhaps viral agent that triggers the process. But we still don't have a good answer. We have a lot new therapies, however, which are quite exiting.
REHMAnd you're listening to "The Diane Rehm Show." A friend of mine has MS and is kept really reacting quite normally, ordinarily if she stays with her medication.
REHMNow you're saying there are many therapies out there.
COLLINSThere are a few that have already been FDA-approved that are providing, I think, real respite to people who had not had much luck with previous therapeutics. And there are lot more in the pipelines. This is an area of extreme interest and investigation.
REHMKyle, you might look further in your own case. Thanks for calling. To Lafayette, Ind. Good morning, Luke. You're on the air.
LUKEGood morning. Thank you very much for this show.
LUKEDr. Collins, I just heard you speak at Purdue years ago about your book "The Language of God," and I appreciated that book very much 'cause it helped -- as a scientist, it helped rationalize the metaphysical with testable hypothesis in the face of religion. Anyway, my question is have you begun to look at legislation that will protect us from the result of -- coming up with brain markers that indicate disease?
LUKESo in other words, we have the physiological indicators for MS or, you know, and you named a host of brain diseases that insurance companies could then use against us to deny coverage, to, you know, so years ago you had the Human Genome Protection Act or -- I can't remember the exact phrasing.
COLLINSRight. Genetic Information Nondiscrimination Act, GINA.
COLLINSSo can we do something like that for other kinds of predictive markers that might come out of studying the brain that are not exactly genetics tests but also have some potential of being misused in discriminatory ways? It's a very appropriate question.
COLLINSAnd certainly, as the president's bioethics commissions starts to investigate steps that might need to be taken, as we are maybe on the precipice of learning a lot more about the brain, that will, I'm sure, be on their lists. Having seen the general principle endorsed that predictive information that you have no ability to actually have a personal control over should not be used against you in terms of your health insurance or your employment...
COLLINSShould not. Then I think the legal principle is established through GINA to say that we shouldn't allow that with other kinds of predictive information, but we would need to look carefully about how to achieve that goal so that mischief doesn't occur.
REHMAbsolutely. So what are your very next steps?
COLLINSWell, the very next step is through this dream team -- the Bargmann-Newsome gang -- to get them together, which they will be happening very soon, and basically ask them to layout what is the right order of events that we should begin to invest in for technology development, for study of simple systems, for study of human systems, how does that all fit together with what other agencies and other organizations in the world are doing so that by this summer we have a pretty good early plan of what our goals are going to be.
REHMWell, I will hope to talk with you as the project advances. I think it's time for me to make a trip out to NIH...
COLLINSOh, I agree.
REHM...and see for myself...
COLLINSAll right. We will set that up.
REHM...what's happening. Dr. Francis Collins, he's director of the National Institutes of Health, which will coordinate the brain mapping project. As always, thank you.
COLLINSThank you. It's been a pleasure.
REHMAnd thanks for listening, all. I'm Diane Rehm.
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