 We are right at 421 so I will gavel us back in the open session turn this back over to Rudy Okay, we're gonna have to we're gonna attempt to change the order of things here to accommodate people's end-of-day schedule So Maya and Greta are you on the call? Yes, we are. Thank you so much. Would you guys be willing to give your presentation now? Yes, happy to do that. Okay, so a brief introduction here We have four working groups of the council Last September you heard for genomic from genomics and society working group And we have three additional working groups that are all going to give a report today It's part of their requirement is to present to the entire council So we're going to begin with the community engagement working group and Maya Sabatello and Greta Gotto Are co-chairs of that group and they're going to share this presentation Maya, are you leading off? Greta is Greta and she's got this light. She will eat on me the slides as well. Thank you great very good All right, take it away All right, I'm gonna share a screen Rudy Are you seeing slides? Yep, we're good Perfect. Well, thank you for the time on your agenda this afternoon We are very honored Maya and I are very honored to be with you today To share an update about the community engagement in genomics working group And we're very happy to share some of the activities that we've been working on since we met with you The last time in 2021 I can't believe it's already been that long As a brief recap Especially for some of the newer members on the advisory council the community engagement in genomics working group Or segue or working group is supported by staff from both the education and community involvement branch and the training diversity And health equity office and we want to give a special shout out and thank you to Larry Brody and to then spawn them for all of their support and work with us on this on this Very exciting Group that gets to work with each other Our mission is to facilitate understanding and information between community and NHGRI It is our hope that you'll see this mission is alive and well in the work that we'll be reporting on today Yeah, thank you, Greta. So, you know in the previous Some of the goals that we've had in the past these are the goals generally for our committee And since we reported last in September of 2021, we've continued to work on the last three goals Which are sort of giving some input about NHGRI activities and their ability to reach all communities and to increase genomic literacy partnership with an HRI to build trust with communities and then the third big goal with to collaborate with other Communities and HRI and other institutes and centers that have a Synergy here and then we'll also share a little bit about the work that we're doing with regards to the first two goals Which are to assess the gaps and needs of diverse communities related to genomics and genomic medicine as well as to develop programs and Disaminating tools and resources to address identified gaps and needs The next slide please Thank you So we just want to briefly reintroduce ourselves to you too, especially since there are some new members on the advisory council Chamei, Hwinga Atka, Greta Anderson-Goto, Juryong Myun-Yunga My name is Greta Goto, and I am working and living on the traditional lands of the Dina Athabaskan and Anchorage, Alaska I'm originally from Choliung or Dillingham, Alaska, which is in Bristol Bay My professional experience includes nonprofit and business administration community outreach Research and project development strategic planning and board work I became involved with genetics when our older daughter was diagnosed with Prada-Willi syndrome almost 26 years ago And I've advocated for her and others who have rare diseases and that has led has led me here to the Segway group And I'm very very thankful for the opportunity to serve Maya Thank you so much I'm Maya Sabatello I'm an associate professor of medical sciences at the Center for Precision Medicine and Genomics and Division of Ethics at Columbia University Where I'm also serving as the coach chair of the Precision Medicine Ethics Politics and Culture Project Which aims to increase the dialogue the interest interdisciplinary dialogue about precision medicine research my own work focuses on Disability inclusion and trust in precision medicine research I have had more than two decades work with the disability community probably defined And I'm also a member of that community for quite a few years now With that happy note, we can move to introduce also our members Thanks, Maya So we have 12 regular members and one ad hoc member membership on this working group is for two years and can be extended We currently have two open seats that would be will be filled in the next months This year as well. We'll have a couple of members that need to rotate off. There are current membership Includes Becca Bacall from the Sinai Urban Health Institute in Chicago Kellan Baker with the Whitman Walker Institute in Washington, D.C. Gwendarian with the National Patient Advocate Foundation in Washington, D.C. in New York Gregory Diggs Yang with the University of California Irvine Brittany Hollister with the University of Florida Genetics Institute, and I think some of you will recognize her name Alma McCormick with the Messengers for Health with the Crow Tribal Nation in Montana Ella Green-Motton with the Community Ethics Review Board in Flint, Michigan Alicia Santiago from the National Science Foundation and Michael Hahn who's with Tribal Engagement Lead at NIH for the all of us research program In addition, the working group is regularly supported by NIH staff Christina Dalton who is the partnership and engagement officer in the Training Diversity and Health Equity Office and Belin Hurley who's an associate investigator in the Division of Intramural Research Other members of the NHGRI Education Policy Branch also participate in our calls and helps support our work And those include Donna Messersmith and Roseanne Weiss and then also from the Office of Communication Sarah Bates and Julia Feckes and we thank all of them for their help and support So in our previous reporting period we shared with you two papers that we worked on at the time with the working group and which both focus on structural racism And discussions in the context of genomics and precision medicine research that experience of writing two Two papers together really gave us a taste for maybe more and one of the themes that came out of it Is the importance of intersectionality so since then we've taken on two additional papers Which are now working titles here and we're finalizing the first one Which is on the need for intersectionality framework in precision medicine research um And the second paper is still underway and hope to be finalizing that as well soon NHWIS focuses on distrust in genomic medicine the need for an intersectional lens and again It looks into some of the issues that might come up um and um In how an intersectional framework May mitigate Some of the challenges that patients are under are going through so what is intersectionality and great if you can please do That's to the next slide So intersectionality is a framework for understanding and analyzing how multiple categories of socio-political identities Shape and substantiate one another and how systems of power and privilege create and maintain lived experiences of marginalization It originated by women of color during the 1960s and 70s and coined by professor kimberley Crenshaw It has several tenants that were particularly appealing for us as a committee Uh, the first one is that it views multiple overlapping socio-political Identities as mutually constituted not additive That is that the experiences of various isms such as racism sexism Abelism and so forth intersect co-create and substantiate one another a second tenant of the intersectionality framework is that uh, the intersectional research is inherently connected with How systems of power and privilege influence lived experiences create oppressed and marginalized populations and inform the conceptualization of socio-political identities And finally this framework Is geared towards social justice and aims to identify actionable solutions So both our papers take on to highlight how intersectionality is important and can be Informative for respectively precision medicine research and clinical genomic medicine With a letter paper on genomic medicine Actually also including a decision tree as an educational resource for Readers and for clinicians to guide more equitable genomic care Next slide please Our second uh, or third sort of Second big project that we're focusing on aside from the papers Is a work to think about um, it's a community outreach concept mapping effort And this project is aimed to identify communities that should be engaged by NHGRI and or those communities that need more opportunities to engage with NHGRI This topic has come up in many of our meetings and in discussions with leadership at NHGRI as well And the overarching questions and purpose of these questions included What does um our committee know about which communities need more opportunities to hear from NHGRI and the other way around As well as given NHGRI's mission How should the institute partner to expend the reach of NHGRI to those communities that haven't received as much attention to date And how might our committee help NHGRI think about how the institute engages different communities How can we make it in a way that is responsive to the community needs? So we've taken on a concept um Mapping visual exercise if you will which kind of builds on a research methods That's called concept mapping but here we're doing just the brainstorm brainstorming part of it of actually trying to identify together Those missed communities and the ways that we can approach them So the prompts that you can see on the slide are essentially the quick questions that we've had Asked the community members in a meeting in meetings and it's an iterative process So we started with one community that NHGRI should approach is and everyone is responding Was responded to that followed by one sub community that NHGRI should bring attention to is And a part of the idea is of course that also within communities They're never had they're never homogenous if we're looking into african-american communities. They're not one single voice There's so many intersections within them. So um, we wanted to look into those intersections The sub communities within the larger community and then the ways that NHGRI can approach these communities Is and again trying to get more responses to that and I'll say beforehand that you know We'd be happy to hear more prompts that might be helpful We're still in the process and flushing out some of the details Thinking about the the the little things that we still want to move forward What we're missing and again thinking how to move forward with that Next slide, please So following on what Maya just described Some of the responses that we got not some the responses that we did get from our community Working group was looking at all of these different communities and we're looking at it under the umbrella of medically underserved You might recall that the u.s. Health services administration designates medically underserved as as areas or populations that have too few primary care providers High infant mortality rates High poverty or a high elderly population So we believe using the medically underserved as kind of our overarching umbrella in in this instance As an approach can reach a large number of the people and communities that we're talking about And and really looking at intersectionality as the lens through which we're we're identifying this In our preliminary results the working group identified several communities such as African-american black american indian alaska native people with disability native hawaiians immigrants homeless individuals with limited english proficiency inner city lgbtqia plus mixed race by cultural rare disease rural native hawaiians and persons living in u.s. Territories Again, our group believes that mapping this can help illustrate the intersectionality complexities And underscore the need to work with patients within a community on a one-on-one basis and get to know them and their needs So we're hoping we're going to share three examples of the working visuals that we're designing Based on the results of the working group discussions And again, we welcome suggestions the first work that we want to share is about people with disabilities um, of course people with disabilities is one of these cross a universal phenomenon that cuts cuts across all other demographic categories And so what we're trying to first of all convey is that we're thinking about people with disabilities We're thinking about diverse sub communities within the disability community including those with genetic as well as those with non-genetic causes of disability We're looking at communities with diverse issues of identity or medical needs And we're looking at those intersections again with race age gender ethnicity And these are some of some of the intersections that exist I will say that of course, although um, disability is a universal phenomenon There's far higher prevalence of disability among marginalized racial and ethnic as well as gender groups because of structural racism and discrimination So that was kind of the initial Mapping that we wanted to think about and then from those little Sub communities that we were thinking about we tried to think about what are the ways in which NHRI can be More involved in including and engaging the community. So first thing is to think about inclusive studies requiring data collection about disability studies that is usually not Not not in existence in most studies But also creating studies that follow principles of universal design ensuring that they are accessible and inclusive of all participants And trying to think about the idea that we can exclude participants Not just directly by telling them that not eligible but actually by ensuring that we're That we're not excluding them indirectly by simply not making studies accessible to them We also wanted to highlight the need for researchers To have disability cultural competency and the idea that we have to learn to speak the language that many people with disabilities prefer use and find not offensive We have the not in addition to think about how do we train and develop workforce that is diverse Both in terms of again training researchers training the existing workforce for that diversity But also thinking about how do we increase the workforce of people with disabilities as researchers, which is something that That is still a little bit behind And then in terms of researchers, you know thinking about how can they start approaching to those disability communities? I think one of the key issues that comes up in my research for sure But in other conversations with those communities is the need for personal contact really the question of trust How do we build that trust and how do we make sure that we're implementing trust? Trustworthy steps in every step of the research design planning Implementation and so forth and then thinking about where do we want to meet to those communities? Whether it is in research settings or in other non-clinical and research settings Which actually might be more accessible for members of that community Next slide So our next example of a community that mhgr should approach is the lgbtqi community I want to credit uh kellen baker for providing this Well-rounded information for us, and I hope I can do it justice So looking at the lgbtqi Community as a whole kind of following along the example that Maya just just presented Some of the the sub communities under this larger community would include transgender people with intersex variations and same-sex parents And again, then those larger intersectionalities would include people of color age socioeconomic status limited or non English speakers those that live in rural areas or that have disabilities That's the intersectionality piece and where things can get very complicated very quickly But like Maya also said approaches to align These intersectionalities with this larger community and the sub communities And approaches to working with these different communities NHG or I could work with the iscc peg to develop and publish resources for genome.gov Could also host a symposium on lgbtq issues in genomic research and medicine Or push for the collection of sexual orientation Gender identity and variations in sex characteristics data on studies that are supported by NHGRI And finally NHGRI could require that its supported studies also include these populations to Or to justify why they might be excluded The third community or third example that we want to provide is illustrating approaches to indigenous communities And I think it's important here that we don't forget that Indigenous communities can include those that are coming to our country from other countries And immigrant status or or as being persecuted in their own home countries So as one example of a sub community within indigenous communities We could look at the 574 us federally recognized tribes Now that that's a big mouthful there and one tribe within the 574 might require a different type of approach and and Just because of cultural Differences among the tribes A general approach again Recognizing these tribes with those intersectionalities that we've already discussed around language homelessness Being an urban or rural A community member of a tribe To the spirit if you're mixed race or bicultural if you have other disease that might be going on And whether or not you might be a first language speaker And in this preliminary review What we got back from our community engagement working group was that Kind of really looking at the researchers first um and one of the the big One one area where our our Working group reflected on is how might a researcher approach a community And initially reaching out via personal contact to either the Indian health service clinic or a tribal clinic on the reservation To ask if a genomics research project is something that that community might feel important or beneficial to their members If the clinic personnel are interested And they could identify a community liaison within that community someone that the community members feel is trustworthy That has established integrity and is knowledgeable of the culture. I think we heard a little bit about that earlier with Dr. McCartney in her presentation with dr. Green So finally the community liaison would take a lead to guide the approach that would be most culturally respectful and appropriate And one of the big recommendations is that the researcher actually go out into the community in person to establish rapport and a relationship with with the people before sharing any information about genomics And I think you can kind of see across these different approaches that there are some some pretty significant similarities Maya, do you want to wrap up our project? Yes, so in wrapping up our report We wanted to share also some of the outreach and collaborations that members of our committee have been involved with Some of them have been mentioned in today's conversation already But again, our members of the committee have the opportunity and honor to be on some of them and we're really Grateful for that. So when Darian, Kellen Baker and Greta Gatto were all presenters of the national academies of science engineering And medicine workshop on realizing the potential of genomics across the continuation of precision healthcare Ella Green-Motton was elected to be the president of the american public health association um, I was involved to in in the ash g's Development of the guidance on community engagement as well as at the nhtri symposium on disability and genomics um, and both Ellen Kellen Baker and I Are also members of the nhtri ISCC peg and we're both Co-chairs of different groups Kellen is leading a working group on gender identity and equity and i'm working with shemita The scoopta on disability bias in the project inclusion as well Next slide, please So this is just our contact information As well as again shout out again to our awesome lesions christina and bellen And we want to thank you for the time and efforts to shefford and Instored the committee, uh its members and our work Next slide, please We do want to acknowledge and pay special tribute to our dear colleague And friend and long time working group member mary jackson's four games who passed away last year The working group will be dedicating our work this year our papers on intersectionalities to her and in memory of her good work And we really appreciated the opportunity to meet her as part of this working group as well Next slide, please So I just want to thank uh breda here for Passing along the slides. Uh, thank you everyone the council members and the leadership of nhtri for your time and allowing space in the agenda To share our work with you this afternoon Thank you for the support in our work. We appreciate it so much. Thank you Our thanks to both of you for that presentation Council, do you have any questions for either of the co-chairs? Maya and oh lens Oh if to car I just wanted to express my gratitude for all the work that's being done. I think it's incredibly important. Thank you and I think some of the resources you listed would be very useful for those of us who might be contemplating Engaging with minority populations Um, I think the recent asg document. I thought was very useful That's just come out. I think the last couple of months So I think it's such an incredibly important area for all of us. Thank you Thank you so much. Thank you Did you have a comment or you was okay. All right, great. Oh laura, please Yes, I also Want to say thank you for all this work and just um You know how I'm not sure I want to kind of ask the question in general, which is You know, there's m cats, which is a lot of community engaged research also and how can we leverage? Everything that's happening with the ctsas Um to help with the genomic research also You know, that's a great question and I think um You know when I think we're planning to have an in-person Meeting in may and I think we can definitely add that to the agenda in terms of even meeting With the leads perhaps of nc at and again trying to think about synergies and collaborations That's a great suggestion. Thank you so much Gerald can I have the larger screen to see if others have questions? Thank you Okay, Maya and Greta. Thank you very much We appreciate you taking the time to develop this presentation for council Thank you