 It was a news story and they interviewed a mom who had two sons, her husband had died of Huntington's disease and she had two sons and they asked her whether or not she wanted to get them tested and she said that she did want to get them tested and one of her reasons was because, and she said this in a joking way, she only had enough money to send one of them to college. Now the last thing I'd like to say is that as we get these genetic messages there will be ethical considerations that will come up and in sort of helping to lead this program I want to place considerable emphasis that as we accumulate this knowledge that the public is protected from misuse. The screen kind of went black at that point and I immediately hit me and I said there's a lot here. The fact that genetic information is inherently predictive so that, you know, our DNA tells us some things about what may happen to us in the future. I think from the very start NIH should initiate discussions so that this knowledge is accumulated. The public is prepared to deal with it. There's something here that needs to be talked about, that needs to be brought out, that there are implications of genetic research that maybe go beyond the ways that we typically think of science and technology and the integration of those sciences into clinical applications. When Jim Watson at his press conference announced becoming the director of the then office of human genome research, kind of sprung on the NIH administration that he was going to devote a certain fraction of his budget to thinking about the ethical and social implications of doing the science and applying the science, that seemed like it was kind of a natural decision to make. I thought that Jim Watson really was the only human being on the planet that could have done it because Jim had the most impeccable molecular credentials. Now, nobody would accuse him of being a soft scientist. I thought it was a great idea that Jim Watson saw at the very outset the need to spend money thinking hard and seriously about legal, ethical, and social issues. The LC program was established at the beginning of the Human Genome Project to basically anticipate and address the ethical, legal, and social issues that would be coming up as a result of the genetic research to try to anticipate them before they actually arose so that we can come up with policy options to address them. And I thought it was about time. Basically, almost from the beginning, five percent of the extramural research budget at the Genome Institute has been set aside for the LC program to conduct this kind of research. The LC research program since 1990 has a cumulative budget of about $300 million, and that goes through 2012, so that's 22 years. Over that time, we've funded 470-ish individual projects. A lot of the research that the LC program supports is really geared toward providing sort of an evidence base on which we can develop really good policy options to address these kinds of issues. Both policy options for the research community in terms of how the research is conducted, policy options for the clinical community in terms of how the information is used in the clinic, and also broader social policy, the ways that genetic information can and will be used in various other parts of society. It supported the ability to study those questions empirically, quantitatively, qualitatively, and with that, I think that's enabled the science to move forward without being subject to moratoriums. The LC program is really a research program, and so we fund research that informs those discussions. I think the discussions take place naturally. People are concerned about these issues, and what the LC research program does is it actually funds researchers to produce data. The availability of research funding made it much more possible to pursue many LC questions empirically, and that has added in a very important way to the kind of data, to the richness of the data we have available to think about what we call LC questions. I think the LC research program is a model for NIH. Supporting research is really just a part of what we do in the LC program. The other big part of what we do is that we really serve as sort of LC consultants to the other people in the extramural division at the Genome Institute, advising them on a lot of the big community resource genomics projects that are underway. Some examples would be the International HapMap Project, the Thousand Genomes Project. Now some of the Common Fund projects that NHGRI is heavily involved in. I think the LC program is often called on to provide expertise in the development of new projects, and I think that's become much more prevalent over the last several years. The way it usually works is one of the program directors who's handling one of the projects, be it HapMap or a human microbiome project or Thousand Genomes, actually approaches one of us and says, you know, I think there may be an issue here that might be problematic and we'd like your input on how to handle it. I think that LC issues are actually really accessible to members of the general public, perhaps even more so than the more technical issues around genomics research or biomedical research, because people, I think, have an intuitive sense of the existence of ethical questions and perhaps have had their own experiences that lead them to raise those ethical questions on their own. Everybody has, I think, a tighter grasp or a more intuitive grasp, I think, many times of what we call the LC issues than they do of the science itself, although they immediately see the linkages between this fast movement of the new technologies and the ethical issues that they're going to pose as you use those tools in the real world. And a lot of the questions come up because for both the medical conditions and the things that we think of less traditionally as medical conditions, they're very hard to define. So it's hard to define things like intelligence. What does that mean? They're going to find that the questions they're going to get asked are not how do you sequence DNA, but how are we going to make sense of all that stuff and if this DNA stuff really matters, does it mean I'm going to get sick or, and if I'm going to get sick, how am I going to know that and who's going to tell me that? I think a lot of the questions that are raised about genomics and its application and research generally are more, perhaps more pointed when you talk about traits such as behavior which are sometimes thought of as being part of health care and sometimes not. And so one of the reasons why we're interested in behavior defined broadly is because the ethical issues and the social issues. How much do people understand about LC issues? My sense of it is that there is a lot of common sense understanding of the difficulties that we deal with in LC. There's a lot of intuitive thinking about it, not necessarily informed by a lot of sophisticated science understanding, but a common sense understanding. That's another legacy of NHGRI is that when you do all this super cool science, you have a research program to think about it and also a social network that connects that research to the people doing the science and doing the applications and doing the translational work. I don't think other parts of NIH or other parts of the federal government have done as good a job of that as NHGRI. NHGRI has played a tremendously important role, I think, in research around bioethics, around policy relevant questions, around social implications of science. By having a designated LC program, they created an opportunity for researchers to pursue questions, but I think equally important to expand the scope. I think the greatest success is really establishing this community of researchers, establishing the expertise in this area, because I think that expertise, regardless of the research that's done, is having a big impact on genomic research and I think on all research. I think the Human Genome Institute has had a critical role in creating this community of scholars now going into its second generation, as our trainees come online, of people who take as their academic vocation paying serious attention to the questions that genomic research raises. The NHGRI and the NIH are seen as the international leaders with respect to looking at the ethical, legal and social implications of genetics and genomics. We set the bar for the world. So in a way, the U.S., probably without being fully conscious about it, what became the NHGRI also became the model for how to do LC research at these other places all over the world.