Session 5: Law, Genomic Medicine & Health Equity Conference/Webcast -- Dr. Consuelo Wilkins

[00:00:02]I'm delighted to introduce professor Consuelo Wilkins to talk about she changed her title pathways toward resolving distrust among groups negatively impacted by genomics we could not have a better speaker to address that as wonderful as all the speakers today have already been Consuelo brings it up a notch I think she is a clinical investigator and engagement researcher who is pioneered methods of stakeholder engagement involving community members and patients in all stages of biomedical and health research she's the executive director of the Mary Vanderbilt alliance and associate professor of medicine at both Vanderbilt University Medical Center and Meharry Medical College she has a number of other things and many other things that she does but she is also p.i of the vanderbilt recruitment innovation center a national center devoted to enhancing recruitment and retention of clinical trials and I think probably most salient to our current discussion is the director of the engagement core of the all of us research program where she oversees initiatives to engage research participants in governance oversight implementation and dissemination and her work is informed among other things by conducting more than 70 engagement studios around the country about this particular program dr. Wilkins will speak for 40 minutes and and then when that is up we will have time for questions before we then go back to the auditorium well actually and and we will actually conclude the public part of the program here and I'll say more about that once we're done but it is my just extreme pleasure to welcome dr. Consuelo Wilkins to the podium [Applause] Thank You Ellen for that to kind introduction I feel like I'm set up now to not necessarily do well but it's been really an amazing day so far and I want to thank Susan Ellen and Marino and Audrey for all of the hard work they've done in planning this meeting I think when we were reviewing the list of potential speakers and starting to invite people we we just you know put out the best possible list that we could we could have and amazingly you know people were available and able to come and I think it's been a really rewarding experience and I'm really thrilled to have been a part of it so I'm supposed to in some way sort of bring this all together and also add in my my own views and share some of our own work around this but the idea that we're talking about precision medicine and genomics and equity and and these populations that have often been left out of the discussions and out of the research is is one that I don't take lightly for me as a clinical researcher who spent so much of my time focused on engagement and equity the the leap into precision medicine and genomics was one that I didn't you know that was led by some caution and the caution being you know what will the people say and the people being those who have entrusted me and others like me to advocate for them and to make sure that the research that's being done is equitable it recognizes their needs it doesn't put at unnecessary risk and at the end is likely to be beneficial and so a lot of what we we've heard already today is genetics is probably not the answer to addressing health equity and so in some ways I think a part of the discussion has to be are we being sure not to exacerbate inequities and how can we make sure that as we're building this new kind of medicine and approach to medicine that we're not furthering disparities and when possible can we really start to think about what it means to look precisely at an individual and I think some of the discussions about individuality in the context of being a community I think are really at the heart of what we have to address if we're going to move this work forward so so I think in some ways we do have opportunities to address disparities especially around the health care inequities and so these unjust issues structures biases that happen in the clinical setting and the access setting and the way that we use information that's already available there is the potential that we can actually have some improvements but to do that we have to fill those gaps and make sure we're not going to broaden these inequities sometimes I say it's all about trust and people think that think about that as too superficial but Trust is really important it means that there is a relationship or that there is some acknowledgement of the vulnerability of people and it requires transparency and humility and often in research and academia humility is not in you know abundance so you know the the opportunities that we have really to further the feel required that we we do some introspection and increase our awareness of our biases and how we need to actually bring people to the table from specific backgrounds different backgrounds people who have been marginalized and and not and abused I think we have to come to terms with what some of the terminology that really described this so I could make the case about why we should be doing this but I think many others have already pointed this out but critical to I think the discussion is that we should not forget that it's not just politically correct to have populations represented in our research it is for good science if we're not doing research that is and discoveries that are really relevant to the broader population we should not be funding it people are you know saying and using excuses continuously for you know why we should continue to study these populations that are easier to study there's less heterogeneity they're more convenient and I think we as researchers and funders and policymakers and everyone involved have to be able to say it is unacceptable to continue to do this work and it can't be after all of the scoring is done we say look at the enrollment tables and oh okay that's you know it's not really part of the scoring we need to prioritize this and acknowledge that this is not good science if we're leaving out the populations that are most impacted it should not be at all acceptable that a study is being done about diabetes in the United States and it is not including the people who are most impacted by diabetes so you've seen this slide already and Alice's here I think not about hatted in her presentation that we're still not doing well as far as representation in these genetic and genomic studies we hope that all the all of us research program with its commitment to having more diverse more diversity will help address this but having the people alone without actually understanding the culture and the socio-cultural issues related to them is still not going to be enough there is already an abundance of data that exists showing differences genetic differences in populations and I think we continue to overlook the fact that the biggest opportunity we have right now to actually address health disparities and inequities as it relates to genetics and genomics and precision medicine is actually in the pharmacogenomics space so we continue to prescribe medications to people with asthma and schizophrenia populations that are already impacted by disparities and we overlook the fact that there is already genetic information that we should be using to help guide how we treat people the the opportunities to actually use this existing data to understand some of these differences and eventually get visit props into the electronic health records so that physicians and other providers can make decisions is lagging too far behind we need to accelerate this work we need to make sure that we're identifying populations and minorities who are likely to benefit from it and I think that as we try and integrate all of the data in the world now we can't forget that there's lots of data that already exists that we've been completely ignoring so today there's been a lot of talk about race and ethnicity and Shaniqua and others can correct me if I'm wrong about some of these we we continue to you know use terms and I and I absolutely agree that if we don't acknowledge that there's a need for people from different backgrounds and disciplines to come to the table to have these discussions about race ethnicity and ancestry we're going to continue to falter in this space so as our as part of our precision medicine health disparities collaborative we have dozens of faculty from many different backgrounds social scientists geneticists and everyone in between and we it's easy to replace ancestry with race if you're if you're from a specific discipline and presuming that now we can look at ancestry markers and substitute that for race and vice versa is a mistake that we can't afford to can our mistakes we can't afford to continue so we have to be committed really to understanding what these terms mean and how we can use them and what we should be doing to move the field forward so already today you've heard different commentaries recent publications and trying to come to some consensus about how we use these terms so I'm going to take a quick detour to say what's this person's race what's this person's race I know some of you who are clinicians and seeing and and when you walk into the door to see one or the other is going to make a determination of what her races these are fraternal twins they look obviously very different and you could probably imagine that they have different experiences in fact they will tell you in interviews that their experiences in life walking down the street getting on an airplane very different based on how they're perceived by others somebody's got it's got to answer this so I don't want to have a lot of time so the the the person on the left what's what's her race any guesses no no one's go everything that you were already prompt and primed by the last discussion Colin you knew that was Beyonce yes all right some somebody knew that so you know we we we look at people's external features and we make judgments and the reality is that how people self-described is really important Spiro talked about you know acknowledging that American Indian and Alaska native populations don't really identify by race they focus that you know they identify by tribes tribal affiliations and the entire structure system the OMB categories that Jen mentioned are really designed by people who are not allowing us to identify ourselves I think this from the April this year's issue of of National Geographic I think is really important not because it sort of says what I believe which is that the that there's not a scientific basis for race but that this is part of an issue that acknowledges it's past so in National Geographic actually hired historians others to come in and take a look at their practices review their magazine for years and the conclusion was that they had used racist terminology and demeaning categories and sensationalizing how they describe people and that acknowledgement I think is something that we need to continue to do on a daily basis as we do this work in medicine health in the clinical setting because we often focus on these historical abuses but there are abuses happening every day and we often use this to in some ways invalidate people's reasons for not trusting us and again much of this has been talked about already today but the the categories that we're using and assigning to people these are categories that were intended for oppression these categories were developed to keep people in their place to say that you are not enough of a person to vote to limit your rights to become a citizen to take away your land and rape your women and it has to you know we cannot continue to ignore or imagine that these things haven't happened I'm not fully endorsing that these are the categories that that we should be ascribing to people of course but I think that we should be acknowledging that we are ascribing these to people in ways that they didn't choose that someone else chose and the limitations around them and the continuing consequences of us using them I'll talk a little bit about what we've we did to advocate for a single question for race and ethnicity so currently the OMB categories are race and ethnicity and they really only acknowledge two ethnicities you're either Hispanic Latino or you're not however we're completely wedded to using these categories several people in the room Jenn included we went through multiple discussions about this with people as we try to get this into the all of us research program as one question and every time someone new came into the team there's a no no no this is wrong you could you have to ask two questions it was as if we were you know the the idea that we would change it was absurd as opposed to the idea that there are only two ethnicities being absurd so more to come on that hopefully if I can stop talking too much this is from bio view this is work being done as part of our precision medicine disparities collaborative as well as other large bodies of work happening here but looking at ancestry based on self-reported his Hispanic ethnicity you can see across the spectrum the diversity of percentages of European ancestry African ancestry and Asian ancestry so a person identifying as Hispanic none of them look the same as far as their ancestry markers however they may or may not have a similar cultural experience through our collaborative we've been spending a lot of time in Miami and and you definitely don't want to put people in the same category without asking just because of they identify as as Hispanic or Latino or we've we've identified them in that way so it's important for us to consider those things and and we also have emerging work that's looking carefully at this intersection of self-identified race and ancestry markers and what that means really for genetics you know which of these conditions are truly related to genetics versus social environmental structural situations and a lot of it is pointing to as those of you who study disparities and health equity might imagine most of it is not associated with a genetic risk this plot is really showing that much of what we found is related to kidney disease and we have some amazing work happening with Leah Davis and Nancy Cox and Kyra Atkins who's a who's in the room is a Meharry PhD student that's really looking at how we can use this intersection of data to more precisely understand what's genetic what's social and and and what's still a gray area so this is an example of how we as researchers need to again acknowledge be humble and recognize what we're saying so this is a finding from a recent report the average African American genome was seventy three point two percent African 24% European and 0.8 percent native so this was that's the fact that's data from the study then in a commentary that was in a different publication the quoted remarks European ancestors tended to be male while African and Native American ancestors tended to be female that imbalance reflects the fact that for much of US history European men were the most aggressive colonizers so for the women or Africa in a Native American American Indians reading this as if the European men you know walked into whatever version of the bar there was in the 1600s and you know really just you know was pursuing them you know how can we go out to dinner it's me not him I'm better that's not what was happening right these women were being raped and so it's it's as if we're rewriting history to say that you know they were colonizers they were you know the people you want it to be with and when we're using this kind of language we shouldn't be surprised that people are distrustful because now it's 2015 and you're using my data and and basically saying that something happened that most people know didn't that or yeah we could certainly say maybe they were using some finesse language around that but I think it's deceptive and I think most people especially people from these communities and backgrounds would say that so a big issue we've heard it all day is again related to trust the issues around the history of eugenics and discrimination the concern about economic loss criminal justice system all these things are really at the forefront of people's minds and Ellen and I and others in and get precise have had a number of discussions about this and that is just because the risk that you've identified is very low doesn't mean that people don't perceive their risk to be different so by dismissing their beliefs and saying oh that's not likely to happen that so little chance of that happening does not make them more likely to want to participate it actually is probably going to have the opposite impact because now you're saying it doesn't really matter what you think it's just really not likely to happen when everything that they know is the people and their families and their communities are the ones who bear the most risk so a one out of 1,000 risk for you is trivial a one out of 1,000 risk for them as I'm probably the one somebody in my family it's going to happen to us because we're the ones who are always bearing the burden the risk and abused so you have to actually acknowledge that they have a reason to feel that way it is not beyond the the likelihood of that that this is going to happen to them and I think it really means we have to move from labeling people as distrustful and having low trust to us not being trustworthy so how trustworthy are we as researchers clinicians policymakers why is it on why is it the onus of the people to trust us why isn't it on us to be more trustworthy and transparent and why isn't it our responsibility to communicate better to them as opposed to saying they didn't understand so some of our work along the lines trust actually focuses on how we better measure trust and so we have a series of projects that are happening one of them is looking at the current measures of trust that exist now because in my mind we can't really know if we're improving trust if we don't measure it but the the few tools that are out there that measure trust I think we think our team thinks doesn't actually capture the real dimensions of trust for some populations so if we again continue to do the work with the majority people who are affluent and resource then trusting is okay what does your CV look like okay nope they they went to you know the best colleges and you know they they have whatever rating on Yelp Google I don't know what their rating people on and so their office is the cleanest they have you know marble in the bathroom whatever you know so some of those things are associated with trust but for people who have been abused or marginalized or not at the decision-making table they're worried about safety they're worried about harm there were a fairness and these measures don't actually assess that so as part of as part of the body of work and if any of you have developed instruments before you know this is not a a quick process and I'm not a social scientist and have really enjoyed learning from social sciences about how to do this in a rigorous manner and and I'm always reflecting on how I've in the past thought that this was trivial that you you just ask the question and move on so we we've been partnering with Derek Griffith to help develop these trust tools as well as Ken walleston so creating the focus group doing the focus groups extracting the information and moving it forward so so on the after the initial conceptual framework these are all domains or areas that have been affiliated associated with trust and so the safety fairness those things are there and more likely to be seen a racial and ethnic minorities but less likely to actually be in these instruments what we've actually found from our focus groups though our additional areas associated with trust and the idea that the secrecy is different from honesty is something that we've had many discussions about and so the issues around secrecy really come to deception and not being confident that people are not necessarily telling the truth but they are purposefully deceiving you and I think that underlies still a fair amount of of what we see in many populations so it's not highlighted so I'm not sure if you can see it here this is a pointer but in this box here community involvement and research community benefits these are things that Spiro talked about and others as well but the idea that all of the protections we have in place are really intended for the individual is not one that many communities especially minority communities community that are underrepresented in research this doesn't resonate with them so when we talk about protections of privacy protections of their data protections of their genetic information we're still talking about the individual level and that's now that's not how they see it it is about their community they want to know what protections are in place and they want to know how we're getting to the table to impact these so we've also thought a lot about how do we how do we gage communities and individuals who are experiencing disparities in the work and we a few years ago tried to shift the discussion from return of results to return of value and so this is the framework that we sort of created around that thinking about what is valuable to provide to people and that gets to some individual benefits but also community benefit and it's still I think a challenge for many people to to recognize what it really means but it's not just returning results as returning information it's making sure that the information they receive is relevant and easy to understand and not actually going to cost them something I think as researchers we often forget but reefs of the research we do cost the participants to participating them often and even when we do is minimal and barely enough to perhaps cover their parking or transportation but we're not really paying them and I don't think most people want to be paid they want to be valued they want to know that what they're contributing is worth something that you recognize it and not that they're a number and you know you now own the data and you can do whatever you want with their tissue and information so we've thought a lot about that and we're trying to move this work forward recently did a survey almost 2,500 people and we wanted to really understand how they perceive value as it relates to research so we asked a series of questions it was around precision medicine genomics so there were a number of genetics genomics questions there interestingly the most valued one in the list the two actually two most valued were around genetics so people most valued having information about their genetics as it relates to medicine pharmacogenomics and then close behind that was genetics and risk of getting a medical condition but you can see here life information about lifestyle risk interest in participate in clinical trials ancestry monetary compensation in the middle of the list there so we we had enough people in here that we can look at these different categories and you'll have to wait for our paper to come out to see all of that but we did find that there are some differences by race and ethnicity we asked that one question as well as age and education but there was no group that had monetary compensation as their most valuable a most valued thing probably the group that valued money the most was the youngest group of people Touche I will show you this one though so we asked the question about value for each of those individual things and then we asked people to identify their single if they he'll look if they can only choose one from the list and the the one in yellow there is how my genetics affect my risk of getting a medical medical condition so this was this the item that was single singularly most valued but it varied by education so on your right the people with advanced degrees like many of us in the room most valued the genetic results and then when you get to the high school education or you start with a high school education or less on the right the the interest in genetic risk disappeared the blue bar is actually interested in being connected to people like me so people wanted a connection they want a relationships they they were interested in learning from other people we think but there was relatively no interest in these genetic results so these are all the other things there and again you'll get the pay will hopefully will be published soon but it just went away this interest in genetics went away and I might say this means that these people are smarter than those of us with the advanced degrees that they know we should be looking at things other things and considering all of the other determinants of their health so switch and try and finish up so we'll have a little bit of time for questions many people have talked about all of us and I had the pleasure of being part of the pilot and and working on getting input from different people around the country I think several people have mentioned it we tried to come up with groups of people who we thought would be missing left out not able to participate so diversity we talked about as differences and including people who are underrepresented and then we also had inclusivity thinking about people who might have substantial barriers to participating so people who are blind or deaf or a lack access to the Internet those sorts of things so I honestly and I said that's just some people before I honestly thought I would put up this list of 16 different groups and somebody would say that's really too many you can't do that we don't have we don't have time and and that didn't happen so we went around the country doing these you know in-person studios where we brought the people to brought people to the table and in some ways it was weighted so that every group sort of represented a voice and I think this was really important because if you look at all of the groups together by the population size then the minority voice gets you know diluted and you don't hear the the differences so we we did all of these different studios of almost half of them were more racial and ethnic minorities this is a different way of looking at the specific populations you we were in Appalachia and in South Dakota and South Florida thanks to ol mean for helping with that and also some of the interviews he mentioned earlier today but this was perhaps one of the most humbling experiences I've had because I get to work with communities locally and I get to work with leaders and community engagement across the country but being in people's neighborhoods and the you know the south side of in church basements on the south side of Chicago and in community centers in Southern California that used to be places where gangs controlled and seeing people who are deaf and blind who really wanted to participate how they talked about no one ever really asking them or inviting them to be involved was was really quite you know a humbling experience for me and I would say others in the team I mentioned this already it was really busy six months and I think people who don't do engagement sort of didn't imagine that we could actually pull this off like you're gonna do what you know how and people are gonna come and talk to you yes but it only worked because we worked through there we went through their communities we went to their community organizations we didn't go to town and say you know Vanderbilt I'm a hereo showing up come out and see us we worked with their community organizations to do this we did find that there there were differences in what people most value so the the graphic that I showed you earlier really is an extension of that work this is a small group of people so we really wanted to highlight that this is not intent to say these populations this is what they want or this was most important or to use it to make quick decisions which is what we often do but the intent was really to show that there's a diversity of opinions and needs and so this is what the current question looks like in the all of us program which will have a million people it's actually a branching question so the first question includes that so the first part of the question includes the bolded area so what I wanted to say what best describes you but it doesn't say what's your race or ethnicity so or you get to identify you can check as many as you like when you identify as American Indian or Alaskan native you can also enter your tribe select your tribe or enter the tribe that was a there were Mets what I mentioned earlier there were many many conversations about that we also get to work with the different participants around the country Laura Bosco is part of of our engagement core we're actually integrating the voices of participants into the governance and that has been really amazing to to see people from all these different backgrounds who really want to see precision medicine move forward come with their ideas and be embedded in with the highest levels of leadership at the NIH and so I think we're going to learn a lot we're already getting to push the envelope so things that people told me couldn't happen before like I couldn't pay people I couldn't give them advance their travel those things and when there's a lot of money on the table all of a sudden we can figure out how to do that so so I'm really excited about those opportunities to expand beyond our work and I really think that the opportunity to work as real transdisciplinary teams is is there's no better opportunity to do that when we talk about precision medicine and equity health equity and so you know we have this amazing you know large relatively large team of people at Vanderbilt Meharry in Miami who are coming together to try and solve some of these issues and I think that to do this work we really have to be open the doors and make it easier for different disciplines to come and do work in this area so I'll leave this list here as as we take questions so so this is my challenge or you know sort of things that I think we need I need I think we need policies and and laws that recognize these varied perceptions of risk and understand the complexity of that for people who are from communities and populations that have been historically abused spero talked about this I think we need policies that and laws that protect communities there are plenty of obviously not the sovereignty and the government that exists but communities have many communities now have community I are bees and they want them they want their voices to be heard they want to have a say and the research and the policies and also acknowledged by Nanami and Spira the you know it should be required it should be expected that there is consultation and meaningful involvement of American Indian and Native Alaskan populations and I would say we should be eliminating the use of race in in genomics and I think which it it should be replaced with terminology that allows people to self-identify so if people want to acknowledge or identify a race then they should have that opportunity but if they don't they shouldn't and we should allow people to identify in ways that really help us understand who they are and how we can best improve optimize and keep them healthy thank you [Applause] we have time for just a few minutes before we close if you have a question please come to the mic and identify yourself and but I but so so thankful for you for such a great talk Consuelo so I'm going to give you back I I think it should allow us to acknowledge the varied ways that people are underrepresented but also how they identify but more importantly why they're actually experiencing disparities so poverty poverty poverty poverty you know the the the first four or five reasons that you know people in the United States are experiencing disparities but there's certainly many other things that Dana talked about with you know the education system and the structures that are in place that allow racism to continue to be a factor in health so race isn't necessarily the problem but the racism is and so how people perceive being discriminated against their perceptions of being marginalized all of those things are really underlying these inequities but they're much harder to ask or ascertain and so our default is you know these physical features and categories that we use but if we're really thoughtful and able to I don't know I mean at least if we could start to ask those social determinants health questions that about the IOM you know said years ago that we should be asking about other factors or do alright are you worried about eating food you know how do you give are you worried about paying your bills transportation do you have a car there are lots of other things that that we can actually pull in to understand these these determinants of health other than race and I think the other issue is that race is so often uses this proxy for those other things when they're not necessarily appropriate and when we do these comparisons because race is often a proxy for poverty we're not comparing you know the same groups of people we're comparing poor people to people who have more resources and so I think if we can enrich the way that we actually understand people that's going to be much more meaningful than these you know big lumps of categories again people who working with folks in Miami and understanding you know the very differences in how Latinos and Hispanic people identify there is no one bucket you know there are many different buckets there and I would say we often talk about other groups you know Asia is a big continent and so is Africa so often in here when we say african-american we're talking about descendants of slaves but in there plenty of communities where there are African people who know what their home country is and they identify as ethnicity so I was like we're just ago so and the list of sixteen you mean for that last question so we so we did have to do this really quickly and so some for some groups that we would ideally want to be able to identify it's difficult to do quickly so it's easier for us to get to community health center patients who are more likely to be uninsured underinsured and low-income and I just talked about proxies and so I'm admitting to that you know issue here but it's hard to recruit people say you know if you're poor we need you to come to this focus group so there's some nuances around that and and how we considered it but I would say that you know especially in some of the rural communities and definitely with the community health centers to the degree possible we included people from different income levels and educational attainments it's much easier for us to do here in Nashville because we actually have a large database of people who have done community engagement studios with us and we have more information about their demographics but quickly going to these communities we couldn't really do that I'm not sure that I fully understand the difference between secrecy and privacy either so again in our in our conversations and Sarah Stallings has been part of those with with Derek Griffith and others but our impression from reading the transcripts and and sort of the the pull outs is that the secrecy piece is that it's probably related to distrust more than lack of trust and that's also a big you know sort of can of worms whereas you know some people think that distrust is on one end of the spectrum and Trust is on the other but what we're finding is that it's probably more likely that Trust is on one end of a spectrum and low trust is on the other end and then there's a distrust and not distrust scale so that people who have been repeatedly harmed or marginalized or abused or at risk are inherently not believing that you have their best interests in mind and so I think when we allow xun's we think about privacy and confidentiality keeping that information safe it's like the opposite is not keeping it safe and it just happened or there was there are many reasons why they might but but if you intend it if you never intended to keep this information from these specific groups private or confidential or protect them in some ways that's sort of where the secrecy and deception piece there so there there's the there's a mal-intent that's that's baked into that somewhere but if anybody else has ideas about how to help us distinguish between those two we have lots of coding to do [Applause] well this is the close of our open session I just want to thank not only Consuelo for that wonderful way to end up the day but also all the amazing talks that we've heard today and all the tremendous engagement from the audience and I actually don't have the list of all the responsible staff in front of me except to say that we sure do have a lot of people to whom we are deeply deeply grateful for making this thing work and so we will reconvene and for those of us in the follow-up working group we will reconvene in 15 minutes back in the auditorium but just once again thanks to all of our terrific speakers and to all of you for engaging these really complex topics [Applause] you