 All right, thanks. So this is where we were around this time yesterday. We had heard a number of international projects. I was going to go through the things we heard about this morning, but I thought since we're kind of all focused on the working groups, let's do that first and then we'll go back and kind of recap a few other things. So as Jeff said, we came into this meeting and nobody seemed to object to the idea that we might come out of it with some kind of an international steering group and working groups underneath that. The working groups that we identified for this meeting are these five and they're obviously the ones that we've talked about. I think the question here are these the right ones and what did we miss? Is there some other group that we need to include here? And I realize people are tired. None of this, as Jeff said, none of this is binding and we'll be sending you summaries and things to react to, please do respond to them, you know, when you've awakened and that. But at least for the time being, it seems like this is a reasonable framework to work around. As Jeff said, the leadership of this must be multinational if this is to be a global effort. You probably didn't notice that the leaders of every working group were American. We don't want that to be the case here. Pardon me? Yeah, Mark did try his best English accent and I don't think it fooled anyone. So, yeah, that's right. So we do need volunteers to take some of the leadership and there are a number of very enthusiastic people in this room, we won't pin you down at the moment, but please give some serious thought to taking on leadership. I think we'd probably want to have co-leads so that there was more than one person you could kind of back each other up. One of those does not need to be American. You know, really, this is something we want to be a global effort. What might, if we have an international steering group, you need somebody, if you've got a number of working groups, you need somebody that kind of keeps them on track and watches what they do and interacts among them and that sort of thing. So we might have a steering group that probably would not be a committee of the whole, but perhaps a smaller sort of executive group that really would just kind of monitor what's going on, identify directions, maybe facilitate communications and interchange. And actually, as Jeff and I thought about this, there are a number of ways we could facilitate communications, the observatory that was mentioned sounds like a wonderful thing and we need to learn more about that. But should we have websites and information clearing house? Should we be pushing notices and news releases? We heard this morning that some of the news releases that came from NHGRI would have been very helpful for you guys to have heard about in other parts of the world so that you were prepared for them, et cetera. A newsletter, should we have a repeat meeting? And as we thought about this, probably it would be useful to have a communications working group or some other kind of synergy working group and that. So that seemed to us to be something we would also want to add in here. Would there be any objections to that? Does that seem like a reasonable thing to do? Yes, sir. I would just suggest that part of the mandate of that communications group would also be to liaise with other organizations that have overlapping mandates. I mean, there's Global Alliance, there's Eardict, there's ICGC, et cetera, et cetera. We're creating another thing here and we want to make sure that we don't duplicate too much and we also harmonize what we're doing. Great point, thank you. Tim, did you have a point to make? I'm sorry? Okay, I think that's the right spelling. So, okay, great. So, communications working group, so we'll add that in. And then we tried to capture what seemed to be the top ideas although despite, you know, Mark was valiant in trying to identify as to the rest of you. I'm not sure we got them quite as clearly laid out and obviously even today's, you know, the first group, you probably want to give some thought to that as to whether those were the top ideas. Laura, I apologize. You know from preparing summaries like this that the last group is the one that you don't capture because you're madly trying to put your presentation together, so hopefully we'll get those from you. But it seemed as though there were probably two, I wanted to put them all on one slide so that's why they're kind of smashed together like this. But these seem to be the main ones. So, what I'd like to do now is really to get sort of a show of hands of people who'd be interested in working in this so that we have kind of a feel for what we might be able to move forward quickly at least with the folks in the room. So, we're gonna try this and see what happens. So, in terms of defining key elements to be stored in the EMR, who would like to help with that instead of the individual ones? We could do that. So, how about IT, who would like to help with that? Okay, so we've got about six people so I'm gonna just give myself some notes here. All right. And then in education, who'd like to help with that? Okay, super, thank you. Three, thanks. In evidence, who'd like to help in that area? Evidence generation? Don't be shy, there you go. One, two, let's be more. Evidence is hard, all of these are hard. Pharmacogenomics? One, two, three, four. Oh, pharmacogenomics is hard. All right, so four for that, super. Okay, that's very helpful just so that we have a feel. But, oh, sorry, okay, cost assessment. And this isn't that we would go forward with it, it's really just to get a feel for, do we have a critical mass? Okay. There's some overlap also, one of the important elements. Right. Evidence generation. Yeah, absolutely, good point. So how about? And every one of the groups. Yes, yeah. Education will be more than that. Right, right. So how about the policy area? Two, three, four, five, six, good. And one for George. Oh, okay, great, seven. Super, okay, that's helpful. And I think something we also ought to keep in mind is that probably we can't move forward any of these areas without the others. So they probably all do need to move forward in some degree together, because it sounded like much as was discussed within the working groups is that you, as Bruce was describing, you can't have really great geneticists if nobody refers to them and you can't have wonderful providers if they don't have anybody to provide counseling and that sort of thing. All right, let me go back to this then. All right, so I think those were the main kind of outcomes for this. We'll talk about next steps in a second. I did want to just go to, let me just stop for a moment. Anything else about the working group summaries, the tasks that we might go forward with, that sort of thing, or missing? Could you use a microphone, please? This is a good time to ask this question or maybe you could do it at the end. But I mean, one of the things I think would be very helpful to hear. People that are in this room the last two days just happen to be people that we were able to figure out to invite. And that happened to be able to make it on the dates that we picked that were available. But we are quite sure there are a lot of people out there that would be incredibly interested in these topics, probably to be very active, that either we failed to identify or that we were successful identified but couldn't make it to this meeting at this moment in time. What's the mechanism by which we can network and capture and engage those individuals, especially from other countries that we completely missed at this particular meeting? So, might that be something that the communications? Yeah, perhaps, or? Or communications group. Something simple would be to ask this group to recommend others to be part of this. So, a simpler task, at least an immediate one, was if any of you know of individuals from either your own organizations or countries that you've worked with that aren't represented here to email Terri or myself with the names of those individuals and we'll be in touch with them. Thank you. Okay, so let me just identify other members. Okay, so that's that. Products, we've talked about that. We've talked about that probably before. Okay, good. And then going back then to what we, a little bit about what we heard this morning. This Global Medicine Alliance was a really neat idea. It's a shame that George had to leave, but it was very cool and in many ways they identified, I think many of the components that we were talking about here, that we needed to do. And what I think struck many of us was that they seem to be working on a smaller scale so that they're potentially more nimble and able to address things. And this reminded me, especially because we're late in the day. In the late 60s, there was a little film clip put together called Bambi Meets Godzilla. And the reason I raised this is that we wouldn't want to get a huge group or developed countries that have policy and regulatory issues that are a major concern to really kind of squash this. So those of you who are not familiar with Bambi Meets Godzilla, Bambi was a Disney movie that many of us grew up on. We're totally traumatized when Bambi's mother died, et cetera. But, yeah. What? That's right. So if you haven't seen this, you can Google it and pull it up. Yeah, that's right. So the way this film goes, there's very soft music playing in the background. This is Bambi and that's Godzilla. And that's basically the end of the film. And we want to be sure that the same thing doesn't happen to the Poor Global Medicine Alliance who seemed to be getting along just fine without us, but we could really use some of their help. One of the things that George suggested to us was potentially some of the breakout groups might want to write a short report for, he had mentioned a special issue of personalized medicine that they were putting together and might there be some of the breakout groups. I think policy was the one he was most interested in, but there might be others as well. So something to think about for you guys. When we heard about newborn sequencing, one of the key messages from that was the idea that phenotyping data are not gonna go away just because we have genotyping and that they need to continue to be used together. And we want to be careful in any of the kinds of projects that we're doing to recognize that these are additional data, they're not in any way meant to be replacement data. So that seemed to be a key point. And obviously there were some visceral reactions to some of the regulatory issues that have been raised in using new technology, but we need to recognize that they will be raised and we're gonna have to deal with them. So that was that. I thought this was an excellent point about press releases and things that happen in the U.S. have implications overseas and is there a way for us to improve the communications with you? And so I've been having an e-dialog with our communications group about how best to do that. And maybe one of the problems we have is there are embargoes and other things that we can't break unless we're dealing specifically with press organizations. But maybe there's a way through a newsletter or a website or pushing emails to you or something saying this is coming out. You know, you should be aware of it. I see some nodding around the room. Is that something that people would agree would be useful? Okay, great, great, okay. And then there was interest as well in the potential for some of the international pilot projects to maybe join some of the existing networks and it doesn't have to be NHGRI programs. There are others that are going on as potential affiliate members. So that seemed to be a takeaway from this morning too. Any other, anything that anybody disagrees with in what I said so far? Okay. And anything key to add to that? No? Okay, we're almost done guys. And so then this brings us to kind of next steps. Yes sir. Come back to the previous one. Please. It's about international. Could you please, I'm sorry to make you get up but it breaks up the blood clots so it's good for you. Sorry. If it's about international projects, I think also international guidelines. We should be working harder on putting the guidelines together at the international level. And pertaining specifically for genetics and genomics. Yeah, whatever. Oh, and Godfrey, all right. All right, Godfrey. All right, thank you Godfrey. We will, we'll write you down so that's wonderful. Okay, good, thank you. Anything else? No? All right, let me just fix the spacing on this just a moment here. Oh, that's not gonna work so that's fine. You can still read it. So the next steps, what we generally do with these meetings, this has been web-streamed and as soon as we can get the video presentations which usually our communications group is incredibly fast at this. And within a week, probably faster than that, they will be up on the Gene at the NHGRI website. We'll also post the slides. So we'll capture all of those including these summary slides. We will draft a summary, actually that's Jackie and Shane. We'll draft that and we'll put it together with Jeff and me. A summary that would probably be on the eight to 10 page length and then a much brief or executive summary on the one to two page length. We'll distribute both of those for all of you or make them available so that you can comment on them because we wanna be sure that we're all in somewhat agreement as to what was said and what happened here. We'll draft a white paper. We talked about this, I think initially, coming out of this session somewhat like the implementation roadmap thing that we talked about before. We have to be careful in many ways not to sort of duplicate what's already been said in many of these meetings come up with the same barriers and that sort of thing. But kind of what's unique about international settings that we need to be aware of, obviously, their ancestral differences, their cultural differences, those kinds of things. What we would propose is that the people who presented and those who were breakout leaders, I think that captures just about everybody who had a major that they be the authorship. We recognize there were other people here but just to kind of make it a manageable group. And it's difficult, I think, to object to that if you weren't one of these people. If you have any concerns about that approach, please just send Jeff and me an email and we'll figure out a way to deal with it. Does that seem like, I don't see anybody, nobody's throwing anything at us right now so hopefully that will work. Not quite sure where it would go. Yes, sir. You're gonna throw something at me? Oh, okay. Oh, you're coming to the microphone. I didn't wanna yell that for not using the microphone. There was some discussion within the working group about creating a publication around that specific area. So I assume that if that does go forward, we just run it through, make sure you guys are aware of it and all that kind of stuff. Well, and I think we would want to share it across to the degree that everybody wants to look at it. Right, but there's no pushback against the idea. Not at all, it would be wonderful because there's no way that we can get at the richness of what happened in the working groups and we certainly want to capture some of that so that would be great. And I think the other thing to keep in mind is at least the journals that we've dealt with on meetings like this, they really don't wanna know what happened in the meeting. What they wanna know is what's important, what are the key things that a group of smart people got together and agreed should move forward? So it can change from what we said in the meeting. We should all agree on it afterward. But somebody told me once that a good meeting summarizer makes the meeting sound better than it was. So that's true, it would be a challenge indeed. But as we move forward with these, don't be afraid to embellish and improve and that as long as everybody agrees. So draft a white paper or presenters, okay. All right, we need everyone here and we will send out a list of action items probably very soon because we want action items to have action. So we need people to volunteer for working group leadership and to be members of working groups and we may tag some of you but really we would love to have volunteers. So that again would be something I think if you email Jeff and me, is that okay? We will need at some point then to identify steering group and working groups can be in them in some way. We should consider a follow-up meeting. There seem to be interest in that. Is there still interest in that? I think the September meeting in Greece, yeah. Terry, hand in hand with that point, although it would fit to any of these, I just want to make the point that NHGRI convened this first meeting to get this off the ground but by no means do we intend this to be an NHGRI driven process. We welcome other agencies, other funding agencies, other organizations, other international groups to join us as the organizational body. This is not saying we want to own exclusively. We invited various other agencies we thought of but then there's others that aren't represented. I mean again, we really are looking for partners in this. It's not saying we want to own all by ourselves. Not even appropriate for us to do this in the long run. Excellent point. Yeah and I think too, we really don't have the bandwidth to do this. We're a small institute. Eric didn't tell you that we're 1.6% is it? 1.7%. 1.7% of the total NIH budget. So we're teeny. But we do have, and I didn't get a chance to introduce Andy Friedman and a couple of the other folks from other institutes, NCI and that who were here. We have other partners throughout NIH and we also need you guys to partner with us. Yes sir. Yeah there are a couple possible venues where we could have some follow up for this. One is that Canadian meeting that Pierre mentioned to bring all the Canadian groups together, that's going to be in April. And I can, if anyone's interested in using that as a way to get together again, please get in touch with me. And you're Paul Lasko. I'm Paul Lasko, yes. And the other possibility is that the Erdick Executive is meeting around the European Rare Disease Meeting in Berlin. I think that's May 9th and 10th. So I'm sure we could work out some sort of satellite workshopper or something. It may be a little soon for those, but yeah, but those certainly would be places where people, like-minded people could get together and identify additional things. Yeah, not to bring this whole group to either of those meetings. All right. I just want to raise a question, because as soon as word get out about this meeting has taken place, there is a number of other organizations in Europe. I think we have five organizations dealing on different aspects of personalized medicine, predictive medicine, et cetera. Industry associations, et cetera, who I presume would like to engage in this work. So how have you thought about how to deal with that? This could eventually grow as a very, very big endeavor to include industry and all kind of large societies, et cetera. But in many ways I think for the field it would be a good problem to have. I would suggest that, well one is that I would suggest that we do communicate about this meeting, not the white paper, but the executive summary, I think every one of us should take those back to whatever leadership we feel accountable to so that they understand that this is happening or even distributed to other groups that they think might have an interest. And in order to keep chaos from happening I think we need to try to, at least for the time being, establish, since we don't have a structure yet, the structure is Terry and me for the moment, try to funnel that information back to us. When we have a more organized group of, let's say call it a steering committee or oversight group of an international membership, that would be the group that would receive and hopefully coordinate some of these interactions you're talking about. But that's, so that would be at least a short term plan and we'll have to evolve that plan as we see whether the level of interest you forecast happens, does happen. Last point, can I make? Please. I think after these two days' discussions and deliberations, I feel that it would be appropriate and useful to create an appropriate body or platform in order to address all the issues because that is extremely important. And the kind of issues we are addressing, the creation of that body is very important. So this is my request. So maybe you can go on voting or we may think what should be the structure, the, its terms of reference and that sort of thing. Thank you. If I might just ask you, when you see, you might just go on working. So the go on working is to collaborate with those. Because why I say this? Because you have working groups, you have steering committees, but there must be some apex body. That is very essential. That is essential, yes. Yeah, okay, no, excellent point. If I understand what you're trying to suggest is that we make sure that whatever is created out of this has a global accountability of some sort. I mean, and it's not decoupled from whatever else is going on. And I think we completely agree with that. Okay. Other comments or suggestions? All right, if I'm just gonna capture that global accountability. Okay. I think that's it. That's my last slide. So at this point, I guess we're pretty much done. We have a reception coming up, which will be outside. But I think the point I'd like to make, and I'll let Jeff close, is really this has been a wonderful two days spent with y'all. And people have worked very hard. And here we are at five to five, or God knows what time it is in your home country, and so many people are still here actively engaged. So this is terrific. We wanna continue this, we wanna capture it, and make it something that will use genomics to improve healthcare, which is why we're all in this business to begin with. So with that, give yourselves a round of applause. You did a great job. Thank you.