 Jeff, do you want to come to the podium, please, then? So next up is Jeff Bodkin, member of the council. There are four working groups of the council, and there is a requirement that the working groups give a presentation or report to the full council at least once a year. Jeff Bodkin is going to do that for the genomic genomes and society working group of council. I think we're switching back from the table to the podium computer, so sit tight. Well, thanks. Thanks to Eric and Rudy for this opportunity while we get the slides up. One thing I certainly need to do is thank the outstanding staff in this division for their support of our activities and really their dedication to this whole domain. So Lori Brody, Dave Kaufman, Joy Boyer, and Nicole Lockhart in particular have been terrific supports, and my thanks to Nicole for her help in my putting together these slides. So we've had the opportunity to have a couple of calls in a face-to-face meeting that I'm going to be reporting on today, and mostly what I want to do is just give you a fairly high altitude overview of the kinds of issues that we're particularly interested in thinking about. We don't have any specific recommendations for council at this point, but a number of topics that we think may deserve additional attention by our group and by the community. I think that this is the first time the room is being used. I know there's scrambling to get sure the slides get up. I just want to warn Gail Henderson that you're on full view now, part of the WebEx. Oh, yeah. What? What? Stop. Wait, what did you say? We can see you, Gail, but that's not here either, so I'm fine. Well, what am I doing? How many fingers? Wait, how do I turn it off? Put a sticky in front of your camera. Here we go. Wait, like that? Yes. You're gone now, Gail, so just mute your microphone for now. All right. Okay, okay. Close here. There we go. All right, thank you. So here's our working group, excellent group of folks to be working with, a variety of disciplines, all except that one fellow in the front who was not just trying to gain some luster by associating with our group, but came kindly to give a presentation about the strategic plan. So here's our charge, and I'm not going to go through this in great detail, but I've underlined sort of the key points of each of the elements of our charge, provide input about the LC research program, provide input about activities of the Division of Genomics in Society in Light of Changes in Genomics, identify areas of potential synergy with other components of NHGRI, identify potential synergies or collaborations with other NIH institutes or activities, and identify genomic site issues and activities that are more appropriately done by somebody else. So here's one accomplishment of the group under Lisa Parker's leadership with Pamela Sankar, along with a couple of staff members, Joy and Jean McEwen, now retired, and Dave Kaufman. So this is a publication in Genomics and Medicine on an overview of normative and conceptual LC research. So it's sort of a presentation of what is this research about, and what is it and why is it important. So just a quick snapshot, folks have gotten quite a bit of information about budget. So this is just to emphasize that the LC budget in 2018 was $20.6 million, was $6.5 million available for new grants, so quite a bit of the funding going to the SEERS programs. But this is 5 percent, and it's been consistently 5 percent for many years. And to reemphasize a comment that Gail made a little bit earlier, still the only institute with any sort of formal set aside for LC research. This will be a topic I'll touch on a little bit later, but one we really want to think seriously about. I believe this is still the single largest set of funding for bioethics-related research in the world. And so really wonderful opportunity. A lot of us think an excellent model for others to be seriously thinking about. So some of the topics that we talked about at our May meeting then included a discussion of outreach to scholars in sort of non-traditional LC domains. Now LC is traditionally interdisciplinary, multi-disciplinary, so we really had a variety of different scholars who have been part of that community for quite a period of time. But part of the question here is can we do more work to extend this outreach further? Academic institutions, I'm guessing many are like ours, where we're seeing our law colleagues get some pressure. Why don't you begin to look for some outside NIH funding? Fine arts, the humanities are getting some pressure to begin to look for external grant support. And we think the LC program represents an opportunity to bring people in from unusual places that may have something to say about this. And just speaking from my own institutional perspective with our seer, we've been able to bring in folks from theater, from Middle Eastern studies, from health economics. Communications have been terrific colleagues. So there's a lot of these sort of disciplines that don't traditionally think in NIH terms that might wish to learn more about these opportunities. We had a discussion of race, genetics, and ancestry. Obviously a hugely complex and controversial set of issues continuing forward. Important to the whole notion of diversity, but also central to the misuses, misunderstandings, and enormous tragedies over the last century. So these concepts need continual thought and integration with the science. And so the second bullet here is sort of thinking about are there opportunities for LC engagement and those who are doing genome science and looking at populations and issues that touch on race and ancestry. And perhaps possibility of new programs to address some of these challenges. We had a presentation about the All of Us program and opportunities to build on the work that's already going on with that initiative and the LC domain. They, for example, particularly highlighted the challenges they're having with informed consent in diverse communities. And so there's obviously lots of scholarship out there in the LC community that might be brought to bear to help support the All of Us program in a variety of different domains. Other topics of interest, we will be having in the not too distant future a presentation by Dr. Ravitsky from Canada, relatively new member of our group. And the Canadian Institute of Health Research has a significant set aside, as I understand, for LC related research. So we're going to learn how the Canadians are thinking about the integration of these sorts of social science issues into the scientific initiatives. Want to think about LC issues emerging from the strategic planning meetings. And also begin to think about the issues that will be confronting us as genetics moves from what I would characterize as more of an information-based set of outcomes to interventional clinical protocols. We're seeing that now, of course, genetic protocols are reaching clinical science. And we think there's going to be potentially some interesting LC issues as we make that transition into interventional clinical trials. Forensic uses of genomic and genealogical databases, very interesting. I want to review what LC has already done in this domain. We've already heard recent publication in this domain, but I know I've had at least a number of calls from folks who are particularly interested in where this is going. I would entry standards for use of genomics in clinical medicine and public health. This is an ongoing challenge. Again, as we learn more about associations, when ought we judge these to be ready for prime time and integration into clinical services? Specifically, LC issues from polygenic risk scores from large data sets, as we heard from Eric's presentation, a hot area of science, a lot of findings coming forward. Again, when might these be useful from a clinical standpoint and when might they be misused, used inappropriately in certain contexts? And then an issue that I touched on very briefly at our last council meeting that at least has me somewhat alarmed, and that's the use of genomic technologies, gene editing, if you will, by non-... This says non-traditional research, so the whole gene hacking phenomenon, the gene editing in the bedroom or the basement notion. And do we need to take this whole domain seriously? Is that somebody else's job, or is this something that the genome world here ought to be taking a careful look at, mostly to make sure that there's not the development of technologies, organisms, approaches that might pose a significant threat to both individuals and potentially the public's health? So strategic planning, we will not be... We want to monitor what's going on as folks give input during the strategic planning phase. What are folks saying out there about the LC domain? What would the community like to see in terms of how this program evolves over time? And then perhaps we'll be able to provide some input later on in the process of a more substantive nature. More specifically, there's gonna be a strategic planning session at the American Society for Bioethics and Humanities in October that's in Disneyland. All right, that was my set of comments for this. Do we have time for any comments or questions? Questions for Jeff about activities of the working group? All right, just stay up there then, Jeff. Oh, go ahead, though. So, Jeff, thanks for that presentation. So historically, I've thought of LC with the first two letters, ethical and legal in mind. I wonder, can you give an example of the discussion of your group around the social aspect? Yeah, that's a pretty nice question. I think there's issues that don't involve sort of conflicts and values, but relate perhaps more to the social application or the application in society of a variety of technologies that are emerging. So I think some of the issues around justice and our representativeness, discrimination, interpersonal responses to genetic information, how this plays out in the family environment, all of those would sort of be the social context of the use of genetic technologies and genetic information that may impact individual societies, communities that aren't specifically ethical or specifically legal. So just a follow-up there. So you mentioned that one of the group of people you interact with in yours is people involved in communication. And I wonder if the social aspect has involved talking about interactions between physicians and patients with regards to delivery of genetic or genomic information. Yes, very much so. I mean, our particular center is focused on genetic screening issues and we spend a lot of time thinking about new tools to help people understand the nature of the choices they have, particularly around issues such as newborn screening, prenatal screening. There's a huge gap in good tools out there and many of the tools that are being developed are developed by industries or the test vendors as opposed to independent sources. We also know that clinicians are not up to speed in many circumstances with the use of these technologies. Clinicians up to speed with state-of-the-art tools. And so brochures, sciences shown repeatedly aren't the best way to educate anybody. So what are the new tools that might be useful? So apps, videos, online modules, some of the variety of different things out there that might substantially improve how these things are integrated into actual clinical medicine. Gail, did you have a question? I didn't have a question. Is my hand raised? No, but then I thought I was hearing some clicking sounds. So just make sure your phone is on mute then, please. Someone else? It has been on mute. Okay, it must be someone else. Thank you. Go ahead, Jonathan. As you know, there's a lot of concern about misuse of polygenic risk scores across races and ethnic groups. And I was wondering if you have any comments on activities in that area to address misuse. Okay, scores. I don't. That's not an area that I have particular background in, but I'm wondering whether Gail or Patricia might have comments about that set of issues. Sorry, also not my background. Yeah. Gail, any thoughts on that? This is, sorry, because I didn't hear the whole question. My question was relating to misuse of polygenic scores and using them to compare across race and ethnic groups and they're really not calibrated for that. But I think we're entering into a period where there's a real concern about people doing social harm by misusing this context. And I was wondering whether the LC community is thinking about ways of tackling this. So it's not my area either, but I think you're suggesting something that's clearly very important. And hopefully the fact that you're doing it in a public forum is going to generate some interest and maybe proposals. Thank you. Sharon. Yeah, I just wanted to comment on the hacking, the science hacking comment. And I would say it's gone on in many disease areas where parents or patients have felt frustrated by the pace of research and it hasn't always been negative. So I do think it's important for the committee to kind of look at some of the examples from other disease areas and not view it solely as this incredibly scary thing. I mean, it is, it can be very scary. I'm not saying it's not, but I would just say that certainly there are frustrations on the levels of parents and patients with severe disorders who have thought they should take it in in their own hands and not always with a negative outcome. Okay, and I appreciate that. And I think that that's probably a more balanced set of considerations than what I had commented on. I think that the role of the citizen scientists, engaging communities, people who are dedicated to finding progress secure for their child's disease, all of that has had tremendous value in the field over time. So I think there's those very significant positive elements. The thing that seems to me perhaps a little bit different is the real kind of wet lab environments that folks are developing and potentially altering organisms in ways that might pose a threat to the community that probably hasn't been as much a component of other historical examples here. So I'm noticing all the screens have gone blank. So Michael, if you're... No, he's okay. He just put it in the last part of my slide. He says, if he has a skate... Oh, okay, very good. Thank you. Other questions for Jeff?