 Okay. We have reached the ever popular council initiated discussion segment of the council meeting and for the new council members, let me explain what this is because it's not inherently obvious from the title. The agenda for both the open and closed session is completely determined by NHGRI and you're very patient listeners as you sit here for two days and do exactly what we ask you to do and exactly when we ask you to do it. So we're mindful of the fact that we have to give you an opportunity to take control of the conversation. So this is your opportunity to bring to our attention reports that you would like to hear in the future, speakers you would like us to invite to come and present either an open or closed session. We have even in the past had an FOA be birthed as a result of a council initiated discussion where someone said you really need to think about conducting research in this area or using this particular format or mechanism. So it's a time when we basically turn the microphones over to the council and ask what's on your mind? Are you hearing fears and concerns or misinformation coming out of the community? You're actually, you're advising us but you're also representatives of the research community. So if you think there's messages that you're hearing from your colleagues that we should be aware of, this is your opportunity to bring it up or other things you want to tell us, including things you want to hear about a future council meetings and the like. Joe and then Carol. I'll just bring up what I just mentioned to Eric a moment ago and it has to do with the discussion that's ongoing in the community about the reevaluation or the continuing evaluation of the role of models and what stimulated me to think about this is what Howard said about the potential reluctance of very powerful tools to be able to understand human disease and what it might take to get folks more engaged in the basic component and realize from the basic side that maybe everything isn't going to function the same in people. So there's been a lot of debate. I know Eric, you've written about model organism databases and Francis Collins has talked about model organisms and that's mostly around funding. But I think really the underlying issue has to do with, you know, really the value or, or, or assessing the value of current models or other models that might be thinking about, for example, primate models that might be very expensive to implement, but might be used very useful in this sort of, for example, armistice models. So anyway, that's, that's something I know is going on in the, in the community that I think there's some interest in having further discussion about. And some of this discussion is happening at the Institute director level, I think part stimulated by this, these issues around the model organism databases and just general discussion, even about, you know, what, you know, we create these communities and yet it through a 2016 lens wondering if that's, you know, if that's the right framework for much of the work we do. So I think that's a good point. We're going to do Carol and then Aviv. Okay, sure. I wanted to say the two things I've heard in that context. The first has been characterization of the model organisms with very modern tools, genomic tools, which can be applied now and maybe couldn't be applied five years ago. Single cells is an example of that. Not my own research, not in conflict on this specific aspect of single cells, but that's what we hear from people. Could it at this lens, it would be easier to compare model A, B and C to human. And so something more systematic would be done like that. And the other context for that is because of the tremendous advances in genetic engineering tools that those are uniquely possible to apply only in models. You're not going to start crispering people to test what would happen when you do this and when you do that, but you can do that absolutely to the model organisms. And yet when I look at the NHGRI activities, we also discuss this in the Beyond Encode Workshop. Genetic manipulation doesn't play a major role as coupled to genomics and it always looks a little bit like a whole. And I think people do comment on that. Carol. So I just wanted to say how much I enjoyed both of the presentations. So Dr. Gibbons' presentation followed by Adam's, you know, that juxtaposition. It'd be great to have more of that. I really think that shows the partnership and the benefits of the partnership of NHGRI with the other ICs. I really enjoyed that. And I thought we had talked about it last time at one of the things I really would like to have us, a visitor or a speaker I'd like to have is the new NLM director as soon as we can get her here. I think I would really like to hear from her. So let me comment on that. I appreciate the feedback. More specifically about the NLM director, I thought it was not a very nice thing to do to ask her to speak at council two or three weeks after she officially started. So we already have her slated for February. But you made an interesting point and we should give some thought to this that maybe when possible, we should directly couple a present when we have someone like the NLM to maybe have a coupled with an update on what we are doing in areas of synergy around the NLM so we could think about it, whether that's BD2K or some other programs. So we should think about that as we schedule her and she's already scheduled already to go for February. Although I haven't asked her yet, I would imagine we'd probably want to get Deanna Bianchi here fairly quickly and she starts next month so I think it's fair to ask her to come in February but somebody needs to remind me to get her invited and at some point we also want to have Josh Gordon the new head of NIMA so again we can calculate whether that should be February where that could wait until May. We'll determine but there's no question that when new leaders come on board especially with people who are representing institutes we have relationships within a significant way we want to get him here as quick as possible, no question. Just I guess a follow-up on Joe's point as well and I'm new on council obviously and so maybe this is something you guys already have discussed in the past but not only to think about the mod databases but just I would very much enjoy participating with with program and thinking about you know if provided the goal of this exercise is to link genetic variants to disease or an important goal what are the right data and analyses to do that? Is it the mods? Is it single cell sequencing? Is it other layers of data and types of analyses? I think there's just a really timely discussion that a lot of us are having outside of this room in those kinds of issues. Just to maybe expand a little bit more what you're saying what are you thinking you're talking strategically just talking with programs or you're saying this is an area that you feel is not well developed where some a broader conversation of the community would be helpful or fresh look? Well first in this room among council members and then and certainly you know I think some of the workshops that you guys are running at the moment are designed to raise some of these questions anyway but I think you know the Joe's question comes you know in the context of you know any anything that we we support should should bear on on linking human genetic variants to disease and and if you think about the mods in that sense you can start to judge their their relative value and relative to other things that you might do. So anyway I just think it's a very interesting discussion that that seems to lie at the root of some of these decisions. Howard? So I have two things. So one I put Bob on the spot. Bob gave a nice talk at the insight meeting where he was talking about some of the payer issues that are going on and I don't know if Bob wants to to mention any details about this in the open session but you know some of the individuals you were talking about it'd be great to get them to come to council and get to meet council and maybe there's a bridge that could be built between those companies that are involved in assessing quality of it and I don't know if you want to talk about that so I'll leave that open if you want to mention names or whatever that's fine and the second thing that I think would be really useful is you know this whole issue of epidemiology and how do you bring whole genomes or whole exomes or high density DNA into the epidemiology side because that is part of the challenge that we're facing is that we bring everything to an average level and then we move away from that and really the case control issue is how do we do that and I think there's I don't know enough about it Terry can probably discuss much more about that but how do we bring genomics to epidemiology at a genome-wide I think is an interesting question is this open still open okay so I think it's a very wide range of of groups that are providing evidence to third-party payers about the value or lack thereof of genomics and genetic testing as I think one of the primary people that everyone looks to very much so is Palmetto and the moldy X program there which is run by Dr. Elaine Jeter and I think I can't speak for her but I think she might be interested in interacting with us I don't know that that would be one possibility the others you have had Naomi I'm blocking on yeah from Blue Cross Blue Shield Tech assessment she's been engaged and involved already with you so in the same vein of looking at overlaps and synergies and the ways that the different programs can not reinvent the wheel or can really rely on the kind of evidence that's being created and I think there's something coming up that I'm on to look at for a supplement you know to look at the ways that non-genetic physicians are are sorry I'm really I really am actually not feeling well today but in any case it's the thing that Dave Kaufman is going to introduce so and it's about surveying people about something that that actually several people have mentioned about the ways the needs that non-genetics clinicians have for knowledge or information about about genomic medicine okay so in any case so it's just sort of generally I'm just really alert to this and and I'm just one person I've got my own lens for example the seer the new seer programs which are really exciting you know cover a range of new topics for for the LC seers and that including the privacy and security that Alan Clayton and and Brad Malin at Vanderbilt are going to do I think could be potentially really helpful to other people in other parts of the genome medicine consortia and likewise I think that the the ways that we've had LC embedded research in some programs and now we're moving sort of beyond that and so and I think that that is it could be seen as a really great thing because I don't think LC then is a separate thing I think it's become very much a part of the goals of the program for example disparities and genome and genomics so that you could think the seizure to programs in those RFAs which called for either 40% or no 25% or 60% of participants who are going to be you know from diverse populations that that is that in itself is embedding LC and I think that's brilliant however I'm wondering if everybody else sees it that way and I'm wondering the way the other so the main question is how are there synergies around many of the programs that have been described to council and how can we make better use of the things that because it's really tough it's really tough to know everything that's going on and yet I think there's some really there could be at least some great bridging going on and I also think to the PMI so that's my sorry long-winded comment sure I would echo the words comment about epidemiology and genomic epidemiology I think that many people in epidemiology have very sophisticated epidemiology modeling and then they pick a single snip or a single you know I don't polymorphism and really are not grasping how important the genomic aspect of that work is and I think that's critical I I do think that there's a lot of advancement being made in electronic health records with regard to patient portals I know now every physician I see has a different version of my chart or CERNER has one and they're quite good with regard to being able to download your data being able to contact your physician and whether it's or at least leave a message whether it's worth thinking about some of those models with regard to subjects in our genomic studies and and using similar kind of models with the ability to log in and send comments and get data whether it might be well worthwhile to have some discussion about that how electronic health records are making data available to patients and how that those kind of models could be used in research in particular what context to have that discussion again you'd like to hear this at a council level or at a well I guess I knew so I probably could get advice on what the best context is but it just seems to me we have it sounds like from what we heard today there are more and more NHGRI projects where we're generating genomics data from patients who expect to get the data back but it doesn't seem we talk much about the platforms I mean there's a lot of return of results research and kind of what they want but I'm talking more technically taking advantage of some of the platforms being developed to really ease that obviously it'll be critical for the PMI but even for many NHGRI consortia that would be important. Jeff? I want to pick up on a question about the cost and economic issues and it's really more of a question you know at that stage now where genomic information really is translating into clinical care perhaps a lot on a research basis but increasingly on a clinical basis too and I'm not aware of much of a robust literature out there on cost effectiveness and I'm wondering whether as these initiatives go forward whether there's real opportunity to bring in the health economists to help understand how to analyze how to collect the data how to begin to draw a few conclusions about how these services ought to be structured to maximize cost effectiveness and obviously that's going to help with third-party payers and their decisions about how to how to cover this stuff so just a question about whether that it's the field is mature enough to be bringing in those sorts of colleagues. Larry do you want to someone take a cut I mean we this comes up frequently around health economics and some with genomic advances and there's things it some of it falls within the division of genomic society we have done some things and Larry and there's some things we haven't done and there's some cautions about what we can and can't do but maybe Larry should comment about this we we are supporting close to the mic some some focus grants in this area as well as embedded grants in this area the caution is that there are boundaries as to what the NIH can and can't do which recently revised what I'm getting at is the NIH is limited on in the research side to doing research not necessarily deciding which is the most cost-effective treatment and so up until those bound up to those boundaries we are trying to push this a little bit but we have to be cautious so there's a NIH program called SIPA that's the science education partnership awards these are K through 12 innovative science education designed for bringing research experiences to K through 12 and I would say more than 50% of them have a genomics component might be worthwhile to have the program director Tony Beck come and talk to us a little bit about that if if there's interest is Carla Easter Carla do you want to I know you know a thing or two about SIPA you want to come to a microphone and make a comment and what interactions we've had with that program and so forth we've actually spoken with Tony several times and you're right there are several of the SIPAs that do have a genomic component and in the past we've actually done sort of supplements to the DNA day program to help some of the groups that had already had SIPAs do some more engagement around DNA day but I think it's an excellent idea we've worked very closely with Tony on a number of different things and I think the potential is there for us to work even closer with him but he actually has come to a DPC meeting before and talked a lot about the program in the past there's interactions with their division where the education program resides anyone else or anyone on the phone want to weigh in okay all right it was pretty comprehensive we'll compare notes and be back in touch a couple of administrative things the announcements and items of interest we have two reports from two societies the American Society of Human Genetics and the National Society of Genetic Counselors these are descriptions of their activities since the last council meeting you can find those reports by going to NHGRI's webpage find the council page you'll find a copy of the open session agenda and they're linked to that if you want to know about activities in those two societies so at this point maybe Jeff you want to come up to the podium please yeah all right