Transcript
Episode 8: The Black Genome Project
KEY TOPICS
Introduction to the Chelsey Carter, PhD; Brett Marique, PhD, and the Black Genome Project
Discussion of how the Black Genome Project is collaborating with the Black community in St. Louis, its local nature, and how the team is collecting data
Discussion of how the Black Genome Project is using storytelling, focus groups, structured surveys and why they chose this approach
What has been the most powerful part of what have you heard from the Black community in St. Louis?
How do you approach people as an expert in their own lived experience within healthcare and genetics?
How can the Black community exercise agency over their genetic information?
Discussion about understandings about nature v. nature and genetic literacy
How do you talk about ideas like rejecting race as biology, race as a social construct, racism underlying health disparities and the need to diversify genomic data sets?
Where the Black Genome Project is headed in the future
Interview
Susanna Smith
Hi everyone. This is Genetic Frontiers. A podcast about the promise, power and perils of genetic information find us wherever podcasts are found and go to geneticfrontiers.org to join the conversation about how genetic discoveries are propelling new personalized medical treatments, but also posing ethical dilemmas and emotional quandaries.
I'm your host, Susanna Smith. On today's episode, I will be talking with two guests. Dr. Chelsea Carter, Assistant Professor of Public Health, who is also affiliated with the Department of Anthropology at Yale University. Chelsea is a Black feminist anthropologist of medicine, public health, and race; she is from St. Louis, Missouri. My second guest today is Dr. Brett Maricque, a geneticist, assistant professor of genetics, and co-director at the Center for Community Health and Partnership and Research at Washington University School of Medicine. He is also a faculty member at The McDonnell Genome Institute. Together, Chelsea and Brett founded the Black Genome Project, which is dedicated to understanding how Black communities value their genomes and genetic data and how genetic research is impacting Black communities in St. Louis.The Black Genome Project aims to create a space for Black people to evaluate, learn, and take ownership over the future of genomic medicine through focus groups, interviews, and community events. The project provides Black communities with education and resources to understand genomics.
The Black Genome Project is collecting stories and using photography to capture the lived experiences of Black people with illness, healthcare, and genetics. Science, specifically the fields of genetics and medicine have complicated histories with race and racism. As we delved into in an earlier episode with Professor Alex Mina Stern discussing the eugenic origins of the field of genetic counseling. And Chelsea, Brett, and their team at the Black Genome Project work to acknowledge this fraught history and eliminate racist biology from conversations about human genetics. Understanding this history and how it influences genetics and genomics today is critical to avoiding the white supremacist thinking, which underlined the eugenics movement and was hugely influential in the early 20th century.
The Black Genome Project is focused on collaborations with the Black community in St. Louis but its work has wide-reaching implications for how to conduct community-led genomic and genetic research. And I'm deeply interested in the questions the project is examining like, “How does a person exercise agency over their genetic data? And how do you decide or control how your genetic data is accessed or used? And in genomics research which relies on large data sets, what does collective data ownership mean and how is it thoughtfully exercised?”
Any of us could do a cheek swab from a direct-to-consumer genetic testing company. The company would tell you what your DNA suggests about the part of the world your ancestors likely came from or report on certain health risks or propensities. The Black Genome Project is very intentionally not doing this type of work. They are not seeking biological samples currently or telling people how to make sense of their DNA. Instead, they are asking people what meaning they attach to ideas about genetics and health, ancestry and kinship.
And I think this is such a powerful approach.
I'm a person living at risk of developing an incurable genetic disease. And through a genetic test my mother underwent I learned that my chances for developing her condition are 50-50. But genetic testing can't explain all the ways genetic disease has influenced my life from choices I've made about relationships to career to having kids.
The Black Genome Project approaches people as experts in their own lived experiences with genetics and heredity. That's something I really resonate with and I'm excited to discuss.
Thank you for joining me today on Genetic Frontiers, Chelsea and Brett.
Chelsey Carter
Thanks for having us.
Brett Maricque
Yeah, thank you, Susanna.
Susanna Smith
So I've talked a little bit about the founding principles of the Black Genome Project. But could you guys talk a little bit more about the specific work you're doing with the Black community in St. Louis?
Brett Maricque
Thank you, Susanna, for such a great introduction to our work.
When Chelsea and I were thinking about the kind of impact we wanted to make in the world of genomics and precision medicine. It's sort of assumed that by having a genome sequence, you're empowered to do something. And we sort of wanted to bring that question forward and ask, in a really basic way, is genomic sequencing valuable for everyone? Is genomic sequencing something that everyone wants to participate in? And you could ask this question about any population but what we were really interested in is addressing this in the context of the wave of diversity and equity and inclusion movements that were happening throughout the corporate world and the academic world and specifically in the biomedical research and genomics world.
Specifically what I'm talking about here is the idea that most of the work that's been done in genomics has been done with patients or participants that are of European descent. And less than 15% of the people who've participated in this globally are non-European people. So if we're thinking about diversity, equity, and inclusion in genomics, what we're really talking about is enrolling people from non-European communities in projects that collect their DNA and sequence their genomes and oftentimes don't take the time to understand how being excluded from this work and being harmed by work similar to this in the past, and in the present, has impacted people's relationship to the science itself and impacted their ability to engage, understand, question, and benefit from the advances that have been made in genomics and precision medicine.
And so as genomics is becoming mainstream to where people are regularly showing up to their healthcare visits and hearing about genetic testing or seeing commercials on TV about ancestry.com or hearing about 23andMe from their cousin or their brother or their friend and not really feeling like they belong in that conversation, not really feeling like they have an entry point into those projects, it brings into question like whether or not these advances will have the sort of broad impact there promised to have. You know the goal of precision medicine is to create tailored healthcare, the extent to which that will become true is really contingent upon the extent to which people are part of the genesis and production of the knowledge that drives those innovations.
I guess we went all the way back to like the beginning in some sense to say what would happen if we just went out and asked people is this something you want to be part of? And what questions do you have about genome sequencing? What concerns might you have about sharing your DNA with your doctor or with a scientist? What type of ownership would you expect to have over the work that comes out of that and all of those things came together into this ethnographic approach that we've taken that infuses community-based participatory research practices and informal genomics education.
I would love to hear Chelsea's thoughts on the local nature of the project.
Chelsey Carter
Sure, I appreciate that really good layout of our project and kind of the work we've been doing. I think one of the things about the local that really matters is I think partly how Brett and I even met one another. We were working on a COVID-19 project together where Brett was kind of doing a lot of the community-engaged work and I was a phlebotomist working in the community. And I was still a grad student and I was writing up my dissertation specifically looking at the experiences of Black people in the St. Louis area with a rare disease like ALS. I was really struck, I think even in doing the research of my dissertation that a lot of people really had strong feelings about St. Louis and how they both navigate care in St. Louis, how the racial politics shaped St. Louis, how economic disinvestment has impacted certain communities in St. Louis.
It felt like instead of trying to say something big about ALS and rare disease and the United States broadly, but really say something impactful about what St. Louis is meaning and how that's showing up for people in the St. Louis area. And there were a lot of really big findings there. But I think I took that kind of lens and that spyglass kind of in a very Zora Neale Hurston way, who is an acclaimed writer and anthropologist, to really kind of say, how do I and how do researchers really think about our local understandings of a particular city and context and how does that shape the work that we're doing?
Particularly when there are large research-1 universities that like encircle a lot of the communities that we're working with. And so for me, I think that a lot of times, and particularly in public health, we're thinking about really big studies that can impact large populations. And we're trying to always say something about those big populations through any of our kind of quantitative approaches. But I think one of the really important hallmarks of ethnography is it kind of says to us, actually, instead of trying to generalize and look really big, how about we come down a little closer to the local level and see what unique characteristics and phenomenon are happening in this particular location. And I think for us in the Black Genome Project, really thinking about St. Louis. How does that shape and map onto certain kind of, larger conversations about genomics and precision health but also how does that then map onto people's individual lives in their local communities? And I think that really having this lived experience perspective allows us to be able to be more informed in our interventions and informed in kind of the research that we collect with different groups, particularly Black communities.
Brett Maricque
And so Susanna, we've taken this local focus and we've designed our project to be consistent with those local values. And so what I mean by that is that nearly every person who has contributed data to our project is someone that Chelsea and I or I have met personally out in the community.
So we've collected data in three ways. One is through a digital survey. Two is through focus groups with community members. And then the third way is through one-on-one interviews with individual community members.
We were out in the community at farmers markets, festivals, food shares, community centers, schools. And we were handing out postcards to people that we met. We would share a bit about the project. We would ask what people knew about genetics and we would provide an opportunity for folks to engage. In many cases, we were collecting data out in the field. So we would bring iPads and if someone was interested, we would sit down and facilitate that survey right there where people were.
And this has enabled a sense of community within our project that wouldn't have been possible if we would have just posted our survey link on Facebook groups or mailed it out through listservs and collected data in a much more passive way. I think this really just speaks to the local values of our work.
Susanna Smith
Yeah, and one of the things I really love about this approach you're taking is it seems like it's inherent to developing trust and relationships, which when you're doing community-led research that's critical. So I wanted to ask you, this focus you have on storytelling and photography as a part of the project.Could you talk a little bit about that and how the storytelling intersects with focus groups, but then also you have this structured survey piece? How have you decided to take this approach and what have you learned from it?
Chelsey Carter
I really appreciate this question because I think that there's a researcher answer to it and I also think there's just like a human, person-to-person answer.
From a human perspective, and I think getting at kind of the core of your question, I as an ethnographer, I really do believe that qualitative approaches, particularly for communities that have been historically underrepresented, but also historically marginalized intentionally by science and medicine.
It's really, really important to like start with just listening. I think a really big fear that I have in doing work in precision health now is that I don't think, or rather I don't know, if the Black community should just automatically trust science and just decide, oh, I'm going to sequence my genome and have it be a part of some large-scale study.
Black and brown communities, particularly Black communities in the US, have done that before and that hasn't always worked in their favor or been something that actually improved Black health outcomes in the United States. And so for us, it was really important to really kind of see the qualitative methods as a way to listen to individuals, to build trust, but also to hear concerns and hear critiques, even if that was of the very institutions that we worked for and work with. Really like making space for people to be humanized and also to be seen as experts and knowledge producers. A lot of times people that are racialized as Black, particularly in science and medicine, are always extracted on. And so one of our participants kind of gave one of our favorite quotes, that we often share when talking about the project. She asked after we described it to her at a Juneteenth event, she looked at us and said, “Is this reparations for Henrietta Lacks?” And while I don't think that Brett and I were always thinking about this being necessarily a reparations project, we did for sure want it to be a project that was repairing relationships. And so in that way, we were really thoughtful about our incentive structure.
It’s common in large public health and basic science studies to incentivize people With $10 Amazon cards or $15 grocery store cards for providing their biometric data or for being a part of a study for a very long time. And we instead said, “Hey, actually, what if we paid people like a job and treated them as experts of their own knowledge and provided $100, $125 for interviews and focus groups?” So that people really felt valued, not only economically, but also that they were being paid as experts. And I think that that approach was not only about humanizing people, but really I think also about making sure that people understood that we viewed them and valued them as experts, not only of just like their own bodies and experiences, but also as experts as Black people who have lived a particular experience in the United States and us saying, “Hey, as researchers that we don't know everything. We really want to hear from you. We want to learn from you. And we want this to be a co-created process.”
And so I think in a lot of this work and even in the survey as well, like I think about some of the times even with the survey when we're out in the community. While a lot of our surveys did get shared digitally, a lot of our surveys also got completed in-person with people because we were at these events and we weren't just kind of saying, “Hey, here's a card, consider doing our survey.” But because of different education levels and class levels and locations, like sometimes we had to sit with people and actually work through the survey and help them answer the questions or read it to them because of reading levels. We wanted to engage with people where they are because we wanted people to have a different relationship and a different experience with science that was an antithesis to how communities of color, and again, particularly Black communities in St. Louis, have been treated with their, either. expertise about who they are or literally their bodies and what science can do with either of those pieces of information.
Susanna Smith
I love that. I love the listening piece. I love the comment about reparations for Henrietta Lacks and that you're creating a project perhaps not specifically in response but that is offering a new approach.
So I want to ask you with all the listening you're doing and collecting the stories, what has been the most powerful part of that and what have you heard from the Black community in St. Louis?
Chelsey Carter
Oh, what a good question. One of the most powerful findings that I've personally found in collecting these stories is Black communities in St. Louis really speaking against this trope of mistrust and distrust and unwillingness to participate in science. When you read a lot of the academic literature, they make it seem like Black communities, especially I would say Black communities that are experiencing any intersecting forms of oppression and thinking about economic status, thinking about gendered inequality just don't want to participate in science, right? It's like, you know, science did these bad things, so they don't trust science.
I think that our data set really, really speaks against that trope. And it says if you think about your research methodologies differently and show up in communities differently Black communities are actually very interested in science and are actually very interested in participating and have a lot to say and have really unique perspectives. And so I think for me that has been like very validating, and I think a powerful reflection of all of the brilliant minds that have been in the project. This is a rich space that isn't solely fraught with histories of racism and oppression, but actually this is a group of people that are particularly resilient, particularly excited about science but want to figure out ways to approach science in ways that feel ethical, that feel safe, in that, I think echoing back to you, Susanna, spaces where people feel like they're really listened to.
What about for you, Brett? What have been one or two of your powerful moments since we started data collection?
Brett Maricque
Yeah, I'd like to share, I think, two things. One addresses a phrase that Susanna, that you used in your introduction, which is the phrase “white supremacist thinking.” And I want to highlight the co-creation of a new culture around science that I think we are just like at the very beginning of with our project and are just beginning to connect with other scholars and other people who are trying to push for the creation of a new culture of scientific inquiry that values the people who are participating and supports them as co-investigators, co-creators of that culture. And I think this is pushing up against a scientific culture that is because of history and because of legacy and because of our scientific pedigrees and our training environments is driven by white supremacist thinking, patriarchy, sexism, racism. So that's the culture in which we operate and do science. And so the things that come out of that, they do harm. They cause harm to people who haven't been part of that process.
And I've just been so privileged, grateful, thrilled to be part of this group of people, scholars, and community members together trying to create a new culture around how we approach science. So that's one.
I think number two is just the way in which the relationship that we have created with our research participants has become a two-way street. Our research participants have extended invites to us to enter spaces that they have ownership over. And I think to be able to cultivate a relationship like that through a research project to where a research participant feels comfortable inviting us to a food share that occurs weekly and serves
a community that is underserved, under-resourced, experiencing extreme material deprivation and inviting us as scholars from an elite institution in town to come into that space and be part of that, I think is really important. That's such a privilege to be able to do that with people who are participants in our project.
Yeah, I think those would be the two that I would highlight.
Susanna Smith
Yeah, and I love that. And I think it speaks to how you guys are creating meaningful collaborations with participants and like true respect that they feel seen in the project and they feel like equals in participating in the research.
And I'm a person with a very specific genetic risk, who at times has approached researchers and I've seen research that isn't driven by the people they're studying. And then they have trouble getting traction within the community. So I do think this is a new way of doing science.bAnd also I think it's a new approach to healthcare and medicine.
So I want to ask you to talk a little bit about how you approach people as an expert in their own lived experience within healthcare and genetics?
Brett Maricque
I've had the good fortune of working with a number of people who are unbelievably humble, have great levels of humility, empathy, and care for human beings both in research settings and outside research settings. And for me, it ends up being quite simple. It's really about valuing the contributions of every person who the research touches equally. And that doesn't mean that everybody is clocking the same number of hours or doing the same type of work or is always around the table when meetings are held. But what it does mean is that the contributions that people can make and do make and must make in order for this work to have the impact we want it to, that those contributions are held in high regard and are valued and are compensated in ways that don't traditionally happen.
There's a degree of humility that allows an expert, you know, a trained expert in a field to say, you know what, maybe I'm thinking about this in a way that doesn't quite reflect the reality that people face. Or maybe this point that someone's making that seems like it's not a big deal or that seems like it doesn't really matter or that I could list a set of research or a set of logical steps to refute that point you're making. Maybe we don't actually need to do that. So maybe we need to have a conversation. And see each other as making different but equally important contributions to this sort of path that we're blazing. It only makes sense to me to have everyone at the table and to value those contributions.
Susanna Smith
Yeah, when you have people participate in and lead research, you usually get better research because you're actually answering questions that could make a meaningful change in the lives of the people you're interested in helping.
Chelsea, I want to back up to something you said earlier when you were commenting about some of the things you've seen in the surveys and the focus groups: that Black communities are very interested in participating in science and they are very interested in participating in research.
And I wanted to ask, how do you think the Black community and I think really other communities as well can exercise agency over their genetic information?
Chelsey Carter
I think the first step is the awareness, like the knowledge piece. I think it's first knowing that you have agency and power over your genetic information, which I think to some people and some listeners of your podcast might kind of feel like a duh. But I think my training in anthropology has really kind of shown me and taught me that a lot of people, all of us, are typically really afraid of the medical system. We don't know how it works. We don't know where our blood goes after we draw blood. We don't know what really is going on with our electronic record at the doctor. And so there's just a lot of unknowns. And so I think that once we honor that there are a lot of unknowns in the medical system, I think it makes us a lot more sympathetic to the fact that people just simply don't know that they have agency over the decisions that happen at the doctor and that they're not simply just objects of the medical system to do what they do what it may with their bodies and with any of their biometric information. So I think first starting there.
I think the second piece is then education. One of the pieces that I've observed and really learned with Brett and I think the rest of our team is that this isn't just basic biology, right? So genetics is a little bit more complicated. And then if you add the genomics aspect to it, it gets even more complicated. And so I think it's really important for people to understand what it is they're trying to understand how genetics relates to their health, how genomic research relates to their health and how that can impact their own individual health, but also maybe their familial health or Black communal health broadly.
And then I think the other thing I would say is that responsibility isn't solely up to or the responsibility of Black communities, right? Like it's also the responsibility of those that want to do research and want to provide care. So I'm talking about these academic institutions, hospitals, federally-qualified health centers. If we are going to be on this kind of dawn of precision medicine as a part of our healthcare, then it's really important in the same ways that we saw chronic disease education and STI education occur in communities as we had more access to testing and more interventions, we've got to see that same work happen for people around these topics. And so I think once we have the awareness piece and I think the kind of co-created education piece of people learning on their own but also these institutions doing more to actually provide education. We now have created more of a safe space for people to start asking the question. So now they know that when they're in a research study and they're filling out the IRB form and it says that they're going to keep any of their genetic data in perpetuity and stored with a unique identifier that now an individual knows, actually, I don't want it stored forever under a unique identifier. Actually, after you use my data for this specific study, that is it. That's all that I wanted to, want to be a part of. And so now people can make better decisions. If people now are interested in getting their genome sequencing, specifically with their doctor they know, okay, I only want that to be shared with my doctor in that doctor's office for the use of this, not for research, but only for my healthcare use for preventing disease, diagnosing disease, whatever it is that I need. And I think as we have this kind of co-creation of more knowledge and more education people will be able to make more of these empowered choices about their genetic information.
Susanna Smith
Yeah, I love that. I mean, I think what you're really talking about is helping all of us get to the place where we can be aware and informed consumers in healthcare about choices we're making around genetic testing or genomic sequencing.
I just want to mention here, too, that I personally think we have a long way to go as a society in creating appropriate privacy protections and non-discrimination protections for everyone around how their genetic data is used. And I've talked about this in earlier episodes around the limitations of GINA, the federal Genetic Information Non-discrimination Act and how your genetic information can be used against you in applying for life insurance and long-term care insurance, disability insurance.
So part of the answer is we don't have all the protections in place for everyone yet. And so you really do have to be a savvy consumer when you're in those settings.
Brett Maricque
Could I add one other point to the conversation here, which is I think it's a slightly different point, but it's something interesting that has emerged in our focus groups and even interviews, which is really the conversation about nature versus nurture.
And I think the agency and the knowledge base and the ability to engage in conversation about genetics concepts is so important for disease risk and those who may be at risk for genetic disease. And I think it's equally important for people to be able to put this into context and to think through the extent to which genetics are deterministic in sort of your health outcomes and then the extent to which the environment actually shapes a large portion of health outcomes and then, of course, the degree of structural inequality and disparities in the social determinants of health that people are subject to. So the conversation around nature versus nurture has been extremely rich in our focus groups and in one-on-one conversations with people.
One thing I've realized is that folks just don't really have a good handle on what information is in their genomes and to what extent this information controls their fate. I think having like nuanced and sort of exploratory conversations around things like genetic determinism and genes versus environment are super important for people to kind of understand what power their genetic information actually has and sort of what expectations to maybe bring to moments when genetic information is being discussed in a healthcare environment.
Susanna Smith
Correct me if I'm wrong because you're a geneticist, but there's a two-part thing there, right, which is lay people don't necessarily understand some of the aspects of genetics and genomics. The other piece is researchers and we, humanity broadly, don't really understand what aspects of our genetics are deterministic and what parts of it are the environment like the science of epigenetics is changing every day. .
Brett Maricque
You're exactly right. And we as a country and as a scientific community have invested significant resources in genomics. And so we have great ways of measuring genomic sequences. We have great ways of measuring variation in genome sequences. We have much more limited ways of monitoring, measuring, and understanding the environments that people live in and the impacts that those environments have on people's health. It's easy for us as geneticists or even as biomedical researchers more broadly to turn health problems into genome sequencing problems.
There's a lot to learn there, but it's also short-sighted. The reason why genome-wide association studies aren't explaining significant portions of variation in human traits or human diseases is that it may actually be due to the environment. It's not just a matter of sequencing more deeply or enrolling 100,000 participants instead of 10,000. It may be that we have to shift our focus from the genome and onto other things that are impacting people's health and well-being. And I think community-led research and helping people understand this is still hugely valuable, even as the science changes and we uncover more.
Susanna Smith
So let's talk a little bit about the importance of rejecting race as biology and understanding race as a social construct. So how do you talk about those ideas and also discuss how racism underlines health disparities or the need to diversify genomic data sets, which you talked about earlier, Brett.
Brett Maricque
This is probably the biggest challenge in terms of communication that we have. Eight-five to ninety percent of genomes that have been collected and studied in genomics are from people of European ancestry, white people. Race is a social construct. There's no biological basis for race. Yet, we say that we need more diversity in the genomics databases.
Why? The fundamental question is why? And I think the answer to that is that there's nuance that we have to be able to communicate. When we're talking about this, yes, race is correlated with health outcomes. Yes, racism is likely the root cause of most of that. And also there is a correlation between race and genetic ancestry. It's not that they're completely unrelated things but that if you use one to stand in for the other, you're not on solid ground anymore.
I think it's being able to hold all these sort of things that are true but yet in tension with one another and then come out of it at the other end, being able to acknowledge there are things in our genomes that can tell us important information about our health. But we don't have to invoke race in order to do that. We can decouple race from biology and still make the progress we need to make from a precision medicine perspective. And I think that's our mission.
One of our primary missions, right, is to learn about what people know and think and then figure out how to attack this in a way that allows everyday people and people who are well versed in genetics and genomics to have discourse about this.
Chelsea, would you like to add to that?
Chelsey Carter
I guess I'll just say that I think part of the reason that it's not easy to hold all of the complexity that I think that Brett just explained is partly because the concept of race was created by science. And I think that a lot of times we don't sit with that as a reality.
A lot of our enlightenment thinkers were trying to put people in a box and create kind of these static, fixed, unchanging ideas about race so that they could not only be able to defend some of the social and economic choices they were making around colonialism, around imperialism, and ultimately a justification for slavery but also because these early scientists were doing what a lot of scientists still do today: looking at people and trying to ascribe differences and group them and put people into certain boxes, which when we're thinking about things that are actually objectively true, that can tell us really meaningful things. And so I think that going back to this history of scientific racism and racial science, I think is really important for understanding, I think, why it is so difficult to disentangle what genetic ancestry is saying and what social constructed race is actually saying and because we're not teaching in the ways in which our disciplines are often siloed both here in the US and globally, we're not teaching these histories.
It becomes even more difficult to kind of parse between an understanding of these really nuanced concepts in ways that it arguably is easier to just try to say something about ancestry and correlate that onto social constructions of race, not because I think people are always trying to, by intent, do harm, but because of structurally how these systems have began and have over histories begun to think about human difference. So I think that as we continue to acknowledge that human variation is continuous and as we continue to acknowledge that there is no way to consistently classify by race, particularly when we start thinking about larger kind of questions about genetic ancestry over global populations it's just not going to work. And I think that we have to be really mindful, particularly about as American-based researchers, to not then promulgate our own ideas around ancestry and race onto other populations in ways that are not only just like simply unhelpful, but are actually a function of bad science.
Susanna Smith
Yeah, to say race is created by science is such a powerful point. I think the other piece is it actually speaks to what we were talking about earlier, the limitations of our current knowledge of epigenetics. And to the extent in which we, if we say even racism is also a social construct, and so we don't have the current capacity to measure things like stress plus air pollution plus living in a particular area and your particular biology, what are your risks for developing, let's say, lung cancer? But we don't have the ability to use all those variables to create this individualized way of approaching people. But that's coming. So I think it's important to both look backwards and look at where we are right now and what we don't yet know to be able to untangle these things in new ways.
So where is your work at the Black Genome Project headed in the future?
Chelsey Carter
I think that we are naturally, after explaining what we've been doing over the last two years, we're in a data analysis kind of fury right now, both analyzing all of our interviews and focus groups, but also starting to really get into our survey analysis as well. And so we're really excited about working not only with our research team of student researchers at Wash U and Yale, but we've also started developing a community data analysis team. So I think a part of this project kind of bringing in the community-based participatory research model is acknowledging also that we can't then extract this data from Black communities and then just analyze it without community participation and really creating some thoughtful working sessions, both in giving some of our community data analysis members some actual skill sets on how to use our software system, how to use NVivo qualitative coding software system to actually do some of the data analysis, but also just getting their expertise on how do we interpret this? How do we visualize this? We've taken a lot of cues from some of the brilliant work that we've seen from other researchers in this space about thinking about how to visualize data, how to communicate that in a way that supports the values of our project, but also is a way of not just speaking to, again, these elite institutions in the ivory tower and the academic paywalls that tend to hide a lot of our research, but also think about how do we get this information out into the community. And so we're, of course, going to go the academic journal route, but we're also thinking about ways to create what we've been calling for a while like a coffee table book that we put together that shows these stories, reflects some of the data visualizations, but also provides some of this kind of educational information for people who are interested in possibly getting genome sequence one day or participating in genetic testing. Creating spaces for them to explore and learn more from a book of people that look like them.
We're also really excited. We just got a little bit of funding to support us not only working with these community data analysis teams, but also doing some education sessions in the St. Louis area that really kind of mirrors a lot of the themes we've been talking about in today's conversation. But how do we disrupt this kind of model of thinking that education can only happen in a classroom, but how do we share about what the future looks like in this space with community members? Is it at a cookout? Is it at your mom's kitchen table where we're sharing information? Or is it a more social event where maybe we're watching a Netflix documentary like, you know, They cloned Tyrone? with Jamie Foxx and then working through some of the questions that arise from that movie or some of the inaccuracies of that movie.
And so I think we're really looking forward to really kind of continuing to be in the community, but also thinking about how we can take all of this data that we've now learned and not only disseminate it to people but also how can we use it to then co-construct with our community members what the next steps of the Black Genome Project look like even beyond getting research out into the community. But does that look like creating a project around rare disease one day or does that look like creating a safe space for people to participate in genomic sequencing if that's something that they would like to do.
Susanna Smith
Thanks, Chelsea and Brett for joining me today on Genetic Frontiers.For anyone listening who would like to learn more about the Black Genome Project, please go to blackgenomeproject.org, which is linked to in our show notes.
Genetic Frontiers is co-produced by Brandy Mello and by me: Susanna Smith. Music is by Edward Giordano and design by Abhinav Chauhan and Julie Weinstein. Thank you for listening to this episode of Genetic Frontiers connect with us at geneticfrontiers.org or on Instagram and Linkedin at Genetic Frontiers, to continue the conversation. If you enjoyed this episode and would like to support our independent production. Please make a donation to Genetic Frontiers through our Patreon account.