 Hello, and welcome to the Contemporary Concerns and Communications Challenges panel. My name is Prabhorna Ganguly. I am the Chief Communications Officer at Nucleus Genomics, a next generation consumer genetic testing and analysis company based in New York City. I am a South Asian woman in my 30s and I'm wearing a gray sweater. Before we begin, a reminder to the audience that you can ask questions through the Q&A chat. Please make a note if the question is for a specific panelist. This panel discussion is not going to be a mean feat because communicating the nuances of social and behavioral genomics is the fundamental intersection between science and society. But I hope the discussion we have will provide much food for thought for all and drive essential decision making within the scientific community. With that, it is my absolute pleasure to introduce our three esteemed panelists. Dr. Rena Bliss is an Associate Professor of Sociology at Rutgers University. She is the award-winning author of Raise Decoded, The Genomic Fight for Social Justice, and Social by Nature, The Promise and Peril of Sociogenomics. Her research explores the personal and societal significance of emerging genetic studies. Dr. Tracy King is a medical officer in the Intellectual and Developmental Disabilities Branch at the Unis Kennedy Shriver National Institute of Child Health and Human Development. She currently oversees the NICHD portfolio on Fragile X Syndrome and works closely with the NICHD-funded Intellectual and Developmental Disabilities Research Centres Program. Dr. Chris Gunter is the Senior Advisor for Genomics Engagement at the National Human Genome Research Institute and the Head of the Engagement Methods Unit in the Social Behavioral Research Branch. The overarching theme to her career has been science communication in and around human genetics and neurodevelopmental conditions. Welcome, everyone. My first question is to all panelists. Can you briefly talk about what brought each of you to be involved in the field of social and behavioral genomics? Let's start with Tracy. Hi. Thanks so much for having me. So to introduce myself, I'm a middle-aged Asian woman with short black hair, and I'm wearing a navy blue sweater. So I actually am, I think, bringing two perspectives today. I am a primary care pediatrician by background, and so I think came at this field with a circle lens, and I, as Purvana said, am currently working at NIH in a branch that focuses on research around intellectual and developmental disabilities, and so am seeing the development of the basic science and applications of those sciences. So it's an interesting perspective. Wonderful. Rina? Hi. I'm Dr. Rina Bliss. And I'm a cisgendered biracial woman of color. I have long black hair and wearing a pink sweater, gold earrings. I'm a sociologist at Rutgers University, and I wrote a book at the dawn of the sociogenomic era called Social by Nature, and I actually started looking into sociogenomics in the early 2000s when I was writing or working on my first book, Race Decoded. Back then, genomics was really just starting to turn towards doing gene environment research, and it was also fighting for minority inclusion in more studies and in the projects, and also many scientists were excited about possibly capturing how social inequality gets under the skin. And what I found, though, was that even with the best of intentions, we were just seeing more and more racialization. So there was racialization of collections, of databases, a lot of publications using the same kind of categories that we use as our targeted and planned enrollment categories, so OMB categories in this country. And so I also saw very little research actually focused on discrimination or racism in our social environments and things like that. So later on, when I was starting to research for Social by Nature, again, this was many years ago now, but I saw things like phenotypes like criminal behaviors, aggression, IQ popping up as being part of this discussion of what's partly genetically driven. And so I also saw at that point very few practitioners in the area were unpacking race or really monitoring inequalities' role in those phenotypes that were popping up. And so my message back then was, but unfortunately still is, that we do need more in-depth environmental analysis, more that tracks inequality and its effects on the body. And this rather than Gene Hunt's drug development for specific racial groups, as we've seen with drugs like Bidale. And as long as the system is racialized, even just saying things like European and leaving it to the public to decide what that means, especially in our publications, we're still going to be seeing racial misinterpretations, all sorts of lies basically, and dangerous if not deadly appropriations, and weaponization, especially against Black Americans and Black, and people of African descent around the world. And I do want to say that in terms of communication, I'm really worried about some of the metaphors that are circulating around. And I want to share my personal story a bit just to bring this home. So I grew up in an immigrant community of color in Los Angeles, where many kids didn't make it through high school. Many kids, many of my closest friends left school in the first year of high school. And many also experienced racism daily from our teachers, our administrators, and just in general from the system, right? I myself almost didn't make it through that first year of high school. And we didn't have parental support or ESL help at home, English as a second language, our scores were low, our outcomes were poor. It's just there was so much behind our scores and numerical outcomes, right, or something we would put into a survey. And so I feel lucky, you know, I'm here now, but it would be all too easy to count us as losers of some kind of genetic lottery or whatever other metaphors that we have circulating around and that get picked up, you know, by people who already have racist beliefs, right, really strong racist beliefs or populist beliefs, what have you. So I just really want us to think about what our metaphors are doing for us. And even just those moments where we use a term as seemingly benign as European ancestry, what that does, OK? Chris. Hi, everyone, I'm Chris Country and I am a white cis woman with red hair and bright blue gases and I'm wearing a purple sweater as well. It's an honor to be here with this group so far. It's been amazing today. I got into I'm a human geneticist by training. I did my PhD studying fragile X syndrome, which is what Tracy works on. And then I went into science communication. I worked at a journal that helps set up the preprint server bio archive. I did a lot of communication materials around genetics for a number of different purposes. And then for the last, I guess, 2014 to 2019, I worked at a large autism center at Emory University and helped establish a dissemination and outreach core there. And it was there that I really came more upon the idea that we need to do a much better job of engaging with the communities that we're studying and thinking about the words we're using just as Rena just said. So we'll talk about that more in the panel. But I think that's so important to think about. And then as you've seen, because I've answered a few of the questions today, still doing a lot of work here at NHG or I both looking at looking at genetic literacy, for example, but also working in the field of autism and asking some questions about looking at genetics in that community. Wonderful. My next question is for Rena. Serena, as we have as we've heard throughout the last two panels, there's been a rise of polygenic risk scores as a new tool for understanding disease risks. And it's primate consortium itself is working on building systems for sharing such polygenic score information. And again, as we heard, you know, it's been used to assess social aspects of life such as educational attainment, IQ and a few companies are also starting to use it to select an embryo. So what are your thoughts on using polygenic risk scores in general and the language that's being used around it? And do you think that there are certain groups of populations who could potentially benefit from such scores? I definitely think that all populations could benefit from scores. I don't have a problem with polygenic risk scores or polygenic indices for disease in terms of disease and disease research. I think that's really, really important. But I do want us to fix the systemic racial problem, the problem of racialization in, you know, in terms of the broader field. And I really caution us against, meaning I don't want us to make phenotypes out of social phenomena that are so highly informed by and highly shaped by race and socioeconomic status to the point where, you know, I'm talking about where racism and socioeconomic status is a major confounder. Right. So that's like, you know, aptitude test scores, intelligence test scores, IQ, gang membership, things. I mean, some of the stuff isn't around anymore, maybe, but, you know, things like looking at people's investment patterns and also certain people ending up in certain kind of like lucrative jobs versus ending up, you know, in incarcerated. Things like going into debt, you know, I mean, all of these things are are really just leading us towards a place where we are going to see misuse, misunderstanding, misappropriation. And and so and as I was saying, you know, just a few moments ago, I just want us to be careful not to take a survey response as the full picture of what's going on. Right. So if we can't be sure about that, then maybe it's not a good a good place to apply G was, you know, or to create a polygenic index. Makes sense. Tracy, you work with children and specifically those with intellectual and developmental disabilities. How do you think any of the genomics techniques that we've discussed today actually inform successful treatment and results? Do you think there is an issue of accessibility that the genomics community needs to work on? Thanks so much for the question. So, you know, interestingly, when I think of genomic technologies and thinking about this panel, I was thinking less about the use of PRS or, you know, polygenic indices and more about kind of advanced technologies like whole exome or whole genome sequencing. And I think, you know, the title of today's round table, the promises and pearls is something that really applies to your question. So, you know, the promise of these advanced genomic techniques like whole exome or whole genome sequencing is that they have the potential to give us a lot more information about the biological mechanisms that underlie certain conditions associated with intellectual and developmental disabilities. They can help us identify targets for treatments, especially for symptoms that might be worth treating, you know, such as anxiety or, you know, hypersensitivity to sound or, you know, other things that can really impair functioning. Pharmacogenomics is a field that is really advancing. It's, you know, the idea that, you know, a certain variant might make you more or less likely to respond to a certain medication is certainly a promising area of genetic and genomic technologies. And finally, what I think as more genomic diagnostic technologies are being utilized in, you know, cases like intellectual and developmental disabilities research, it can be a real tool for people in disparate locations who might have a shared genetic diagnosis to find each other and potentially build support systems. On the flip side, I think there are a lot of potential pearls. One is that, you know, the idea of, you know, diagnosis can easily perpetuate the idea that intellectual disability itself is something that needs to be treated or needs to be cured. And, you know, you asked about access, you know, my perspective on the question of access is, I think, really colored by my clinical experience, where, you know, as a former primary care pediatrician, I've seen a lot of the barriers posed by restrictive insurance coverages, long wait times for genetic clinics, the multiple encounters that might be required to take advantage of advanced genetic technologies. And as a clinician, I have to admit that I've sometimes made a conscious decision to invest my energy in a case where a family might have limited financial resources or limited wherewithal to link them with services like, you know, early intervention services or speech therapy or, you know, some such service rather than genetic technologies. I think that certainly contributes to disparities in who is contributing genomic information to databases who ends up having the opportunity to participate in research, who has the ability to take advantage of participation in research once it's offered. And I think all of those are things that we should keep in mind as we're thinking about the problems and perils of genomics. Absolutely. Chris, when it comes to effectively communicating social genomic science to the public, what lessons do you think public institutions can learn from community stakeholders as well as private companies? That great question. That is such a hot topic in my area right now in autism. In fact, there is a large debate going on on Twitter earlier today. I checked because the piece came out in the website Spectrum News, which talked about how some researchers who work on autism are afraid now to say things sometimes in their talks because they're afraid they'll be canceled. So let me talk a little bit about our experience with that. So we often see that, for example, when we talk about using genetics and genomics in autism, a number of researchers will just write in their papers and this can be used for family planning purposes for families and just not maybe even really think about that. But to a number of people who are in the autistic community, that's advocating eugenics, right? So I think we don't even agree necessarily on what the definition of eugenics is in every case here. So in fact, when we published a paper, which I put in the chat earlier in answer to someone on genetic literacy, it worked a little bit with autism and we put the paper out. And sure enough, we had someone on Twitter call us out and say, I think researchers like this don't understand the implications of what they're talking about, even though we didn't talk about family clinic at all. But I thought that might happen. And so we had actually put a statement in our discussion that said we want to explicitly state that all eugenic applications should be important to clinical scientists and biomedical researchers. So I was able to say on Twitter, hey, if you look in the paper, we actually thought about this and that statement is there. So I think more researchers really need to talk to people from their community and again, understand what's going on and understand how something that you might think, oh, everyone should agree with this or this is no big deal. The statement, that's not true, right? It is a big deal. So I think that's really important. And then the second part of your question was about companies. We see an autism, for example, there are already companies that are offering genetic testing for autism, which again will lead to family planning, which is problematic. And also the state of genetics and genomics and autism, as in with some forms of intellectual and developmental disability that Tracy works on is so unclear. There are so few tests that will actually lead to an answer in the first place that I think there's a real concern about over promising with what what some of the companies are saying in their marketing. All right. The next few questions are for all the panelists. So please chime in with any thoughts that you have. Is there a continuous unresolved tension between scientists who want to study certain social and behavioral topics, especially within the genomics context, especially with populations who have been underserved in the past? And what obstacles do we need to overcome to build community trust with scientists, especially where the value proposition for the social genomics topic is slightly unclear? I'll ask Chris to go first. OK, all right. So I think, again, we talked about the sum in the chat earlier, but actually engaging with communities. And so I'll cite another example on the Autism Committee, which is a study called Spectrum 10K, which was proposed in the UK and they proposed to sequence the genomes of 10,000 families or individuals with autism. And a lot of the language that was put out around the story, just a study, excuse me, just caused a lot of angst in the community. And there was so much pushback that the Wellcome Trust, the funder actually paused the study and forced the researchers to go out and do more community engagement before they could come back and restart it. So that's kind of an ongoing tension. So I think doing true community engagement and actually working to earn trust instead of, again, so many scientists. When I talk about science communication, I talk about the deficit model of communication, which is what so many of us use, which has an assumption in it that, oh, when the general public learns what we know about science, they'll act the way we think they should act, which is obviously not true, right? That's based on so many faulty assumptions. So I think scientists need to understand more about that kind of communication theory. I'd like to chime in too. I think that I just was thinking about what Daphne was saying in the prior panel about Indigenous-centered and Indigenous kind of lead research. And I think that if we look back at the genome projects of the 2000s, you see a lot of community engagement and more towards the further upstream in the research process, more towards the warming of sampling protocols and just having different stakeholders, but especially underserved communities or populations get involved and be at the table when decisions were being made before sampling was conducted or before research was conducted on the samples, right? And so I feel like that is something that we might want to advocate for this community as well, to have more of that kind of inclusiveness in the beginning rather than afterwards where you're like, okay, but how did that affect you, right? I also think we've been talking about community trust. And I think we need to remember that the community is not monolithic, right? That there are a lot of different stakeholder communities. They have different interests in kind of the level and type of information, strategies for delivery of that information. They have different concerns about the scientific and the medical community. And they are often contradictory. I think I've been involved in some groups where the people who are most active tend to be very high information consuming and often very highly resource. And they are looking for a specific kind of information and there's specific types of communication that will help build trust with those communities. And there are others that are really looking for different types of information. They're looking, they're more interested in addressing concerns about data privacy or how data might be misused. And those really call for, I think, different communication strategies and different types of engagement. All right. The next question I have is, do you think that there's meaning in providing correlations? This was talked about a little bit during the last panels, but do you think there's meaning in providing correlations between genomics and any given social trait as a curiosity with plenty of nuances and disclaimers included such as FAQs? So for example, studies like intelligence, homosexuality, et cetera, and to give people liberty and information. Reena, do you want to go first? Yeah. I mean, I definitely think, as we've been talking about this whole meeting, that it's essential and it's a first step, but it is just the first step, right? Because it's really great to hear about the researchers that are trying to change curriculum. This is really important. And I wonder if there are some, if we can put our heads together and think of some policy that we could have coming from funding agencies or other entities like the NIH where there's some sort of incentive to, and not just incentive, but kind of a real push to have some kind of public communication aspect of the research. I wonder if that's possible, because I do think that it's going to have to be more than just FAQs, right? Because, and I agree with what some of the other panelists from earlier today were saying about how there will always be racist uptake of genetic research, but at the same time, and that we're not going to cure all of that, but we have to do everything in our power to make sure that we're not complicit with anything like that, right? So everything in our power. And I don't know, we just have to do more basically, more than FAQs. You know, I think I have a slightly different take, and maybe it's my perspective more as a clinician. I think that at least from my point as a clinic, my perspective as a clinician, the contribution of genetics and genomics is so variable. And there's so much variability in phenotypes. There's so much variability in how a particular genomic variant might manifest, that I think it's pretty dangerous for us to start down the path of saying there are correlations because I feel like then, no matter how many caveats you put on and how much back tacking you try to do, I feel like it's still very easy for that to be misinterpreted. I also worry that you all are experts in this field and deeply immersed in kind of genomic literacy and genomic terminology. I'm imagining this kind of wide population of clinicians who you might be relying on to convey this information. And there's also going to be an incredible variation in the way that kind of information is understood by clinicians much less conveyed. So I worry, I think I'm inclined not to talk a lot about whether and how much genomics might predict these other kinds of social periods. That's just me. Yeah, I'm going to add a little bit to Tracy, which is that you specifically mentioned the study on homosexuality. And I think it's hard to say. So just to be spicy here, there wasn't a paper that came out a number of years ago that more recently that looked at sexual behavior and defined that as having one sexual encounter. And this was taken by many people as looking for genes for homosexuality. I would argue with the basic biological premise that having one same sex encounter equals a pre-election or however I've stated to homosexuality, which is not what the researchers said. I believe those researchers, I know them, I believe that they attempted to be very careful about their communication. They had the FAQs, they had a lot of stuff that did not prevent that paper from being misinterpreted in many, many ways, right? And even apps forms that were on the basis of taking that genetic information. So you can look in your own genome and look at, see if you have those markers. So it is a really difficult and thorny question. But when we live in a society where information is great, but I think it's very difficult, as Tracy was saying, to help everyone understand exactly what some of that information, all the caveats that should be taken along with that. And I just want to also add that this is real for me as well. I have a child who is out and transgender and there are states that we cannot visit. There are colleges that she is not applying to in the next few years because she can't go there, right? So the thought of some information being used for discrimination is extremely real in many contexts. And I think that's something that we really have to think more and more about. Absolutely. And I think the topics you brought up here is a really good segue to my next question, which is, I think it's abundantly clear that research within the field of behavioral and social genomics is bound to continue. So not just research, but also influence in private companies and other genomic companies that might use that information for sharing some sort of resources back to the public. So what kind of safeguards or best communication practices do you think are critical that we need to adopt ASAP, to mitigate as much of the negative effects we think might happen? You basically fixed the issue all in one and one question, but I think that is really the fundamental core of what we've been trying to talk about in the panel and in the last few panels. So Grace, Rina, Tracy, one of you wants to try. I'm not sure if this is directly addressing your question for Barnab, but I think that we as academics get easily locked into certain strategies of communication. I've been exchanging texts with a friend during this panel about why aren't we sharing this information through TikTok and Instagram and other venues where people go for information and why aren't we figuring out how to leave our own bubbles and create content and ways of delivering that content that make more sense to the people who don't digest information the way we do. That doesn't answer the whole question, I think, but that is something that I think is lacking in this field. Chris, Rina, do you want to add to that? Yeah, as a person who is on TikTok and puts out multiple videos a day and many of them relate to the topics we're talking about right now, I just can say that while I think that social media is one of the main places that I feel like I'm having an effect on the general public, I think that also it is in the kind of required education where we will have a better chance of making an impact and so I'm talking about like I have small children who just started public school and what are they going to hear? What are they going to learn? I can tell you already that the way that the educators in our community talk about them, it's very deterministic and I feel like they are getting a kind of sense of having some kind of genetic endowment or something and I'm just like this isn't the right direction for them, for us, for my family, for our community, for our society and so if there was something in education starting that young that would be amazing because then teachers would know about it, kids would know about it and not just like me having a conversation with my kids and then talking to my so many followers on TikTok or whatever and I'm saying so I feel like it's always going to come back to you and I think that Daphne and maybe Erin also mentioned this but it's always going to come back to having those policies and those curricular kind of developments in place that are structural and that kind of push back on the structural genetic illiteracy, the structural kind of ignorance and also the structural racism, unfortunately, that is conditioning all of our social environments so we need something that is that structural, that's my take on it. Yeah, I agree and Rena took some of the things I was going to say which is good thing which is that yeah Daphne and Erin talked about the work of for example Brian Donovan which we also recently studied talking about how we need to move genetic literacy from only basic monogenic concepts to start talking about gene bi-environment interaction and polygenic risk scores and that kind of thing so absolutely I think that's something I endorse wholeheartedly and I know Provarna you're trying to to get that at one question and we're kind of answering different questions because that's a hard question to answer right what the safeguards are I mean I think I can only you know I'm not an ethicist that's not my training so I don't want to speak for them but I think there I don't think we might want to be in the business of saying there should be no social and behavioral genomic research I think that's too far and I think there are obviously ethics panels for a reason and there are many ethical standards and I would like to add to those more standards for true community engagement and representing the what the community thinks is important and I think actually Tracy hit on a good example of that earlier and we see this too in our studies when we talk to we and others talk to families they're less concerned about genetics at the time of an autism diagnosis and much much more concerned about getting access to services and access to supports so that's a perfect example of they're not necessarily interested in our social and genomics research right then right that does not mean we should not do it but I do think we should think more about what the community is looking for and how we can use our tools to answer the questions that they need answered wonderful we will now move on to the q&a portion of our session and then actually Chris you hit the name right on the head because one of the questions that was asked by somebody was can you explain what community engagement actually looks like what does it what does this mean in a practical sense for example in the case of the spectrum 10 case study that Dr. Kanra mentioned so can you expand a little bit on what you think just to create give us a tangible idea of what that those two words really mean yeah absolutely and I know that Reena and Trace will talk about this as well but I think ideally it means actually talking to the community before you begin the study and finding out what's important to them and what they would like to do so that's something that Nicholas Sugden is starting in our lab is getting together a panel of neurodivergent community representatives and asking them what what is it that you'd like to know about from things that we study so that would be a great example and then also there are now we're learning about they talked a lot about this as hg including Daphne who had a great session that talked about this as hg last year the human genetics society meeting really we're coalescing around specific methods in community engagement that are becoming more and more widespread so I would say watch the space yeah I totally agree with Chris's points that you know I think we as researchers don't do a good enough job understanding you know what different communities hope to learn from researcher what benefit they hope to gain from research what what their concerns are about research what questions are most important to them and and we need to do better in that space and that's going to help us articulate our questions it's going to help us make our communications more relevant it's going to help our findings be framed in a way that are more meaningful and and like Chris I think there's a lot of exciting work being done in this space and I'm optimistic that it'll get better yeah do you want to add anything to that yeah all right um the next question that we had this is a really interesting one and this was actually a question that was asked a little bit earlier but I think there's deep relevance now which is in a clinical context it seems like many patients are confusing polygenic risk scores or indices and monogenic diseases and apparently certain direct-to-consumer company testing companies aren't always clarifying the difference but with their within their reports so who is responsible for making these clarifications to the general public you know and I think it kind of um goes back to Tracy your your point about training clinicians so I would be really curious to hear your thoughts on that um it's definitely a space where we need to do better you know actually I am aware that I think NHGRI you know has is undertaking a lot of efforts to say you know how do we better train not just the research workforce not just you know kind of clinicians at the top level of training but everybody in you know better understanding basic principles of genetics and genomics better understanding how to communicate about them and I think in some ways much of the responsibility is ours to understand how to you know simplify our language and how to make ourselves you know kind of better um more effective communicators in um in conveying the principles of genomics and what what it does mean and what it doesn't mean yeah my colleague Susan Persky here at NHGRI is doing she works in virtual reality actually and is doing some studies where medical students come in for virtual reality encounters with patients who are obviously made up and they're studying actually the intersection between having polygenic risk scores or not as a clinician in that space if you had that data does that change how you treat the patient and they're also looking to see how race affects that and also looking at body type as well so kind of the intersection of all three of us to try and understand what more we need to understand in that space so and has some kind of counterintuitive findings to what you might expect as far as how polygenic risk scores affect how people are treated so yeah I think absolutely this that's an area where we need a lot more work yeah I think that um then then Sponham um you know has done a great deal of research in this area in terms of race and racial biases and so um yeah I think that clinician training medical education is one place um but there's still this issue of the companies you know companies kind of doing things that the science community isn't really um isn't okay with at all and that sets us back you know a great deal and so that's a regulation issue right so that's something that um is again like more of a very far upstream kind of issue that has to be addressed um it has to be something that we have to think about what are the possible ways that companies will take this research and then turn it into something that is ready readily available to the public as the prior panel was talking about you know and and yet um and that just really promotes genetic determinism and also is um something that kind of intersects with people's um with clinicians biases as well right and um and takes us further into a place that we don't want to be so. And you know Provano you were I think I was thinking mostly about clinical testing you were talking about direct to consumer testing I think one thing that I think about um that I think affects both of those spaces but particularly the direct to consumer testing space is you know our interpretation of genetic results is changing every day you know as we gain new knowledge our understanding of you know what a gene does and what its implications are in terms of you know whether someone might have a certain symptom or certain condition is changing and that kind of movement and that kind of uncertainty I think it's really challenging to convey effectively um but I also think that we've kind of abandoned our responsibility to do that in many cases especially outside of the genetics field and so and and maybe don't I think there's many places where we don't even appreciate that you know what we know about the relationship between a gene and a condition today may be different tomorrow um and and I think that's particularly challenging and direct to consumer testing where you don't necessarily have um you know an ongoing relationship and so you know it might be hard to go back and you know see if the interpretation of you know your information changes over time you're in the direct to consumer testing space for Barna I don't know if you have that's what I was going to say let's make this a discussion for Barna I completely agree with you I think the problem is is really rooted in um lack of courage from company sides I think a lot of companies have taken the easy way out and not recognize the fact that being honest and informative to the public is the best and the most efficient and important way of communicating about health and when you talk about genetic determinism it is because companies don't necessarily ever really say this is a moving target research is is a human endeavor information is constantly improving it is changing there are differences that are being made so I think recognizing that science is is this this field that is never deterministic but at the same time recognizing that there is value that there is value added in the research that there is true engagement that you can have with doctors and clinicians and and get treatment both those things can be held as true I think that's that's really where companies suffer is when they don't believe that those things can be held true and that the public will recognize that as true so that would be my that would be my answer is is more bravery more courage with companies to believe that the general public has the ability to understand some of this information as well as as long as it is said honestly and again I agree with you Tracy completely I think that there has to be constant engagement you know it's a lifelong commitment that companies need to make with people right this is not a one-off situation where you make one trade you buy our thing and that's it right we want we ultimately the goal of I think health care should be there's no sick people right so it has to be a proactive system rather than a reactive system so you know we're working on it we're working on it so I hope I hope we can deliver as much as you know the academic community is working on it as well I think we have time for one last question I think this is a really particularly important one I think which is when working with genomic data and providing information to certain races slash ethnicities for treatment or even genomic interpretation how can we focus on protecting minoritized communities while also helping them I think I'll add one nuances question which is especially when there are groups of people who have been you know who have suffered for a very very long time within the hands of genomics who don't trust the system at all what would what are certain things that we we need to address regarding that I think that what Daphne said is paramount it's to bring representatives from those communities to not just to the table but as as researchers you know into the community because the community is still extremely white and extremely you know it's like a certain kind of demographic that is not going to necessarily be able to achieve getting you know representing all of the many many diverse perspectives that exist in minoritized communities but having at least having minoritized people as a part of the research process is more likely to generate sensitive racially sensitive and you know racially appropriate research and just in general more accurate research and research that serves everybody and not just people of European ancestry and yeah so it's like a labor pipeline issue it's also a you know where the stakeholder conversation begins issued like a timing of including people from the community and you know I was just thinking while we were talking about how with research oftentimes we offer things like amazon gift cards or some kind of or or like a you know a drug or something to kind of or some kind of you know health services or whatever it is genetic education something to incentivize people to be a part of our research to be a part of our studies but I think that we have to think like okay if we want people from minoritized communities to be a part of even just a conversation we need to also treat that as being as important as getting people into the studies themselves right so we have to think like how do you actually enter into a community especially if you don't if you're not a part of it or you've never even had any conversation with anybody from that community um back when I was writing race decoded there was a um a scientist who was just so active proactive he would just go to community centers senior citizens homes you know all kinds of assisted living places and just talk about genetics and and you know at the time he was very pro using OMB categories and and so he was getting that message out to communities of color and he was a person of color and so it's like you know he was really convincing people to buy into using racial categories as opposed to genetic ancestry categories right he was effective um I'm sure he still does this because he's he believes in it you know but like is any is anyone here doing that level of engagement you know so I feel like and it's not on the individual I don't ever want it to be on an individual to like you should be going in and you know you're a PI go in there and but I'm just saying like I think that we have to realize that there are other people who are engaging with and engaging with the nativist populist um white supremacist you know communities as well people who are like yeah I'm I'm going to explain this to you um and that is scary because their message is getting across right but ours is not as much right so we have to figure out how to actually create these um these upstream conversations and participation really like participatory research right wonderful can I sneak in I want to also add I think there needs to be a recognition of past harms as the ASHG statement just did so I think that's really important to get at the question but go ahead Tracy yeah what I was going to say is um I think like we shouldn't think of you know doing better inclusion whether it's better inclusion of um you know kind of racial ethnic minority groups or you know persons with disabilities as you know charity or a service or you know things that we you know should do because of the right thing to do I think we need to understand that it's critical to us doing better science and um that uh you know if we uh don't address you know uh do genetic research that is relevant to persons from um you know racial minority groups where you know we're not doing the best science if we're not uh doing research that applies to everybody that or that we're where we're going to draw conclusions that it applies to everybody but we don't include those groups we're not doing the best science um and uh and that's uh and having I think a lens of doing better science will hopefully you know help drive us to do better in including these groups and asking the right questions wonderful well with those two three extra minutes that we talked I'm so grateful for your for your incredibly insightful insightful discussion and um just thanking all of the panelists during this during these three hours I will give it back to Christopher Donahue to close this up thank you so much thanks for having us thank you for Barna um so this is Christopher Donahue speaking I just want to say uh thank you to our audience uh all of the panelists the moderators the NHGRI and the NIH this is an event that we have been working on for a year and with the ASHG report and the synergistic NHGRI and NIH efforts to promote equity and combat racism and acknowledge historical harms we can be optimistic about there being progress uh so long as it is progress for all and just to know just say I I think um almost all scientists working today in the genetics and genetics community acknowledge eugenics and it's evils and they really do work with intentions but I think it's this panel as this event has made clear that doesn't necessarily mean that they shouldn't guard against the very real possibility that they are close to repeating the mistakes of the past or that especially through vulgar misinterpreting vulgar misinterpretations uh or especially that through vulgar misinterpretations there are there are those that intentionally misuse their findings so I think we've in this event moved well beyond uh from history to science and our communications around social and behavioral genomics and we would do well to have our historical understanding temper our enthusiasm with the hope that we need that together we need not repeat the past while making the present more just more equitable so thanks very much for your attendance today and all of your uh fascinating and pertinent questions and we will certainly uh we've certainly learned a great deal and we certainly will be engaging more with our audiences in this space thank you very much and have a have a good rest of the afternoon or morning or evening wherever you are thanks