Transcript
Episode 6: The Eugenesis of Genetic Counseling
KEY TOPICS
Introduction to the Professor Alexandra Minna Stern and background on the genetic counseling profession and the eugenics movement [0:00 - 04:05]
Reading of excerpt from Telling Genes the Story of Genetic Counseling in America [04:05-11:01]
Why did you choose to tell this history of genetic counseling? And how did you reconstruct it? [11:02-12:55]
Can you describe what you call the eugenesis of the genetic counseling profession, and how you think it influences the practice of medicine and genetics today? [13:56 - 19:50]
How prevalent were eugenics views among the genetics profession as a whole? How did eugenics affect research priorities or funding? [19:51 - 25.03]
How would you describe overall the relationship of the genetic counseling profession to race historically and in current day practice, given that the genetic counseling profession today is overwhelmingly white? [25:03- 29:39]
Can you talk a little bit about the work you do in the lab around forced sterilizations? And also your research into this topic? [29:39- 35:21]
What types of people were targeted with forced sterilization? Where were they performed? [35:22 - 43:08]
Historically, how have you seen genetic counselors or geneticists contribute to this reductionist thinking about people living with genetic difference? And on the flip side, how have some medical professionals worked to expand the profession's approach to genetic difference in disability? [43:08-54:12]
Wrap up [54:15-56:40]
Interview
[0:00 - 04:05]
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. Alexandra Mina Stern, the Humanities Dean and Professor of English and History at UCLA, where she also works out of the Institute for Society and Genetics.
Professor Stern founded and co-directs the Sterilization and Social Justice Lab where she leads a team that is analyzing and reconstructing the history of eugenics and sterilization. in five U.S. states. Professor Stern has also written a number of books including most recently Proud Boys and the White Ethno State. But today we will be talking about one of Dr. Stern's earlier books called Telling Genes the Story of Genetic Counseling in America. The book traces the history of genetic counseling in the United States and discusses how the profession lives in the long shadow cast by its entanglement with the eugenics movement. The pseudoscience of eugenics is grounded in discriminatory and racist views and aims to “improve the human race” by controlling who can and cannot have children.
In the early to mid-twentieth century many prominent U.S. geneticists espoused eugenic views and most states in the U.S. had laws on the books to enforce aspects of the eugenics agenda including the forced sterilization of people who were considered “unfit,” a term applied liberally and often deployed against poor people, people of color, and people with disabilities. Many of them were women. After Nazi Germany used eugenics as its rationale for the Holocaust, many scientists backpedaled their support at least publicly. The U.S. scientific community no longer favored professionals who publicly shared overtly eugenic views although those views had once been deemed acceptable.
Genetic counseling as we know it today, really started as a profession in the late 1960s, which was a moment in American history marked by social upheaval and change, championed by activists in the civil rights, disability rights, and women's rights movements as well as others.
In the field of genetics, a few enterprising and visionary women started the first master's degree programs in genetic counseling in the late 1960s and early 1970s in places like Sarah Lawrence, Rutgers, and the University of California at Berkeley. These programs trained young women largely to become genetic counselors, a domain that had previously been handled by academic geneticists who were PhDs or MDs and mostly men. But the women who started these new training programs in genetic counseling faced pushback about whether two years of training was sufficient as well as sexism. Many of the early genetic counselors coming out of these new programs seem to align well with aspects of the progressive agenda. For example, they largely supported women's rights to choose to terminate a pregnancy following the passage of Roe v. Wade. But stereotypes about race and disability continue to pervade the field even through the 2000s. Some would argue they continue today and the profession has only recently begun to grapple with its dark history.
Over the next couple of episodes, we will be diving deeper into the topics of disability, rights and genetic difference as well as race, personalized medicine, and genetic research. Today's episode sets the stage by offering important historical context for what lies behind some of the present day challenges facing the fields of genetics and genomics.
Thank you for joining me today on Genetic Frontiers. Professor Stern.
Alexandra Minna Stern: Thank you. It's a pleasure to be here.
[04:05-11:01]
Susanna Smith: We're going to start today by having you read a short excerpt from the introduction to your book Telling Genes the Story of Genetic Counseling in America. A note for our listeners: some of the data in this excerpt has been updated from the originally published version in 2012. Professor Stern, please take it away.
Alexandra Minna Stern:: Thank you.
For more than 70 years genetic counselors have served as the messengers of important information about the risks, realities, and perceptions of genetic conditions. Ideally genetic counselors reliably translate test results and technical language for a diverse clientele aiding them with equal doses of scientific acumen and human empathy to make decisions about their options. Genetic counselors can help to ensure that bioethical principles, such as patient autonomy and informed consent, are followed in clinical genetics as they are in other clinical specialties. These unique healthcare professionals play a role in educating physicians, scientific researchers, and the lay public about the role of genetics in rare diseases and increasingly in common and chronic conditions.
As of 2023, there are more than 6,000 certified genetic counselors in the United States working in settings that range from county clinics, community and teaching hospitals, public health departments, and private biotech companies, as well as academic medicine. Today, most genetic counselors are board-certified and have graduated from two-year master's programs that require courses in genetics and psychology as well as clinical and research field placements. Most certified genetic counselors believe strongly that such potentially life-altering information ought to be communicated in a setting of client-centered care, which has become a central tenant of board-certified, genetic counseling. Many other healthcare professionals, including nurses, social workers, and physicians from myriad specialties also communicate genetic risk, information or test results, and often seek to incorporate genetic counseling's core principles into their approaches.
How did the field of genetic counseling evolve? How have genetic counselors influenced and been influenced by developments in science, medicine, technology, and society? How has genetic counseling helped to frame understandings and experiences of genomic medicine in modern America? Where does genetic counseling fit on the biomedical landscape and as a helping profession with a particular brand of psychological and clinical training? What distinguishes interactions between genetic counselors and patients or clients? And how have these interactions changed over time? I explore these questions in Telling Genes by placing contemporary genetic counseling in its historical context and considering its role in the twenty-first century. I trace the origins of genetic counseling to the eugenics movement of the early 1900s and examine the field's emergence as an integral component of medical genetics in the mid-century and describe the convergence of scientific and social factors in the 1960s and 1970s, which gave birth to the genetic counselor as we know her and, to a lesser extent, him today.
Over the past seven decades, genetic counseling has changed dramatically from giving advice, aimed largely at influencing the genetic composition of the entire living population and future generations. Genetic counselors now focus on the immediate and longer term welfare of the individual and on her or his family. This transition did not occur in clear-cut chapters, labeled before and after but rather evolved in a protracted and uneven process in which many pressing ethical issues related to reproduction, genetic stigma, and difference remain unresolved to a great extent. The lack of resolution is an inevitable byproduct of being a helping profession at the center of human genomics, a fast-moving area of scientific inquiry and research that generates new knowledge, technologies, and treatments related to diseases rare and common. These diseases come with profound social, ethical, legal, and personal ramifications.
In Telling Genes I demonstrate why history matters to contemporary genetic counseling practices, principals, and professionals. The field of genetic counseling carries burdensome historical baggage that imposes limitations and can unwittingly hinder the field and its practitioners. To begin with according to a 2023 professional survey, 93% of genetic counselors are female and 89% are classified as white. Clearly, members of the profession do not represent the racial, ethnic, and gender makeup of their clients and society at large, which raises serious questions about the ability of genetic counselors. No matter how well-trained or intentioned to reach and communicate effectively with clients from differing social and cultural backgrounds. Furthermore, when genetic counseling emerged in the 1940s many of its leading practitioners had no qualms about supporting the sterilization of people with developmental disabilities.
Until at least the 1980s many genetic counselors who strongly endorsed patient autonomy and informed consent nonetheless tended to present genetic conditions likely to produce a physical or mental disability as biological errors to be avoided for medical, psychological, or economic reasons. Twenty-first-century genetic counselors are worlds away from the eugenicists of yesteryear, and the recent generations of practitioners often have been at the forefront of introducing bioethical principles into the delivery of genetic services. Nevertheless, the profession has palpable links to the ugly side of hereditarian thinking, and these associations merit research and analysis. Uncovering the acknowledged and unacknowledged continuities between the eugenic past and genomic present can provide insight into the genesis of popular attitudes, both negative and positive, toward genetic counselors and, more broadly, can provide guideposts for health professionals seeking to address the potential or pressing moral dilemmas attached to genetic technologies.
Susanna Smith: Thank you for sharing a bit of your work with our listeners, Professor Stern, and for everyone listening right now, the entire book is well worth the read, and it gives a broad overview of the history of the profession.
[11:02-12:55]
Susanna Smith: One of the questions I wanted to ask you, Professor Stern, is why did you chose to tell this history? And how did you reconstruct it?
Alexandra Minna Stern: Thanks so much for that question. My first book focuses on the history of the eugenics movement with a focus on California, and seeks to reassess our understanding of the eugenics movement in the United States and beyond by looking at the West Coast and seeks to reconstruct the broader history by tracing that history from the late nineteenth century into about the 1950s.
And when I finished that book I had seen around the edges especially into the 1940s and 50s, and I became very intrigued and wanted to better understand the emergence of this field. I was doing a lot of this research in the 2000s so I began to delve into the genetic counseling profession. At the time I was at the University of Michigan, which has a wonderful genetic counseling program. One of the early perceptions that I had of the profession was that it was carrying a lot of baggage that came from the eugenics movement that practitioners weren't even necessarily that aware of. It wasn't clear when a master's student starts the program they're not going to know that history yet. That history was hampering, and I think still hampers, the profession and its ability to change. And I really wanted to understand that broad sweep from the 1940s and genetic counseling's entanglement with eugenics, to its shifts into the 70s and 80s with the rise of biomedical ethics, and then to the early twenty-first century. As we know, genomics has become more commercialized. Tracing that longer arc for me became a very important question. And it's always been important for me to write books that are accessible to general educated audiences and medical practitioners, particularly around issues related to clinical genomics. So I wanted this book to be meaningful to genetic counselors and other genetic professionals.
[12:56 - 19:50]
Susanna Smith: So for people who haven't yet read your book could you talk a little bit about what you describe as the eugenesis of the genetic counseling profession, and how you think this influences the practice of medicine and genetics today?
Alexandra Minna Stern: Eugenics is at the core of the emergence of genetic counseling. And we can see that with the earliest practitioners, such as Sheldon Reed at University of Minnesota. He coined the term in 1947. He waffled between viewing genetic counseling as a kind of social work that was more neutral, let's say, and also having a direct eugenic purpose. Especially in those early years in the 1940s and 1950s, he really viewed genetic counseling as a way to encourage white middle class people to make rational and smart decisions about family making and having children and about their own reproduction. He met with them and talked with them about that. If you look back at the kind of advice he was giving, first of all it was very directive. So this helps us understand why the term non-directive becomes so important later on. It was directive and it was caught up in a bunch of biases related to race and disability, class, poverty, and so on.
It's important to note that at the same time that Sheldon Reed started seeing clients, and he has notebook upon notebook where he cataloged every single meeting with every client and what he advised them, he also was writing the second edition with his wife, who, by the way, I think, did a lot of the work on the book. She is a co-author but nonetheless she doesn't get that much credit in his bibliography. In any case, they were writing a second edition of a book that was the study of the Faribault Home for the quote — unquote Feeble-Minded in Minnesota.
The first edition of that book was basically a very expected eugenic track about degeneracy and unfit populations, and the need to sterilize people who were unfit. Sheldon Reed’s second edition somewhat modernized that book. It used the term—and again, I would still put these terms in quotes—“mental retardation.” It tried to incorporate environmental factors as playing more of a role. Ultimately, that book conveys the idea that people with disabilities should be sterilized because they were a burden on society for economic, biological, and other reasons. So he really doesn't sway that much from the original eugenic intent of the Faribault study.
I share that example because it's very interesting to see the kind of tension in this period, from the 1940s to the 1960s where, on the one hand, someone like Sheldon Reed has one foot firmly planted in the eugenics movement and its ideas of fitness and unfitness, which are freighted with stereotypes about class and race and disability. He has another foot in what we might call a more professionalizing domains that are more nuanced around psychology, genetics, and so on. Now he was not trained as a MD, human geneticist, as were some of the others who I study in the book. But he was so central to the field because he coined the term, and he ran his center at Minnesota for almost four decades in the end. And he circulated and helped build this network of what were at that time male MD, PhD genetic counselors, let’s call them, or genetic advisors.
Another example of the early entanglement of eugenics and genetic counseling we can see at Wake Forest University in North Carolina, which started one of the first medical genetics programs in the country. As some of your listeners might know, North Carolina had a very robust program of eugenic sterilization that focused on poor whites, and later in the twentieth century, increasingly on black women.
And I found in the records there is a real overlap between the goals of medical genetics, disease, identification and classification and support for North Carolina's eugenics movement. So, in other words, the leaders of the genetics program at Wake forest were actively involved in the county eugenics boards in North Carolina. They actually would do something today that we would find completely unethical. One of the ways in which they identified individuals, both to study them and potentially for eugenic sterilization was to go to large family reunions that were held in different counties throughout North Carolina where they would, actually I could imagine that in their mind they're reconstructing a pedigree chart in a family tree and trying to figure out how genetic conditions were ostensibly passed down this family line. So that's the kind of work that they did. And that's some of the ways in which we can see the entanglement.
Finally, there is the more kind of conceptual aspect of this where there's a hard determinism that underlies both the eugenics movement and a significant dimension of early human genetics where there are ideas about overwhelming genetic burden or genetic load even as the complexity of genetic inheritance increasingly is being understood across and into the second half of the twentieth century.
[19:51 - 25.03]
Susanna Smith: Could you give our listeners a little bit of context in terms of how prevalent were eugenics views among the genetics profession as a whole? And also talk a little bit about how eugenics underlined research priorities or funding that was given to some of the first genetics clinics in the United States?
Alexandra Minna Stern: Well, it's an interesting question. The first genetics clinics actually didn't have that much funding. They were based overwhelmingly at universities, and their study populations and their support came primarily from those institutions, and we think of Wake Forest, the University of Minnesota, the University of Michigan, and several others in terms of the role of eugenics. Many of the kind of early leaders like Dice at Michigan or Reed at Minnesota or Herndon at Wake Forest University. They kind of came of age while the eugenics movement was still quite popular. Now it was morphing over time. And this is an interesting shift that we see whereas the early eugenics movement, and by early here I mean like the 1910s and 1920s, was exceedingly and overtly racist, both in terms of anti-black racism and in terms of anti-immigrant racism, and really viewed race as a hundred percent as a biological category that should be controlled and contained and regulated, be it through reproduction or immigration control. The eugenicists / geneticists who helped found genetic counseling were kind of developing their professional identities at a time when that hardcore racism was being contested and was falling into disfavor. What they shifted into was more—let's call it—a more liberal, distributed understanding of genetic capacity and genetic fitness. In other words, they had a point of view where they viewed defects—let's call them—distributed more broadly across the population irregardless of race or class. Now, that doesn't mean they didn't have racial biases. They still were coming of age in the forties and fifties, and so on. What we do see, though, is that there is an intense focus on disability, on difference, and ideas of fitness.
So we can see some of these tensions and complexities in someone like Sheldon Reed. On the one hand, he was meeting with clients giving directive advice about reproduction based on his knowledge of genetic conditions and genetic difference. At the same time he was very involved in helping to found one of the first interracial organizations in Minneapolis that addressed issues related to civil rights and wanted to create a more inclusive society. And later on in his life he ended up really supporting the Hmong community in Minneapolis. As you know there were a good number of refugees from the war in Southeast Asia who ended up settling in the Minneapolis-St. Paul area. Some of them lived in his house. He was very open and wanted to support them. So to me he's kind of, in some ways, he's a man of contradictions. But it's not that much of a contradiction if you actually look at the way in which he balanced these different ideas, and how he was a product of kind of a new era of eugenic thinking, in which difference, disability, etc, was seen as kind of more liberally distributed across the population. That is the idea that is put forth by some of the eugenicists such as Frederick Osborn in the 1950s and 1960s. He knows that eugenics can't be what it was in 1920. So he even uses this term, kind of, liberal eugenic or reform eugenics, to promote a, kind of, what he views as a more capacious view.
Now you scratch the surface of that. And what you find beyond the overt ableism is a lot of bias related to race, class, poverty, and we could also say sexuality or ideas about normative sexuality or reproduction. So it's really, it's an interesting time of transition. As these genetic counselors, you know, the male kind of early founders of the field and coiners of the term come to play such a prominent role.
[25:03- 29:39]
Susanna Smith: Yeah, one of the things that came through for me very clearly from your work was the complexity and the nuance of this history and that even trying to read certain people in history is particularly racist or not supportive of disability rights. There was often more to it than that. It wasn't black and white. It's not a story about heroes and villains. It's often complex views rolled up into the same people who are leaders or were leaders in the field. I want to explore a little bit more with you particularly on the topic of race because for so many years the idea of race as biology pervaded the field of genetics. That view has since been debunked.
But you tell a really interesting story in your book about the involvement of genetic counselors in adoptions, and sort of identifying and sorting children by their perceived racial identity for placement in what family they should go to. So how would you describe overall the relationship of the genetic counseling profession to race historically and in current day practice, given that the genetic counseling profession today is overwhelmingly white?
Alexandra Minna Stern: So it's important to recognize that these kind of male MDs, Phds genetic counselors who helped create the field and shape it before it was reshaped, they played a key role from about the 1940s to the 1960s. They were products of the society in which they lived. This was an era of, you know, if we think of the 1940s in particular Jim Crow racism, a lot of racial segregation. It was the early stirrings of the civil rights movement. So that was the world in which they operated, and the lens through which they saw racial difference in society.
That can help explain, for example, these fascinating and disturbing records that I found at the University of Michigan, where the human geneticists there were contacted on a regular basis by aid societies, welfare societies, kind of foundling homes about the placement of babies for adoption. What they followed was basically a strict rule that white babies would be placed with white families and babies of color, primarily African American children would only be placed with African American families, or perhaps mixed race families but those were few and far in between. They used a scale that had been developed by a British eugenicist, Ruggles Gates. That was actually a color scale that went from palest white to darkest black. They would look at the baby, you know we're talking about a one-month, two-month-old baby. They would classify it based on the scale like this baby is, you know, between one and 9, a number six or a number two, and based on that determination, would give a recommendation about the race of the family in which the baby should be placed. So I cannot think of a more clear cut example where reproduction, you know, children and racial segregation come together under the aegis of medical advice. And this went on for about two decades.
Things again began to change in the 1960s and 1970s but they strictly followed these rules and these patterns during that time. And it's also interesting to think this was happening in Michigan, which was obviously a midwestern, northern State, in which there had been a great deal of migration of African Americans in the early twentieth century to factories and urban areas. It was a state where there was intense racial segregation, and a lot of that exploded in the 1960s. The example from Michigan is the one that was the most detailed and the most explicit in terms of actually channeling babies based on the color of their skin into particular families. If you look at early human geneticists overwhelmingly, all of them are white men. Although we know female scientists who play a critical role in the field of genetics, such as Rosalind Franklin, and others.
In any case, you have the biases and what we could call today white supremacy in biomedical practice. It's not surprising you find it in genetic counseling because you find it throughout the other aspects of medicine as well. I mean, I think it wasn't until 1949. Is that correct? That the American Medical Association actually admitted African Americans. So I mean, this is kind of shocking to think that it took this long. So they were a product of their time. But you know, anyway, I'll stop rambling on and wait for the next question.
Susanna Smith: Okay.
Susanna Smith: So a quick fact check for our listeners. The AMA did not remove all barriers to black physicians joining the organization until it was forced to do so by the Civil Rights Act of 1964.
[29:39- 35:21]
Susanna Smith: I want to turn now to a topic that actually cuts across issues, including racial discrimination and disability rights which is forced sterilization. And that's a topic you've done a ton of work around. Forced stabilizations were commonly used in the twentieth century to prevent people who are considered “unfit,” quote unquote, from having children. And there have also been cases brought more recently, for example, against the California prison system for forced sterilizations in the 2000s, and there is a movement for reparations. So can you talk a little bit about the work you do in the lab around forced sterilizations? And also your research into this topic?
Alexandra Minna Stern: Indeed, after I published my first book, which focuses on eugenics in the U.S. west and California. I had covered a lot of ground when it comes to understanding the history of eugenics, immigration, and IQ testing and its connection to the early environmental movement. I had looked at all of these different dimensions, and I had spent so much time in the archives uncovering all this early history, however, I was really frustrated because I knew that more than 20,000 people had been sterilized in California state institutions. But I really didn't know much about those people or the patterns because I wasn't able to find the records.
It turns out the records were still being held by the state agency that perpetrated these sterilizations in the first half of the twentieth century then called the California Department of State Hospitals. So in 2007 I went to Sacramento. I went into the agency itself and asked them if they had any records, and lo and behold they directed me to this file cabinet of microfilm reels. And ultimately I ended up finding 19 microfilm reels with over 50,000 individual documents, which really capture the history of eugenic sterilization in ten institutions from 1920 to 1950. And this was an amazing find. And it also was overwhelming because there was so much data and so much to reconstruct. And that is when I, with colleagues at the University of Michigan in public health, in epidemiology and statistics, and also in history and in ethnic studies, we came up with the idea of starting a lab and organizing this material in a much more systematic way. In the end, my team that I put together and now we still run the lab together.
We ended up digitizing and organizing all this data into a data set using a program called Red Cap, which is a HIPAA-compliant, data capture system. And with that we have been able to do, and we continue to do a lot of data analysis showing patterns of sterilization in California.
So, for example, we estimated the likely number of living sterilization survivors circa 2017 that helped inform a compensation bill that was passed in 2021 that sought to compensate what we've called the historic survivors of eugenic sterilization as well as, as you mentioned, the survivors of unauthorized sterilizations in state prisons, which occurred from 2006 to 2010. We also published a paper showing that Latinx patients / inmates were disproportionately sterilized, particularly young Latinas, which gives us a better understanding of the ways in which categories of disability and race targeted young Latinas. We have a range of other papers, and we continue to work on aspects of that. Our methods were successful enough, these mixed methods. And we were, the notoriety of the lab was growing and media attention, and we ended up expanding. So that now our lab includes five states: North Carolina, which is why I also know a great deal about North Carolina, Iowa, Michigan, and Utah. And so, in terms of our data set, we have approximately 35,000 sterilization records from five states, which constitute more than half of the 60,000 sterilizations that occurred under eugenic laws in state institutions. From the early 1900s to about the 1970s, it's been really exciting to work in the lab.
I really like the way in which we do mixed methods. We do the quantitative analysis as well as qualitative analysis, which involves using programs such as Nvivo to look at content as well as my main area, which is historical reconstruction, historical narrative, putting things in context, bringing in the culture, bringing in literature where relevant, bringing in other aspects of American society. So we can really understand the kind of multidimensionality and the reach of the eugenics movement and how it related to sterilization.
[35:22 - 43:08]
Susanna Smith: So can you talk a little bit more for people who aren't well versed in the history of forced sterilization. What types of people were targeted with these procedures? Where were they performed? And how late did it go because in reading some of the history and also some of the information out there, I was surprised by how recently forced sterilization was continuing to take place.
Alexandra Minna Stern: So forced sterilization is one aspect of the eugenics movement that falls broadly into the bucket of what scholars have called negative eugenics. Negative eugenics were policies that were carried out to, in the minds of eugenicists, control the reproduction of the unfit, impede the reproduction, so that included forced sterilization, it could include immigration control. And it was taken to its most horrendous conclusion with the final solution in Nazi, Germany where we're talking about mass euthanasia. So negative eugenics is obviously quite ugly and severe, and that is one side of what of the eugenics movement
The other side or bucket would we could call positive eugenics, and this included policies that were aimed at encouraging the, quote unquote, “fit” to reproduce more so, for example, better babies contests, fitter family contests, incentives for white middle class families to have more children that fit under the banner of positive and negative eugenics. Eugenicists supported all of them because they wanted to remake society often in their own image.
What did that image look like? And I think that's a really great question. So if you look at the early twentieth century and the rise of the eugenics movement. It is championed by a kind of new generation of reformers, who want to use science and the latest developments in science to solve what they see as social problems. Social problems spawned by immigration, by urbanization, by industrialization, by expanding cities and by changes, you know, broadly speaking in western societies. They seize upon ideas of really controlling the makeup of society and controlling what they would say. The stock of the society through eugenic measures. So eugenicists became very enamored of the idea that there were certain members of society who should not be allowed to reproduce for their own benefit and for the benefit of protecting and improving society. Based on that eugenicists supported marriage laws so there were marriage laws that were very racist like anti-miscegenation laws that they supported. For example, the 1924 anti-miscegenation law was called the Racial Integrity Act that was passed in Virginia. That law was actually passed the same year that Virginia passed its sterilization law. And that sterilization law is the one that was upheld by the U.S. Supreme Court in 1927 in the infamous Buck v. Bell case. So there were marriage laws that prohibited marriage between races. There were marriage laws that prohibited marriages or unions between people deemed normal, and people deemed feeble-minded. Many listeners probably don't even know laws like that were ever on the books. They were very hard to enforce but they represent kind of the intent of eugenicists. Then most apropos to this conversation, there were sterilization laws and sterilization laws were passed in 32 states between 1907 and 1937. The first state to pass such a law was Indiana in 1907, and the last was Georgia in 1937. Under those laws over 60,000 people were sterilized. Most of them were patients or inmates in state institutions where medical superintendents had the power to sterilize people based on state laws. There also were several states where sterilizations took place based on the determinations of county boards. and that was the case in North Carolina, where, especially in the beginning of the program, the vast majority of sterilizations occurred based on recommendations. From these every county had a eugenics board, and they would gather information about the county populace and then decide who should be targeted for sterilization.
If we look at who was targeted, it is very interesting to look at the sterilization laws passed in these 32 States, almost every single one of them, the primary category of people to be identified for sterilization are those who would be classified as quote unquote, “feeble-minded.” And “feeble-minded” to them meant someone who was not performing up to educational or intellectual capacity, often determined through an IQ test, such as the Stanford Binet test, there were a whole range of different mental tests that they used to determine someone's IQ. So for example, in California if a patient at a state hospital scored 80 or less on one of these IQ tests they would be targeted for sterilization because they would then be placed in the category of “feeble-minded,” “moron,” “idiot,” and so on. And these categories were scientific categories that were used by eugenicists at the time. Now, if we look at who was more likely to be classified as “feeble-minded” overwhelmingly, it was poor people, it was people of color, it was immigrants. And it was young men and women who were not behaving according to society's norms. For men, this could mean that they were having sex with other men. So the category of “sodomite” is one that you find quite often in the early decades of the eugenic sterilization ledgers as well as young girls who were seen as promiscuous because they were having flings with neighborhood boys or they had a child out of wedlock, and so on. The biases are multiple and overlaid.
And as I mentioned before our lab has shown that young Latinas were disproportionately sterilized. In fact, they were 59% more likely to be sterilized than non-Latinas in California state institutions from 1920 to 1945. And that is because you have a compounding of these different categories. You start with feeble-mindedness or disability and then that carries with it biases about race biases, about poverty. So it's multiply inflected, I would say. And that is why, if you look at the eugenics movement. It really targeted people who did not fit within the model of urban, or, let's say, suburban, upstanding white, middle-class families. That was the ideal for eugenicists. Those who didn't fit within that categorization were much more likely to be deemed “unfit” and threatening to society.
[43:08-54:12]
Susanna Smith: I think that's such an important point, and you've talked through it well, this idea of being “unfit,” quote unquote. And it may or may not have anything to do with actual genetic difference. The differences people are seeing could have been behavioral. They could have been language-based, things that made it hard for a person to take a test or answer a question. But I want to talk a little bit about genetic differences themselves because genetic mutations are natural and they're an expected biological phenomena that creates variance in a species and allows for evolutionary change. Often in medicine genetic difference is labeled as disability or disease.
So historically, how have you seen genetic counselors or geneticists contribute to this reductionist thinking about people living with genetic difference? And on the flip side, how have some medical professionals worked to expand the profession's approach to genetic difference in disability?
Alexandra Minna Stern: I think that's such an important question, and it relates to a range of aspects of genetic counseling as a profession. So if we go back to the early practitioners of genetic counseling, the Sheldon Reeds, and again, you know, I'm kind of periodizing this from the 1940s to the 1960s, and what you find is a great deal of what we would say, hardcore ableism, and a delineation of “unfit” and “fit,” based on categories of perceived disability. And I think the point that you make is really important. I often, in my work, want to point out that our job is not to figure out if someone in an institution who was sterilized was actually disabled or not. The point is, they were subjected to this giant sorting machine that reflected society's biases and the organization of power in society, a kind of biopolitical power. And that's what's more important rather than actually trying to prove a yes or a no because that's not ultimately going to get us anywhere. And it's not going to tell us much about either the human experience or the broader social patterns that are related to something like eugenic sterilization.
But in any case, back to disability and the early practitioners, I mean, we see a pretty exaggerated form of ableism and that informs the directive counseling that early genetic counselors conduct with patients and with clients and many of the patients and clients they saw were actually white, middle-class people who were very concerned. If you think about the post-war period where, you know, men came back from the war and were forming families and wanted advice about the best way to do so, and were concerned about, you know an aunt who at one point was institutionalized. I mean these are the kinds of people that would come talk to Sheldon Reed and others. But I think we can trace a pattern where you know this first period ableism is absolutely ingrained as an offshoot of the eugenics movement and as a bias of the time.
With the shift to master's degree, genetic counseling programs, which starts in the late 1960s with Melissa Richter, who founded the first program at Sarah Lawrence College. That kind of sets a foundation for the emergence of what are now dozens of programs. And in my book I look very closely at some of the early programs, some of which no longer exist. There was a program at UC Berkeley. There was one at Rutgers. They played a really important role in making the field.
What you have is a very interesting combination, insofar as these new practitioners like the genetic counselors that we would identify as genetic counselors today, start in the 1970s. They're overwhelmingly women. They're overwhelmingly white women, many of them come from fairly privileged backgrounds. If we think back to it when Melissa Richter envisioned the field, she viewed this as a part-time job that would be well suited to women who want to get back into the workforce but are also mothers. Now, obviously over time it's evolved into a full-time job, if not more than a full-time job for most practitioners because, you know, there's so much as part of that portfolio. But if we look at Melissa Richter and that kind of early, you know, thee seventies and eighties, we still find a great deal of ableism. Things are beginning to crack a little bit, and there's a little bit more awareness. But Melissa Richter herself had ideas about who was fit and unfit to reproduce. She also in the same way that she supported reproductive rights, she also was interested in population control so she was very much a product of her time in that regard. I would say it's really not until the early 2000s that we began to see a significant shift in genetic counseling with much more attentiveness to disability and to wanting to address disability in a more supportive, affirmative way and to dismantle the ableism that helped give rise to the field. And then followed the field across the decades.
There's a really good kind of blog site called the DNA Exchange, where genetic counselors who are thinking about these issues post pieces about culture and history, about ableism, about kind of categories of race, and how genetic databases are overwhelmingly made up of white Europeans and all of that. One of the things I like about the DNA Exchange is that there are a good number of entries thinking really about disability. Today there are a good number of genetic counselors who want the field to change. They want it to become more racially and ethnically diverse. They want to dismantle the ableism that has followed the field across the decades, and they want to be able to really build a set of practitioners that reflect the racial and ethnic makeup of American society today.
It's an ongoing question, and one that I pondered in my book, what are the impediments to that? And that's where I really think going back and looking at the early history, looking at the racism, looking at the ableism, looking at some of the real strict ideas about difference and who was worthy and not worthy. That helped shape the field. All of that needs to be grappled with still today. And so you can implement programs to be more inclusive, to be more diverse but you really need to grapple with the history and reckon with the history in order to change the field. And that's something I still strongly believe.
That might involve reorienting, rethinking categories such as what does autonomy mean in genetic counseling? What does non-directiveness mean? And where did that come from? And why did it matter for so long? That's a really important question to ask in order to understand the evolution over time and some of the really troubled baggage that still is part of the field. So I think that understanding the history can help unlock some of these issues and can really help make the field more inclusive and more diverse as it should be. And as many of its leaders want it to be.
Susanna Smith: Yeah. And I think reading your book one of the things that really jumped out to me was trust and ways in which the genetic counseling profession perhaps started as a profession that didn't really have trust among some groups of people, who would seek their care, for historical reasons. And sort of knowing that when you go into any interaction. I've been through genetic counseling several times, and I've talked about this in other episodes the way it is a prescriptive session often. It's structured, and it may not work for everyone. And there are lots of reasons why that's the case. I like your point about autonomy because I think there's a lot to be said for what autonomy means for the person sitting across from the genetic counselor, and what informed consent means, and how they make decisions and the values that go into those decisions and really understanding the person in front of you as a complete person, which includes the history that influences the interaction.
Alexandra Minna Stern: Yeah, I agree. I would say that if you look at issues of distrust in the medical profession, there's good reason for those to exist among certain populations we all know about the Tuskegee Syphilis Study. We know about the revelations about the abuse that was going on in mental institutions like the Willowbrook Home in Staten Island. And those leave a lasting legacy that still needs to be grappled with.
Genetic counselors, you know they are, it's a very interesting field, because it is a field where there are so many well-trained, well-intentioned professionals who are engaging in empathy. They have a lot of expertise, and they are trying to do really good work. I guess that's one of the points I'm trying to get across is that after I finished my book I was left with this overwhelming sense of both great, kind of sympathy and respect for genetic counselors and the kind of work that they're trying to do but also a real critical edge of the field and its history and its implicit and and explicit, but you know more and more, it's implicit biases, and how those were holding the field back. So it's almost like a catch- 22.
And it's a really great question. How can you racially and ethnically diversify the field of genetic counseling? I think, thinking about some of its core principles, and really dismantling those and asking where they come from. Whose autonomy they privilege over others? Who's defining trust? Where the power rests in the relationship? All of that is really important, and there have been strides in that direction.It's important to look at genetic counseling itself. Then genetic counseling, I think, needs to advocate for these viewpoints in this broader ecosystem, which is hard too because genetic counselors are distributed all across clinical medicine these days, not to mention private industry, and so on, and so forth.
One other point is that as genetic information has become more and more commercialized and people can access their risk factors, so to speak through 23andMe and other apps. To me it's become ever more important that we have high quality, genetic counselors out there to help people interpret this information. Because a lot of it is spurious. It is easily subject to misunderstanding. It's constantly evolving. I mean, it's just suspect in a range of different ways, and it potentially is not even very helpful.
So that is a shift that we've seen where genetic counselors where initially they had to kind of prove their worth by carving out a space within the clinical setting and clinical domains, now are living in a world where there's just a sea of genetic information that people will purchase on demand through, you know, a cheek swab. It raises a really interesting question. You know, how can genetic counselors play a role in all of that?
[54:15-56:40]
Susanna Smith: Thank you, Professor Stern, for joining me today on Genetic Frontiers for anyone listening who would like to learn more about Professor Stern's work. Please go to her website: http://www.minnastern.com/ and Dr. Stern's book, Telling Genes the Story of Genetic Counseling in America as well as her other books are linked to in our show notes below and are also available on Amazon.
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. If you enjoyed this episode and would like to support our independent production. Please make a donation to Genetic Frontiers through our Patreon account.