Episode 31 - Genomics (feat. Joel Michael Reynolds)

Transcript

David: 0:07

Hi, I'm David Peña-Guzmán,

Ellie: 0:08

And I'm Ellie Anderson. Welcome to Overthink,

David: 0:11

the podcast where two friends,

Ellie: 0:13

who are also professors

David: 0:15

put philosophy in dialogue with the everyday.

Ellie: 0:18

Because big ideas are within everyone's reach.

David: 0:30

Ellie, genomics is all over the place nowadays.

Ellie: 0:34

Yes. I've heard that genetic testing is even starting to be used in labor hiring practices. In Singapore, for instance, there's a specific gene that was found to be associated with docile workers who were less moody and so we might be looking at a future where industrialized countries are hiring people based on their genetic profiles. This is a dystopian terror.

David: 0:56

I believe I have that gene. I am a very docile subject.

Ellie: 1:01

David, docile is the last word I would ever use for you.

David: 1:06

That is the biggest compliment you've ever given me. You don't even know it. Like I am radiating positive energy as a result of that comment. No, but it's not just work. It was in 2008 that Newsweek reported that China was also going to begin using genetic testing a way of recruiting people into athletics, because they also found a genetic sequence that was assumed to be correlated with higher athletic performance. And so then the idea was that they were going to genetically test athletes for the next Olympic games and a number of people expressed horror, as you say, it was a dystopia moment, because they worried that the Chinese government was going to begin using these tests as a way of canalizing young children, based on their genetic results, into various career paths. Like, oh, you have the genes to be an athlete, so you can't take engineering. Your future is sort of like written from the very beginning.

Ellie: 2:13

What if this whole time I have the gene that makes me a great athlete and we just never knew it because I grew up as the kid of two theater parents. What if I could have gone to the Olympics instead of becoming a philosopher who has a podcast.

David: 2:25

I mean, I've always thought that you're really good at running, from your problems, and jumping, to conclusions. But you know, it all depends on what you think there is a gene for, because about a year ago, there was also an app that has since been deleted that offered genetic testing services to people. And promise to give them an answer to the question: how gay are you? Because if you believe that there is a gay gene, then in theory, you can test for that gene.

Ellie: 2:58

My goodness. The search for a gay gene is just like apotheosis of the dogmatically scientific culture that we live in. It's like oh in order to justify being gay, we need to tie it to a gene. Oh my.

David: 3:10

It's like the science is so bad. I think everybody knows that if you want to identify gay people, you have to go by like gay face. That is real science.

Ellie: 3:20

Okay.

David: 3:21

Yeah. You know, there was also a scientific study trying to establish a correlation between a highly symmetrical facial structures and homosexuality, like gay people are just prettier because they have more symmetrical face structures. That one was good science.

Ellie: 3:38

Oh my God. These are particularly dystopian or at least misguided uses of genetic testing, but I'm wondering about less scary versions of genetic testing. Like I took the 23 and Me test. Didn't find out much that I didn't know already. For instance, I'm 97.5 Western and Northern European, mostly from Scandinavia.

David: 4:01

Only 97%?

Ellie: 4:05

Yeah, my sister and I found out that we're 0.2% Sicilian, so we've joked about doing a heritage trip to Sicily to rediscover our roots.

David: 4:12

Yeah. And this is where you started talking about how Italians used to not be white. So you come from a nonwhite family.

Ellie: 4:21

Yeah. I actually discovered through 23 and Me that I'm a person of color.

David: 4:26

Well, you know, you joke about that, but there are all these cases of people taking 23 and Me, and sort of exposing really dark family secrets that 10, 20, 30 years ago we didn't know could be exposed like issues of paternity. Because if you have, let's say a parent from one race and a parent from another race, and then your results come back showing that you don't actually share a lot of similarities with one parent, it can be a way of discovering something that maybe you didn't want to know.

Ellie: 4:56

Definitely. And I also don't want to minimize the 23andme genetic testing for formerly colonized and/or enslaved peoples who might not have a very good sense of what their heritage is. You know, I can understand how it would be actually really life-affirming to find out, Hey, my family was in the Caribbean for a couple of hundred years, but I actually have roots in Ghana. Although I have to say the granularity of these tests is really iffy because the 23 and Me data, as far as I understand it, is partly determined by who takes the test and wealthy white people are probably the most likely to take this test. And so there's a lot more granularity when it comes to white European ancestry than there is when it comes to African ancestry.

David: 5:33

Yeah. And so there are some uses that have this kind of political value, like filling in some of the gaps that were intentionally produced by the transatlantic slave trade. Or for example, some people have used that to find biological parents or people who have been separated. There's also been a movement in Argentina for using genetic testing as a way of reuniting the children of what are known as the desaparecidos, the large number of people who were made to disappear by the Argentinian dictatorship in the military, during the communist scare, and turning to these technologies as a way of connecting children that were sort of taken from their families back to their roots. So there are all these ways genetic testing can recreate bonds that were destroyed by time and by human violence.

Ellie: 6:27

We're talking about the ethics and politics of genomics.

David: 6:31

How are we using genetic testing today and to what ends?

Ellie: 6:36

What assumptions do we make when we use genetic testing about which lives have meaning and which don't?

David: 6:44

Today we speak with Dr. Joel Michael Reynolds, an expert on genomics and disability theory about the relationship between genetic testing and ableism. Even though the science of genetics has been around since the early 20th century, the science of genomics is a little bit more recent. The difference between the two is simply that genetics typically focuses on the study of the DNA found in the nucleus of the cell. Genomics takes a whole cell approach. So it looks at the entire human genome, not just what is inside the nucleus of the cell. So it also looks, for example, at mitochondrial DNA. And so we can use the terms interchangeably while recognizing that there is technically a scientific difference.

Ellie: 7:34

So genomics has given us a bigger picture of human DNA.

David: 7:38

Yeah, that's exactly right. And over the last three decades, genomics has become a major, major player in the international scientific community, largely as a result of all the excitement surrounding The Human Genome Project, which was completed in 2003, which was a government funded effort to sequence the entire human genome. And the idea was that once you do that, you will have cracked sort of the Rosetta Stone of human biology.

Ellie: 8:10

And once we did that, it's become a lot cheaper to sequence the genome. The first sequencing of a genome costs between 500 million and a billion dollars, but now it costs less than $1,500.

David: 8:23

To be told what corner of Scandinavia you come from. No, but- but you are right. There's a long story to be told here about the technology of sequencing, which has been the source of a lot of contention between those who want genomics to happen in the public sphere and those who want it privatized because there was a whole issue about whether the information could be patented by a private corporation if they got there first.

Ellie: 8:48

That didn't happen?

David: 8:49

No, it didn't happen. The public effort ultimately won out, but that tension happened over a question of ownership of the actual computers doing the sequencing because you're right, sequencing got faster, it got cheaper, but for a long time through the nineties, it still required relatively expensive computers, but now we can do it faster and cheaper in a way that's not even comparable to what was happening in the 1990s.

Ellie: 9:16

And I remember there was also all this excitement around how the sequencing of the human genome would solve all genetic diseases and even pave the way to precision medicine. What is precision medicine?

David: 9:28

Precision medicine is the idea that we should be able to have enough genetic information in the future so that people, when they go to the doctor can have their genome sequenced by the doctor and the doctor will give you an entire prognosis of what is wrong with you based on your personal genetic profile. And more importantly, you can then get drugs that are specifically tailored to you on account of your genetic information. So the idea is that people no longer have to take like generic treatments. Everything is tailored to the specific individual.

Ellie: 10:01

And the doctor gets the genome through a simple blood or saliva sample.

David: 10:04

Yeah, that's right. And so this is an ideal towards which genetics and genomics are moving, but we are simply not there yet. And the fact that we're not there yet 20 years after the completion of the human genome project suggests that a lot of the hype around genetic sequencing has been somewhat hubristic. The hype maybe wasn't all that, and even though we've learned how complicated genetic testing is and how much more limited the successes have been than we anticipated, genetic testing has become part of our everyday lives. For instance, the Israeli bioethicist Sivan Tamir explains that we now have all kinds of genetic tests, many of which are direct to consumer and you don't even need a doctor's prescription to get it, like your 23 and Me test, Ellie.

Ellie: 10:56

Yeah, these tests are everywhere. And interestingly, they're not allowed to market themselves as medical technology. So they have to say they're educational otherwise you would need a doctor's order for them and a doctor's help interpreting the results. Aren't they medical in a sense, I had to spit, provide kind of a lot of spit actually, into a vial for the 23andme test.

David: 11:18

Love that you're like it's medical because I struggled filling the vial. That's what makes it medical. No, but you are right as source of tension here about whether these tests count or don't count as medical information and medical advice, because that determines whether they fall under the regulatory framework of the FDA. And currently they don't. And you're putting your finger on a major controversy in research about the social implications of genetics and genomics, which is, How do we know where the line between educational information and medical information is? Are people not really relating to these tests as medical technology? And if so, they should be regulated as such. More importantly, because people don't need a doctor's prescription in order to get these tests and they don't need to have a doctor present to interpret the results for them, there's a lot of ambiguity about how these tests are being interpreted. And even when there is a doctor in the room, these tests are really difficult to interpret. We just don't really know the meaning of a lot of sequences of nucleotides that recur in the genome. And I think this is the crisis at the heart of modern genomics. It's a crisis of meaning.

Ellie: 12:33

And so we should be a bit skeptical about the applications of these tests for human life. That's not even to get into the really nefarious elements of these tasks, for instance, prenatal birth testing, which might lead to somebody deciding whether or not to abort a fetus.

David: 12:50

Yeah. The case of prenatal genetic testing is particularly difficult because it raises core philosophical questions about life and death, about responsibility, about ethics. And to help us think through these dimensions of modern day genetic testing, we have with us today Dr. Joel Michael Reynolds, who is an Assistant Professor of Philosophy and Disability Studies at Georgetown University and one of the founders of the Journal of Philosophy of Disability. Dr. Reynolds specializes in bioethics, the philosophy of medicine and the philosophy of disability. He has also written numerous articles about the ethics of disability and genetic tests.

Ellie: 13:34

Welcome Joel!

Joel: 13:53

It's so great to be here. I'm a big fan.

Ellie: 14:01

Thank you.

Joel: 14:02

Yes. Uh, I wish it was in person, but this will have to do for now.

Ellie: 14:06

I know the last thing the three of us were together was in Paris, I believe.

Joel: 14:10

God. You're right.

David: 14:11

Oh.

Joel: 14:12

I forgot.

David: 14:15

Well, I don't I actually don't even re- I don't even remember that.

Ellie: 14:18

Was also not good times.

Joel: 14:19

I was also impressed cause I knew Ellie's French was good, but to my, you know, untrained ears, it was even better.

Ellie: 14:26

Aw, thank you.

David: 14:28

Emily in Paris, the prequel.

Joel: 14:30

Yeah.

Ellie: 14:35

Well, so let's turn to the philosophy now. Not that, you know, I couldn't listen to you complimenting my French for much longer. It could go all day. Um, but Joel, you have made a very interesting argument that the science of genomics might normalize what the philosopher of disability Rosemarie Garland-Thompson calls velvet eugenics. Can you explain the concept of velvet eugenics and tell us why you think it captures something important about the ongoing genomic revolution?

Joel: 15:07

Yeah. So this term, to my knowledge, it was Rosemarie Garland-Thompson, who coined it. And she's written about it in a few different spots. And the core kind of distinction is between velvet versus you could say violent eugenics and everyone knows what violent eugenics means. You know, just cue references to the Nazis, cue references to the American and British eugenics programs, uh, at the turn of the 20th century, we all know what that is. And velvet eugenics is a way of trying to make clear that the form eugenics takes in places like the United States today is one that's very soft and easy and it seems like really nothing is even going on that might potentially be problematic. The way that Rosemarie puts this in this really fantastic edited volume, which I highly recommend for anyone to read, it's called Human Flourishing in the Age of Gene Editing really, really great volume. And she writes the lead piece and she says, look, velvet eugenics, it standardizes human variation in the interest of individual market-driven conceptions of liberty. And, in general, that might not be that bad, but when you actually look at how this plays out in various consumer clinical space, that standardization process is often occurring at the expense of, or in place of, programs for social justice and the common good. Or conceptions of the common good are getting, you know, reduced to just what a parent is, uh, thinking about relative to their individual child and one really controversial, but important, example is what has happened to the population of people with Down's syndrome, uh, globally, but especially in wealthy industrialized countries in the global north. There is a piece that got a lot of press, um, last year came out in the Atlantic called the last children of Down's Syndrome. The reporter's name is Sarah Zang. It was a really good piece because I think no matter what position you kind of take on these debates, it- it forced you to kind of think about different arguments and angles and different problems with it. But one of the opening pieces of evidence that Zane points to is in Denmark, almost no one is being born with Down's syndrome. Uh, like at all. And of course, if you believe that being born with Down's syndrome is kind of part of human variation and we want people like that in the world, there's an argument to be made that there's a set of conditions in place that are essentially removing this entire group of people from the Earth, either in particular places or, or writ large. And that's like a perfect example of what Rosemarie is trying to point towards when she says velvet eugenics. No one said, no government, you know, entity was like, don't have people with Down syndrome. This happened by virtue of individual decisions, combined with advances in clinical and consumer genomics and prenatal testing. And then lo and behold, this is now the world.

Ellie: 18:18

Mm. So does that mean that people in Denmark are aborting fetuses that have Down syndrome?

Joel: 18:27

It's a combination of abortion decisions combined with prenatal testing where you would be deciding ahead of time between various, you know, embryos, one that-

Ellie: 18:38

I see.

Joel: 18:39

Yeah, that sort of thing. And one of the other components that is talked about in this piece is that the reason Down syndrome was ever one of the very first things that we could test for relative to prenatal testing is because it's easy to test for.

Ellie: 18:55

Oh.

Joel: 18:55

It- it was literally just the ease of figuring out if someone is going to have an extra chromosome on 21, it was the ease of that that led it to be one of the first things targeted and what the reason that is so well, I think that's actually quite terrifying, is the decision-making process for creating those tests was not over the flourishing or the well-being of people with Down syndrome, because if it had been about that, I'm not sure why there would have been tests for that. We know all of the empirical qualitative evidence that I'm aware of suggests that people with Down syndrome live very happy flourishing lives. Yes. There are certain complications that can arise. There's a subset of people who have heart problems, but if you're born in the US and you have access to health care, that can be addressed pretty easily now through the advances in cardiology. Anyway, the point being how it's not the ethics or the, the concerns over wellbeing that drove the testing, it's just the ease of the tests that actually put that out there in the world. And that worries me, of course. I mean, I'm an ethicist by training. So I, I, I get worried when ethics is like not part of the conversation and then some technology comes out that then changes people's relationship to parenting and, and future children.

Ellie: 20:14

Yeah. My cousin Grace has Down syndrome and I don't want to obviously speak for Grace, but like life is so rich and full, her network of relationships that she has, I think there's really no way you could look at her life and be like, that's not a version of human flourishing.

David: 20:28

Yeah, but I take it of people who make those judgment calls, right, who say, I'm going to have an abortion, or I'm going to not proceed with a particular embryo, that decision often happens in isolation from any meaningful connection to real people who are a part of the community about one is making a judgment. So Joel, you have written about this, about the kind of value judgment that is passed on disability and the sets of assumptions that we bring into that without actually knowing what we're talking about.

Joel: 21:00

Yeah, it's unfortunate that we're still barely getting more disability representation in, uh, various media settings, whether it's TV, whether it's movies or whatnot. And for a long time, the representation that was happening was deeply ableist, it was from an able-bodied perspective. You go back to the eighties and nineties, almost every disabled characters played by an able-bodied person who's pretending. And it's not like there weren't disabled actors who could have done it. They were there, they're out there. They were just not being cast. And I think that questions of representation in the media, questions of representation at the level of politics, having more disabled people who are actually, you know, Congresspeople in the Senate, you know, all of this stuff, there needs to be movement on all of these fronts. Disability education is I think a vital aspect of every part of human life. And until more people learn more about disability in all of its many, many forms, I think we're going to run into these issues where people make decisions that are not actually based in the actual lived experiences of people with disabilities. And then this is especially true with decisions that parents are going to face in these sorts of prenatal settings.

David: 22:16

And one of the things that is noteworthy about the genomic revolution is that it has produced a number of scientific and medical technologies that operationalized genomic knowledge, such as genetic screening technologies. Many medical experts push these technologies pretty habitually, sometimes even arguing that it is the duty, right, the moral obligation of prospective parents get tests done, because that allows you to make more informed decisions as a parent about the wellbeing and the future health of your child. But you make the argument that these technologies do a lot more harm than good. What are the dangers as you see them?

Joel: 22:57

So I'd make a slight modification to your summary. I wouldn't say that they necessarily, and as a whole, do more harm than good. I think that in certain circumstances and situations and with respect to certain contexts, they can do more harm. First of all, I want to say that it's important for people to realize that there is no such thing as just genomics, right, the science of genomics. Genomics is an umbrella term for a bunch of discrete projects, for a bunch of discrete sets of technologies that are used in lots of different ways all across the life sciences. What's going on in clinical spaces is often distinct from important ways what's going on in consumer spaces. So I just think it's very important at the outset to realize we're talking about a lot of things that are not necessarily the same. Now having said that, when I talk about genetic screening technologies, so that might include chromosomal micro array, that might include whole genome sequencing, that might include any number of things, what I am pointing towards and what worries me the most is the prevalence, the extent to which, a lot of these tests return results of unknown significance. They will return results that say something is quote, unquote, wrong. There is some quote unquote mutation or some deletion or some addition, but the clinical meaning of that might be fundamentally unknown. Now, part of the reason, this is the case is the number of mutations that any given person has is enormous, right? There is, uh, I remember when I first learned this and it was very hard to wrap my head around, but like, there is no normal genome. Every genome has hundreds and thousands of mutations of every single actual person. And so what counts as normal and what like the standard is, is quite literally an ideal in the sense that it has never existed and will never exist in the world. And that's, I think hard for people to wrap their heads around, because the way that this is talked about publicly is often as if there's like people with a normal genome. And then there's the, you know, and that's just not true biologically, this is false. So having said all this, once you get a grip on the committee plexity of genomic sciences writ large, and also then the complexity of some of these even very specific tests. And then you have parents who are put in these situations, usually with very good intentions, right, they're trying to increase their information about their children so that they can care better for them, presumably. And then it's like, oh yeah, your child has these three microdeletions on what blah, blah, blah, whatever. And we just want you to know. And the parent is like, well, what does that mean? And they go, I don't know, like you literally, the clinician or the genetic counselor might not know. And then you have to have this conversation about like, what do you do as a parent when you know your child has a variant of unknown significance? The social science research on this, the sociologists who were going out there, talking to the parents, what they show is that this really messes with parents. This is confusing. They feel like something is both wrong and not wrong at the same time. Also because of stigma regarding intellectual disability, if there's any suggestion that it might lead to some sort of cognitive learning or other intellectual disability, that can cause a lot of anxiety. And I have trouble with the people who really push this duty to know, and you need to take on all of the information possible. And I feel like, you know, it's been a good thing that medicine has moved away from paternalism, don't get me wrong, but there is now almost this, Chuck it on the patient. It's like the pendulum has swung too far and now it's like, we give the patient all of the information, even if it's uncertain and then you deal with it. We're putting parents in situations that I'm just not sure has their best interests or their children's best interests at play. When you tell them something might be wrong, but we don't know.

Ellie: 27:10

Yeah, well, and it sounds like one way of articulating that is the difference between information versus knowledge versus wisdom, right? So they're getting a lot of information but are they getting knowledge? And even if they are getting knowledge, is that wisdom? And I also want to note that variant of unknown significance is a fantastic band name.

Joel: 27:32

Good point. Oh man. Uh, I might have to steal that idea if I ever playing music again.

Ellie: 27:37

You are much more likely to start a band than I am Joel. So you can have it, happily.

Joel: 27:42

Right. I appreciate that. Yeah. The other thing I want to say, the other thing I should say. I have had certain bioethicists and public health people and medical professionals hear some of my talks on these topics and they'll be like, so are you suggesting we shouldn't do testing? Or are you, you know, are you saying that genomics writ large is problematic? And I want to be very clear. That is not my point. What I hope is that these sorts of analyses and the conversation that we're having right now, I hope that this leads people to just reflect more deeply and have more tools to reflect upon the potential use of these technologies. That's- that's what I want is a, is, uh, is hopefully a deeper and more nuanced level of reflection over what's actually going on. And that gets very complicated because when you are communicating, you know, let's say someone is an expecting parent. The last biology class they took was 7th grade. You know, and their teacher was in their sixties. And so the research was really from 19 I don't know, 1960s or so. And you know, of course, people don't know how a lot of this stuff works. There are people who spend their entire lives focusing on genomics and they will admit the immense complexity of this stuff. And then you put an expecting parent in a situation where you're trying to translate this really complicated science in such a way that it makes sense at the level of lived experience, like it's very challenging I think for everyone involved in these situations. I am hoping to further complexify the ethical kind of considerations, and that's really my main point.

David: 29:24

Yeah. And it seems like there are a couple of ways of thinking about how so much of this is a recipe for disaster for the parents, right? Because the parents, on the one hand, as you point out, don't have a technical background in biology, which is already a difficult subject. On the other hand, most of the knowledge claims or the information sharing under a genomic settings, is not just biological, it's genetic, and more specifically it is statistical in nature, right? So sometimes the claims will be, you have a one out of 86.5 chance of potentially dealing with this issue. And I think there's a lot especially in behavioral economics that shows that the human mind is just really bad interpreting and making sense of probability. Probability is a relatively new science since the 17th century and we just don't make rational decisions in light of probability claims. We don't even make coherent decisions. There's research that shows that if you present the same statistic as a decimal versus you present the same number as a fraction, people have very different reactions to it. So there is the biology, there is the statistics. And on top of that, there is a setting, right? The anxiety of being a parent, and the fact that the information that you're being given doesn't have any clear meanings. So it's just, just inconceivable. Plus the pressure to know these things that sometimes comes from the doctor.

Joel: 31:03

Yes. And this goes back to the distinction Ellie mentioned earlier between information, knowledge, and wisdom, which even though, you know, we could, we could obviously argue till we were blue in the face over how epistemologists would think of that, but for the purposes of this conversation, I think that that's a really useful tripartite distinction. Wisdom is I think what most parents are actually after. They don't just want knowledge, they want knowledge that is informed by some set of values that will allow them to provide better conditions for- for their child's flourishing in general. And that's a high bar, like making wise decisions is a very high bar. And to go back to the point you just made David about the role of statistics in all of this, in addition to the evidence that humans are just bad at thinking about statistics, there's also a lack of clarity regarding a whole set of medical concepts that are quite complicated. The distinction between say a condition and a syndrome and a disease and all of this stuff. And then you add risk on top of those already debatable, complex concepts. And we are in intellectual quagmire for experts. So to give a very concrete example, if you're told that you have the gene that suggests you're going to have Huntington's disease. That pretty much means you will develop it. It's- it's I think 99% chance you're going to get Huntington's disease if you live long enough. Being told that versus being told that you have the genes associated with Celiac disease, HLA DQ one and HLA DQ three. Those are the genes that generally predispose you to the disease. That is a wildly different piece of information because most people, I think it's like literally the majority of people, have those. It's just, it never ends up expressing itself as actually having Celiac disease. You know, and the part of this is a question of monogenic conditions versus non monogenic. You know, like right now there's research to try and think about autism from a genomic perspective. And the only way to even do that is what's called right now, polygenic risk scoring. And we're talking about correlations and sets of mutations of thousands. And sometimes tens of thousands of shifts that then they're trying to link those shifts to what is ultimately a behavioral, like at the end of the day is some sort of behavioral condition. And you've got this weird mismatch of what is on the one hand, a statistically derived difference that is being explained the level of the genome, versus a way of being in the world that in social political life, we just treat in terms of behavioral differences from all sorts of social norms. And they're getting run together in research, not to mention it with how, how, you know, parents are- and also people, also individuals who are autistic, all this is being thrown at them as various ways to kind of conceptualize what's going on. So my point being, it's really complicated and the ethics of it add a whole nother layer of, of nightmarishly kind of complicated considerations. And I just wish, you know, I hope that the public discourse around this would start to reflect the complexity better.

Ellie: 34:34

I think too, what you're speaking to Joel, is this general tradition of what philosophers call scientism, which is treating science as dogma. And here it's not just scientism, but it's this obsession the idea that if we can find a gene for something, then we can know the truth of that thing. I think that slippage between, right, the behavioral expression of something and a gene or the conflation of a behavior with a gene, I think is something that, you know, we should take care not to, not to conflate. But I'm also thinking about the way that this speaks to broader forms of social control in our society. So you have a recent article where you argue that genomics exercise is a fundamentally new form of power our society, and you call this genopower. And genopower you define as a new form of social and individual control that is unique to the late 20th and early 21st century. So us about this. What is genopower and how does it operate?

Joel: 35:37

It took many, many years before I finally became comfortable with that argument because I kept going back and forth on, is what's happening with genomics and is the rise of genetic sciences writ large, is this truly something new or is this merely one more, you know, not actually novel variation of what Michel Foucault called biopower and, uh, in the piece that you just referenced, I say it is new, but it's also kind of a form of biopower and I try and kind of thread the needle between those two sorts of claims. What genopower is simply is a new, I do think it's a new way to precisify. Yes. That is a word. I know it doesn't sound-

David: 36:20

Precisify.

Joel: 36:21

To precisify once, once you realize you're allowed to use that word, it's really useful.

Ellie: 36:28

So its not a neologism, it pre-existed you.

Joel: 36:31

It's been around since the 1990s.

Ellie: 36:33

Whoa. Okay.

Joel: 36:35

It kind of dropped off in the two thousands and I want to bring it back to life.

Ellie: 36:39

Way to precisify word origins of precisify. You came with receipts

Joel: 36:46

That was, that was super dorky. I apologize. Oh my Lord.

Ellie: 36:50

I love it.

Joel: 36:51

So genopower allows us to precisify impairments, certain sorts of impairments, in ways we simply could not before. So to give you an extremely concrete example, when my brother Jason was born, he was born with cerebral palsy, muscular dystrophy, and hydrocephalus, and doctors at that time, when he was born in 1988, I mean, we hadn't sequenced an entire human genome, that didn't happen until April of 2003. Genetic sciences is what it would have been called at the time were in some respects in their infancy. And it's not like we could just go have his whole genome sequence and then correlate whatever information had been developed about various sorts of, uh, conditions similar to his such that we could say, oh, this is syndrome X. And during my brother's lifetime, uh, he, he, he passed away in 2012 and during his lifetime, there were three different shifts between what doctors, who are not just general practitioners, these were experts in some ways regarding the sorts of conditions Jason had, there were three different shifts in what the catchall phrase of what he had was. And part of this was a lack of genomic information to try and track what they knew were the symptomatic expressions he was having with something that would be more concrete explaining its genetic origins. Now, as you can probably already guess I'm going to say, as interesting and potentially, I'm not sure helpful, as that information might have been, I'm not sure any of it mattered. Like the problems Jason was facing in his life were that we were poor and we weren't getting enough support from the state and federal government to like buy diapers. What we needed was not clarity on his genome. We needed social supports to care for him at the level of his daily life. Whatever the genomic advances give us, and I happily admit that in certain cases they give us good things, it still might be the case that they don't get to the heart of what it means to actually care better for people in any number of situations. And I want to say one more thing that brings together a bunch of aspects of what we've been talking about today. Every time I teach bioethics and I try and actually sneak this in every class I teach, I asked students, what do you think is the best indicator of your health and just how your life's going to go in general? What do you think is the best indicator? Students would be like, oh, your wealth or students will be like, oh, your genes or students will go, they'll say all sorts of things. It's your zip code. A better indicator of your overall health. Yeah. And your longevity, then any information about your genome is your zip code. And there's a mountain of research on this because what does zip code do, especially in a place that has such high levels of segregation.

Ellie: 39:43

My God.

Joel: 39:44

Astronomically high levels of inequality, right? We have the highest levels of inequality we've had right now in the US since, before the Great Depression. Zip code tracks healthcare access, access to education and quality of education, zip code tracks access to any number of community supports, whether it might be, uh, you know, churches that can provide more support, whether it's community organizations, whether it's access to sports, parks, zip code tracks your air quality, zip codes, you know, you can just go on and on and on. You can't say this at like conferences with a bunch of genomicists cause they'll get angry and I don't blame them.

Ellie: 40:23

What! You should say, we should all be geographers instead.

Joel: 40:27

We know we should all be paying more attention to politics is what we should be doing. And we should be fighting for policies that actually put public health for all, not public health for the rich, at the center of how we construct our society.

David: 40:41

Yeah. And I mean, this comment that you're making, Joel, about the importance of politics and connection to health, and also your comment about what your brother Jason needed was diapers, not some advanced reading out of the nucleotides in his genome.

Joel: 40:59

No.

David: 40:59

Points to this tension at the heart of the Genomics Project, which is that just doesn't cohere with the way in which real people living in the real world think about health, where your worry is not some mysterious deletion of some part of your genome whose significance is unknown, but rather the possibility of going bankrupt over a broken bone, you know, at the workplace.

Joel: 41:25

Yeah. It was very telling to me that when Barack Obama promoted the Precision Medicine Initiative, which was a relatively large program running under the NIH. At the same time that he was offering a vision and a promise of an approach to medicine that would be the most personalized in history, you'd go into your doctor and they would have your whole genome already sequenced and the drugs that they were going to, you know, give you for X, Y, or Z condition, they would have already checked to make sure if there's, uh, potential side effects relative to your specific genomic information, et cetera, et cetera, et cetera. At the same time that he's standing in front of America promoting this, one in five Americans didn't have access to basic healthcare. Now granted, to be fair to Obama, he, of course, greatly increased access to healthcare through the Affordable Care Act, also called Obamacare, but it's still the case that we are the only industrialized wealthy nation on Earth that doesn't take care of our citizens in the sense of giving everyone access to basic health care. And I always come back to this tension, especially in bioethics, where it's so easy to get lost in the minutiae of, I don't know, questions over patient provider communication, or whether X, Y, or Z surgery should be supported for these particular people. And then the moment you take a larger public health perspective, you're like, whoa. In many respects, we're completely missing the forest for the trees, because the people who are already in the doctor's office and the people who are already have access to whatever surgeries are available are the privileged lucky ones. And there's a huge percentage of our population that can't even get in the door, or if they do get in the door, they're going to get less care because the hospitals are for-profit system and they know that Medicare is going to repay them at a lower level than the private insurance will. Or they then end up with medical debts and yada, yada, yada. If we were talking in another country, it would be slightly different conversation. In the US, we have such a fundamental, deep inequity built into our health system. It's very hard to do downstream bioethical work about things like precision medicine and not think, wow, we're just screwing a huge percentage of the population simply because they're poor.

David: 43:53

I want to take a moment here to throw in the mix two concepts, Joel, that you have coined to think about how some of these inequalities get perpetuated. One of these concepts is what you call epistemic capture. And the other one is what you call value partitioning. I want to talk about both of them, but let's just begin with the first one. What is epistemic capture and how do you think genetic technologies do it?

Joel: 44:24

I'm glad you asked this question, cause I really liked these two concepts, but I need to give credit where credit is due, David. I don't know if you remember this, you read an early draft of this piece. And I was using a different term that ran these two things together. And you're like, Joel, I think you're talking about two distinct things. Then, and then it led to these you terms because of the feedback you gave me. So in some respects, this is also your distinction.

David: 44:50

Oh yes I- I-

Ellie: 44:51

If David had a better memory, I would think he did that on purpose, but I know David well enough to know that he does not remember.

David: 44:57

Yeah, I don't remember, especially cause I didn't see any attribution in the piece.

Joel: 45:02

Oh, yes, you're in the footnotes.

David: 45:04

Really? Oh my God. Oh my God. I have my entire foot in my mouth right now. Thank you for that. Moving on so epistemic-

Joel: 45:13

On, moving on.

David: 45:14

Epistemic capture. Let's begin there.

Joel: 45:17

So epistemic capture is a term that describes when ambiguous information is treated as knowledge as something that tells us something concrete and not ambiguous. Value partitioning occurs when there's a whole lot of interpretive resources to understand something, but it is then instead restricted to an extremely small interpretive or evaluative scale. For example, something is treated as either true or false when there's actually a bunch of in-betweens regarding it, or a bunch of gray areas. In the case of genomic sequencing technology, value partitioning typically leaves open just two possible interpretive options. Something is positive. It's a good thing. Or something's negative. It's a bad thing. And what really worries me, so to go full circle back to some of the stuff we talked about right at the beginning, what really worries me about the way that genetic and genomic technologies are talked about is what is often fundamentally ambiguous genomic information is instead treated as knowledge. So epistemic capture is occurring, and then when it's treated as knowledge, value partitioning occurs. So that that knowledge is either, oh, you're fine. You're normal. Everything's going to be okay. Or, oh, it's bad. You're abnormal. You're not going to be okay. And this, I think, this process happens in all sorts of ways with these sorts of technologies. I think it actually happens with lots of things in the world, but I haven't made those arguments. But it helps me to try to analyze what's going on when. For example, someone might get a variant of unknown significance result, which again has unknown significance. They say, for example, oh my goodness, what if my kid ends up disabled? That's almost a quotation from some of these studies. Well, what's happening there? Epistemic capture is happening and value partitioning is happening. And in addition, there's an- a certain ableism. There's an assumption that being disabled is going to make things go worse. All of that is occurring in a moment's notice. And I think that all of us, whether you're a parent, whether you're a clinician, whether you're a child talking with you, you know, I don't care who you are. All of us need to step back and try and catch when epistemic capture is occurring, when value partitioning is occurring and move back and be like, okay, actually, this is more complicated.

David: 47:45

I really like in your article how you talk about the fact that the moment that something is judged as either positive or negative, judgment is not even based on robust clinical evidence or sociological investigation into the quality of life of the people in question. It's actually made on the basis of these pernicious background assumptions that we carry with us as a society, right? So if you're a prospective parent and you are told that there is this variant that might be associated with a disability, automatically a whole set of associations happen because we live in a culture where disability is de facto a negative. That's the judgment. And so it just gets transposed. And so it seems like that value partitioning is not even done by the individuals who are using these technologies or even by the experts who are administering them. It's made by the culture itself where two sets of agents meet.

Joel: 48:49

Yeah. That's, that's really powerful. And I should say, I mean, the whole reason I got into studying genomics was actually through research and philosophy of disability. And I kept seeing over and over again where these very problematic assumptions, either a binary between normality and abnormality, assumptions that disability is automatically negative or something like this were popping up in the way that people would talk about things like mutations or variations or chromosomal differences or whatever it might be. And, you know, you come to that from a Critical Disability Studies and Philosophy of Disability lens, and you're like, whoa, whoa, whoa, clearly part of the problem here is there is a background ableism. There is a background lack of knowledge regarding disability that then is in part animating the value judgements being made over these differences, let's say, and that I think is a problem. And so in a lot of my work, I'm trying to think through, okay, how can we be more nuanced in thinking about differences, impairments, disabilities, whatever language we're going to use in this space of genomics.

Ellie: 49:56

Well, thank you so much, Joel. It's been absolutely wonderful to talk to you. I've learned so and I'm sure our listeners feel the same.

David: 50:04

Thanks, Joel. It's always a pleasure chatting with you about this.

Joel: 50:07

Thank you. It was, uh, it was so great. I love the show. You guys are awesome.

David: 50:12

And thank you for the shout out in the article. I really loved it.

Joel: 50:16

Okay.

David: 50:27

Enjoying this episode? Please rate and review us on Apple podcasts, Spotify, or wherever you listen to your podcasts. You can also connect with us and other fellow listeners through our Facebook page and Facebook group or on Twitter and Instagram at @overthink_pod.. underscore.

Ellie: 50:48

David that was great. I learned so much from Joel. Among the many mindblowing facts was the fact that the biggest indicator of your health is your zip code. That is so depressing.

David: 51:00

This is what bioethicists called the social determinants of health, that we tend to think of the body and the genes as the things that determine your outcomes. But in reality, it's your position in the social hierarchy that determines how healthy you are and how good of a life you will live from a medical standpoint.

Ellie: 51:19

I'm going to buy the cheap protein powder from here on out, because my health is already determined by my zip code. So what does it matter? I'm thinking like the most simplistic possible reading of that information.

David: 51:32

That is really shocking. And one of those things that just makes you realize the effect of community and histories of oppression and the impact they have on public health. For me, one of the things that stood out about Joel's interview was his observation that there is no such thing as a normal genome, right? Because we do use the language of normality and abnormality in connection to genetics. And Joel encourages us to think about the very notion of a normal genome as an idealization. It's an idealization, first of all, just in the very general sense that it doesn't really exist. There is no such thing as a normal genome, but it's also an idealization in the sense that the data on the basis of which we talk about a normal genome is itself really biased. In the book I mentioned, The Postgenomic Condition by Jenny Reardon, Reardon makes the argument that most of the early research in genomics, especially in the 1990s and early two thousands was almost entirely on white genomes. So the picture that we got of what the genome look like, what was normal, what was typical, was really racially specific but without being presented as such. One of the consequences of that was that any genetic sequences that maybe were associated with nonwhite people suddenly looked pathological by comparison, because, oh this is a really a rare variation, but it's only rare relative to white genomes. Yeah. So talk about an idealization. It's literally like the whiteness of the genome is sort of built into it because of the whiteness of the data that went into producing things like the Human Genome Project.

Ellie: 53:23

And this reminds me of some of the stuff we discussed at the end of our Body Positivity and Fat Feminism episode, where we addressed the way that a lot of the metrics that the medical model uses as health indicators, such as Body Mass Index are based on the white body as norm and hence are really racially skewed.

David: 53:40

Right and it speaks to a larger racism that is inherent in the institution of medicine. And that goes well beyond what medical students are trained to look for. We're talking about the racialization of data, really, the data on the basis of which medical technologies, medical techniques, medical methods are produced.

Ellie: 54:01

Yeah, another thing that I took away from the interview was, you know, following Joel's discussion of value partitioning, and this idea that we tend to interpret genetic results as either positive or negative, when in fact many of them are indeterminate, relates to me, not only to this idea that we want to sort of pin down the truth, even when there isn't an objective truth there to be found, but also that we tend to want to explain away difference as something that is negative, right? Differentiation from the norm, we want to say, oh, well it must be a bad thing, as opposed to, oh, it's indeterminate or maybe it's even neutral, right? There are tons of differences. As Joel discussed that are neutral. They're only considered disabilities in our society because of the way that our society is

David: 54:47

structured. Yeah, and I take it that part of the power of Joel's argument is that that partitioning of value into positive and negative is actually extraneous to the data. It's super imposed on it from without. Jenny Reardon explains this using a concept that I find very useful, which is what she calls data smog. She says, when you're looking through a genetic test, you have a very, very long sequence of nucleotides. And that means that you have a ton of ton of ton of data, but you don't have really any meaning, because in order for data to be transformed into meaning, you have to pass judgment on it, you have to classify it, you have to organize it. And that she says is where the politics kicks in, in trying to make sense data that we don't yet know how to make sense of and of which we have so much that we almost can't see through the data. That's why she uses the image of smog. There are so many particulates in the air that we just can't see where we're going. And she connects us to the philosopher Hannah Arendt's claim that, in the 20th century, technology began progressing at such a fast speed that it started moving faster than we could think it. Technology was exceeding our ability to understand what it was doing and still it was guiding action. That's exactly what we see in the realm of genetics and genomics today.

Ellie: 56:11

Well, on that note, I'm going to take off and get back into the LA traffic, which is not moving a particularly breakneck speed, but that is creating smog that may affect my lifespan.

David: 56:22

Well, we do know that your living location is your biggest determinant of health. We hope you enjoyed today's episode. Rate and review us on Apple podcasts, Spotify, or wherever you listen to your podcasts.

Ellie: 56:35

You can find us at overthinkpodcast.com, where you can email us with questions, feedback, or even requests for life advice.

David: 56:42

You can also find us on Instagram and Twitter at @overthink_pod. We want to thank our audio editor, Ross Harris, and our production assistants, Sam Hernandez and Lokyi Ho.

Ellie: 56:52

Thanks to Samuel P.K. Smith for the original music and Trevor Ames for our logo. Thanks so much for joining us.