 So, now I would like to turn it over to Dr. Alan Guttmacher, who is the Acting Director of the NHGRI, and please take it away. Thank you very much, Sarah, and thank you all for joining us both for the webinar and I hope for joining our planning process because I will try to make clear we really want this process to be a very inclusive one. We know that there's a lot of wisdom about what kind of research we should be supporting where genomics is a science should be going that resides outside the NIH, so we want to get as much external wisdom added into this process as possible because as I will also try to make clear, this is not just about planning where does the NHGRI go over the next few years. What we're really trying to figure out is where does the science, the policy, the other areas that we're involved in, where do they go over the next few years? We're most interested really in where they are going because if we can figure out where genome research is going, where its applications to health and healthcare are going, then we can figure out best exactly what role our institute and NHGRI should play in advancing those kinds of things, but first we really need to understand where all the science is going. So, that's a lot of what I'll be talking about with you this afternoon. In terms of just an overview of our planning process, you know as we throw the word vision in there because this is not the kind of planning process that's going to get way down in the weeds, we're really trying to be somewhat visionary in this both in terms of taking a sort of 30,000 foot level look at things to begin with that we will clearly get down somewhat to lower levels as we talk about implementation, but also that we'd like to come up with a plan that truly is visionary, that is one that looks forward, that is ambitious, that's part of the history of the field of genomics and certainly part of the history of our institute that we try to be ambitious and reach fairly high, often sort of the reach for the stars kind of thing which has guided much of genomics, we like to see that continue. So what we really try to do here is to get a wide ranging and as I said before inclusive assessment of really what is the state of the art in genomics currently and where the field should be going over the next several years. We're purposely not saying this is a five year plan or something like that because sometimes the time frame can be limiting and also sometimes one can worry too much about exactly something to take four years or five years and it's hard to predict that anyway. So we're really talking about the next several years, you might think of it as five to ten years, where will the field be going? And the purpose of this is to help us and we hope help others plan their research investments, their research efforts in terms of how do we further the contribution of genomics to improve both human health and other areas of society. As you'll hear more detail in a little while, this is an ongoing process. We hope to complete it late next year in 2010. It's a kind of context for this and I suspect many of you that are on the phone who were involved in this process. Back over an 18 months to 24 month period of 2001 through early 2003 was the last time that NHGRI embarked on a planning process and that one led to a publication in Nature that I'll talk a little bit about more in a moment which included this somewhat iconic vision that sort of summarized in many ways the vision document in terms of the application of genomics to biology, to health and to society and it's from that background that we approach this planning process. The last planning process was very successful in our eyes. It included over 600 different individuals, something like 11 different conferences, meetings, et cetera and really involved experts to a wide range of expertise in terms of genomics, applications of genomics to biology, to medicine, clearly to society, LC issues, that is ethical, legal and social implications of genomics in general and a number of other areas. For that one we had planning meetings in 2001, 2002, a series of workshops which culminated in this publication in Nature in April of 2003. This is that iconic illustration. I show it for two reasons. One is that there is a clause in the contract of everyone who works at NHGRI you're not allowed to give a talk without showing this slide, but second of all because it really does represent in a single slide sort of the essence of where we came out from that planning process which is to think about the future of genomics back in 2003 as resting on the foundation of the human genome project which at that point had literally just been completed. And to think about its application, these three sort of floors of biology, health and society, but floors that interlink with each other partly because of cross-cutting elements such as education, LC issues, training, computational biology, technology development and other kinds of resources. And also you'll notice there's an open door in the picture there. That was important to us to show that this again stressed that both the process but genomics is a field we thought needs to be inclusive. It needs to include people from very many different disciplines. It needs to include people who are not scientists, who are simply members of the public who are interested or whose lives will be affected by genomics and that includes just about all of us. I think to our probably not to our surprise as much as our delight that planning document although it's now over six years old has held up very well with time, we think. Nonetheless, even though we still pull out of various drawers where we have it hidden away and look at that document, the field has advanced so markedly in the last six years that while that document doesn't really feel dated yet, there clearly are some new areas that we could explore. There may be some priorities that have somewhat shifted over that period. So we thought it was important to embark on this new planning process. Just as again a frame for this, this comes from the publication back in 2003 just to look at the sort of the timeline of genetics from the beginning of the human genome project in 1990 through 1996 and then through 2003. The most important part of this illustration for that publication was probably not noticed that easily but it's this little thing in the box here to be continued that a fundamental part of our thinking about genomics is that it really is about the future and that that planning process as well as the current one, while it needs to be based on the reality of the present, needs to really be forward looking, needs to be thinking about the future rather than simply restating where we are today. So what about the current planning process? Well, it really has three phases, the first of which has been completed. That was to put out for comment four white papers. I'll get into more detail about those on the next slide. That we had drafted both by people who were staff members of NHGRI and also some external experts. And to put those questions out on the web, to then ask for community input. And there was a several month period where people were invited and we got lots and lots of comments about these questions because we thought the first thing to do rather than saying gee where should genomics be going was to think what are the questions that genomics should speak to? What are the kinds of things that we should be able to answer with genomics approaches and tools in the future? What are the questions that are really basic to where we should be going? So we want to try to perfect those questions and we think with the community input we've done a pretty good job of not perfecting them, at least of optimizing them. So where we are now in phase two is that these optimized questions are up on the web and if you just visit www.genome.gov, you can easily find the planning pages there on our website, which will take you to these draft white paper questions. And ask through the end of this month, through June 30th, we're collecting community responses to arise questions. Basically saying gee if these are the questions, how would one answer the questions? And again, we would like a wide range of folks with a wide range of expertise to help us figure out what are the best ways to approach those questions. What we will next do once we've received all those by the end of this month is then review all of the comments and look at those based in the comments. We'll probably reach out to some specific people for further comment, expertise, etc. But to use that information to figure out what are the other planning activities that we need to really be able to understand these areas. Do we need to have as we did some years ago, perhaps a variety of workshops, I'll get more to that theme in a couple of minutes, that would help us flesh this out over the rest of this year, and at least the beginning if not more than that of next year. So the four white papers are on these areas. The first is about applying genomics to clinical problems, diagnostics, preventive medicine, and pharmacogenomics. There's another one applying genomics to clinical problems in terms of therapeutics, another on education and community engagement, and another on the future of genome sequencing. Clearly we know that these four areas are not the only areas in genomics we need to pay attention to, but we thought there were four crucial areas. And ones that we didn't already have planned workshops as we'll talk about in a moment that we'll be helping us with so that we really thought that, again just putting these out in the web, new way for us to do this, but we thought an important one again in terms particularly of being inclusive and getting the best wisdom that's out there. So to take a little bit of a look at each of these, the one in terms of applying genomics to clinical problems in terms of diagnostics, preventive medicine, pharmacogenomics. The kinds of things that's looking at is, how do we integrate genomics into the clinic? How do we do that in a way to maximize benefits and minimize harms to patients? How do we do that in a way that will actually maximize its use not just by docs, but by all healthcare professionals? What about the insurance reimbursement process in terms of genomic medicine? How will that work? Special populations in high risk groups are there special issues involving clinical care in terms of preventive medicine, in terms of pharmacogenomics, etc., for those groups. What about the whole issue of direct-to-consumer genetic testing, which of course is becoming more and more common, and clearly if one looks forward the next few years is going to be yet more ubiquitous? In terms of applying genomics to clinical problems and therapeutics, what are the best ways to use genomics technologies, genomics approaches, genomics knowledge to develop and apply therapies for disease? Are there ways we can develop new kinds of therapies using genomics approaches? Are there ways to apply those therapies and even more conventional therapies to disease and to individual patients in ways that would be particularly useful? Where are the gaps in the overall infrastructure in terms of doing this, in terms of sample collection, in terms of patient populations? Molecular libraries, that is large libraries of small molecular compounds that are very important in terms of doing this. Where do those gaps exist? Where are the kinds of things that we should be thinking about filling gaps over the next years? And what can we do in terms of educational initiatives to contribute to the successful translation of genomics in this area? In terms of education and community engagement, and for all of these, obviously, there are multiple areas well beyond the short list of bullets that were shown in these slides, but three sort of foci for this are in terms of health professional genomic education. How do we educate the health professional workforce of the United States and, in fact, globally to be able to use genomics to the benefit of patients? How do we inform and educate the public about genomics in a way that they will be able to use it in terms of their own health care, in terms of thinking about themselves more broadly as well? And what do we do in terms of community engagement? And that's involving lots of different kinds of communities. How do we engage those communities in this process? How do we engage those communities to help us set the research agenda, not just to be research participants, but to be fully engaged in the research agenda? How do we engage various communities in terms of thinking about clinical applications and helping shape how that will occur, et cetera? In terms of the future of genome sequencing, what will be the consequences of increased capacity and decreased cost of DNA sequencing? Many of you will know that this is an area if you look back over the last 10 years, the cost of DNA sequencing today is approximately one 14,000th of what it was 10 years ago. It's going to continue to get cheaper over the next few years. How does that change the way we do things? What does it mean if we can sequence anyone's genome for $1,000 or less as we expect to be able to do, technically, within a couple of years or a few years? How does that change things? How does it change how we do research? What does it mean we've often relied so far in large centers to do genome sequencing? While there still will undoubtedly be a role for such large centers, there's going to be a much more distributed availability of genome sequencing. When the technology to do so becomes more and more simple and cheaper and cheaper to buy, we'll see medium-sized centers. We'll probably see desktop DNA sequencing in the not-too-distant future. How does that change the way we do both research and clinical care? What is the value in terms of research, in terms of clinical care, of improving sequencing technologies? How do we figure out, again, for NHGRI, but for others, where do we invest our energies, our financial support, in terms of developing new sequencing technologies? And how will we use this huge amount of data to actually improve human health? One of the desired effects, but also in some ways a side effect of this constantly improving sequencing capability is that we're spewing out more and more data and it's huge amounts of data. How do we analyze that data? How do we store it? How do we use it to really improve human health? How do we make sense out of it in a way that will be helpful to patients? Other potential topics, and this, again, is a short list of many such potential topics. What about large-scale DNA sequencing as applications? Medical sequencing, comparative sequencing, that is sequencing other species and what does that tell us about the human species by comparing DNA sequences among species? Metagenomic sequencing, that is much larger, you know, going beyond just the DNA sequence itself. Sequence-based functional genomics, such projects that already exist such as the encyclopedia of DNA elements or ENCODE, MODENCODE, which is a similar effort for model organisms. Both of these are really trying to figure out, well, gee, now that we've got the DNA sequence available, how does the genome really function? Various other kinds of efforts that are ongoing now, some of them in a fairly small scale that probably need to be made large-scale in the near future, other kinds of efforts in those areas. What about the whole area of population genomics, which has been so rich in the last three years or so in terms of genome-wide association studies and what that's told us about fundamental human biology, the etiology of disease in ways we've never understood before, what are the future uses of population genomics? Is there still a place, as some believe, for a large longitudinal study, for instance, in the U.S., that might follow 500,000 individuals over a period of time getting good genomic data about those people, but importantly, also good data about their environmental exposures and good phenotypic data that is really following their health course over a long period of time to understand how this complex interplay of genome and non-genomic factors, that is environment, how they interplay with each other to cause human health and human disease. What about the informatics and computational biology that's relevant to genomics? What new bioinformatic tools should we be thinking about building? What kinds of new databases and browsers, ways to use those through visualization tools and other kinds of techniques? The whole area of epigenomics, the way that the genome is modified, partly by environmental exposures and other kinds of things, how do we explore that over the next few years? The area of proteomics, I'm just saying not just how the genome functions, but the proteins that the genome produces, how do those function, how do they relate to each other? Chemical genomics, the idea of using large collections of small molecules to be able to both understand the way particular genes function, but also, very importantly, in designing new drugs for diseases. The genomics of good health. Of course, so often we use genomics to understand disease, but in fact, genomics plays a role in good health as well. What is to be learned, for instance, from finding numbers of individuals who have known genetic mutations that put them at much greater increase, or much increased risk for certain diseases, yet never develop those diseases? Why is that? Is there something about their environment? Are there so-called modifier genes? Are there other genes that play a role in these diseases that help protect those, even at an increased genetic risk from developing the disease? There's so much to be learned about that, about what it is that causes health. And in the end, that's what the national suits of health, we're not the national suits of disease, we're the national suits of health, and it's what everyone aspires to, is not to understand their disease better, but using that understanding to stay healthy. What about all the ethical, legal, and social implications of all of this, including direct consumer information distribution? How can that be done in a way that's most beneficial for the public? Again, getting back to public education and the implications for clinical research of all of this. What about the application of genomics to clinical problems, including rare diseases, also thinking globally about health, diagnostics, prevention, therapeutics, all of it? And this question of large-scale population cohort study is not just the one that I happened to mention, but how do we use other large longs, that have been around for years, many of these large-scale population cohort studies, how do we go forward with new genomics approaches to get even more out of these studies? I mentioned before that planning workshops, there's some workshops that have already been held sort of as part of the normal course of activity of life around NHGRI that are going to be of great use as planning process we knew, but that included a kickoff meeting actually starts April 2009, that was earlier this spring where we got a number of folks from across the NHGRI, but also some external experts that come visit us and help us think about these. And the rest of these should all say 2009 as well. This is probably the only place where the NHGRI has mired in the past for a year off on these slides. Well, actually some of these were last year, I'll take that back. The LC assessment panel, there was an assessment of the Ethical Legal and Social Implications program that's an important part of the NHGRI and past meeting the decade of LCME which happened some years ago. Both of those will play into this process. There was a meeting last September about social behavior research in genomics which is obviously very important in terms of exploring not just the present but particularly the future uses of genomics. Also a meeting last fall about health disparities, race and genomics. How do those things interrelate? Other ones, last October, we had a workshop on standards for quality of genomic data and messages and recent evidence for natural selection in the human genome. A meeting earlier this year, we call the dark matter of genomic association with complex diseases. That is the part we don't understand. How do we explain the unexplained heritability from genome-wide association studies? So I've mentioned that some people on the phone will know genome-wide association studies have been wonderful insights into heritability. How do we inherit risk for disease, et cetera? But in fact, as wonderful those studies have been, they don't explain most of heritability. So this workshop was to think about what do we not understand about heritability and how should we go about trying to understand it? A recent meeting about the future of sequencing and there'll be other discussions about that, of course. That's an important part of all this. What is the future of genome sequencing? Upcoming workshops that are already on the books, one that will occur this fall about the language of transcription workshop. How is the transcription of the genome really done? How does this work in a scientific way to better understand that, since that's gonna be such a key to understanding the way that genomics plays a role into health and disease? The undoubtedly will be other workshops that are suggested by comments that people give us to the four white papers and other kinds of thinking that's going to go on around here. We are pretty clear that one thing we'll want to do is at the end of this, or at the end of the planning process, sometime probably late spring or summer of next year, we'll be to have a large meeting, probably a couple of hundred people that we would bring together as we did towards the end of the process in 2003. Some of you may have been there at Erlie House, that meeting was held, to go over all of the input that's been had at that point and to help us digest it. It'll include a lot of NHRI staff, other people from around the NIH, but it'll primarily be people from outside the NIH to help us think about this information and help us try to bring that together towards a basically a document that can stand for all of this. And then of course, there will be other regular meetings in NHRI has, there aren't special workshops, but we have numerous ones of these during the course of any year. We will be having them this year and next year that will also feed into the planning process. So just to underscore currently, what we're doing is revising the white paper, or the white papers have been revised, but to seek people's comments. There are ideas about how we can answer the questions that are posed in these revised white papers. Those are posted online, just go to genome.gov. And the comment period ends by June 30th. We really invite both individually, institutionally comments and thoughts about how we should move forward in terms of answering these questions. If you need more information, you can email Susan Vasquez, who's my special assistant here at NHRI. Email, fax and phone are all provided then there, but you can also get to us through our web as well and contact us if you have follow up thoughts, questions, whatever about the whole process. So here's a picture of us going forward into the future led by our double helix. But you'll notice we've got a compass out trying to figure out our way. That's a surveying tool, not a bazooka, I would tell you in case you can't see it at your desktop. But we do need to figure our way forward and the more people that can help guide us, the better for all of us. So I'm gonna end there and see if we don't have questions or discussion. Turn it over to you, Sarah. Thank you very much. Yes, Dr. Gutmacher is correct. We would love to hear comments or questions from you all on the phone, or else if you'd like to post them online on the net portion of this webinar, if you would like to ask a question, I believe you can dial star one to get into the queue for the questions. So let's go to the operator and see if we have some questions in our queue. Once again, if you would like to ask a question, please press star one, one moment for our first question. This time I have no audio question. Okay, well, I have one question that has come into me throughout the talk. I have a few that have come into me. One of them is how the smaller communities, how smaller organizations can really get engaged with this process when they haven't necessarily had a traditional or well-established role at the table. That's a wonderful question. It's something we really invite. Part of the reason for our doing this process this way is not just to give lip service to being inclusive, but we'd like to reach out beyond the quote unquote usual suspects. We want to involve those who already feel that they are part of the genomics community, particularly organizations, but individuals as well. We want to reach out beyond those who have traditionally been involved in this because particularly as genomics gets more and more applicable to understanding health, to understanding some other things about who we humans are, it gets more important to have others besides those who've already been involved thinking about these questions. So I think there are a couple of ways to do that. One is to feel free to offer comments, thoughts about the questions that are posed. Even if one doesn't have to have a PhD in molecular genetics to feel qualified to offer opinions about this. And it can often be opinion rather than just sort of fact. It can be stressing these are issues that are very important to us. We would like to play a role in the future as you go forward thinking about them kind of thing. It can also be pointing out to us perhaps issues you don't think have been raised. Now maybe we are aware of them and just haven't made it clear on the web, but if particularly folks coming here from new perspectives who can say, well gee, we kind of think these issues or these questions are important. How come you haven't referred to them? That would be extremely helpful for us to see what are some of the thoughts that others have about new ways this could be applied, new implications it could have, whether they be scientific or whether they be societal. It's important for us to get some new thinking to make sure that we don't get too kind of ossified in our thinking and looking too narrowly because we understand that this has very broad application we think in biology, in health and in society. So people that can bring in new thoughts about areas that we ought to explore are very helpful. But also again, even if they're not new thoughts but simply to say yes, this question which is asked, we think this is a key question. You should really be exploring this or this is a key question and in exploring it you might think about these specific sort of subtopics within it or you might think about reaching out to these individuals or communities or organizations in terms of further work in this field, et cetera. So we're purposely not making this a very prescriptive process. That is we're not saying that your comments must directly relate to this, that or whatever. If they do directly relate to specific questions that we have up there, that's great. But if they don't feel free to send them into us and to participate in this. And as you do that, we'll be both including that in the information you send in in our thinking but don't be surprised if we reach back out to you to help us think about it. Great. So we have another question that has come in over the net which is do you have examples of successful community engagement and education ELSI initiatives? There have been a number of them over the years that have been very different in their pipe and scope, et cetera. There was the community of color, the, I'm trying to remember the exact name, and in Michigan Project several years ago, the University of Michigan spearheaded that was very interesting in terms of bringing minority communities to the table in terms of thinking about genomics, in terms of research, in terms of clinical applications, et cetera. There was one in Vermont that I happened to be involved in before I came to NIH in which the state of Vermont basically had statewide discussion about genetics and its applications. So there've been a number of ones that are sort of broad, they've been more broadly based. There have also been some in specific communities. Some of you may know that here at NHGRI we support more or less yearly something called the Community Genetics Forum, which happens at various sites around the country. We try to rotate it around the country in different years and partner with different institutions to try to create a conversation about not just the ethical legal and social implications of genomics, so clearly focusing on those, but also about some of the scientific and other implications as well. So there have been a number of efforts about that. If you want more information about that, there are a couple of ways to get it. One is simply to explore our website, which has examples of that, but the other thing to do would be to go to our website and look specifically at the part of the website. I'm trying to think if we can actually give you the URL for the Community Involvement Branch, the Education and Community Involvement Branch of the Office of the Director is really sort of our home for these kinds of projects. So it's also another home is within, if you go to our webpage and you look at the extramural research page, you'll find information about the LC program, the Ethical Legal and Social Implications program, they'll have such examples. But if you also go to, if you just go to the NHGRI website and then you, probably the easiest thing to do is to simply put in the Google search engine, ECIB for Education and Community Involvement Branch. And that will pull you up. It'll say something in fact about this webinar series, but it'll also bring you up to other information about the Community Genetics Forum and other information about basic community involvement in genomics. And it will also give you the names of folks in the Education and Community Involvement Branch. Our hostess for this session, Sarah Harding, is one of those and contact information. So if you want more information or if you have some thoughts, questions, whatever, you can contact those individuals for more information. So are there questions at all over the phone? I do have a question from Thomas Brewster. Sir, you may ask your question. Al, and this is Tom Brewster in Portland. Nice to say hi. Hi, Tom. Nice to talk to you after all these years. Yes. One of the questions basically, is there involvement of these integrated health systems models like Mayo and Kaiser? Because basically the direction of health care with health information systems in the patient-centered medical home involves specialists in primary care. Is there any involvement at this level because it's going to be critical going forward, I think? Yeah, Tom, if I understand your point correctly, it is hugely important. And there's a lot, there certainly have been the beginnings in the last few years about exactly the kinds of places you're talking about, large health care systems, really thinking about how they integrate genetics and genomics, not just into the specialty care, but into day-to-day care of patients. So for instance, many of you on the phone will be aware of something called the U.S. Surgeon General's Family History Initiative, which really focuses on a web-based tool that people can use to collect, organize, and share with others, whether they be family members or health care professionals, they're family history information, which we thought was a wonderful place to start because family history is kind of the cheapest and most widely available genetic test, in a way. And there are now a number of health care systems that are electronically integrating, importing that into their health care system, for instance. There are clearly other efforts going on as well to look at ways of really bringing genetic information into large health care systems. And a lot of it does focus right now on how do you gather genetic testing information and apply that broadly. Of course, eventually what one would wanna do is to have electronic systems as part of large health care systems that gather that information, but also help the busy clinician analyze the information and evaluate it, whether it be family history information or genetic testing information. And clearly gonna be important, if we're right, that we're only a few years away from being able to sequence anyone's genome for $1,000. And we hope through things like this planning process, maybe a little bit longer than that, but say within 10 years that we have a fairly good understanding of what a lot of that genetic variation means in terms of health risk, in terms of other things about one's health. If one's whole genome becomes part of the electronic health record, clearly the busy clinician is not gonna be able to go through the six billion base pairs of your DNA and figure out what all of it means. They're going to have to be systems in place within the health care systems that can begin to analyze that information to call to the attention of the busy clinician, which information is important, which information they can be sure of, which they need to repeat something to make sure that it's accurate, et cetera, et cetera. So yeah, I think the good news is that in recent years that's beginning to get attention. I think the bad news is there's a whole lot of work that needs to be done, both in large health care systems and in other settings to figure out how we understand this huge mass of information that's gonna soon be available and particularly how do we work with individual patients to use that information in a way that benefits health. One of the things that we undoubtedly will be supporting more and more research in by, I mean, the NIH in general, I think, is how to use genetic information to truly improve patients' health. Those of us who have been medical providers, as Tom Booster who just asked this question has been for some time, know very well that there's some patients, for instance, if we talk about a mutation in BRCA1, the gene in which we know mutations significantly increase a woman's risk for breast or ovarian cancer, that there's some women, if you wanna make sure that they will have yearly mammography, that they will make sure they do good monthly self breast exam, et cetera, et cetera, the things we know that makes sense epidemiologically. All you need to do is show that woman that she has a mutation in BRCA1 and she will do everything she can to optimize screening and follow-up to make sure that she has a good outcome. There are other women, it might be the sister of that woman we've just created in our minds, who if you wanna make sure they never have another mammogram done again in their lives, all you do is show them that they have a mutation in BRCA1 and we have good evidence for that. So the question is, how do we figure out, how do healthcare providers figure this out, how do we support the right kind of research to figure out even if healthcare systems can build in the infrastructure for gathering the information, et cetera, et cetera. At the end of the day, it's still gonna be the patient going over this information with their healthcare provider, probably also using internet-based tools and other kinds of things in today's world, but involving the internet, involving their healthcare provider, how do we do that in a way that actually influences health behaviors in a way to create better health outcomes? That's a huge area that we need to support researching clearly. Great. Any other questions in the phone queue? I have no additional audio question. Okay. I have one last question that has come in over email to me, which is just a very simple, practical, what really kind of impact will these comments have on this process? Well, I can tell you, we take them seriously. We don't, we certainly, for the first phase of the comment where we ask people to comment just upon the questions, where the questions, how could the questions be improved? We really did improve all the white papers, these questions based upon that input. For this part of the process, we're really gonna listen to these comments because again, we don't particularly care who makes the comment. We don't care whether you've got a PhD or whether you represent this organization, whatever. We're just after the best ideas. We're very happy to steal anybody's good idea so that we're gonna take these very seriously. Are we going to follow the recommended course of every single thing that's sent in to us? No, just as we don't follow the recommended course of every idea that comes up around NHGRI, but we are gonna take these very seriously. We're gonna look at them, we're gonna weigh them. We're going to, I think, I'm sure, one of the pleasures for us is we're gonna have some aha moments where we say aha, why didn't we think of that? Or boy, that's another way to state this. It's much more effective and much more useful. Or this is really something that's a good point we need to get some people together to think about that, whether it be by email, at a conference, whatever kind of thing. So I can assure you that this is not just some kind of government program to say we polled the citizenry and this is what they said. We are really looking, I mean, basically we're looking for good ideas. And if you can send them in, we will take advantage of them, I promise. I think we've got one more question. We have one more question that just came in. And that is, how is the NHGRI thinking about studying and interacting with direct-to-consumer services, like 23andMe, DecodeMe, Navigenics, Nome, and their nonprofit counterparts? Sure. And many of you will know this, that this is certainly a growing presence in the genome world over the last couple of years, direct-to-consumer availability of various kinds of genetic testing, most of it today being a so-called SNP base that is looking at single-nucleotide polyamorphisms or common variations across the genome and giving people reports about what that might mean about their individual health risks. Also, some of these offer ancestry information, giving people some idea about where their ancestors might have come from geographically, et cetera. We've, you know, this is a real part of the world. I think there are some people in the genomics community who would like to act as though these resources are going to disappear or something, but they're a reality and they're one, the growing numbers of the public are going to rely on. And I think it's important as genomics moves forward as a field that we think about how responsibly do we get information to the public in a way that informs them, that doesn't misinform them, but truly informs them and allows people to make more informed decisions about their lives. Sometimes it's not just decisions, but having more informed awareness about their lives. So I think that the research that we need to do includes clearly health benefits within the sort of traditional historic healthcare systems, but will be foolish for us to act and not in the public benefit, to act as though there will not be direct-to-consumer genetic information available. There already is, there undoubtedly will be more of it. So I think part of what our planning process, and more importantly, and along over this period, what our institute and other parts of the NIH need to come to grips with is how best does one wrestle with this? There are obviously hugely complex issues here. Some of them are ethical, legal, and social implications issues. A lot of them are scientific and straight medical issues, but those clearly is an area that we, I'm sure, will be engaged in, and I think the whole field needs to be engaged in, and trying to work together to make sure that information given to the public is as responsible and as useful as possible. And my email is heating up with these questions, so this is great, and we still have a little bit more time. This question came about what role you feel public health will have in this larger process? It's a very good question, a very important one. You know, a lot of times people talk about genomics and focus upon the individual patient, and that's hugely important, because a lot of genomics, excuse me, is about so-called personalized healthcare, and really understanding each of us as the biological individual that we are. That's a huge part of genomics. But it also is when we apply genomics, it's often going to be in a public health kind of setting. That is thinking not just about individual health, but thinking about community health and those kinds of things. A lot of what's been done in public health in the past has focused so much, as it needed to do, on environmental factors in health, be they part of the physical environment or the social environment, et cetera. But it's also true that public health is made up as well of the biological environment, and a real hope for genomics is that it's going to help us understand that biological environment better. I've made reference already, but maybe not as much as I should have, to this interplay between genetics and environment in terms of health and disease. At the end of the day, every human disease has both genetic and non-genetic, that is, as we geneticists talk about, environmental factors at play. And public health, in terms of really understanding public health, we need to inform those discussions by understanding both the genomic, the genetically based sort of biological health, but also the other things in the environment in which it interplays to cause health and disease. So I think, and I have great hope and reason to believe, that the public health community is making more and more use of genomics and thinking more and more genomically in terms of trying to make public health better. For instance, one of the principal reasons why we all tend with luck to live longer lives than our ancestors did is because of such public health measures as health screening. However, health screening the way we've done it has been a pretty blunt tool. For instance, an unanswered question in healthcare is should a woman in her 40s have an annual mammogram or not? And the reason why that question is unanswered is not because lots of right people haven't tried to answer and haven't done a lot of research to try to do it. It's because it all depends who the woman is. There are some women because of their individual biology, because of genetic variations that they haven't to have inherited have such an increased risk for developing breast cancer, perhaps at an earlier than typical age, that they should start having annual mammography in their 30s. Whereas there are other women that it does not make sense in a public health sense for them to start having annual mammography perhaps until their 50s. But we haven't been smart enough before to figure out which woman is which. So we've had to call it the sort of average, well, gee, maybe, maybe we should screen all women starting in their 40s. The hope with genomics is A, that we will understand the biology of breast cancer in ways we never had before. And that's more than a hope, we can already see that happening. But also understand the biology of the individual better than we ever had before. So that fairly blunt public health tool, mammography screening, can be made much more precise so that we can apply to the individual in ways that will be much more helpful, much more cost effective. And here obviously we're all talking about cost effectiveness in healthcare. It'll not just make healthcare better and more effective, but it'll make it more cost effective by figuring out more specifically what kind of healthcare makes what kind of sense, whether it be individualized sort of public healthcare measures, which are better, which make more sense based upon this sort of genomic approach. Great. Well, thank you very much. We are about at the end of our hour. So I wanna thank you all for participating in this webinar. We've enjoyed your questions and the discussion that ensued after this. I do, we do welcome you to post more of your comments more formally to get engaged with this planning process. You can see if you go, excuse me, to genome.gov and look more specifically at the planning process. You can view the comments that have already been posted for a variety of the white papers. Please feel free to add to those or to contribute. Again, Susan Vasquez is a wonderful contact to send other questions. The slides are backing up. So I, we will be holding the next webinar in a couple of months. We will please stay tuned as we develop that. If you do have ideas of things you would like to hear about from this Institute, be it research, policy, ethical, legal, whatever implications may be, please, you can let me know, but we're very interested to hear about that from you. So thank you again. Please enjoy the rest of your week and we will see you again soon. Take care, bye-bye.