Genomics, NFL Players, and Public Health with Chelsey Carter

1 hour ago

25 min read

In this episode, Eleanor Drage speaks with Chelsey R. Carter, a Yale public health scholar and medical anthropologist, about public health, disability, race, technology, and health equity.

The conversation explores how technologies such as eye-gaze communication devices can support people living with amyotrophic lateral sclerosis (ALS), and why even promising innovations can fail when access, training, and ongoing support are lacking. Carter examines how racial bias shapes neurological diagnoses and care, including the use of race-based cognitive assessments for Black NFL players, and discusses how the Black Genome Project centers lived experience and community engagement in genomic research. From the COVID-19 pandemic and the politics of public health to precision medicine and the concept of neuroracism, the episode asks who benefits from medical innovation, whose experiences are overlooked, and what it takes to make healthcare more equitable.

Chelsey R. Carter is an assistant professor of public health in the Department of Social and Behavioral Sciences at the Yale School of Public Health, with a secondary appointment in anthropology. She is the founder and director of LEITH (Lived Experiences Igniting Transformations in Health), a research lab focused on the social and structural determinants of health in rare neurodegenerative and genetic diseases. Her work examines ALS, anti-Blackness, medical technologies, and the role of lived experience in shaping more equitable approaches to healthcare.

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Transcript:

Eleanor Drage (00:53):

I'm thrilled to be here today with Chelsey R. Carter, who is an assistant professor of public health in the Department of Social and Behavioral Sciences at Yale School of Public Health, with a secondary appointment in the Department of Anthropology. She's also the founder and director of LEITH, the Lived Experiences Igniting Transformations in Health Lab, a hub that addresses the social and structural determinants of health in rare neurodegenerative and genetic diseases. Her first book project, Witnessing ALS: Anti-Blackness, Race and Care in the World of Rare Disease, is out next year, and we've just been discussing the possibility of having you back to talk about it when it comes out. So welcome, Chelsey.

Chelsey R. Carter (01:40):

Thank you so much, Eleanor. I appreciate that very warm introduction.

Eleanor Drage (01:43):

Can you help us kick off this episode by just telling us what you do and what brings you to the topic of feminism, race, and technology?

Chelsey R. Carter (01:53):

Absolutely. Well, I am just honored to be on your podcast. I think that the work that you do is really cool. And I think even when I first got your email, I thought, “The Good Robot? I don’t do technology. I don’t think about my work in that way.” But the more I’ve worked on my book project and other work around genomics, the more I’ve thought, “Yeah, I guess I am talking about technology.”

I think the primary thing that brings me to this work is my background. I often joke that I’m a Black girl from St. Louis, Missouri. And so that is a place in the United States that is, you know, rich with a cultural history, but also a history of cultural divisions and tensions. I think that when I think about the work that I do, I'm always thinking about my local community and the ways in which questions of gender, race, and equity show up in people's everyday lives.

Much of my work has focused on the neurodegenerative disease ALS and on understanding how people from different backgrounds, cultures, and identities have certain lived experiences, and then learning how the medical system, particularly the biomedical system, shapes those experiences. And so during my ethnographic fieldwork when I was in graduate school in St. Louis, Missouri, as well, I started realizing that, sure, people are absolutely having these unique experiences of living with a disease at their home, with their families, with their people. But things get especially interesting when they start thinking about clinical trials and going to talk to the doctor, and different durable medical equipment that they might use, including technologies that can bank their voices for future use.

And I really got interested in questions about who has access to these technologies. You know, in the ALS space specifically, one of the progressive symptoms is that a lot of people lose their voice. And so there are technologies that allow people to then be able to, while they still have their voice, record themselves so that if they ever have to use an eye-gaze device, the voice they use to communicate isn’t just an automated voice, but their own voice reproduced for the people that will eventually listen to them. And I think that is such a beautiful and accessible technology.

But it's only accessible and beautiful if everyone has access to it. In my work, I think a lot about how many Black people in the United States who are diagnosed with ALS are diagnosed very late, if they get a diagnosis at all. And so do they have access to some of these technologies? And then I think, for me, when I think about feminist aspects of this, I think being a Black feminist and always thinking about how Black people, and especially Black women, move through the world is really important because of the ways that oppression has impacted our lives.

I think that focusing my work as a Black feminist inherently supports other marginalized or underrepresented communities because we're starting with a group of people that have not always had their lived experiences validated. And yet, we still have to interact with these biomedical systems, interact with these technologies, and resist in whatever ways that we can. And so all of that to say that even though I don't really see myself as a technologist, my work clearly intersects with so many questions about how do we use good technology? And is there a good technology? I think for that, I really appreciate being able to even think with you on these intersecting ideas.

Eleanor Drage (05:56):

The podcast understands technology quite generously. I also tend to invite people to think of their work as feminist when they may have never considered their work in that kind of way, which, you know, it's a mixed bag.

Chelsey R. Carter (06:12):

I love that. I love that though.

Eleanor Drage (06:14):

Yeah, well, I think it's a nice way to get people thinking about their work in a different way. And feminism is very complex, but it can really enhance a lot of the great pro-justice work that's out there. So, you know, whether it's some 3D-printed microscope that's open-licensed and redistributes economic value, that I'm like, “This is feminist,” and the guy who made it was like, “Okay, sure. Why not?”

Can you tell us then, our second Good Robot question is: What is good technology, and how do we work towards it? You mentioned some of these technologies used by people living with ALS, like eye-gaze. What is eye-gaze, for a start? And is it a good technology? And if not, can you think of something else that explores what might be useful to lots of people, and when it's not useful, because of course nothing is good all the time? What is good technology to you?

Chelsey R. Carter (07:21):

Absolutely. I love that question. And I love the challenge of explaining, as someone who isn’t a technology expert, to now explain to your audience, Eleanor, what an eye-gaze is. So bear with me, audience.

How I understand an eye-gaze device is that it is a little computer that people often attach to their motorized wheelchair. To use this technology, a person works with a specialist and a speech-language pathologist. A small sensor on the computer tracks the person’s eye movements. So, as ALS progresses, they might not be able to use their hands, or they might not be able to, of course, use their voice. What this technology does is it quite literally allows them to look at letters and select them to form a sentence or response to someone that they're communicating with– a caregiver, a provider– and allows them to continue to have that autonomous voice while living with this devastating illness.

Is it a good technology? Based on that definition, absolutely. I think that there are a lot of really positive benefits, not even just for people in the ALS space. I think people across the disability spectrum could use it for a variety of illnesses and conditions. But I think, as I said in my earlier response, the question of whether it is good becomes more complicated if it's not accessible to everyone.

I think about someone who is in my book project, and I don't talk about this particular scene in the book, but I have a vivid memory of going to visit him at the assisted-living facility that he was in towards the end of his ALS. He was so excited to share with me because he was now on a ventilator, and the ALS Association of the Greater St. Louis area had brought him an eye-gaze. And I was like, “My gosh, this is great! Where's it at?” And he's like, “In the closet over there.”

I walked over, and there was a device costing thousands of dollars just collecting dust. And why? Because nobody had been by to set it up and train him to use it. And it came from, in this really positive way, the ALS Association's loaner closet. The intent is that someone who was able to afford it, after they’ve transitioned or passed away, passes the device down to the association and says, “Hey, share it with someone who could use it.” But after you share it with someone who can use it, you also have to make sure the necessary support is provided so that that person can have all the benefits of the good technology.

And so, unfortunately, this individual lived in that nursing home for about a year before he transitioned, and that eye-gaze device never got up and running. Because of how late he was diagnosed, and also because he was not offered the option to bank his voice, he didn't have some of the preparatory things necessary to be able to use the eye-gaze at its best potential.

And so when I think about your question of, like, “Is it good?”, sure, that technology itself is great. And I think that the people, the engineers and brilliant humans that created it, I hope had very good intentions. But what we see in society, which I think is oftentimes the intersection or the complication of whether or not something is good, is: Is it accessible to everyone equitably? Is everyone able to use it the same? Can everyone actually get the full benefits of something? And I think about this wonderful individual, and he wasn't able to use the full benefits. And so if I were to categorize it for him, then no, the eye-gaze was not a good technology. I think it's really complicated.

And there are many other examples, including in my work on precision medicine. Precision medicine could be transformative, particularly when we consider future gene therapies, including the new gene therapy for sickle cell disease. That is a revolutionary technology that is going to give people not only a different quality of life, but also change the trajectory of their illness and lived experience with sickle cell. However, will it be good for everyone? Does everyone want that technology? Will it be affordable to everyone so people can access it? And I think those are some of the questions that we have to keep asking and thinking about constantly if we really want technology to be ethical, just, and good.

Eleanor Drage (12:30):

Absolutely. And I might just add that I think some variation of an eye-gaze technology is used to track and monitor workers and truckers, as Karen Levy, I think, documented in her book, Data Driven, so that they know where someone is looking, if the trucker is looking at the road or elsewhere. So, of course, you know, variations of these technologies are used with very different ends, and technology is only as good as its implementation and deployment.

Chelsey R. Carter (13:05):

Thank you so much for sharing that with me. I didn’t know that, so I'm learning something new. That also gives me a different perspective on the eye-gaze technology, and what I also wasn't gonna share, but now you’ve opened the floodgates, Eleanor.

I think that there's now like a new step of the eye-gaze technology, and so now it's kind of using these neural pathways to almost predict what you're gonna say. Because one of the things that is happening in the ALS space, and in a lot of diseases where there is a speech delay, people assume that people who live with motor neuron disease slash ALS, their brains are not still fully working. And for most people, if they don't have frontotemporal dementia, they're still fully active in their brain and can communicate and have cognition. And so what does it look like when, instead of using eye-gaze, we're now using something that requires very intensive surgery, but also now is a device planted in your head, and now it's also using a technology that is not only speaking for you, but also predicting what you were going to say through your neural pathways?

And so your example thinking about Karen Levy's work made me think of this example too, of like, well, it started as maybe having really good intentions, but how do those intentions then continue to bubble as more people remix them, if you will?

Eleanor Drage (14:38):

Exactly. My mum and I talk about this all the time because she has Parkinson's. And you know, if there was something on offer that was a little chip in the brain that would prevent the shaking and the speech impediments, we'd take it, but we know the cost, you know? We know that someone will try and fiddle around with it and make money from predicting your speech patterns or prompting you to say stuff. This is the world.

So the next thing I want to ask you is about the pandemic, because you looked at COVID-19 and you've written about how historian Alison Bashford called the pandemic a public health crisis and a technology of power. Public health was a technology of power during the pandemic. Whether we bought into it or not, how we moved, where we moved, varied in the US from state to state, and certainly in Europe from nation to nation. We've also seen this play out recently in funding regimes following not just the pandemic, but the murder of George Floyd and Breonna Taylor, and the widespread rise of fascism. So tell us, how has public health been a technology of power in these events?

Chelsey R. Carter (15:55):

That’s such a thoughtful question. I love how you connected some of these very US-centric things to these global rises of fascism, and even how public health globally operates as a technology of power. I just think that this is a really thoughtful question.

I think we have to start kind of, and you intimated in your question around this quite a bit, that you know, we witnessed around the world from the beginning– what was it, February, March of 2020-- through, I would say, the rise of the pandemic continued until at least the end of 2022. We watched different groups gain access to masks, vaccinations, and other protective measures. And I think that what that quickly did was galvanize public health to say, “Hey, how do we use our systems for good? This is now not just a, hey, we need to monitor something that's happening. This is a thing that's happening now, and it's impacting people worldwide.” And so we saw public health do a lot of good.

But I think in the United States, one of the things that was also happening at the same time was these murders of Black people. One of the things I was quite heartened by, and writers have talked about it as kind of these dual pandemics of the rise of state-sanctioned police violence and also the rise of this awful COVID-19 pandemic, was that people were attuned to the fact that this was so serious and this was so bad that we need to go put our bodies out on the streets globally and protest this as an issue. Which also means that despite public health suggestions saying, actually, you should stay inside and stay six feet away from people, people were saying, “We're gonna have a mask on, and we're gonna have our protective equipment on, but we're still gonna be within six feet of each other so that we can protest this really big issue.”

What I then saw as a medical anthropologist and a public health scientist is not only a kind of public health take on this power of trying to mitigate and understand the disease, I also saw it as a real reckoning for the first time that everything that is a health issue is not just physiological and it's not just biological. It has so much to do with where we are and structures of oppression.

Here in the United States, we saw our largest government organization that runs public health, the National Institutes of Health, or the NIH, decide and galvanize around the idea of, “You're right. Everything that's public health-related is not just about a biological causal pathway. It also has all of these social and structural issues.” And so what you then saw was this wave of grants by the NIH—and not just small grants of here's $10,000, here's $50,000, here are millions of dollars to start centers around racism, to do R01 research studies about what are the causal factors for different diseases because of structural racism. And the National Institutes of Health was naming that in their calls for applications. They were saying, “We know that structural racism impacts health. So if we know that that is a fact and that's our beginning hypothesis, we now need to test it.”

And so we then watched from 2020 till 2024, millions of dollars began to support these initiatives. And then 2024 came. And 2024 shifted everything in a significant way, where you were seeing this buildup of, “Okay, structural racism is an actual determinant of health. We're studying it, we now have the data behind it, we now have measures, we now have theory, we now have the things to start being able to possibly intervene. How can we actually make this better?”

In 2024, right as we're on that eclipse of trying to make things better, we're talking about it, we're being honest, it's in these government documents, we're starting to get closer to what we would imagine could be a reparative relationship with public health and the people, we watched public health lose a lot of its power because of the change in politics in the United States, the change in politics globally, and an acceptance of fascist beliefs and the idea that genocide isn’t real: “If I don't see it, then it's not real.”

And those have huge ramifications for people’s health. And they also have huge ramifications for our funding mechanisms to get the data to do the interventions to help people thrive. So what has been extremely disappointing in thinking about and understanding that we had this huge wave of understanding that public health can be a technology of power for good and it can name things, is now being on the other swing of that wave and realizing that actually the government can say, “You now can't”—not only can you not study structural racism, you can't even touch any of the words adjacent to it. You can't say woman, you can't say Black, you can't say Indigenous, you can't say equity, you can't say transgender. And I could go on and on… the list is insane.

But you know what you can say, Eleanor? White and man are still words that are fully acceptable according to the NIH. So, like, what does it mean when these large governments then say what we used to validate as valid science is now not valid science? And that has not only a blow, like I said, on the funding structures, but it also has a huge blow on the work that we can do as scientists to improve the health of people. Because if there was anything that the COVID-19 pandemic showed us, it is that this is not just about a virus that is biological. It has everything to do with the environment, with culture, with our society, with where people live, with how much money people make. And it's very disheartening and simply sad to now be on the other side of that wave and be trying to still do good work and say these same really important concepts, but feeling like you're on a hamster wheel working ten times harder now because the public health landscape says, “Hey, actually what you study isn't even, not only is it not even science, in certain spaces we're actually deeming it illegal.”

Eleanor Drage (23:21):

Exactly. And it makes it really hard to debunk these claims of universality, such as the idea that COVID was equally bad for everyone, or like Madonna’s claim that COVID was “an equalizer” and I rolled my eyes and thought, “God, come on, Madonna. You don't need to do that. What are you doing?” It's absolutely not.

Tell us about genomics, because you wrote a piece called “Our Data Are Diverse: Are Databases Actually Creating Equity in Genomics?” So this is one thing that's being done, despite all the crap going on and the inability to speak words that aren't white or man. There are attempts to create equity in genomics. And now I've got lots of friends who work actually for different genomics centers around the UK, and they are exploring the really tricky, complex, difficult work of understanding what equity even means in genomics. So we could say it's an ambiguous technology. Genomics is both helpful and harmful. What is the Black Genome Project, which is in pursuit of helpful genomics, and how does it grapple with the complete headache of genomics' risks and benefits, specifically to people of colour?

Chelsey R. Carter (24:45):

Yeah, thank you for the question. So the Black Genome Project is something my research partner, Dr. Brett Merrick, who's a geneticist at Washington University School of Medicine, and I came up with back in 2020, during the same period as the COVID-19 pandemic. We met because I was a phlebotomist on a seroprevalence COVID-19 project in the St. Louis area, and I was still a grad student, and he was a brand-new PI who had been tasked with doing this community-engaged work around COVID-19.

We had never met each other because of COVID. I just kind of got hired to draw blood for $25 an hour from people. But as I was talking to him weekly as I was going to these sites, because we basically were managing it together, I was like, “What is this random geneticist guy doing running this project? And what does seroprevalence have to do with... blah, blah, blah, blah, blah?”

I say all that to say that in late 2020 or early 2021, he and I finally met up outside one day to actually meet each other in person. And he shared what he had been tasked to do as a geneticist, and I shared what I was interested in as a doctoral student finishing my dissertation. I was really intrigued by him because I was writing a paper that then ultimately became a dissertation chapter about how I was noticing that, in the ways in which clinicians were talking about ALS and motor neuron disease, they were acting like there wasn't a 10% genetic aspect of ALS. And when they were acting like there wasn't a 10% genetic aspect, it was only with Black patients. But when they were talking to white patients, they were like, “Yeah, you could have genetic ALS. We should test you for the genetics.” And I was seeing these weird differences. But also, I thought we all had the understanding that race is not biological, so why are you assuming, based on someone's race, where they're slotted?

And so I remember at this first meeting with him, I was just kind of sharing everything I’ve just told you. And he was like, “We should do a research study.” And I was like, “Okay, we should do a research study.” He was like, “But like, we're not gonna do a research study where we just go out and swab Black people's mouths in the St. Louis area to create our own database. But what if we take that same idea, but we do it around lived experience and how people are relating to and understanding genomics?”

So, let's still get a really big sample, and let's name our project in a fun, quirky way, like the Human Genome Project. Let's just give it back to people. Instead of being the Human Genome Project, let's allow it to be the Black Genome Project, so people see themselves as a part of this and not as this distant, distrustworthy entity.

And so what he and I did was we spent, we call it community-based participatory research, or CBPR, meeting ethnography. What was really important to us is that we wanted to be deeply engaged in the community, and we also wanted to do long-term engagement with people. We didn't want to just drop in and say, “Hey, do a survey. Here's a gift card.” So we spent a lot of time deeply engaged in the community, wanting to return to talking to people again and again. So we did multiple interviews; we did multiple focus groups.

And so after about 18 months of this process of CBPR meets ethnography, we got so much rich data. Because our thing was: Do people want to be a part of these databases? The way in which the literature reads right now, it suggests that if we want better representation of African ancestry or Asian ancestry, basically any non-European group that hasn't been represented in these large studies and databases, we need to just go sequence all of their genes. And we were like, that doesn't feel like the right thing to do, because not only is that also, even if it's not intentional, falling into this racist biological idea, it's also not honoring the legitimate reasons why people might not want to be a part of these databases. Because these databases are not just, “Hey, here's a sample of my blood that you'll use in perpetuity”; this is the literal genetic code that I'm giving you to do whatever you want with, AI-wise, storage-wise, etc.

And so we really wanted to ask people what they believed and what they wanted from these future technologies. Because what our fear, our hypothesis as a medical anthropologist and a geneticist, was was that if we keep zooming towards precision medicine as the answer, similar in a very Madonna way, precision medicine has been argued to be, “It's gonna be the great equalizer, it's gonna be the thing. Once we get precision medicine, it's gonna solve all diseases. We're gonna be able to make something personalized just for you”, and the question is: How? And also, how are we gonna do that if we're also using the same logic as we've unfortunately seen with some of the National Institutes of Health All of Us studies, where you're making these arguments about ancestry, but still slipping into assumptions about biological essentialism in race?

And so our project is really trying to intervene in that issue and say, “Hey, we believe precision medicine is actually really powerful. We also really know that we've done a lot of harm to communities that have been underrepresented, and if we want increased representation, the only solution can't just be swabbing people's cheeks and adding them to the databases.” There has to be a lot more thought and care and empowerment behind that if we're hoping for it to be the great equalizer that it could potentially be.

Eleanor Drage (30:59):

What is neuroracism? Does it relate to anything you've just been saying? And I know that you think that documentary film is a good technology that can bring the issue to wider attention. Can you tell us about that?

Chelsey R. Carter (31:14):

I do, I do. I have nerdily become a documentarian in my work in the last couple of years, because I think that we academics are trained in a way to just write and produce in these fancy journals and even in these niche books that everyone doesn't read. But the reality is that that's not the only way that we consume information. People consume on awesome podcasts like The Good Robot; people consume through listening to the radio; people consume by listening to and watching documentaries. And so I really wanted to enter into that space so that even if someone couldn't read from a literacy perspective, they could still engage with and watch a documentary.

I think that when I think about these questions about precision medicine and neuroracism, neuroracism is a concept that I really developed in my book project. And it came from an American science-activist group called Black in Neuro. They first used it as a hashtag to acknowledge and identify the ways that neuroscience as a field had a representation problem and was not adequately training or engaging with scientists who were not white men.

And so I remember seeing that hashtag also around this same 2020 period, and I was like, “Yes, neuroracism, that's what I feel like is also happening.” Yeah, it's happening in the ALS space with clinicians and clinician-scientists that are studying the disease, but neuroracism is also happening to the people living with these different diseases and their caregivers.

I think how I define it is as the racialized and differential diagnosis of lived experiences in any type of neurological and neurodegenerative disease. And I think that it's a vestige of structural racism in that it allows us to name more specifically what's happening in these unique technological and biomedical spaces that, for most people, are these kind of weird, opaque spaces. But these weird, opaque spaces are not just these objective vehicles that are looking under microscopes and creating new technologies like eye-gaze machines; they also have the ability to leave people out, to invisibilize people, to differentially offer care, offer diagnosis, offer clinical trials.

And so the concept of neuroracism that I hint at in the documentary Witnessing, that I developed with my co-producer and co-director, Mr. Michael Tyner, but also in my book project, where I talk a lot about how marginalization is created through exclusion, when that happens, it’s not just medical racism; it’s a specific phenomenon that's happening in the neurological space. So let's identify it there, because then someone else might be able to take up the term in a different space. Like anthropologist Dána-Ain Davis, who really studies obstetric racism and is like, “Hey, cool, we could call this medical racism, but when we're even more specific about the histories and cultures around what made obstetrics unique, that then helps us explain the different rates of infant mortality and maternal mortality in Black and brown communities.”

I see the term neuroracism doing something really, really unique, but also very similar to that, and really helping us see in these neurodegenerative diseases that we're hoping are gonna be cured through precision medicine, how neuroracism is operating in a way that occludes people from being not only identified, but also receiving the care and the technologies that they deserve.

Eleanor Drage (35:16):

How is the influence of neuroracism then playing out in American football, which is only newly coming to terms with the fact that neurological conditions are really undertreated amongst African American players? You wrote two amazing pieces with Tracy Canada on race norming in the NFL and brain trauma and neurodegeneration. Can you tell us more about this extremely important topic?

Chelsey R. Carter (35:48):

I have to start by giving Professor Tracy Canada her flowers, because this was absolutely her area of research. And I remember back in 2021, the news broke that the NFL had stopped using race norming in settlement evaluations with NFL players, and I got a text message from Tracy sending me this news article, and she's like, “What?” And I was also kind of responding, “What? Who knew that this was even happening?”

And so for Tracy, she has the expertise already of thinking about how anti-Blackness and structural racism in American football shape these different everyday experiences of young Black football players. But she also wasn't a medical anthropologist. She was like, “Can you help me understand this race norming thing? What does this mean?” Because I think the headline did a really good job, as most sensational journalistic practices do, of really just kind of getting you to bite in and really just think about the fact that people are losing out on money. But we really wanted to get to a deeper issue: It's not just that people are losing money; what are the logics that are then being deployed for people to lose money?

And what we then learned while we were researching and writing that first piece for Scientific American was that the underlying assumption in cognitive screening was that psychological tests include a statistical norming factor, basically statistically in the metric, that has a belief that if you have a white football player and a Black football player, the Black football player is inherently cognitively lower than the white football player. So when you put in all of their other data and through kind of this cognitive testing, the Black player might have had the same experiences, the same amount of tackles, the same amount of concussions; when you get to the end of that race norming test, it is going to say that the Black NFL player had not experienced cognitive trauma to the same degree, and so therefore they're not gonna get the financial payout.

And so when we started there, Eleanor, that's when we first realized, like, wow, this is not just a vestige of bad science. This is a vestige of slavery. This comes from Enlightenment-era craniometry, that Black individuals somehow have smaller brains, are not as intelligent, and cannot rise to the cognitive level of a white person. And that got baked into this cognitive testing.

And the NFL in 2021, not 1970, Eleanor, 2021, they just casually announced, like, “Yeah, we're not doing that anymore because we realized it was wrong.” You realized it was wrong because you got sued, because people were like, “Hey, where's my money?”

But I think that Tracy and I realized after writing that piece that we wanted to say so much more about this deterioration and neuroracism that's happening to these players, because it's not just the concussions and the race norming; it's also the concussions that lead to other neurodegenerative and brain trauma-related conditions like Parkinson's, like ALS, like frontotemporal dementia, like Alzheimer's, this weird, opaque neurological space. And unfortunately, the NFL has not done a good job of, to your point and your question, taking accountability for the ways that they've known for years, decades, that playing football can increase your risk of some sort of brain trauma just inherently because of the violence of the game.

And so then you also have an American sport that is disproportionately made up of Black players, but they are also the individuals that are having the highest rates of these neurological conditions, but then also not receiving the payouts that they're owed because of these logics of racism and neuroracism that are embedded into the system. And so in that second article that Tracy and I wrote about brain trauma and neurodegeneration, we really tried to set up the theoretical framing of this concept of weathering in sport. So thinking about Arline Geronimus's work on weathering, and then also bringing in Black Studies scholar Christina Sharpe's work on the weathering caused by anti-Blackness, we brought those two together to say, “This is what’s happening.”

The next step is starting to create a scale to think about how we test this, but we have enough ethnographic, journalistic, and lived experience data to support that there is a weathering that is happening to these players, not just inherently from the sport, but also a sport that is inherently imbued with these logics that Black people, and Black men specifically, are less than.

I'm really excited about the swell around this that is starting to grow in the United States. We just had, unfortunately, a very well-known NFL player whose last name is slipping me right now; I want to say Chris Stevenson, but I know it's Chris, who also just announced his ALS diagnosis. And he doesn't say it directly, but he does intimate that he believes that it came from his play in American football. And so we need to, and we have to, sit with all of these tensions.

And I think that naming weathering in sport, naming neuroracism in the ways that we can, to our earlier conversation about the ways that these fascist regimes are trying to get us to not use certain words, use certain languages. I think it is us as scholars finding inventive and creative ways to say these same things so that people understand that this is not all determined by our biology; this is also determined by these social and systemic structures like racism, like anti-Blackness, like gender, and hoping that we can create more equitable technologies and treatments that allow for people to all be treated and cared for equitably.

Eleanor Drage (42:31):

Which is why we absolutely need critical race studies and people who really understand the relationship between race and racism intervening in science. Absolutely, we have to have it. Thank you so much, Chelsey. I could talk to you for hours about this, but I've gotta stick to my 35 minutes, otherwise my editor will get upset.

Chelsey R. Carter (42:49):

I know, and I also want to hear more about what you and your mom talk about, because I feel like we could wax poetic about that for hours.

Eleanor Drage (42:58):

It was so lovely. Thank you so much for joining us on the show today.

Chelsey R. Carter (43:02):

Absolutely. Thank you so much for having me, Eleanor. Looking forward to our next chat.

Genomics, NFL Players, and Public Health with Chelsey Carter

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