 Good afternoon, and thank you so much for coming. As the President of Brigham Women's Hospital, I'd like to welcome all of you here today and welcome those of you who are by phone as well. It is our honor and privilege to host the Director of the National Human Genome Research Institute, Dr. Francis Collins, who is standing in today for the U.S. Surgeon General, Dr. Richard Carmona, who was sent unexpectedly abroad by his boss, the President of the United States. Today we're touching on several items. First, this is the second year of the Surgeon General's Family History Initiative. Second, the release of a new computer tool to help families organize their medical history information and to top this off, the Brigham and Women's Hospital Family History Project. So what is this? It is the vision of one of our most talented scientists who's sitting at our table this afternoon, Dr. Cynthia Morton. Dr. Morton, our Director of Cytogenetics, envisioned the opportunity to engage our hospital community in an important issue, one's family medical history. The family medical history, why is this so important? As healthcare providers, we see the true benefit, the ability to promote a conversation about one's health as well as about the health of your family with your primary care provider. The focus of the project is to encourage our employees to gather their own family medical history and then share that information in their own primary care setting at their own choice. Our employees will be able to organize their health information into a family tree using the U.S. Surgeon General's My Family Health Portrait. Dr. Kahnns will speak about this in a few minutes. All of the information that's gathered will be kept private between our employees and their own healthcare provider. The project will begin this month and it is voluntary. We hope that all of our 12,000 employees will be able to take advantage of this program and what it offers them in terms of capturing crucial healthcare information that can directly benefit them and benefit their family members. One of our employees who's participating in the project is joining us at the head table, Dr. Rick Mitchell, as a cardiovascular pathologist for 20 years, Rick's job is to deliver life-saving healthcare information to doctors and to patients. But as a dad and as a cancer survivor, this duty really hits home. Rick will share with us the steps that he's taking to build a family medical history that he hopes will help his two kids live a longer, fuller life. You will get a chance to hear his story from him this afternoon. I'm proud to say that our hospital is the first employer in the United States to get involved in such a project. When you consider the remarkable history of our treasured institution, we have been leaders in the exploration of medicine for generations. Consider some of our projects, the internationally respected nurses health study and the women's health initiative. Two programs that are still shaping the way that medicine is practiced today. We see that once again we can play a leadership role by allowing our community to help shape the future of healthcare in this country. Now it's my pleasure to introduce to you the director of the National Genome Research Institute, Dr. Francis Collins. Dr. Collins led the Human Genome Project, the successful effort to map and sequence all three billion base pairs in the human genetic blueprint. He is leading a wide range of innovative programs to understand human genetic variation and to explore genome function, the ultimate goal to improve all of our health. It is a privilege to welcome Dr. Francis Collins. Well, thanks very much, Dr. Gottlieb. It's a great pleasure to be here in Boston today. I'm standing in, as you heard, for the Surgeon General of the United States, Dr. Richard Carmona, who's been called to England along with Secretary Chertoff to discuss important matters about the war on terrorism with our allies in that country. I want to thank Dr. Gottlieb and his staff, Dr. Morton, Dr. Mitchell, and many others who have worked hard to prepare for today, and specifically for this exciting project that we're here to talk about, where we're partnering up with Brigham and Women's Hospital and their 12,000 employees to test out a really exciting opportunity, how to use family history in a way that adds to medical care in a fashion that should improve health, focus on keeping people well, and offer all of us, as we learn from this, a better chance to make medicine more personalized. Last year, Surgeon General Carmona declared Thanksgiving Day as Family History Day. He was very convinced of the notion that this is a time where people gather together to talk about their years' experience, and oftentimes also one of the few times where they're together to talk about issues of family life as well as health. And of course, it's also a day where people give thanks for good things that have happened, and one of the things we're all thankful for if we're fortunate to be healthy is for that. So the Surgeon General's Family History Initiative launched last year aimed to utilize the Thanksgiving season as a way to draw attention to the importance of collecting information about family history and then applying that for medical benefit. The initiative has a simple goal, to empower individuals to write down their family history so the family doctor can use the information to target health surveillance and health promotion programs on the disorders that are most likely to affect family members. Last year's initiation of this include the release of a software tool called My Family Health Portrait. A user could go to the Department of Health and Human Services website and download the software for free and run that on their own computer if their computer was one that ran Microsoft Windows. More than 360,000 copies of that tool were downloaded and 85,000 paper copies were also shipped out. And this was a great beginning and we were excited about the way in which this seemed to catch the imagination of many members of the public and of the medical profession, but much more needed to be done. For one thing, the first version of this software would only run on Windows computers so you were out of luck if you happen to be a Mac enthusiast or if you ran your own programs on a Unix box. So we're releasing this year a brand new tool which is now internet based. It is a new version that also has a number of new features which I'll demonstrate in a moment and it's available in both English and Spanish. So this is an upgrade of a significant sort and one that I think will increase the availability of this program to lots and lots of people and which has inspired this partnership with Brigham and Women's Hospital where all of the employees are going to be provided with the opportunity to participate in this exciting initiative. Let me walk you through what this particular family history tool, the family health portrait can do and we'll just go through some of the screens that you would see if you are logged on to the site. Now first of all, the URL for this site is up here as you can see. It's one of those URLs that starts out not HTTP but HTTPS. So what does that S mean? That means it's running on a secure web server. That means that this is one of those sites that has the same level of security as say a bank transaction and this is specifically being done in order to protect any risk of this personal information leaking out into places where it should not go. This is intended to be entirely private. So this is the first page that you see. You can see a bit of an introduction into what's going to be available through this software tool and then you can make a decision about what to do and that would either be to load a saved family history but we haven't done that yet so let's create a family history and I'm now going to take on the persona of Sally who's a hypothetical person who might be using this. So the first thing you come to then is to enter your personal information and Sally does that. She's 45. She weighs a certain amount and she's a certain height and actually Sally at the age of 45 has been diagnosed with diabetes one of the most common disorders and one that is getting more common all the time in the last few years and that's one of the reasons she's particularly interested in finding out whether this tool could be helpful in terms of predicting other family members that might be at risk or perhaps shedding some light on why she's been diagnosed. So if you go to the next page then Sally has the opportunity then to enter information about her own medical history and as you can see this site is divided up so that there are six disorders that are particularly focused on and I want to emphasize these are not the only six disorders for which family history is relevant. They happen to be six rather common disorders heart disease stroke diabetes colon cancer breast cancer and ovarian cancer. They also happen to be disorders where knowing you're at risk does allow you to practice certain important preventive measures and so our friends at the CDC who have been important colleagues in this enterprise suggested that these six ought to be highlighted to get people started but you will notice that down here in the lower left there is an opportunity to enter any other conditions that have affected Sally or her family members. Now in this instance Sally went through and entered the fact that she does in fact have diabetes and so this box appeared and she was able then to put down the age of onset because that's an important criteria to capture in a family history. Earlier age of onset oftentimes indicates a higher likelihood of a hereditary contribution and so she fills out this page and then goes on to the next one. Now the program will then proceed to ask her about other family members. We'll just go to the next page here which will ask her to say something about how many of the various types of individuals. She's an only child. She doesn't have sisters or brothers. She has two daughters. All of us have a mother and a father and four grandparents. People have asked what happens to people who are adopted. The point of the family history tool is to try to collect information about biological relatives but there's opportunities all the way along the way to simply say don't know if that individual is not aware of the information about a particular relative. So if you then go to the next here you can see that in this instance Sally's being asked to enter information about her maternal grandmother. Gene this is just one of several screens that would come up at this point for Sally to fill out. Turns out that that woman also had diabetes diagnosed in her 50s but not the other disorders. You might notice by the way that at this point Sally has not finished filling out the bottom two conditions. She didn't enter don't know or yes or no and we'll see in a minute that the program will remind her that that is in fact still slightly incomplete. Going on to the next one is about her father James who had colon cancer and there again you'll see that was entered by Sally because she knows of that but he wasn't diagnosed until he was 65 and so the age of onset goes in here but obviously colon cancer is an important disorder to be concerned about in terms of possible heritability so she might want to ask more about that in going to other family members. So after she has finished then filling out all of these various parts of the form and has all the relatives conditions recorded this then says congratulations you've created a family history and you can now go to the my family page which will show you something about where you are. This has a left side and a right side let's blow up the left side first. So this simply tells you what's your degree of completion of the form and remember that she hadn't quite finished with gene. Well that's why this bar doesn't look as though it's quite 100 percent and that would be a reminder to go back and fill that in if it's felt to be important. The right side of that same page then gives Sally the opportunity to decide what she wants to do next and oftentimes at this point people want to see what they have created and so let's go to the view reports part and so view reports gives you two options you can either have a report as a chart or as a drawing a drawing that a physician or a nurse would call a pedigree we'll look at that in a minute and you can either display the names of the individuals or not and for the pedigree you can also decide whether you want to highlight particular conditions and that includes the standard six conditions that you get asked about but also anything else that Sally has entered and so you can see she has entered other members of the family who had osteoarthritis blood cancer emphysema and asthma. Let's look first though at the rendition that you see when you click on chart and so this is the summary of the information that Sally has put in showing you who the names are of the relatives and what they've had as far as these six diagnoses as well as additional diseases also indicating the age of onset in a tabular form you might also notice the computer has calculated Sally's VMI a number that many people are increasingly interested in given the epidemic of obesity in this country and Sally won't be entirely happy with that number because that's not quite in the zone where one would want it to be. On the other hand if she decided she wanted to look at the chart form I mean the pedigree form the drawing she could then decide whether to highlight particular conditions let's assume she didn't so here is what it looks like printed out by the computer in the kind of pedigree form that often goes in a medical chart although frankly often drawn in a scrawl that's somewhat uninterpretable and probably not as complete as what Sally's been able to do because she's been able to take the time herself call up family members ask them about medical diagnoses that she wasn't quite sure about do this all in the privacy of her own home and be able to then generate a pedigree she can take to her physician and say here is my family history can we talk about this and the busy physician who has 16 minutes or less per patient to see all of the things that need to be looked at in an encounter now has this is a starting point instead of being expected to collect it de novo which frankly rarely happens anymore so in this instance you can see that the individuals marked with HD have heart disease the diabetics turn out to be both Sally's grandmother and her mother also turns out to have diabetes so you can see there is something potentially going on here in terms of hereditary factors here's the father with colon cancer if you wanted to highlight the individuals with diabetes you can do that through the program and it would immediately light them up so you can see the inheritance pattern and there are a number of other features that can be used at this point to highlight particular conditions in the family this is of course a fairly stripped down version of the pedigree but it's possible to add many other relatives and this is a new feature of the software since last year so you can in fact if for instance she was interested in figuring out did her father's colon cancer happen out of the blue or were there other family members with that she could inquire and then enter information about father's sisters and brothers and even about cousins down here to figure out if there is some kind of hereditary pattern and this is very relevant for the story we'll hear shortly from Dr. Mitchell so you could go back and enter that or not it's up to the individual to decide how deeply they want to go in exploring the family history now once Sally is completely happy with the information that she has put into this she can now save this data to her own computer this has been running on a server out there but it can now be downloaded to her own computer this walks people through the instructions of what they need to do with various thumbnails the pictures that they would see as far as screenshots of what would come up in order to make this happen that is readily done another feature that's been added particularly because of many requests about this over the course of the last year is the ability once you've loaded your family history and this is how you do that to also save the data as another relative so people who have gone to all this trouble are then asked by a sister or an aunt you know that sounds pretty interesting I'd like to have a copy of that so it's possible to then take that same information and save it relevant to that particular person as what we would call the pro band so they can take it to their physician or perhaps add to it themselves for other branches of the family that they know about so this can really become a living document that individuals can keep adding to all the way through there's lots of helps that people can use if they get lost or aren't quite sure how to use this here's an example of a help page that would walk you through how to do this loading of a saved family history and this is again the front page and let me just say one word then about privacy and security because I think that is a concern that everybody has about genetic information so even though this is a web based tool that has to run somewhere and in this case it runs on a government computer none of the information is stored or saved or recorded on a government computer computer nothing at all nada no personal information typed into the tool is ever seen by anyone except the person who's entered it and the only place it can be saved is on the computer and so while this is in fact getting passed back and forth over the web the security that's attached to this information is the same level used in bank transactions we do not expect therefore that there is a serious likelihood of any privacy violations so that's the tool that is now being unveiled for this year the second year of the family history initiative surgeon general Carmona being a big fan of this if he was here I'm sure would tell you that knowing your family history can save your life and there are lots of examples where that has been true where people by discovering of their own individual risks based on family history have been able to take advantage of interventions that they otherwise wouldn't have known about in a way that is detected a disease while it's still early and readily amenable to treatment why you might ask though is the national human genome research institute associated with all this high tech genome sequencing and hap mapping and all the other things that we have been doing to lay out those three billion base pairs of the genome why are we interested in a tool that seems so old fashioned family history well it's not old fashioned and it's not going to go out of fashion even when we can give everybody their complete DNA genome sequence on a on a compact disk and we're probably about 10 years away from that you will still want to have your family history integrated into health care decisions about what kind of preventive medicine you might want to practice and even if you had a mutation identified somewhere in that particular DNA sequence your family history is often going to be an important fact to tell you what the significance is we already know that's true in circumstances such as the famous BRCA one gene that is associated with breast cancer people have a mutation in that gene who have a strong family history actually turn out to have a higher statistical risk of getting cancer themselves then people who have a mutation in that gene with no family history there are other factors apparently at work so family history is not going to go out of style it's one of the most powerful ways to personalize your own medical care and best of all it's free you don't have to pay anybody to do some fancy laboratory test to get this data you can simply talk to your family members at Thanksgiving call them up on the phone sit in front of your computer enter this information take it to your physician and know that you are on the cutting edge of personalized medicine in the 21st century using this tried and true and very successful tool so we are excited about this opportunity and we're particularly excited about being able to partner here with Brigham and women's hospital and I'd like to say just a word about this unique study and then I'll introduce Dr. Morton to tell you more about it we really wanted to see how this tool would be used in a research setting by large numbers of people and we were delighted that the individuals here at this hospital came forward with a proposal and so we're funding this demonstration project to try to see what happens if the 12,000 employees of this 735 bed hospital are given the opportunity to utilize this tool encouraged to do so provided with additional resources to help them work through it if they don't happen to have immediate access to the internet how does this actually work and this is a daunting task lots of different individuals lots of different languages but from talking to the people here it's clear they thought this through in great detail and are prepared to make the most of what's really interesting opportunity so we're going to be watching this with great care over the course of the next year and I'd now like to ask Dr. Cynthia Morton who's the director of the site of genetics laboratory at Brigham and women's hospital also the editor of the American Journal of Human Genetics and the principal investigator of this study to come and describe the project to you Dr. Morton thank you Dr. Collins the Brigham and women's family history project is a dream come true for me as a Brigham and women's hospital employee through my job here as a medical geneticist I know well the fundamental role of family medical history in health care and now through the development of the surgeon general's family history tool this important aspect of family medical care can be shared with all of my hospital family together at Brigham and women's hospital we will take on the challenge of recording our family medical histories and sharing with our families friends and neighbors the news that knowing your family history can save your life in the coming weeks computer kiosk will be set up in the hospital to introduce Brigham and women's hospital employees to the surgeon general's family history tool paper copies to record family history information will also be available our Brigham and women's hospital genetics team including genetic counselors and medical geneticists will staff this project to support the effort to place family medical history at the forefront of health care changing the future of medicine for the global community is not something new to the employees at Brigham and women's hospital it's our daily work and now I'd like to have my colleague here dr. Rick Mitchell tell you the importance of family history to him thank you dr. Morton good afternoon my name is Rick Mitchell I'm a doctor a father and a cancer survivor I'm also human face for this initiative for the past 20 years I've worked here at Brigham women's hospital as a cardiovascular pathologist my job here is to provide my colleagues with the information that they need to take care of their patients people with heart failure and atherosclerosis even heart transplants and in that role I can truly appreciate the value of having critical health care knowledge at my fingertips but sharing and providing health care information is also part of my job as a dad when I was diagnosed with colon cancer earlier this year I knew I needed to learn as much as possible about the disease obviously this was my best chance of beating it but it was even more important in being able to help my kids avoid it I felt devastated when I was diagnosed if possible however I felt even worse for my son and my daughter the nature of my particular cancer is that they are likely at much greater risk themselves there is as much as a 50% risk that I have passed the cancer gene on to them now I was very lucky to be diagnosed as early as I was because the cancer could be removed before it ever spread however I don't want my kids to rely on luck I want them to be able to get early screening and preventative care that could potentially give them the very best chance to fight any cancer before it ever begins to bring them down and that's why the Brigham women's hospital family history project is important to me and to my entire family the simple tool helps my children and other relatives to be better informed and therefore to be better patients my three sisters have already been screened for the disease well ahead of the standard age of 50 gratefully they now know that they probably are not carrying the gene and that's a huge relief my son who is now 19 my daughter who is 17 also know that they will need to get cancer screening at an earlier age a little knowledge however can be immensely powerful and helping them to be proactive to take the steps to prevent disease hopefully knowing my history will help them to avoid the cancer surgery that I faced this last February my message to the fellow employees here at the Brigham is simple take a few minutes to fill out the surgeon general's health portrait online think about how much time you may take research a car before buying one in this day and age most people wouldn't even think of buying a used car without first checking its maintenance history or to see online if it had been in a car wreck most people wouldn't buy a new car without knowing its past performance history or if there was a history mechanical problems in a particular model it makes sense to at least apply the same due diligence to your health learn about your grandparents health your sister's health your uncle's health whoever passes information along to your kids our medical history is written in our genes and our family history holds valuable information that can save a life I've hopefully given my son and my daughter the information that they need to live a healthier life and you can do the same the biggest investment any of us can make is in our families and we can all live longer better lives and help our kids do the same simply by talking about our family history thanks thanks very much dr. Mitchell that concludes the presentation part of this and we're now opening the floor for questions we do have some members of the press on the telephone it will be helpful if those of you asking questions identify yourselves and those of us answering the questions do also so we are now open for whatever questions come to mind yes we have a microphone hang on just a second so everybody can hear Amalia Barretta from WCB channel five news I'm just wondering what the import is of Brigham and women's being the first as an institution to start this is it the hope that this opens the door for other institutions or companies to start this practice that would be our hope from the NIH perspective again we put out this particular program hoping people would utilize it but it's very difficult to collect information about exactly how people are you utilizing it what benefits they're achieving what questions they have having this kind of a pilot project here is going to help us a lot in terms of considering whether there are other modifications we might want to make and we would certainly welcome other possible participants in this kind of pilot effort but right now Brigham and women's is out there in front they have taken this initiative to be the first out out of the gate and we're delighted to have such a remarkable institution doing so given all of the medical strength that they have here as a follow-up yeah as a follow-up some diseases are difficult to know about take Alzheimer's for instance so let's say you want to know about Alzheimer's but it's a tough thing to know about what about handling something like that so the point of the family history tool is to collect the information about who in the family carries a diagnosis like Alzheimer's obviously that's not always a diagnosis that is easy to be certain of but generally these days it's fairly possible to make a concrete diagnosis of Alzheimer's if somebody who is showing signs of that disorder has been carefully examined the point of that then would be to get it on to the pedigree now what that means as far as somebody's personal health obviously Alzheimer's does have hereditary factors involved but it's not inherited in a strong sort of single gene fashion so it would increase somebody's risk to have a positive family history but it would be far from anything you'd call a certainty some people would like to have that information in order to plan there is in fact a genetic test that can be done to make a prediction about Alzheimer's risk but frankly very few people are interested in it because at the moment knowing that you're positive for that test is neither a way of knowing for sure if you're going to get it nor does it provide you with any intervention to reduce the risk so I suspect as people are filling these out that kind of question will come up maybe I should ask Dr. Morton if you get a phone call in your medical genetics group from somebody who has been filling out the family history and in calling around discover that there are a couple of relatives with Alzheimer's and they're concerned about it what would you want them to know I agree that it would be could be very useful for some family members to have this information and certainly the hope of our work in in genetics is that we will learn about the pathways and potential treatments and therapies for the future so I think this information is something that is really valuable in terms of being aware of what will happen in the future of medicine. This project is here for the long haul this is not something that's sort of here today and gone tomorrow your family history follows you wherever you go if you know that information and next week somebody comes along with a promising approach to reduce the risk of Alzheimer's for people with a family history then you'd want to know your family history you'd want to collect it now while people are still around 20 years from now maybe nobody will quite remember what happened Uncle Joe so all the more reason to take advantage of this today. Can I just ask one question of Dr. Mitchell Dr. Mitchell I'm curious to know how your children reacted to this and how they're taking what this information that you know now and that affects them. My son and daughter have actually taken this remarkably well I think in part and parcel they've grown up in a family of doctors and nurses and dinner table conversation has always dealt with disease on the other hand to have it so immediately put into their face that this is a possibility for them I think took a little getting used to but I think that they also realize that it's not a death sentence that by knowing about these things in advance something can be done proactively and my son said he's looking forward to it he's it's going to be an adventure so I've been impressed how well they've taken it. We'll wait for the microphone a second bet. My name is Beth Fimister I'm with the New England Journal of Medicine. Congratulations on the design of such a powerful tool. I'm wondering how you plan to measure the extent to which the project is successful. So I should ask the principal investigator because they thought a lot about this. Well we have several different types of surveys that we plan to carry out over the next year. We're very interested in knowing how the survey goes how the tool is perceived by the employees what the obstacles to participation might be for some employees who choose not to participate in the family history project. We're also very interested to know what if any impact this had on their medical care. So if they took this information to their primary care physician did it change any any management of their health care. In addition we're also very interested to get input from our physicians as to how this might have impacted their care of a patient. And of course not only are the employees of the Brigham and Women's Hospital many involved in being physicians but also their patients themselves. So we're interested to see how they use this information in their own family health care. So we have a lot of different endpoints that we plan to look at over the next year. I mentioned in future versions of this and we intend to upgrade this all the way along and each year have new features. We would hope to add a feature that would actually flag specific examples of family histories that would be high priority to bring to the attention of the physician. At the moment that's not in here and obviously you want to do that with great care so that you're doing this with the most accurate information and not misleading people. But obviously it would be helpful to put some sort of interpretation on top of the information that's being collected. Once we're quite clear about how to do that and our friends at the CDC who've been working on this are piloting that kind of an interpretive step in the future. Right now though the interpretation is going to very much fall upon the shoulders of the primary care physicians and the medical genetics team here as they answer questions from people who fill out these pedigrees and then wish to know exactly what they should make of them. Dr. Mike Rosen WB 11 New York and Dilly Healthy National Medical Feed. You know it used to be that doctors were the ones to take the family history. That's what I learned in medical school. Yeah. Why do we need this initiative? Is it that doctors are really not doing their job or did not have enough time to do their job? It's a great question. Yeah I learned in medical school to take a pedigree as well and as a geneticist I actually took it seriously and made it a major part of my interaction with patients but most primary care physicians don't have the time nor do they necessarily have the training to know exactly what things to watch out for. We still I think teach pedigree taking in medical school rather poorly in terms of what you should be looking for and what kind of information is going to be useful. So there's a serious issue in terms of this is an incredibly valuable tool. We haven't used it very well. We're using it even less and there plenty of surveys to show that with the pressures of managed care taking away any opportunity for this kind of an interaction. It takes 15 or 20 minutes to collect a reasonable three generation pedigree from a patient you haven't seen before and frankly the person sitting in front of you is often not quite sure what really happened to grandma at that point because they haven't necessarily had the chance to prepare for it. So you get a pedigree that's often truncated if you get one at all and it may have inaccurate information. This is a way to try to empower the people who are going to be most affected. The individuals whose health care we're worried about to do this themselves. I think they'll do a better job and this fits very nicely with our whole sense that we ought to be empowering everybody to take larger responsibility and get more involved in their own health care particularly when it comes to prevention. And a follow up. What is your long term goal is your goal to maybe have kiosks in every doctor's waiting room while they're waiting for their appointment that is half an hour too long and get them to actually fill out their family history to get every American to do this. Is that what your vision is that we've talked about that and that might very well have some advantages. The disadvantage there is again people may not have the information right there sitting in the kiosk. We'd rather have people do this taking their time talking to their family members around the Thanksgiving table really collecting the information that's out there instead of being forced to do it in a healthier, skelter, hurry up way. But yeah our goal would be to empower every American to be able to collect the information, get it into a forum that can be actually transmitted to an electronic medical record, another exciting opportunity that Brigham and Women's is looking at and then have this become not just an afterthought but really a standard part of the preventive medicine medical record. And the final question would be clearly there's a link between the family history and genetic research. So are you going to try to link up people with family histories with genetic studies and try to make a match? I don't think at the moment there's an idea here that this would be a way of identifying research subjects. It's after all completely private information between that person and their caregiver. As we mount large scale studies of disease and obviously some of the ones that were mentioned by Dr. Gottlieb have been pioneered here, it is likely that this kind of family history tool might get integrated into those research studies. But again, nobody should worry that they're going to get a phone call after they fill out their family history and some researcher on the other end is saying, I'd like to enroll you in my study. That connection is not happening. This is private information. But could you flag them? Could you give them the information? If the program flags, as you mentioned, a significant family history, let's say for colon CA, then you can send them information saying the flag would then feed them information about studies underway. I suppose that's potentially possible. Again, I want to worry a bit about any kind of sense of coercion that people are expected now to sign up for the research study. Information is good as long as it's clearly being provided on a voluntary basis. And by the way, this whole program is voluntary. No employee of Brigham and women's is being required to do this. This is a program that people are given the opportunity. If they decide they don't want to, they don't have to. We have people on the phone. Hi, yep. Hi, Jessica has some from the Boston Herald in terms of collecting medical information from your family. Ideally, how far back do you go and do you include cousins and aunts and uncles? So I'll answer this is Francis Collins. Since you're on the phone, you can't see us. And then I'll ask Dr Morton to see if she has a different view. My view is the further back and the further to the side and the further down you can go the better. The more information you can collect, the more your pedigree is going to provide you with clues of important connections. Recognize, though, that your own risks be diminished as you go further and further away, your first degree relatives, your parents and your siblings and your offspring are going to be the most important when you go to second degree relatives like grandparents and aunts and uncles and so on. Then the information becomes somewhat less important. But there are certain types of inheritance that can, for instance, affect only males or only females, where you can in fact learn quite a bit by looking at a broader pedigree than just that nuclear family. So I would encourage people who decide to use this tool to go as far as they are comfortable doing so with the time they have available and certainly not to just settle for the first degree relatives, you ought to at least push pretty hard into the second and maybe the third degree. Cynthia, what do you think? So I agree and I think one thing we haven't discussed today is that actually collecting your family history can be fun and this is something that you can do with your children. In fact, maybe the children are better at operating the computer than some of the adults. But I think that it's a fun family activity and including the whole family and in the pedigree makes it even that much more fun. Other questions from people in the room? Can I make one other comment about Dr. Mitchell's presentation? I think that is a very good example of how family history can be life saving. The statement that the surgeon general likes to make, knowing your family history can save your life is literally true for lots of people, particularly for conditions like colon cancer, because there is a condition where cancer doesn't spring all of a sudden one day from a normal cell to becoming an invasive cancer. It takes years, maybe even a decade or more, going through these steps of initially a few cells that aren't quite right and then a polyp, which you can see through the colonoscope. And then ultimately, many years after that, beginning to invade the wall of the colon. So if you know you're at risk because of a family history and you take advantage of colonoscopy, which is a very effective way to find those polyps while they're still small and easy to remove, this can save your life. So this is one very good example how just this simple tool, this free information about your family history, factored into your preventive medicine plans can as your hearing for Dr. Mitchell's kids provide an opportunity to save your own life. That's what we're really here to talk about today is a chance to empower people to do just that. Here in the genome era, we'll be adding lots of other molecular information to that. But the family history will remain the bedrock of the way in which we predict heritable risks of future disease and the way in which we use this to keep people well. So this is a great opportunity. And again, thanks to Brigham and women's for taking on this exciting pilot project opportunity to just see how this works. If there are no other questions, then I think we can conclude the press conference and I think all of us are available for any of the members of the press who wanted to talk one on one with any of the members of the panel. Thank you all very much.