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Who thinks that they can subdue Leviathan? Strength resides in its neck; dismay goes before it. It is without fear. It looks down on all who are haughty; it is king over all who are proud. These words inspired PJ Wehry to create Chasing Leviathan. Chasing Leviathan was born out of two ideals: that truth is worth pursuing but will never be subjugated, and the discipline of listening is one of the most important habits anyone can develop. Every episode is a dialogue, a journey into the depths of a meaningful question explored through the lens of personal experience or professional expertise.
PJ Wehry (00:02.132)
Hello and welcome to Chasing the Viathan. I'm your host, PJ Weary, and I'm here today with Dr. Shumita Dasgupta, president of the Association of Professors of Human and Medical Genetics and a professor of medicine at Boston University Medical Center. We're here to talk today about her book, Where Biology Ends and Bias Begins, Lessons on Belonging from Our DNA. Dr. Dasgupta, wonderful to have you on today.
Shoumita (00:27.502)
Thank you so much, PJ. It's pleasure to be here.
PJ Wehry (00:30.705)
So typical first question I ask just about every guest, why this book?
Shoumita (00:37.678)
I started this book as a sort of add-on to a conversation I was having with my students over time. I work at Boston University School of Medicine, and we're the safety net hospital of Boston and the greater New England area. So we treat a lot of patients who don't have access to health care except for through BU. Lots of different folks.
PJ Wehry (00:58.621)
Forgive me, when you say safety net, so I mean, you take all the cases that can't go anywhere else, that, am I understanding that correctly?
Shoumita (01:07.382)
It means we take all comers regardless of health insurance status. And even though we have government options with health insurance, there are still people who don't have access to health care, refugees, for example, undocumented folks. There's a lot of people who have difficulty accessing their health care. And so the folks at BU who are in the business of practicing medicine, you know, they provide care for everyone and are partly
practitioners of medicine, but partly advocates in social spaces as well. So that's kind of part of the ethos of how BU functions or motto is equitable care without exception. And in fact, you know, one of the things that really comes to the classroom conversations that we have really focuses on all the different social forces that get in the way of people accessing healthcare and
You know, I also work with students who are PhD students who are on the research side, and they also are thinking about things from a scientific point of view. How do we make sure that science is equitable for all people? And so these are conversations that we have in lots of different settings, whether we're talking about clinical applications or scientific studies. So I've been having these conversations with my students for over 20 years, and I started thinking I wanted to bring them into focus in a single course instead of in
snippets in different courses. So as I was thinking about bringing this into a single full semester course, at the same time, I was presented with the opportunity I couldn't turn down to also have a book on the same topics. So, you know, I knew that these were important conversations just because of the nature of the work I do. And also because of the way that I pass through the world and the different forms of inequities and bias that I see in my own lived experience. So
I knew these were important conversations. I definitely did not anticipate how siloed and how tense everything was going to be at the moment that my book actually got released. And so it feels even more essential to be doing this work right now.
PJ Wehry (03:15.996)
It is interesting that often when it's the hardest time to say something, that's when it's most needed.
Shoumita (03:21.336)
That's right.
PJ Wehry (03:23.828)
And just kind of at the outset, I think it was in the introduction, obviously, you're a woman of color in your field and that's an important thing for you. And you kind of say that in the introduction of the book that as we talk about, there's the biologic side and the bias side. If you don't mind sharing a little bit about your first encounter with and I should have written down the type of testing it is, but is it the implicit bias testing or what is the
That was astonishing to me. And I know you were talking about how it made you feel. I would love to hear more about that.
Shoumita (03:58.956)
Absolutely. So the implicit association test is a way that Harvard researchers came up with to measure somebody's reaction to different cues. And essentially the way it works is it's asking you to think about whether things are congruent or incongruent. So for instance, when I was taking the implicit association test about women in STEM, I had two collections of words. One collections were on the axes of good and bad.
And the other words were about women in STEM versus women not in STEM. And essentially what the sorting task is asking you to do in the test is to sort whether you think, you know, women in STEM belong in the same category as the words that are good, or if women in STEM belong in the same category as the words that are bad. And, you know, at that time I had already been a woman in STEM for multiple decades and
So when my test results came back and said that I had a bias against women in STEM, I was really pretty horrified because not only is that a big part of my identity, but I'm also in a mentoring role and I want to support young people who are women in STEM or up and coming women in STEM and non-binary folks in STEM. And so to see that result, it just really reflected to me not only that we're all products of our environment and we absorb all the things that
PJ Wehry (04:59.028)
You
Shoumita (05:19.586)
we see on TV and the movies and everything like that. But also it means that we all have work to do and that it's achievable to do that work. We just have to be aware of what our biases are so that we can work against them.
PJ Wehry (05:32.624)
And if I may say so, I you have succeeded in your field despite the implicit bias inside, right? Like it takes extra work, it is possible. So there is a certain sort of, and I know this is at a low level conversation, but there is a certain sort of fatalism that can sometimes be associated with implicit bias. Like, well, I don't know what to do about it. And it's like, you work on it.
Shoumita (05:59.244)
you work on it. And also there's the role of external implicit biases and how people may be creating barriers for your own advancement. part of that is being aware of ways to work around those.
PJ Wehry (06:13.182)
So with all that said, there's a biological and a cultural social side, and a lot of ink has been spilled about the way those two intertwine. What would you, just kind of at the outset, what would you say are the origins of bias? There's kind of an evolutionary kind of way that you talk about it. And then, of course, it eventually gets into kind of cultural, which is also kind of evolutionary, but.
Shoumita (06:40.534)
It's all related. There's no clear boundaries between the two, think. But in terms of how our brains developed, we need to have brains that can take shortcuts because if we're thinking through deliberately every single decision that our brains are making, everything will be incredibly slow. So our brains need to be able to see a lion running at us and know to get out of the way instead of stopping and calculating how quickly it's running and how many seconds we have to move out of the way. We just need to react.
So some of those instinctual reactions just need to be automated in a way. If we were just sitting and doing this deliberate practice, we could be much more careful about every single decision we make, but that might end up putting us in harm's way. So our brain does have that kind of capacity for this. It's called system one and system two thinking. And it's been coined as thinking fast and thinking slow by Daniel Kahneman.
And so when it comes to bias, a lot of times what's happening is that our brains are doing this thinking fast, taking these shortcuts, because our brain is trying to find patterns in the world. And sometimes the patterns are externally imposed or structural and not actually reflective of reality. So just taking that pause and deliberately forcing our brains to think slow instead of thinking in this automated and fast way can
go to great lengths to help mitigate biases.
PJ Wehry (08:13.524)
And maybe as an addition, and I would just love to hear your thoughts on this, there's also this kind of automated thinking that we need to do quickly. That's kind of like our perception of safety and danger. But there's also just the way that we navigate the world that we've been taught to. as much as we can talk about the dangers of bias, there's a necessary aspect to that too.
I just use this example a couple episodes ago, so maybe my audience will be annoyed. for instance, in some countries, it's red means stop, yellow means slow down, and blue means go. Right? But I love America, right? It's like, you're driving through Boston and you're waiting for the light to turn green, or you have to be like, OK, and when you're driving like now, when it turns green, not blue, like you're not going to be like that's.
This an example of just like automatic, we've been trained and there are certain, you know, I don't think about shaking someone's hand, right? That's built in. that's, you can, in some instances, think it has the same structure as some of the biases we're talking about. And what it is, it's a, I would say the socio-cultural structure of inequity. Am I saying that right? Anyways, yeah, so that kind of makes that happen.
Shoumita (09:37.475)
Yes.
PJ Wehry (09:40.978)
And so I just want to kind of broaden it a little bit. And so that people understand that there's a reason our brains are made this way even beyond just the obvious lion, right? There's also just like, we've met people who seem to, I mean, I can get a little awkward sometimes where it's like, are you thinking about a handshake? Cause it looks like this is an awkward thing for you for the first time, right?
Shoumita (10:05.848)
Yeah.
Yeah, I actually also think of it in terms of a driving analogy, which is if anybody has had the experience of driving on the other side of the road than the one in which you've trained to drive on, definitely my brain slows way down and thinking through, okay, which way do I go around the road or are here? You know, those kinds of things.
PJ Wehry (10:26.676)
That's a great example. Yes, also that one's consistent, right? And so and that will actually affect I mean that puts again that puts you in harm's way because that will affect That will affect how well you drive
Shoumita (10:36.142)
It does.
Shoumita (10:41.762)
Yep, absolutely.
PJ Wehry (10:45.796)
So what would you say that we've kind of established a little bit like there's these social structures that we need to navigate and then a lot of times for historical reasons, for cultural reasons, those have senses of an, not senses, these have unequal structures throughout. What are some of the common misconceptions about the role of genetics that have
historically been an issue and that you're kind of combating in this work that show up in kind of these unequal ways.
Shoumita (11:19.704)
I think a lot of times what ends up happening is that there's a built-in hierarchy for different identities and the social structures are created specifically to maintain those hierarchies, to maintain positions of power, particularly for cis, heteronormative white men. All the hierarchies tend to place them at the top. And if you have any other identities, then you are viewed as somehow less worthy, less able, or maybe
don't have a sense of belonging. A lot of times the science has been sort of twisted to help reinforce those rationales. And what I'm hoping to do with this book is to help us understand not only that the social hierarchy is not actually reflective of what science tells us, but also that there aren't actually discrete categories. There's a whole continuum of variation that we all
have identities that bleed into one another. So it's really pretty much impossible to draw lines that completely separate one identity from another.
PJ Wehry (12:26.792)
And for my own benefit, had to look, I ended up looking it up on my own, a guest mentioned in passing phenotypes and I'd never heard the word before. And so, but I would love to hear from you because I think that's relevant to this and it gives us that vocabulary to talk about genotypes and phenotypes and what are the differences and what are the uses and even how, you know, immediately for someone who isn't
to your field. Phenotypes is like, well isn't that just race? And it's like, no, it's quite different, right? But that's just, that's the history and the story that we've been told. Do you mind walking us through the difference between those three concepts?
Shoumita (13:13.344)
Yeah, of course. And it is true, as you point out, there's a lot of technical language in science and that makes it hard to have these conversations. you know, I think that's one of the reasons why people are less well versed in some of these topics because of this specialized terminology. I do my best to try to make the terms accessible to the readers and I provide a glossary in the back for folks who are not used to the terms as well. But for your listeners, I'm happy to share that.
Genotypes are the variants or the versions of genes that you have actually in your DNA, which is the molecule that contains the instructions for how we build our bodies. Phenotypes are how that appears in your body after your genes have been expressed. What does it actually look like? So if my genotype says, you know, I have a gene for curly hair and another copy that's a gene for straight hair, my phenotype might be wavy hair.
PJ Wehry (14:13.032)
And then that's separate from race because race is a certain collection of phenotypes that we've lumped together for social reasons.
Shoumita (14:23.212)
That's right. Yeah, race is a system of power that's created basically based on a couple of external traits, mostly skin color and hair texture. And as I alluded to earlier, it's really created to try to keep white folks in a position of power in this hierarchy.
PJ Wehry (14:39.668)
Yeah, and it even changes from culture to culture what those exact markers can be. Or, yes. Yeah.
Shoumita (14:47.488)
Absolutely, and even over time. If we were to look at the US census over many decades, we would see the categories changing over time. So how somebody may identify racially or ethnically on the US census can vary even within their own lifespan in the same place.
PJ Wehry (15:04.657)
Yeah, I remember there's a Trevor Noah did. I'm not sure if you've you've seen his he has a standup routine where he talks about coming to the US for the first time. Are you familiar with this? So he comes to the US for the first time and he's signing out an application at Bank of America and he says it says white or African American. He's like, I'm half white and I'm like black. You know, he's African.
Shoumita (15:16.192)
I haven't seen that particular one.
PJ Wehry (15:33.5)
you know, obviously South African. And the lady's like, you know, it doesn't matter. He's like, well, if I'm, she's like, you could do either, you know, so you could choose African American. He's like, well, if it doesn't matter, I'm going to choose white. And he said to her, I choose like, it's like a broker. She was literally like, he's like, I thought you said it doesn't matter. And then I think it was like five years later, came out that Bank of America was doing loan rates according to the, the racial categories.
which of course they got in trouble for it, thankfully. it's like, Yes. Yes. We just do it for data collection. I mean, there's all those that kind of soften. I think of George Orwell, the way that we use a lot of Latin terms and we use a lot of jargon to kind of soften what's actually happening. It's like, OK, if you said this very straightforwardly, like.
Shoumita (16:08.204)
Yeah, that was my next question. Why are they asking? It shouldn't matter.
PJ Wehry (16:32.98)
It's not okay. One of your chapters is the flawed premise of genetic essentialism. So what is genetic essentialism and why is it flawed?
Shoumita (16:44.418)
Yeah, when I think about genetic essentialism, I like to allude to this analogy that the scholar Kamara Jones first communicated. And she talks about this analogy where she moves into her home and she has these two planters on the two sides of her new front door. So she wants to beautify her new home with some flowers. One of the planters still has some soil left over from the previous owner, but it's, it's discarded soil. It's kind of sandy, rocky. It's not the greatest, but she goes to the gardening store and just gets enough.
soil for the other one, the empty one. So the new soil is fertile and rich and new, fresh. She plants seeds in both planters, totally identical except for the color of the blooms. And what she finds is that the pink flowers planted in the sandy soil don't sprout as readily. They aren't doing as well and the red flowers are sprouting much more happily in the fertile soil.
And then she kind of starts paying more attention to them, watering them, giving them extra sunlight or just the right amount of sunlight or some fertilizer. So she's kind of favoring the growth conditions of the red flowers. The red flowers already had an advantage in the better soil, but then she structurally created an even more beneficial situation by providing more nutrition, more water, more sunlight. So that's kind of an analogy for institutional and structural biases.
And then at the end of the day, when her red flowers are robust and tall and healthy and many, flowers and the pink ones are sort of droopy and not great, a genetic essentialist would attribute that difference entirely to genetic potential and would ignore all of the other things that went into the equation, the water, the sunlight, the fertilizer, the soil. And so a genetic essentialist ignores all of the social factors that contribute to human difference.
and tries to explain it all the way with biology. The reason that's dangerous though is because if you ignore all the science, all the social factors, what ends up happening is that you sort of take this fatalistic view like, well, this is just how it's gonna be. So no need to invest in any infrastructure to help uplift people who are at a disadvantage because it's just in their genes. They're just less able. And that's the issue is just taking this defeatist attitude where
Shoumita (19:02.382)
In fact, there are social structures contributing to that difference and there are things we can do to level the playing field.
PJ Wehry (19:10.14)
And for the people who are studying the flowers in this case, if you have a guest come to the home and if she hadn't been paying attention to the soil and she's like, yeah, I guess the pink strain just isn't as good. It's not like a guest is going to sit there and really study the two of them. They're just going to take her word for it. Most people, like that would be a very strange person who'd be like, are you sure they look the same? And started like digging in the soil. But most people, you know, outside,
Shoumita (19:27.275)
Exactly.
PJ Wehry (19:39.342)
When you talk about most people living their daily lives, they just take at face value what they are taught by people they assume to be experts.
Shoumita (19:47.102)
Exactly, right. Part of the issue really is that, you know, we have this combination. We have some people who say they want to do their own research, but they're cherry picking information that supports their own ideas. And then, and then we have people who... Yeah, and then the other issue, of course, is that like we were talking about before, some of the scientific terminology can be alienating.
PJ Wehry (20:00.916)
Sorry, that phrase is so triggering for me. I'm sorry, continue.
Shoumita (20:14.966)
It is easier to take somebody's word for it if they sound like they know what they're talking about. But we really do need to have a sort of baseline literacy so that we can talk about these complex topics in a more informed way.
PJ Wehry (20:27.346)
Yeah, don't think that's necessarily complex things are complex. I think that's, you know, and it takes effort to understand them. So it's not necessarily that like, scientists are trying to be alienating. It's like you need a different term to differentiate between these two. I think good.
Shoumita (20:44.884)
I do agree with, think scientists have earned expertise, but I also think that, yeah, but I also think that, you know, we need to have more conversations that bridge the divide between people who have spent their lives learning science and also the people who science impacts their lives. And that's really everyone these days. Science is in every aspect of our lives, from our computers to our healthcare.
PJ Wehry (20:50.068)
Okay, yeah.
Shoumita (21:14.782)
we do need to at least be conversant in how these things impact us.
PJ Wehry (21:19.62)
It makes me think of, and I haven't read the book, it's sitting on my Kindle, I'm ashamed to say. But Carl Sagan, the demon haunted world, right? People have a certain story of the world and then you have all these, actually you may disagree with the science, but literally you live according to the science every day.
Shoumita (21:41.378)
Yeah, exactly.
PJ Wehry (21:44.116)
So you have, you go through different biologies of human populations. In your first chapters on race, ethnicity and ancestry, do you mind talking through a little bit about how biology plays through those concepts?
Shoumita (21:58.828)
Sure. One of the wonderful things about where we are currently in terms of our understanding of human biology is that we have engaged in the Human Genome Project. So we actually have genetic sequences of people across a lot of different groups, continental groups, racial groups, ethnic groups, and ancestries. Race and ethnicity, those are socially defined constructs. Race is, as we talked about, it's mostly human
It's a human grouping or human label that's based on these kind of external features of our bodies. Ethnicity starts weaving in some more things, you know, like around language, religion, culture, those kinds of things. Ancestry is the one that's actually who are our ancestors who passed on their DNA to us. Looking at the DNA in the Human Genome Project and others that have looked at more and more people's genomes, what we see is that, you know,
You might have gone into the human genome project thinking, oh, when we look at people's genomes, we're going to find differences just the same way as when we look at people, we see differences. But actually, when we look at the genetic level, we see that we're incredibly alike. have 99.9 % of our genomes the same. And just a tiny sliver is different. And in that sliver, those variants exist across populations. There's a very rare small number and small frequency of variants that
are unique to individual populations. So the vast majority of variation is within groups, not between groups. And the other way to think of it is if we were to look at variation, it's also continuous. It's not that you find this kind of variation on continent A and this other kind of variation on continent B. find it everywhere. So there's nowhere in the globe that you can just draw a line and say, this side of the line is where black people live, and on this side of the line is where white people live. It's entirely continuous. So that's
one really important takeaway, think, from the Human Genome Project and other subsequent studies.
PJ Wehry (24:00.102)
And I think this goes back to what that thinking fast and thinking slow is that from a biological standpoint, our brains are trained, you you said that our initial thought was that we're going to see so much difference in the human genome because we see so much difference. And the truth is we don't actually see that much difference in humans. It's just that our brains for biological reasons, for evolutionary advantage is trained to observe difference. So that's what we pick up on. that, am I?
That's what I assumed, but I could be wrong.
Shoumita (24:33.568)
No, that's right. And it's also just, you know, as we're young people, we're just trying to make sense of the world around us. And part of that is observing difference. I mean, you've probably heard kids saying the craziest things about differences they observe in the grocery store about people shopping next to them or whatever. Kids are looking for those differences and they're just trying to understand, you know, how the world works. What are some rules so that they can figure out their place in it?
And so it's up to us as the adults in their lives to figure out how to explain, you know, what is meaningful difference and what is not meaningful difference and how to build bridges rather than create silos.
PJ Wehry (25:13.082)
And I think, and I.
There is value to studying the differences in different applications. let me finish the talk because I realized that gets a little scary. I was doing a radio show with an African, with a black friend of mine. And I mentioned getting sunburned on the top of my head because I'm balding.
He and I was like, so make sure you wear sunscreen on top of your head and he also had a shaved head and he's like I'm not worried about it, right? It's not you know, it's like I like you know, there's there are those And for medicine that like you And I'd love to hear how you navigate this in the medical field It is important to note these kind of genotype phenotype, you know, you think about instances of sickle cell
and different things like that. So how do you navigate the useful study of difference while also making sure that it's equitable? Does that make sense?
Shoumita (26:25.166)
That's a great question. Yes. And I think that you're right. It is important for us to be thinking about difference so that we can maybe develop a drug or learn about a different way to approach things to preserve health across a larger array of humans. But one of the thinking errors that a lot of people make is that they see a difference in one person and then they ascribe it to the entire group to which they belong. so, you know, I think if we were to say
PJ Wehry (26:49.064)
Hmm. Yes.
Shoumita (26:54.112)
well, it's impossible for people who are black to get sunburned. Well, that wouldn't, that would be an oversimplification. There's a whole range of different skin tones in the black community. And it's also known that when black folks do develop skin cancer, it's often picked up later and it can be more serious. So we can't just assume, for example, the entire community is entirely immune. So when we think about human difference, you we zero in on a difference for the purpose of trying to promote health.
We just have to make sure we don't ascribe it to the whole community. There's a famous story, for instance, along those lines that has to do with cystic fibrosis. Cystic fibrosis is a condition that has to do with respiratory health, primarily. And it's found more frequently in white populations and European ancestries than in populations of color. And there's a story about a black gentleman who had cystic fibrosis. had all the classical signs of cystic fibrosis.
but he went undiagnosed until his fifth decade of life. And normally it's diagnosed in childhood. And in his case, it was undiagnosed. And even 20 years earlier, his physician said, gosh, if you weren't black, I would think you had cystic fibrosis. And so it's that racialized thinking that prevented him from accessing the healthcare he needed. And in fact, along the way, physicians were saying, you must be having these aspects of your healthcare, your health needs.
PJ Wehry (27:57.267)
Yeah.
Shoumita (28:20.278)
because of all the alcohol you drink, not realizing that it has to do actually with the cystic fibrosis. So there's all kinds of harms with these misdiagnoses that not only prevent your access to healthcare, but also ascribe the blame inappropriately.
PJ Wehry (28:35.184)
So, and I realize this is a difficult question, but we talked about thinking fast and thinking slow. So when we're talking about something like, obviously, if that's been going on for five decades, we had time to think slow and work through that. But is there value in thinking fast and approaching? I mean, this just shows the depths of my ignorance, but they showed a
a medical show where a black lady came in and she was showing symptoms of sickle cell. I can't remember when it's coming to fruition is not the right term, but she was exhibiting the painful side of it, like the symptoms were coming. Yeah, I'm sorry. OK.
Shoumita (29:21.482)
Mm-hmm. A pancreasus. It's called a pancreasus. Mm-hmm.
PJ Wehry (29:31.366)
In that instance, there has to be immediate action. so they're making a faster diagnosis because that is more prevalent for African-Americans, for Black people. And so is that a good example? Like when you're in an emergency situation making snap judgments, is there a way to train those so that they're more equitable but also more effective?
Shoumita (29:55.694)
That's an excellent question. I like to think of this as, you know, in medical school, you're talking about something like a differential diagnosis. You take all the information and you're trying to solve the puzzle. What best explains what you're seeing happening in your patient? So the differential diagnosis may include a number of possible explanations. And to me, when you start thinking about incidence numbers and populations, that may influence the ranking of the things on the list, but it shouldn't take something off the list entirely.
PJ Wehry (30:25.992)
Yes, yes, that makes sense. So it can it can help you as you're like, and it might affect the treatment a little bit, but you should be watching and not take things. I mean, obviously, there's a big difference, too, between some and when you need immediate help. And when you have, I'm sorry, I'm still struggling with five decades of like, that can't be it.
It's like you had time to really reason through that. Thank you for your patience. I really appreciate you walking through this. So how does that biology play out in sex and gender?
Shoumita (30:52.588)
Yeah. Yeah.
Shoumita (31:11.074)
Yeah, excellent. So sex and gender is very similar in that there are some aspects that are biological, that's on the sex side, and then there are some aspects that are socially constructed or that are part of personal identity, that's gender. With sex, there's a variety of different aspects that contribute to sex. There's the sex chromosomes, people know as the X and Y. There are other genes in the genome also that contribute to sex development. Then there are the anatomical
features that develop over time as well. Some of them include the gonads, like the ovaries and the testes, which produce sex hormones. And the sex hormones then drive further aspects of sex development, secondary sex development. So all of that is biology, developmental biology. Gender, though, is who you are in your heart and your mind. And when people ask if somebody is cisgender, that's when...
that most typical alignment occurs between a female body and a girl or woman identity. But that's certainly not the only combination that exists. Gender and sex both are on a spectrum. That neither one is binary, even though there's a common misconception that sex is binary. There are male bodies, there are female bodies, but there are also intersex bodies.
And intersex bodies have some features of male development and some features of female development. Just like with sex, there are boys, there are girls, and there are non-binary and gender fluid and gender queer people. So there's a lot of different kinds of combinations and there's no one for one between what the biology of your body says and who you are in your heart and your mind.
PJ Wehry (32:59.976)
And how does that play, for instance, play out in differential diagnosis?
Shoumita (33:07.566)
So a lot of times what's happened in medicine is there have been a number of studies, and I will just preface this by saying these studies are well-intentioned. They're trying to understand why healthcare disparities exist. But then an error is made in conflating sex and gender, or it's used as a proxy for a difference that doesn't actually explain why there's a difference. And so, you when we...
PJ Wehry (33:31.644)
Forgive me. What do you mean by that? It's a proxy for difference. I didn't quite catch that.
Shoumita (33:37.184)
Yeah, yeah, thank you for asking me to read this, When we're thinking about proxies, it's sort of like saying, let me think of a good example. like maybe men have more negative outcomes with alcohol use than women. That would be a proxy using gender as a measure for what the outcome is going to be. But actually, you know, maybe it has more to do with how livers are dimorphic
Organic meaning that they're influenced by which hormones are in your body And so the liver may function slightly differently in male bodies female bodies and one of the harms in In making those assumptions based on identity is that then we don't understand the underlying The underlying causes for the difference and so if you have somebody who's transgender Some aspects of their biology may be male and some aspects of their biology may be female and it may depend on
on if they're taking gender-affirming hormones. And so if we don't actually understand which aspects of the body are contributing to the difference, then we don't know what to do when we're working outside of the binary. And we also don't know what to do with any of the social structures that contribute to any observed difference. So it could also just be that there's more social pressure for men to drink than there is for women, just to take that example another step further. So it may really have limited things to do with
what's happening at the biological level. It may be more about the social level. But the point is if we're just happy enough to use something else like gender identity as the discriminating factor, then we don't actually understand the mechanism, which means we can't actually help the person interrupt that pattern.
PJ Wehry (35:23.326)
So as an example, there seemed to be certain symptoms before with the black individual had cystic fibrosis and they blamed it on drinking when really it was cystic fibrosis. And so a good example is it may be cultural or in social forces that lead to more drinking for male bodies. Or it could be male hormones that are actually causing that make them more susceptible liver damage. And it's important not to
Like it's important to leave all that open. that? Yes, yeah, right. Once we figure it out, yeah.
Shoumita (35:56.63)
Until we know, until we know, right? can, yeah, you can, yeah. But the problem is that so many studies have stopped before that last bit is sorted out. And it's important to do that last bit of studying so that we actually can develop effective therapies for everyone.
PJ Wehry (36:14.068)
Now, and this is where we get some more into the social cultural side. This is, we've kind touched on this a little bit with the Trevor Noah story, but data privacy is a consistent issue with public policy. How does the data privacy of personal genetic information affect justice issues?
Shoumita (36:43.234)
Yeah, this is really interesting in particular because the new owner of 23andMe was just announced yesterday. So all the people who have...
PJ Wehry (36:51.524)
I haven't seen, I saw that it's been resurrected. I don't know who it is.
Shoumita (36:55.936)
So there's a company named Regeneron, which has purchased the rights to 23andMe. 23andMe, for folks who don't know, is a testing service. It's a personal genetics testing service. So you can take a DNA sample at home, it in, and they'll do some genotyping, which is to identify different genetic variants throughout your genome and give you information, mostly about ancestry, but also a little bit about what you have a genetic predisposition for.
So they have all this information in databases. They've had trouble staying financially solvent. So they've gone through bankruptcy proceedings and their biggest asset is information on all the people who sent them their DNA samples. So Regeneron has decided to buy 23andMe. And there's positive things to having databases of genetic samples, which include being able to do genetic studies and understand what the genetic basis of different human diseases are, which can be
launching point for developing drugs. So that's the positive side. But on the negative side, 23andMe has also been hacked. And the hackers have specifically targeted Jewish customers and Chinese customers. And apparently we're selling some of that information or putting it up for sale on the dark web. So there are, you know, breaches of this data, highly personalized data that are concerning.
And so being aware of privacy issues is really important because our genomes are very uniquely personal pieces of information. One thing that I often think about is this story out of New Jersey where there was a baby who was going through newborn screening. Newborn screening is something that's offered to all babies born in hospitals in the United States. And it tests for different conditions that would severely impact their life or their health.
for which there are good interventions for babies. So if you identify it early, you can get them in treatment early. So one example that people might think about is if somebody is deaf. If you identify early that they're deaf, you can start in on sign language. So there are things that you can do when you know early. So with...
Shoumita (39:18.466)
these newborn screening, the items that are chosen to be on the newborn screen are very carefully chosen because they can really improve the lives of the kids who are involved. And they do take these blood samples, they put them on little cards and they go to state labs where they're tested for different chemicals that are in the baby's bloods and you might find maybe they need a special diet or something along those lines. So these blood samples are stored in the state labs. Some states store them
almost indefinitely and some states have like a rotating schedule when they destroy them. But in New Jersey, there was one case where, where law enforcement was trying to solve a crime. And they realized that one of their suspects, you know, had a relative, not a immediate relative, but somebody that they could make the lineage trace to, who had just gone through newborn screening. So they subpoenaed the card with the baby's DNA, and they were able to make that connection between
the person who committed the crime and this baby who was just going for healthcare. So on the one hand, they solved the crime, which of course is a good thing. But on the other hand, they raised this major privacy issue about a baby who, you know, maybe the take home message for that baby and for the community even is don't go through newborn screening because they might take your DNA and use it for other purposes.
And that would be a really negative outcome because as I said, the newborn screening is really specifically to promote health of brand new babies, things that are addressable in the early days of life. And if people are withdrawing from newborn screening, there's a lot of missed opportunities for promoting health of little kids.
PJ Wehry (40:58.484)
I'm sorry, I'm just imagining like a Tony Soprano figure, like going up to a baby and like, I never thought you'd be a snitch, you know, it's like, that's, that's, I, I've had a couple of guests on talking about data privacy and we have gained so much by gathering data and you reference that, but the, some insane, I mean, we don't have time to get into it, but just like.
Shoumita (41:05.462)
Yeah, yeah.
PJ Wehry (41:26.32)
It's mind boggling the misuses that are, you know, it is just so much power. It's a, it's in many ways an entirely new form of power that we've not really experienced before. And so there's all these new dangers and it's hard because I think we would, we're happy that the crime is solved, but then it's okay. But then how does it get misused? And it is an appropriate question. And we have seen, or, or we will see very soon. I'm sure if that continues, there will be a misuse of it.
Shoumita (41:55.726)
Right. And for now, what they're saying is it makes sense to be considering these kinds of strategies, maybe for violent crime, but not for property damage or something like this, you know. And the other thing is maybe there needs to be a restriction on not only what type of crime, but also whose DNA you can actually look at. Babies are really not involved at all. Right. So why are we now compromising their healthcare in order to solve this crime?
PJ Wehry (42:23.262)
Right. We don't want pressure from the criminal uncle to, no, no, no, don't have your baby screened. It'll get me put in prison. Like that's, I mean, this is a real, it's odd, but that's a real issue.
Shoumita (42:34.862)
Mm-hmm.
It is.
PJ Wehry (42:39.412)
Um, so I want to be respectful of your time. Uh, one, let me just say, I've really appreciated, uh, your, your very gracious answers for very difficult questions and, um, far outside my field. So very ignorant questions, but, uh, kind of as we come to a close here, I wanted to ask you. Aside from reading your excellent book, which I think you do a great job uh, cluing people in. mean, you have that.
I think you mentioned this is intended for college students and it's clear or it came out of that class and it's clear that you've done a lot of work explaining these concepts. So aside from reading your book, what would you recommend to people who have listened to this episode that they either do or think about over the next week after listening to this episode?
Shoumita (43:30.454)
Yeah, well, first of all, I want to say I wouldn't call the questions ignorant at all. I would say the real best thing that we can all do is to bring curiosity to our understanding, be realistic about what we know and what we don't know, and be ready to listen and learn about some of these complicated scientific topics that have incredible implications for our day-to-day lives. And I'm hopeful, even though my students are actually
PJ Wehry (43:42.612)
Hmm.
Shoumita (43:59.662)
PhD students and medical students, but I wrote this specifically to try to be accessible to people who are non-scientists who are thinking about the way that science can impact their lives. So high school biology is good enough to go with this topic. And I really do think it's important for us to be having these conversations, not only to understand the content of self, but also to be talking to people who have aspects of their identities that are different from ours so that we can really.
PJ Wehry (44:11.81)
Yeah
Shoumita (44:27.854)
build bridges and understand more about what we have in common.
PJ Wehry (44:32.51)
Dr. Desgupta, it's been an absolute joy. Thank you so much.
Shoumita (44:36.098)
Thank you so much. I had a great time. It's been a pleasure.