 So next up we have a presentation. This is from a workshop titled Future Directions in Genomics and Health Equity. This was a workshop sponsored by NHGRI in early April. Judy Cho is with us today. She was one of the co-chairs and organizers of that workshop. And she's going to present the report to you. I think many of you know Judy. She's the professor and dean of translational genetics at the Icon School of Medicine at Mount Sinai. She has a longstanding interest in identifying the genetic underpinnings of irritable viral bowel syndrome and Crohn's disease. She was a leader in some of the earliest genome-wide association studies done in those phenotypes. And Dr. Saundra Lee at Columbia University was one of the co-chairs of this as well. Judy's going to give the presentation, but Saundra is also joining us and will be available during the question and answer session. So, Dr. Cho, thank you for being with us. I see your slides are up so why don't you go ahead and begin. Thank you, Rudy. So why don't we go to the next slide? So it was a genuine pleasure working with NHGRI staff in planning and participating in this workshop. And the goals of the workshop were to identify the research gaps and opportunities that will help address health disparities and improve and really move towards and achieve health equity and genomics. And finally, there were over 300 participants. And it was really quite a bit of fun working with Sandra, Sujin Lee, Lucia Hindorf, and Ebony Madden in planning this and making this workshop a reality. Next slide. So in terms of the keynote speakers, we had three of them. The first was my mentor from the University of Chicago days, Nancy Cox, who's currently at Vanderbilt University. Nancy highlighted in her talk a number of general principles going across traditional disciplines, really collaborating with folks that she traditionally had not done previously. She emphasized the importance of doing no harm and providing reference lab values that if we entirely rely on one population for reference lab values, that may not be appropriate for all populations. It may result in over testing. And again, this violated the principle of not doing any harm. The second keynote speaker was John Carpton from USC, who's a cancer researcher who highlighted that many of the important cancer data sets are substantially underpowered in diverse populations. And he argued very articulately the need for not just sampling appropriately but also over sampling, given some features of African, recent African populations in terms of diversity. In terms of short liquid scologram blocks. There is a genuine scientific value to over sampling these populations. And the third series of keynote speakers that we had was President Hildreth, Mahara University and Genevieve Wojcik. So President Hildreth talked about the fact, the very obvious fact that the coven pandemic has had a disproportionate impact on underrepresented populations. And he talked about exciting new initiatives within historically black medical colleges, including it together for change initiative in terms of recruiting patients. Genevieve Wojcik pointed out various features of polygenic risk scores, and she highlighted that what questions get asked. So this study reflects the interest of the investigators, and then both of both of these final keynote investigators talked about the primary value of community engagement trust and longstanding partnerships. Next slide. So, in addition to the keynotes talks will scheduled was panel discussions following each of the major keynotes. We have heavily panel discussions with great moderators. The first panel discussion which was headed by Dr. moderated by Dr. Perez stable. Talked about health disparities and moving and how we actually move to health equity and genomics. There was discussions about the key role of poverty and racism. I love the phrase. We need to become comfortable with having uncomfortable conversations. We have a lot of definitions in this panel of health equities that go beyond just race which is obviously substantial but to include disabilities and involvement in indigenous communities. Next slide. The panel on identifying research gaps and opportunities was moderated by Dr. Hughes Halbert from USC and talked about various mechanisms whereby accountability can be achieved. There was an importance of resource distributions in this. And it was actually kind of an interesting panel recognizing that there was a substantial amount to do, but as a community we are doing okay but can certainly do better. Next slide. The panel was addressing structural factors needed to support health equity research in genomics. And this was moderated by my colleague at Mount Sinai Carol Horowitz with a panelist as listed. And, again, the structural factors are again highlighted the importance of trust representation, following President Hildreth's talk. This has made the particular point that the importance of engaging with communities, highlighting the importance of research but we can't over promise regarding the positive impact for research for genetics research to these communities. Next slide. We had five breakout groups that was open to all registrants and the SDOH or social determinants of health highlighted and had a very good and lively discussion about what are the specific measures that are not routinely measured. And much of biomedical and genomics research. The structural factors breakout group discussed and highlighted very specific mechanisms for community engagement and how that community engagement and interactions is bidirectional in nature. The third breakout group on bench to bedside emphasize some of the points that have just been made a few minutes ago that diversity needs to be included in all types and all stages of genetics and genomics research. There's some interesting points talking about how an excessive focus and outcome metrics may in fact result in a worsening of diversity. So we have to actually think a couple of steps down. The data science breakout group talked about many of the similarly overlapping themes and highlighted the importance of starting early in the workforce and training involved in genetics and genomics research. And finally the LC breakout group talked about the downstream exacerbations the importance of not exacerbating some of the disparities, the importance again of cross disciplinary research, and included legal and regulatory factors. Next slide. Next slide in terms of the specific discussion points to summarize what I've just said is a number of investigators talked about not defaulting to laboratory reference ranges based on European ancestral populations to address the lack of data regarding the use of the city and clinical algorithms next slide, the necessity to over sample recent African ancestral populations, the lack of diversity and researchers peer reviewers has far impacts on fundamentally what is being studied, evaluating downstream impacts and health equity should go beyond representation and data to include the downstream health implications and community engagements involves strengthening these bidirectional relationships. Next slide. So in terms of the opportunities for NHGRI I think front and center is diversifying the genomic workforce and landscape. The second bullet point addresses the lack of diverse genomic data all very fixable issues, the third bullet point. And the fourth bullet point are actually quite related understanding how a lack of diversity in populations and communities impacts health disparities. The fourth point is actually quite complex, we didn't actually have simple answers for this to address the inappropriate use of categories as opposed to more genetic quantitative continuous data when interpreting these laboratory values clinical markers and under utilization of genetic markers. The fifth point is nurturing these long standing relationships and finally the next slide is we want to develop metrics of health equity, such as access to genetic testing and applying them across genetic studies next slide. So, in terms of the recommendations each one of these breakout groups then came out from with anywhere from two to three questions that the NHGRI staff put together, and the audience and participants were asked to highlight vote for one of them. And there was a lot of overlap between some of these priorities but number one and two was diversify the genomics work workforce. And by including historically black medical colleges, and the second highest priority was to ensure sufficient data and resources for studying this with community engagement. Next slide. And so finally, I think, a concluding thought is that this idea of health equity needs to be incorporated across all branches of genomics research from the most basic genomics research on the left to more implementation types of genomic learning within healthcare systems. And it needs to be studied in to create virtuous cycles of advancing knowledge from bench to bedside. Next slide. So the video workshop report has already been published and is located at this URL. And the group is working with NHGRI staff. There is a preliminary workshop report that's I think been posted already, as well as to prepare a manuscript for submission to peer reviewed publications. Next slide. And then acknowledgement, again, it's been an absolute pleasure working with NHGRI. My co-chair Sandra Lee, the NHGRI communication group managed a very complex workshop, and all the participants. So I'll take any questions now. Actually, can we start by offering Sandra Lee the opportunity to add anything she would like your presentation. Sandra are you with us. Can you hear me. Yes, we can. Great. No, I just want to add my thanks and applaud the investment in this discussion. It was a really fantastic group and the NHGRI staff that led it really did a tremendous job and I also wanted to thank Judy for her leadership on this. I will say there's just tremendous synergy with the discussion of the concepts earlier today, I will say. And the kind of broad discussion, thinking about where there's points of intervention to move the needle on equity across the research ecosystem was particularly striking I think over the two days. And you see it in the recommendations that, that include not just issues related to classification and population descriptors upstream but the downstream implications in terms of implementation that Judy, Judy described so I'll, I'll just say I thought that was a terrific summary. Thank you, Judy. Thank you, Sandra. Are there other questions. About the workshop. Laura, go ahead, please. Thank you for the presentation was really great and workshop sounds like it was wonderful. I'm also thinking about the urban rural divide that exists because you know there's just such a tremendous disparity in healthcare and, you know, my gosh we've really changed so many of the things now with the pandemic and zoom and televisits and a variety of things so what are how are we going to make sure that there isn't this despair, increasing disparities with urban and rural populations. So I thought up there were panelists and breakout members who did discuss these issues and a little bit of telehealth was mentioned. I am not I don't remember reading the workshop report it was definitely mentioned in a couple of the breakout groups. I was Sandra if you if you had any recollections beyond that. I don't know that it was a focus of discussion it probably needs to be in terms of these other broader dimensions of diversity I mean certainly the digital divide, I think was brought up. But these issues around access to care that perhaps are are are important in terms of thinking about rural versus urban are certainly ones that I think we should be focused on. And I just want to say there is a movement to decrease telehealth now by many different insurance groups. As the pandemic is ending so we you know we have to be aware that we may be going into more disparities. I wasn't aware of that I guess maybe the work from the pandemic is wearing off a bit, but I thought that was a positive development. I thought it was a positive to but I know some of the insurance companies, for instance, are starting to creep down maybe they didn't like all the visits. I don't know. Yeah, that's possible. The questions or thoughts. Judy, thank you for the presentation thank you for your time. Thank you Rudy. Thank you for joining us. Bye bye. Bye bye. Thanks for the session you're welcome to stick around.