Transcript

Episode 14: Medical Genetics & Eugenics: Two Sides of the Same Coin

 

KEY TOPICS

  • Reading from The Science of Human Perfection: How Genes Became the Heart of American Medicine by Nathaniel Comfort, PhD

  • How should clinicians and prospective parents think about the argument that there is no bright line between genetic interventions to relieve suffering v. human engineering or population improvement?

  • What are the contingent problems created between distinguishing between genetic interventions for a fatal disease v. a non-fatal disease?

  • How did the end of World War II and the dropping of the atomic bombs rejuvenate Americans' interest in science and genetic disease? 

  • How do we talk about genetics today in a way that embraces the actual complexity of the science?

  • In the current moment of sea change, what is the cultural authority of science in the United States today?

  • Discussion of Dr. Comfort’s new biography of James Watson, his enormous contributions to the field of human genetics and also his downfall.

RESOURCES 

GUEST BIO

Dr. Nathaniel Comfort is  the author of The Science of Human Perfection: How Genes Became the Heart of American Medicine and a professor of the history of medicine at the Johns Hopkins University, and visiting professor at the Center for Science, Technology, Medicine, and Society at the University of California at Berkeley. He was previously on the faculty of the George Washington University, where he served as the Deputy Director of the Center for History of Recent Science. Professor Comfort's writing has appeared in The Nation, The Atlantic, the New York Times Book Review, National Public Radio, Nature, and a number of other publications. Today, we will be talking about Professor Comfort's book, The Science of Human Perfection: How Genes Became the Heart of American Medicine. 

TRANSCRIPT 

Susanna Smith

Hi everyone, this is Genetic Frontiers, a podcast about the promise, power, and perils of genetic information. 

Find us wherever podcasts are found and go to GeneticFrontiers.org to join the conversation about how genetic discoveries are propelling new, personalized medical treatments but also posing ethical dilemmas and emotional quandaries.  I’m your host, Susanna Smith.

On today's episode, I will be talking with Dr. Nathaniel Comfort, who is a professor of the history of medicine at the Johns Hopkins University, and visiting professor at the Center for Science, Technology, Medicine, and Society at the University of California at Berkeley.

He was previously on the faculty of the George Washington University, where he served as the Deputy Director of the Center for History of Recent Science. Professor Comfort's writing has appeared in The Nation, The Atlantic, the New York Times Book Review, National Public Radio, Nature, and a number of other publications. Today, we will be talking about Professor Comfort's book, The Science of Human Perfection: How Genes Became the Heart of American Medicine. Professor Comfort, thank you for joining me today on Genetic Frontiers. 

Nathaniel Comfort

It's good to be here, thank you for having me.

Susanna Smith

So we're going to start today by having you read an excerpt from The Science of Human Perfection. Please go ahead.

Nathaniel Comfort

“THIS IS A HISTORY OF PROMISES. Scientists, physicians, and reporters tell us that DNA science will enable us to live longer and to know when we will die. We will predict the diseases we will get and forestall them with drugs or lifestyle changes. Medicine will become “personalized”: our doctor will know us literally outside and in, and so will be able to tailor medical care to our individual needs. We will know whether we are idiosyncratically sensitive or insensitive to a drug and whether that drug will be beneficial, inert, or toxic to us. Medicine will become a predictive, preventive science. We will simultaneously receive better care and have more control over and autonomy in our healthcare decisions. Ultimately, we will be able to engineer ourselves to eliminate disease, disability, and weakness, and we will guide our own evolution. 

Although these promises have a glossy contemporary shine, they are recycled. Medicine has been going genetic—and genetics going medical—for more than a century. The claims and promises of genetic medicine predate DNA, they predate the mapping of human genes to chromosomes, even predate genes themselves. 

Medical genetics—or, more broadly, medical heredity—has always stemmed from two impulses: toward the relief of suffering and toward human improvement. The first is compassionate, medical, individualized; to oppose it is misanthropic. The second is more complex. In the abstract, human improvement may be a laudatory goal, but hereditary human improvement denotes changing the nature of the population. It carries suggestions of human engineering, and of the objectification of the engineered. It is fashionable but disingenuous these days to assert that the relief of individual suffering is noble and population improvement insidious. Both are in fact both. Relief of suffering is humanitarian but raises issues of paternalism and autonomy. Deliberate efforts at human improvement may have the population's best interests at heart, but willy-nilly they involve social control.

The history of medical genetics is usually related as part of the larger history of human genetics. Over the years, a master narrative of human genetics has crystallized, in which the study of human heredity evolves from a focus on human improvement to one on relief of suffering. This narrative allows one to acknowledge the distasteful origins of human genetics in eugenics—often defined in the words of the Progressive-era geneticist Charles Davenport as “the science of human improvement through better breeding”—while at the same time, distancing oneself from that uncomfortable story.

Eugenics is treated as exceptional, a scientific/social/political movement bound in time, an unfortunate phase in the history of human genetics. There remains in much of the scholarly discussion a sense that eugenics is a contaminant of good, honest biomedicine. 

In contrast, in The Science of Human Perfection, I treat human improvement and the relief of suffering as the two goals of all eugenics—and all medical genetics. I am interested less in the eugenics movement, which is historically situated in the Progressive era and interwar period, than in the eugenic impulse, which is timeless. It is the urge toward selection of the best offspring possible, toward the elimination of hereditary disease, and toward human engineering.

Another reading of this story, then, is as a case study in the history of biomedicine, with the tensions, negotiations, and alliances between the competing styles and interests of the scientist and the clinician. The hybridization of science and medicine, of course, is one of the defining characteristics of twentieth-century healthcare. 

This reading of American medical genetics has two subversive effects, two sides of the same coin. First, by tracing the medical thread through early human genetics, I reveal that period to be less confused and malicious than it has often seemed. Early human genetics was not merely sloppy science and racist dogma. Much of the medical side of early human genetics was aimed at the same basic goals as genetic medicine today, and even at many of the same targets of health, personality, intellect, and so on.

Obversely, contemporary genetic medicine emerges as being less benign than the public relations campaigns would have us believe. The desire to relieve suffering and to improve ourselves genetically is noble but freighted with social and ethical consequences. The promises of genetic medicine are the promises of eugenics. 

The genetic approach toward health has enormous power to reduce suffering and improve our lives. But it is more than an altruistic endeavor: it is also a fascinating set of puzzles, a powerful political tool, and big business. Historicizing the promises of genetic medicine allows us to critically explore the interplay among all of these various forces, economic, political, intellectual, and humanitarian impulses driving genetic medicine. As biomedicine and healthcare become increasingly important in daily life, a healthy skepticism becomes literally vital. It can help us benefit from the powerful new knowledge biomedicine daily produces. But in order to reap those benefits as patients and consumers, we must use that knowledge intelligently—lest other interests trump our own.”

Susanna Smith

Thank you for sharing some of your work with our listeners.

Susanna Smith

I want to start with this big and loaded premise that you offer, which is that biomedicine and eugenics are inextricably intertwined. And you argue that it's a false distinction to try and draw a line between the relief of suffering and ideas about human engineering or population improvement. How do you think clinicians should digest that? Or prospective parents, for example, who might be thinking about doing genetic testing in pregnancy or in IVF?

Nathaniel Comfort 

So I wouldn't say it was a false distinction so much as two sides of the same coin. You can't steal the face off a quarter. The backside has got to come with it. So what I'm trying to say here is that in modern biomedicine, the noble, compassionate goal of relieving suffering has a backside. Eugenics was born in the second half of the nineteenth  century about three decades after physicians and physiologists invented the concept of biological heredity.

Before that it was heredity and inheritance were what you received when your parents died, right? Property. A legal concept.

Francis Galton, the English naturalist and statistician came up with the idea of eugenics as an alternative to social Darwinism, the rather heartless idea that the weak, sick, and old should just be allowed to die and let the fittest members of society, whatever you define as “fit,” survive and reproduce. And Galton thought naively, perhaps, but this was his stated intent, he thought, how much kinder it would be if you could just stop the weak and sickly from being born in the first place. We entertain a similar idea today with prenatal genome screening and genetic diagnosis. I don't see an inherent problem with that. I see lots of contingent problems, depending on the context and the intent, right?

So the big difference, of course, between then and today is that Galton thought that he could prescribe for British society as a whole. Today, most of us believe that such decisions should be made by the parents and their doctor or a genetic counselor. But doing so, it's easy to forget that decisions about individuals affect the population as a whole. Consider Tay-Sachs, a simple genetic disorder that leads to a short life of indescribable suffering. Children born with it die a miserable death by the age of 5. In the 1980s, a rabbi named Josef Ekstein organized a registry for his congregation in which young couples wanting to get married could get tested for the presence of the Tay-Sachs allele. It's inherited as a simple Mendelian recessive. The community embraced the idea. The community, his congregation embraced the idea because they didn't want individuals, parents, siblings, and especially babies to suffer. So they bought into what, by many straightforward definitions, is eugenics. There are now Dor Yeshorim chapters worldwide, and they screen for a whole lot more than Tay-Sachs. They have a whole panel of genetic diseases that they screen for, not all of which are fatal. So that kind of changes the stakes here, I think.

But they are changing population gene frequencies, deliberately and consensually. It's not for me to say whether they should or should not. I don't need to weigh in on that. My goal is simply to show how complex these notions are when you start dealing with complex human traits and the extent to which they are inherited, or learned, or developed over time. I want to have people not fool themselves into thinking there's a simple, bright line between eugenics and legitimate medical genetics.

Susanna Smith 

Yeah. I think… I mean, the Tay-Sachs example is a good one, I think, because socially, I think we've come to a place, mostly, there's some consensus that screening Tay-Sachs out of the population is acceptable. And then it becomes this slippery slope, right? What are we allowed to screen for, and what are we not allowed to screen for? And I think you described, sort of,  screening in pregnancy or in IVF and contingent problems that can be created. Could you say more about what you see as the contingent problems and the line you sort of drew between a disease that might be fatal and one that isn't?

Nathaniel Comfort

Right, yes. For example, I said that they expanded the screening panel that they use, and one of the diseases that's been included is Gaucher's disease, which is a very, very different kind of genetic disease than Tay-Sachs. First of all, it's not fatal. The degree to which it's expressed is highly variable. It can be severe or mild, and it doesn't always express itself at all. People may have the Gaucher's disease allele, that form of the gene, the mutation but never show any symptoms at all. So that makes a universal screening program, you know, considerably more ethically freighted, I think.

Susanna Smith

Yeah, and I think to your other point about when people are making personal decisions for their family, or within a couple, or a person with their healthcare provider, they view it as, sort of, about their particular family. And yet, on the whole, as we make these decisions, they become population decisions, especially if there's any cohesion around what those decisions are.

Nathaniel Comfort

Exactly. And, you know, many people would say, well, that's not eugenics then. And those are people who define eugenics as state control over reproduction, which is not historically wrong, but reproductive technology, changing social norms and values and new technologies and so forth have really changed the equation for us, and new kinds of situations now present themselves that make it much more complicated.

Susanna Smith

Yeah, I agree with that. I think we've drawn a lot of boxes around what we define as eugenics to make us feel that it doesn't continue to exist.  In reading your book, one of the things you talk about is that we put it in a historical box, that we talk about eugenics in strictly historical terms as a misguided pseudoscience that was rejected after the Holocaust. And this is, in fact, how I learned about eugenics in a history of medicine class. But a number of scholars have shown since that time that eugenic thinking has lived on in science and medicine, and is in fact foundational to the formation of new fields, for example, genetic counseling.

And in your book, you actually argue that at the end of World War II, after the atomic bombs were dropped, it actually rejuvenated Americans' interest in science and brought new urgency to concerns about genetic disease. Can you talk about that take on it?

Nathaniel Comfort

In the 1930s, medical genetics was gathering steam as physicians began to identify mutations linked to a number of birth defects, eye diseases, and cancers, especially 1945, after Hiroshima and Nagasaki. Some of those geneticists joined the Atomic Bomb Casualty Commission to study the effects of the nuclear blasts on people, survivors of the blast so Japanese people living in and around the blast areas. This project started a big debate among physicians, geneticists, and others over radiation, mutation, disease. The 1946 Nobel Prize in Medicine was given to Hermann Joseph Muller, the scientist who first documented that radiation causes mutations, and those mutations are almost always harmful to us. Two years later, he was elected president of a new scientific society, the American Society of Human Genetics. It's been the flagship society of human genetics ever since. Muller was brilliant, a pioneering geneticist, and he was a lifelong eugenicist. In 1947, another founder of the ASHG, Sheldon Reed in Minnesota, coined the term “genetic counseling,” to describe the genetic advice that he was already giving to parents because eugenics was starting to make people uneasy.

So this doesn't make medical genetics and genetic counseling evil. I want to make clear that I'm not dismissing those fields because I quarrel with the language. It doesn't make modern genetics evil; it makes eugenics complicated. And I liken the packaging of eugenics as misguided pseudoscience of the past to putting a tiger on display in a cage. People stare, taunt, poke at it with sticks, they go, look at the dangerous tiger because they know that the tiger is safely locked in the cage and can't hurt them. I'm trying to open the cage, take away that feeling of safety.

If we study tigers, and who shouldn't, tigers are beautiful, right? They're fascinating, they're interesting. But if we're going to study them, I think we need to be aware not only of their beauty but also of the fact that they can be dangerous. And let that permeate our understanding of what genetics is, and eugenics is.

Susanna Smith

I love that analogy. And yes, I very much agree with you. I mean, it's a big impetus for why we're doing this season and why we're focusing on this topic because eugenic thinking is woven into the culture of, sort of, the American culture, and to many different fields, including medicine, but also other fields we discuss in the season, like, technology and our approach to AI, so…

Nathaniel Comfort 

Yes, absolutely. I would say that we try to make ourselves comfortable by making eugenics this remote, distant thing, and yes, eugenic thinking is embedded in everything we talk about in relation to health and personality and a lot of things related to culture. And I think then it becomes risky to have an overly simplistic notion of what we mean by eugenics and genetics.

Susanna Smith

Yeah, that actually brings me to the next question beautifully, which is that one of the things that struck me when I was reading your book was sort of this cultural idea of pursuing perfection in human genetics specifically, and how that idea when it was formed,

the science that we understood about how genetics worked, we had a really rudimentary understanding of the science of genetics. And because it was largely focused on Mendelian traits, it sort of sets up this false dichotomy that there is a choice between a bad gene and a good gene, or what is better or more perfect and what is worse except that isn't actually how the human genome works, and the human genome is way more complex than that.

So it seems to me like we've retained some of these ideas about pursuing perfection as a simple or binary choice. How do we talk about genetics today in a way that embraces the actual complexity of the science, of diversity, plurality, and just rejects overly simplistic concepts.

Nathaniel Comfort
The simple binary of good versus bad, perfect versus flawed, right and wrong, is a very dangerous and wrong-handed idea. So it's heartwarming to me to hear, to hear you say this. Galton didn't think that way, the Victorian coiner of eugenics. He didn't think that way, but after 1900 with the rediscovery of Mendel's work and the invention of Mendelian genetics, this binary became the basis of the science of heredity. Mendel's experiments with peas only worked because he took care beforehand to purify, term he used, his strains of pea plants so that each strain bred true for one specific trait. So he had to manipulate the genetics, the genomes of the plants, and make sure that they were consistent, regularized, standardized.

The stunning achievements of molecular biology in the second half of the century were based on the idea that the chromosome was a long string of genes, and that genes were long strings of DNA that coded for proteins, a very simple, linear story. Now, that's more or less true for bacteria but in the last thirty years or so, it's become clear that when you come to aardvarks, roses, and zebras, you're dealing with much more complex systems that are nonlinear. They're dynamic; they're interactive. The simple one-to-one relationship of gene to protein to trait is a special case, and relatively rare in biology. 

A single gene might make many different proteins, one protein might require many different genes. Most of the human genome isn't genes at all. Much of what used to be called junk DNA seems to have a lot of different complex roles in the nucleus to regulating the action of the genes and the function. And then after the genes are read out at each stage, after the genes are read out, and even after the proteins, that the genes specify, are synthesized the message that comes out the other end is different than what's just straightforwardly coded on the DNA. I'm just trying to point to some of the variables in this really complex, dynamic system that we call life. These newer approaches of thinking about heredity and genes and DNA is leading to a new understanding of chromosomes and genomes as infinitely subtle, infinitely flexible, environmentally responsive. Remarkably, the geneticist Barbara McClintock saw this fact as early as 1981, years before the Human Genome Project was even a glimmer in James Watson's eye. McClintock called the genome a sensitive organ of the cell. That's a very different idea than, you know, Francis Crick's idea of the messenger RNA being read off of the chromosomes and then going out to ribosomes where it's read like a bit of magnetic tape, and the music it plays is a new protein, right?

Susanna Smith

Yeah, I mean, I think that's very prescient of her to realize that's what was happening, and it is… I mean, from everything we know of the science now, and…I think we have to have the humility to understand there's many, many things we don't understand yet, but our DNA is in constant conversation with our body, our internal and external environments. It's… it adapts.

Nathaniel Comfort

Exactly, yes.

Susanna Smith

So, we're living in a moment when the federal government is pulling back on long-standing investments in scientific and medical research institutions like the CDC and the NIH. At the same time, the current administration is deploying ideas about genetic determinism and fitness to explain everything from immigration policy to plane crashes. How are you thinking about this moment of sea change and how we view the cultural authority of science in the United States today?

Nathaniel Comfort

That's a great question. Scientists right now are caught between a rock and a soft place. The soft place is the decades of immense scientific prestige that science has enjoyed since the end of World War II, has been highly supported. There's been loads of funding for curiosity-driven research that came through a lot of remarkable insights into genetics and its relationship to biology. But as a consequence, many scientists, I think, became arrogant about science as the only valid way to understand the world. And I sometimes take heat from scientists who don't like it when I point out that it's not. There are other equally valid ways, more important in certain contexts, that are just as comprehensive and internally consistent as a scientific worldview. So, that's the… the soft place. 

The rock is the critics and the acts that you… that you just mentioned. This profoundly anti-science, retrogressive, you know, attitude towards science with the weird eugenic overtones, that also go with it. When it comes to that, I'm absolutely on the side of the scientists. When it comes to anti-intellectual attacks that have gained so much force in recent years, the rejection of expertise, of facts, of evidence, and these attacks come from both the right and the left. So, it depends on who I'm talking to, you know, which way… which side I fall on on that as far as critique and support. I hope everything I do is constructive in the long run, but sometimes the critique comes out, and…And that's why it depends on which way I'm facing.


Susanna Smith

Yeah, I think that makes sense, and I think, you know, remains to be seen what this… where this trajectory will take us, I think, in our relationship with science, scientific findings, and the… one of the things I'm concerned about is trust. And how much people will or won't continue to trust the findings of scientific research and medical work.

Nathaniel Comfort 

Yeah, and I'm… I'm absolutely with you on that. I was just at a meeting at the Asilomar Conference Center here in California last week, and trust, rebuilding trust, holding on to trust, being trustworthy and what that means, was a big topic of conversation. So I think… I think you're not alone. I think that there's a lot of conversation about things like trust in science, and I think there are a lot of scientists who are taking a step back from that arrogance of the, you know, 1950s and 60s. And realizing that, no, your relationship with the public is something that has to be maintained, you know, constantly.

Susanna Smith 

Yeah, I agree with that.

Susanna Smith 

So, you're working on a book now about James Watson, and his enormous contributions to the field of human genetics and also his downfall. Can you talk a little bit about that work?

Nathaniel Comfort

I'd be delighted to talk about that work. So I'm writing the first biography of James Watson by a historian. This is the Watson of Watson and Crick, the Watson of the DNA double helix, the Watson of the runaway bestseller, The Double Helix, 1968 a sort of comedy farce memoir, and the Watson of the Human Genome Project, who was the first director of the NIH Human Genome Project. This is also the first biography of Watson of any kind in 25 years, so it's thus the first biography to treat his disgrace and downfall over comments he made about race and IQ in 2007 and 2019. Among many scientists today who I talk to grad students and postdocs, young faculty, Watson is better known as a racist than for DNA. So this book actually brings together a number of the themes that we've been talking about today.

As you rightly say, his contributions to 20th century biology and biomedicine are huge. He was the most powerful, influential scientist of the second half of the 20th century. He got there by being enormously talented in almost everything he set his mind to, from the abstruse technicalities of X-ray crystallography, to molecular genetics and biochemistry, to authorship, to fundraising and management. And he got there by championing DNA as the secret of life, the ultimate blueprint of who we are as a species and as individuals, and then he tanked his career by making racist comments about genes and IQ.

So, in short, Watson became a genetic determinist, a term which I use a little bit loosely, [to mean] one who believes that genes are the overriding first cause in making us who we are. As we've been discussing this afternoon, that way of framing the role of the gene is now seen as simplistic, inaccurate, and pretty obsolete. DNA isn't the master molecule. It's one component of a vastly complex system that we call life. Ultimately, genetic determinism clouded Watson's judgment, leading him to accept, uncritically, a bunch of discredited, biased studies claiming to show innate racial differences in IQ.

Historically, it's easy to show that both race and intelligence are not eternal natural categories, they're rather socially constructed. Watson could not let go of the idea that race and intelligence were firmly defined, well-bounded scientific concepts that were amenable to experimentation and testing. He just couldn't let that go even though he launched the Human Genome Project, which was a major step in developing this new understanding of how genes work in the cell. When he was criticized for his views, he only dug in deeper. He failed to see how much the times had changed, he failed to adapt to new ideas and new social norms. He ended up disgraced, fired, and ultimately banned by the institution he created, Cold Spring Harbor Laboratory. So professionally, Watson rose by the gene and fell by the gene. And I see it as a deeply tragic story, in the kind of classical sense of a tragedy. I'm calling the book American Icarus. 

Susanna Smith

Can't wait to read it! Thank you, Professor Comfort, for joining me today on Genetic Frontiers. 

Nathaniel Comfort

It's been a real pleasure. I've enjoyed the conversation. Thank you.

Susanna Smith

For anyone listening who would like to learn more about Professor Comfort's work, please go to his website, nathanielcomfort.com, which is linked to in our show notes.

Susanna Smith

Genetic Frontiers is co-produced by Brandy Mello and by me: Susanna Smith. Music is by Edward Giordano and design by Abhinav Chauhan and Julie Weinstein. Thank you for listening to this episode of Genetic Frontiers connect with us at geneticfrontiers.org or on Instagram and Linkedin at Genetic Frontiers, to continue the conversation.