The controversy-du-jour in the mediaverse this past week centers on an advertising campaign for a pair of jeans by an apparel company, starring uber-celebrity Sydney Sweeney, that has raised the eugenics specter. It also capitalizes on the faded pun of jeans/genes, which gave me literary leeway to use the weak pun in the title of this posting. The controversy will likely be so short-lived that by the time this posting is up, the world will have its knickers in a twist over something else. But in these polarized times where everyone thinks they are so damned right about everything that they have to let the world know their opinions, everybody’s getting into the act of expressing outrage or support about the ad campaign. Since I too am so damned right about everything (ahem), I figured I should enter the fray.
The Sydney Sweeney video is not trying to sell eugenics by way of the jeans she is wearing. The videos are trying to sell jeans she is wearing by way of Ms. Sweeney’s derrière and breasts. As the Chorus Line number Dance 10 Looks 3 (otherwise known as the the Tits and Ass song) goes, “Debutante or chorus girl or wife/Tits and ass/yes, tits and ass/Have changed my life.” It’s part of the awful advertising tradition of using sex and bizarre notions of a “perfect” body image to sell over-priced products of questionable value. The video ends with a statement to the effect that these jeans can make everybody look sexy, not just slim young white women who meet the Madison Avenue criteria for sexy. Otherwise, product sales would be pretty low.
Some other advertisements linking genes and jeans.
That being said, the ad campaign has its share of eugenic tropes, but they are not unique to this particular ad campaign. I suspect that using these tropes was not a conscious decision to make a statement about eugenics. Instead, these eugenic tropes have been so woven into the fabric of American culture that they are naturally expressed in our language, media, and advertising.
Eugenic tropes in advertising go back over a century. The historian of science/lawyer Paul Lombardo has unearthed older advertisements from between 1910 to 1940, which are a less coy about the eugenics connection than the Sweeney ads. Here’s a few of them (Oh those prices!):
Some eugenic-themed advertisements from the first half of the 20th century, from the work of historian of science Paul Lombardo
Obviously, hairstyles, shoes, and diamonds have nothing to do with genes. Rather, the ads play on the perception that eugenics is associated with superiority. Since the ads don’t explain what eugenics is, it suggests that American consumers were aware enough of eugenic ideology that eugenic notions could be used to sell a product.
The concept of an ideal (i.e., White) female body type was also part of eugenic ideology. The text of an advertisement for a lecture by Albert Wiggam, a notoriously bigoted popularizer of eugenics, about the threat of immigration of “inferior” people, makes this clear: “The American woman is rapidly becoming ugly… her place is being taken by the low-browed, broad-faced, flat- chested women of lower Europe.” The antithesis of Sydney Sweeney. No modern advertising copy would make such a bold-face racist statement (at least, I would hope not, but these days…..). Instead, advertisers use the image of a Sydney Sweeney type because that idealized image of a female body has already been embedded in our psyches. Think of the 1979 Bo Derek movie “10.” Indeed, nearly all advertisements that use sex to sell a product use some variation of this eugenic female image. Incidentally, half of my ancestors migrated from “lower Europe.” The other half of my ancestry migrated from Eastern European, another group of immigrants despised by eugenicists. I didn’t realize how ugly I am until I started reading original sources in eugenics.
Below are some more recent advertising examples that capitalize on the idea that some DNA is superior to other DNA, and that it molds our ethics and character, though the Mini Truckin’ ad is a bit of a stretch to my mind.These examples do not use sexual suggestion to communicate their message.
What it comes down to is that eugenics was so pervasive in American society a hundred years ago that it became, well, part of our cultural DNA to this day. So of course it is going to appear in advertising. Advertisers are not trying to stir up a eugenics revival. Heck, that’s already happening thanks to mad men, not admen. Or, really, eugenics just never went away.
Even inanimate objects can have superb genetics. Toyota no longer produced the Tercel, so I guess its genes were not so great after all.
I could imagine a different version of the Sweeney ad. It would show images of many women of all skin tones and body shapes wearing these jeans and looking sexy. The sell-line would be “They were all born with great genes. But these jeans make their asses look great!” This shifts the focus from hereditarian ideology to mixed genetic/environmental ideology, with the jeans being the equivalent of the environment. Well, perhaps that’s a bit of a metaphorical stretch. But it also changes the discussion from eugenics to Diversity/Equity/Inclusion (DEI), which is bound to raise even more hackles because it’s actually ethical.
Okay, maybe I don’t have a future in advertising.
But please don’t tell ICE about my DEI advertising suggestion. Masked men dressed in black may forcibly drag me off to a prison in a country run by a cruel dictator thousands of miles away. Especially when they get wind of the fact that I am a grandson of immigrants from undesirable countries.
Thank you to Ambreen Khan for bringing this ad campaign to my attention.
Dena Goldberg, the ever-creative genetic counselor, has produced this video about the Sweeney/eugenics controversy. Coincidentally, Dena displayed her singing chops with a rendition of “Dance 10 Looks 3” at the 2020 GCs Got Talent talent show and fundraiser sponsored by the Genetic Support Foundation. Maybe we can get her to reprise her performance at the upcoming GCs Got Talent show and auction to be held in conjunction with the 2025 NSGC Annual Conference in Seattle. And any other GCs who are dancers, singers, comics, story tellers or otherwise creative talents should sign up to perform or donate their arts and crafts creations. The evening event is always a blast. To be hosted by Yours Truly.
The trump administration seems to think America has a birth rate that is too low. Basically, the idea is that in this country you just can’t have enough babies born to White middle and upper middle income married couples. Proposed pronatalist measures for increasing the birth rate, many of which are likely to be championed by the trump administration, stand out for their foolishness, ineptitude, and ignorance of human behavior. As a genetic counselor, they are particularly egregious to me because of their origins of in early 20th century eugenics. Not in a vague and general way. No, you can pretty much draw a straight line between now and then, even if trump et al. might deny such a connection. Which, perhaps, they may not.
Many of polices being considered are straight out of the pages of classic eugenic texts; the only difference is the font. Limiting immigration from “undesirable” countries. Portraying immigrants as criminals, social and economic parasites, and taking away jobs from Americans. A National Medal of Motherhood for mothers with 6 or more children echoes the Nazi’s Ehrenkreuz der Deutschen Mutter (Cross of Honor of the German Mother) for mothers of 4, 6, or 8 children (corresponding to bronze, silver, and gold medals). Far-fetched to link trump policies to Nazis you say? Well, j.d. vance and marco rubio have expressed strong support for the German far right Alternative für Deutschland (AfD) political party. Motherhood medals have also been promoted by Jospeh Stalin and Vladimir Putin. You would be keeping good company there, mr. president.
But underlying these economic policies is a deep sense of White Fear of being replaced by Undesirables. trump defines a family as married heterosexual parents. In 2022, ~ 70% of births occurred outside of marriage among Blacks, 68% among Native Americans, ~53% among Hispanics, ~52% among Hawaiian/Pacific Islanders, and ~27% among Whites (most commonly among lower income White women). These policies would also de facto exclude single parents and LGBQT+ people. This ticks all the boxes on the list of people deemed genetically inferior by eugenicists. Effectively the policies would primarily benefit middle and upper middle income White parents in heterosexual marriages, with a preference for the wife staying at home to raise the children (Not too many husbands would be expected to stay at home to raise all those children; that’s the wife’s job.). Charles Davenport and Harry Laughlin, respectively the director and superintendent of the Eugenics Record Office, would give their blessings to these policies.
A historic precedent that illustrates the contradictions and biases inherent in these economic incentives are found in the history of minimum wage laws. What, you say? Minimum wage laws? What do they have to do with eugenics? And even if these laws have their faults, aren’t they better than no laws at all? Here I base my discussion primarily on a book and an article by the economist T.C. Leonard.
To be clear, non-eugenic factors were involved in establishing minimum wages. But eugenically-minded economists played a critical role in establishing these policies and putting them into practice. Many of America’s leading economists in early 20th century were also strong advocates of eugenics. Edward Ross, an economist at Stanford University* and the University of Wisconsin-Madison, was a proponent of the Race Suicide Theory and strongly opposed immigration, especially from Asia. Harvard economist Irving Fisher** served as president of the Eugenics Research Association, helped found the Race Betterment Foundation, and was on the advisory board of the Eugenics Record Office. Simon Patten, an economist at the Wharton School*** who served as President of the American Economic Association, supported eugenics and “eradication of the vicious and inefficient.”
For these economists, eugenics was seen as a way to economically support the (White Anglo-Saxon) American worker. They felt that American workers’ jobs and family sizes were threatened by low wages. If workers couldn’t make enough money, they would not be able to support large White families. In the economists’ view, the source of low wages was competition from people who were willing to work for the lowest wages possible (I guess no one thought it conceivable that employers would voluntarily pay workers a decent wage).
Who were these people threatening the American work force and family? Immigrants were one group, primarily people not of Anglo-Saxon ancestry, in much the same way that trump has argued that “illegal immigrants” steal jobs from Americans. These anti-immigrant advocates despised all non-Anglo-saxon races more or less equally, at a time when race was defined differently and included the Italian Race, the Slavic Race, the Chinese Race, the Irish Race, etc. William Z. Ripley, professor of economics at MIT and Columbia University, was the author of The Races of Europe: A Sociological Study, a book that argued that race explained human behavioral and psychological traits, partly the result of heredity and partly the result of cultural upbringing. It was felt that these undesirable immigrants were “racially predisposed” to accepting low wages and living in sub-standard conditions.
But it was not only immigrants that worried the economists. They also fretted about women (who were supposed to stay at home and raise families rather than compete for jobs), children (these economists tended to support mandatory childhood education and child labor laws because these laws kept kids off the job market and competing with adults), the “shiftless”, the poor, African-Americans, and the “feeble-minded.” If low paying jobs paid at least a living wage supposedly guaranteed by minimum wage laws, then White Anglo-Saxon workers would be willing to accept these jobs and go on to have large families. And if lower paying jobs were filled by White workers, then the “undesirables” would be unemployed and less likely to have larger families or to even migrate to America at all. Voila! America would be saved!! Or so the reasoning went. Spoiler alert: it didn’t really work, despite legislative success. By 1923, 15 states and the District of Columbia had passed minimum wage laws. The federal Fair Labor Standards Act of 1938 established a minimum wage of 25 cents an hour.
How one defines a liberal, a conservative, a progressive, a eugenicist, or a critic of eugenics changes over the course of history. Many of these economists were considered Progressives and liberals but none of them would remind you of Paul Krugman, Bernie Sanders, Alexandria Ocasio-Cortez, or Elizabeth Warren. Minimum wage laws, while still controversial but for different reasons, no longer carry eugenic connotations. A number of prominent geneticists who were strong critics of eugenics, such as Ronald Fisher, Herman Muller, and Lancelot Hogben, also strongly supported policies that today we would label eugenic because they called for policies to encourage reproduction among “the most fit.”
Eugenic ideology never really died, even if no society ever died off because of over-breeding by the genetically unfit. Like a zombie, it keeps coming back to haunt us in different forms, separating the world into the genetically superior and the undeserving genetically inferior. Sometimes eugenics comes under the guise of maleficence with intent to harm and sometimes under the guise of beneficence with intent to help society. But whatever its form, it never does any good.
*- Stanford had an intimate history with eugenics from its founding. Besides Ross, Leland Stanford, Jr., Stanford’s founder, and David Starr Jordan, Stanford’s first president, along with several faculty members up through the 1960s, were ardent eugenics advocates.
** – In a weird historical echo of eugenics and phony-baloney medical beliefs that evoke Secretary of Health and Human Services Robert F. Kennedy, Jr., Fisher’s daughter was treated for schizophrenia by the psychiatrist Henry Cotton, who believed that the cause of schizophrenia was bacterially infected tissue in bodily recesses. Cotton “treated” schizophrenia through various surgical procedures including dental extraction, colectomy, hysterectomy, oophorectomy, cholesytecomy, gastrectomy, and orchiectomy. Fisher’s daughter underwent a partial bowel resection and died of complications from the surgery, one of Cotton’s many unfortunate victims. RFK, Jr., may not exactly be a eugenicist, but his attitudes toward autistic people sure smacks of it. Please, no one let RFK, Jr., know about Cotton’s ideas.
The collective memory of eugenics is that it was an ideology of archconservatives that thrived during the first half of the 20th century and whose demise was hastened by the horrors of Nazi Germany. We like to think that we now know better. Better science, better morals, better guiding ethical principles. Heck, we must even be better people. It may be a comforting story, but historians of science have been pointing out for decades that this collective memory is flawed. Eugenic ideologies and policies, usually under different labels and in various forms, can be found today in science, medicine, and social policies.
Strands of eugenic beliefs also became embedded into popular culture. For example, as historian of science Paul Lombardo has demonstrated, references to eugenics could be found in the advertisements of popular magazines and newspapers in the first half of the 20th century, suggesting that the average American was familiar enough with eugenics that the term needed no explanation. For marketing purposes, eugenics implied excellent consumer products such as diamonds, hair styles, and hair shoes, in much the same way that many companies today will state that the quality of its products or the company’s dedication to customer service is part of the company’s DNA. There are many other examples of eugenic themes in 20th and 21st century novels, films, comics, and video games.
Along these lines, I recently came across two Walt Disney cartoons that echo eugenic themes. I couldn’t believe it at first. I thought maybe it was just my hyperactive eugenics paranoia kicking in and deluding me. After all, I tend to see eugenic monsters lurking under my bed at night. But the more I studied the cartoons, the more convinced I became.
Disclaimer: I have no reason to believe that Walt Disney himself was a dyed-in-the-wool eugenicist or that the Walt Disney Company is a front for a nefarious eugenics media empire. Rather, these cartoons illustrate how eugenic ideology was so pervasive that it subtly and not so subtly became woven into the fabric of American popular culture. It could appear in a cartoon without the creators having a single eugenic bone in their body. Or it could manifest under a different name, so disguised that a cartoonist might not recognize it for what it was.
The first cartoon, Goofy’s Adventure Story from 1954, tells the story of the family history of the Disney character Goofy. Goofy is an anthropomorphized dog who first appeared in 1932 – the heyday of classic eugenics – as the character Dippy Dawg. The cartoon includes a family tree in reverse order of tree growth, i.e., with the ancestral Caveman Goofy at its apex and 1950s Goofy at its base (which, curiously, is how family trees were typically drawn until about the 15th century). Descending between the two is a lineage of historical Goofy characters. Each ancestor is basically a stereotypical White European (for the moment, ignoring Goofy’s canine heritage*). In the cartoon, each character does something, well, goofy, in keeping with the character’s namesake trait. Goofy appears to be part of a patrilineal society since there are no female ancestors on the tree.
The family tree was a powerful symbol for eugenicists, who recognized the value of graphics in getting their point across. The many pedigrees of “feeble-minded” families produced by eugenicists were used to “prove” that intelligence was inherited in Mendelian fashion and that the people at the lower end of the intelligence spectrum were breeding at such incredible rates that the very existence of society was threatened by their reproductive drive, low intelligence, and propensity to crime and poverty. The pedigrees of “feeble-minded” families – typically poor and from “degenerate races” – reflected the race and class biases of eugenicists, who were primarily economically well-off Northern and Western White men.
Goofy’s family tree is a variation on these eugenic pedigrees. Goofy’s tree is peopled with Noble White Man tropes so beloved by eugenicists, such as Roman emperors, Greek warriors, knights in armor, and Pilgrims. In keeping with Goofy’s nature, these figures are presented in comic form. But the comic form gets at the essence of the connection to eugenics. Think about it for a moment – the name Goofy is synonymous with “feeble-minded,” a connection reinforced by his signature “Hyuk, Hyuk” laugh and two widely-separated upper teeth (which don’t look like canines to see). Disney, of course, wasn’t trying to revive classic eugenics. Rather, Goofy’s pedigree illustrates how the eugenic notion that intelligence was inherited and ran for generations within families was so engrained into the public consciousness that, even without thinking about eugenics. it was natural to create a “feeble-minded” cartoon character who has a family tree full of “feeble-mindedness.” Goofy’s family history is a modified and cartoonized version of the pedigrees of the Jukes, the Kallikaks, the Hill Folk, the Mongrel Virginians, the Pineys, the Nam Family, and the many other “degenerate” families described by eugenicists.
A rendering of the Kallikak Family tree from a 1950s psychology text (contemporaneous with Goofy’s family tree), based on the 1912 book “The Kallikak Family: A Study in the Heredity of Feeblemindedness” by Henry Goddard.https://en.wikipedia.org/wiki/The_Kallikak_Family
The Goofy family tree also includes an odd appendage, one that I have decided to believe is unintentionally inappropriate and reflective of what was considered acceptable at the time rather than a, uh, racist dog whistle. Dangling from the lowest branch on the left is a noose. I am not exactly sure what a noose is doing here although I guess it’s somehow connected to Wyatt Earp Goofy, who appears to be nailing a Wanted poster to a tree. Not that I expect a cartoon to be historically accurate, but Earp is not particularly associated with hangings, and in fact helped disperse a mob that was intent on hanging a man accused of murder. The noose, of course, is an image used by White supremacist racists to try to strike fear in the hearts of Black people in America. Along these lines, in the cartoon Wild Bill Goofy shoots a Native American in a manner that’s somehow supposed to be humorous, and the appearances of Native Americans and South Seas “cannibals” are depicted stereotypically.
In another weird twist, the country the Goofy Family Tree appeared on a postal stamp issued by Uganda in 1992, celebrating the 60th anniversary of the creation of the Goofy character (Disney characters were licensed for use on postage stamps in many countries).
In the other eugenic-themed Disney cartoon, titled Family Planning, Donald Duck helps a disembodied narrator explain family planning. The cartoon does not detail the specific methods of family planning other than “taking pills” and “using simple devices.” Just as well, I guess. I for one was not interested in Donald Duck demonstrating how to use a condom or Donald and Daisy practicing the rhythm method.
Some of the Population Council’s early presidents had strong ties to pre-World War II eugenics, most notably Frederick Osborn. Osborn helped create the journal Eugenics Quarterly, was a founding member of the American Eugenics Society and a member of Britain’s Eugenics Society, and once characterized Nazi eugenics as “an important experiment.” After WWII, he apparently had a fall-off-his-ass experience and began portraying himself as a severe critic of classic eugenicists such as his uncle Henry Fairfield Osborn. He shifted his focus to positive eugenics (i.e., encouraging the “right” people to breed and encouraging the “wrong” people to voluntarily curb reproduction) and acknowledged the role that environment played in an individual’s development and lot in life, what might euphemistically be called a kindler, gentler eugenics.
Despite Osborn’s claim to the contrary, these two quotes from 1965 and 1963, respectively, demonstrate that he had not fully shed some of his hard core eugenic beliefs:
…the average genetic character of parents of unwanted children is likely in the long run to be below average. An unusual proportion of these unwanted children grow up to be juvenile delinquents, unemployed, or social charges.
Every racial group has a certain proportion of genes for high ability…. It appears that ever since World War II, Negroes as a group have been increasing in numbers more rapidly than the Whites, with a probable trend during this period towards producing relatively fewer able individuals. This is the kind of dysgenic situation which eugenics aims to ready.
Osborn was no longer president when the cartoon was produced and as far as I know did not play a role in developing it. But his eugenic philosophy strongly influenced the organization’s policies during the 1960s. It’s this Osbornian view of humanity that guides the message of the Disney cartoon.
The cartoon’s central character is a peasant farmer with a skin tone a shade or two darker than white and who speaks English with what sounds to me like a Central American accent. When the family has only 3 children, the farmer is able to provide for his family – enough food, schooling, and a few simple possessions such as a radio. But, according to the cartoon, if the family goes on to have 4 more children, the farmer will no longer be able to provide enough food or otherwise meet the basic needs of his family. The parents become so tired they can barely care for their children, who grow weak and sickly. When the sons grow up, the small family plot will have to be divided among them, restricting their ability to care for their families. Heaven forbid, should the family move to the city they will be even worse off because they can’t afford to live there. The narrator’s solution is for the peasant to practice family planning so that reproduction is not “left to chance” and “you can only have the children you want.”
Eugenic themes were not confined to cartoons. They can be found in other areas of popular culture from that era and even up to today. The Beverly Hillbillies (“a poor mountaineer who barely kept his family fed”) are the cultural descendants of Charles Davenport’s Hill Folk. As are the inhabitants of the hills of northern Georgia in James Dickey’s novel Deliverance (“Nobody worth a damn could ever came from this place.”) who terrorized the rich urban men seeking to display their manhood by spending a weekend rafting a wild river. Or, from a previous generation, the immigrant-hating horror novelist H.P. Lovecraft who wrote of unimaginable alien horrors lurking in the hills of New England (“West of Arkham the hills rise wild… When I went into the hills they told me the place was evil.”). In a clever thematic manipulation, the current TV series Lovecraft Country features Black characters facing the monsters of White racism across America’s 1950s South.
The current spate of zombie movies, novels, and television shows can be read as eugenic, with their mutated throngs of human monsters threatening the existence of Western civilization. Perhaps it’s no coincidence that the popularity of the zombie genre is blossoming during a time of anti-immigrant sentiment in Europe, America, and other places. Eugenics has an uncanny ability to morph and adapt to different times and different cultural milieus. And, like zombies, it refuses to die.
– Someone really should perform whole genome sequencing on Goofy and Pluto to finally resolve the long-standing debate about the differences between the two, Goofy being a canine who is bipedal, language fluent, and a friend of Mickey Mouse whereas Pluto is a quadrupedal canine, incapable of speaking, and is Mickey’s pet. Surely the difference lies in their genomes.
What is the economic worth of one person’s life? That question was raised yet again in a recent paper on expanded carrier screening (ECS) that justified an expanded carrier panel based on the cost-savings garnered by avoiding the birth of people with any of 300 mendelian disorders. A quick and likely incomplete literature search revealed other similar publications from around the globe (Azimi et al., 2016; Beauchamp et al., 2018; Busnelli et al. 2022; Clarke, 2021; Wang et al., 2022). NSGC’s Expanded Carrier Screening Guidelines also point to economic gains as one of the benefits of carrier screening. Other professional guidelines and research papers do not discuss the economic benefits of expanded carrier screening, though read carefully, the disability avoidance/cost savings theme is often an undercurrent. To me, economic justifications for ECS raise serious concerns.
The quantification of saved costs over time will help to critically examine the medical necessity of ECS as a proactive health screening strategy. – NSGC Expanded Carrier Screening Guidelines,2023
To be clear, I don’t object to carrier screening per se and a “pan-ethnic” panel can make more sense than an ethnic-focused panel. All patients deserve the right to make complicated and highly situated reproductive decisions and access to genetic testing should be fair and equitable, points which most professional guidelines agree on. My concerns arise from the purported economic benefits of ECS through disability avoidance (I, along with Katie Stoll, have some other concerns about ECS besides economic cost benefit analysis).
But first some historical context.
During medical genetics formative decades in the mid-20th century, the concept of cost-savings by preventing the birth of people with genetic conditions was baked into the field, using ingredients leftover from eugenics. Many leading geneticists at the time preached about the economic and other costs to society of genetic mutations (and by extension, the worth of people who carry such pathologic gene variants), and how it was important to eliminate these pathologic variants to save society money and to preserve the future of humanity itself. While post-World War II geneticists typically disavowed old school eugenics, many of their concerns continued to echo the field’s eugenic origins.
Let me illustrate this history with a notable example. In 1954, the National Academy of Sciences formed a group called The Committees on The Biological Effects of Atomic Radiation (often called The BEAR Committee), six separate committees that were charged with reviewing the available data on the range of biological effects of atomic radiation. A 1960 report from this group detailed the findings from the Committee on Genetic Effects of Atomic Radiation. The genetics committee was comprised of some of the leading brilliant geneticists of the day – George Beadle, Bentley Glass, James Crow, Theodosius Dobzhansky, Herman Muller, James Neel, and Sewall Wright, to name a few. Sewall Wright, in his chapter in the report “On the Appraisal of Genetic Effects of Radiation in Man,” divides humanity into 13 groups, based on intellectual, behavioral, and physical traits. Wright then decides the degree to which each category’s contribution to society is greater or lesser than its cost (as far as I can tell, based on Wright’s opinion and zero data). Some examples of these categories give an idea of their flavor:
1. In the first category, which includes the buIk of the population, there is an approximate balance between contribution and cost, but both at relatively modestlevels.
4. In this category are those who cost society much in term of education and standard of living but who contribute much more than the average at their level of cost.
6. We may put here individuals of normal physical and mental capacity whose cost to society outweighs their contribution because of the antisocial character of their efforts: charlatans, political demagogs, criminals, etc.
8. Low mentaIity but not complete helplessness.
10. Mental breakdown after maturity, especially from one of the major psychoses.
Sewall Wright, great statistician that he was, then graphed out these categories in this figure:
People in categories above the dashed midline contributed more to society than they cost, for people in categories close to the midline their cost/benefit was a wash, and people below the midline cost more than they contributed. In Wright’s view (and presumably the view of most of the genetics committee), anybody in Categories 7 or below cost more to society than they were worth. Oddly, those in Categories 5 and 6, were “acceptable” to Wright, even though their cost to society were greater than their contributions. He may have had a soft spot for playboy types, charlatans, and criminals, although he was also unsure of the genetic contribution to these traits .
Wright’s graph did not go unnoticed. Victor McKusick, whose obituary called him “The Father of Medical Genetics,” reproduced Wright’s graph in his 1964 short book Human Genetics, one of the earliest modern medical genetics texts. On page 141 of McKusick’s text, he goes on to say “No one would dispute the desirability and scientific soundness of encouraging reproduction of intelligent persons who are an asset to society.” And it didn’t end there. Cost effectiveness studies continued to be raised to justify the introduction of heterozygote carrier screening and amniocentesis in the 1970s and beyond.
From an ethical perspective, I find it appalling that the cost-savings to society is hailed as a benefit of expanded carrier screening. Do we really measure the worth of a human life by how much money they contribute or cost to society? Isn’t that whatpeople with disabilities, their supporters, their families, and disability scholars have been screaming at us for like a million years? Are we that tone deaf that we can’t hear their shouting? Are we just pretending to hear them or are we simply ignoring them? Isn’t a human being’s worth measured by non-economic factors? Who’s to say whose life is more worthwhile than others or how it should be measured? Why is it that people born with a genetic condition are less valued than people who develop disorders after birth that are even more economically burdensome, like dementia, lung cancer, diabetes, and heart disease (the risks for many of which can be reduced by low cost interventions like improving diet and exercise, and avoiding tobacco and excessive alcohol intake)?
Cost-savings justifications are also incompatible with Diversity, Equity, Inclusiveness, and Justice (DEIJ) initiatives. Money-saving justifications imply that if you are born with a genetic condition and cost society too much money, we are not going to include you. The message is that we support DEIJ for the “right” kind of people, those whose genomes and phenotypes aren’t too costly.
From a technical standpoint, many cost-effectiveness studies suffer from some serious flaws. For example, the Beauchamp et al. paper mentioned above includes 176 conditions in their analysis. Realistically, and which the authors acknowledge, there is no way to obtain reliable lifetime costs of all 176 conditions, given the rarity and variable prognosis of most of them. Also, the greatest economic cost benefit comes from the conditions associated with increased likelihood of survival to adulthood and the attendant need for ongoing care, such as Fabry disease, cystic fibrosis, the hemoglobin disorders, and Wilson disease. Adding on dozens and dozens of other uncommon conditions, often associated with early death, does not add much to the economic savings (a point also made in the paper by Azimi et al., cited above).
Cost-savings studies also often make the erroneous assumption that people who have a genetic condition make little or no economic contributions to society. Tell that to all the hard-working adults with Fabry disease, cystic fibrosis, deafness, hemoglobinopathies, etc. Not to mention the many non-economic benefits that any individual – regardless of their genome or phenotype – may “contribute” to society, such as joy, love, friendship, community, artistic creativity, etc.
But you might argue that health resources are limited and saving billions of dollars can’t be ignored, whatever the exact amount. That saved money could go to treating people with genetic conditions. Well, first off, there is no reason to believe that such abstractly saved money would be funneled directly into the care of patients with genetic conditions, or for that matter back into the health care system itself. The theoretically saved money could just as easily wind up funding some legislator’s pet project.
Furthermore, the savings are not quite as impressive as they sound. For arguments sake, let’s accept the estimates of Beauchamp et al. that on average each condition incurs a lifetime cost of $1.1 million (US) and that 290 of every 100,000 pregnancies are affected by one or more of these 176 conditions. Assuming about 3.6 million births in the US each year, that would result in 10,440 children with one of the screened conditions. At a lifetime cost of $1.1 million each, that adds up to ~$11.5 billion in savings over their lifespan (I am making a “best” case but unrealistic assumption that all at risk couples are identified and all affected births are avoided by preimplantation genetic testing, prenatal testing and termination, avoiding reproduction, gamete donation, etc. Cost-effectiveness studies of course don’t make such unrealistic assumptions).
On the other hand, the annual (not lifetime) spending on all health care in the US is $4.3 trillion, per the Center for Medicare & Medicaid Services. The lifetime costs of caring for people with the conditions included in an expanded carrier screening panel is barely a rounding error in annual health care spending in the US. Is the purported savings benefits of expanded carrier screening worth a rounding error, in light of its ethical shortcomings?
Figures 2a and 2b from the Beauchamp et al. reference cited above, illustrating the cost-effectiveness of different carrier screening strategies. Note how the graphs visually evoke the Sewall Wright graph above.
Another justification offered for ECS is the claim that money is saved by shortening the diagnostic odyssey and thus reducing visits to specialists and avoiding unnecessary and inappropriate treatment and testing. Certainly shortening the diagnostic odyssey is a laudable and important goal. However, cost calculations based on that claim are likely to be flawed. We don’t know how many babies born with the screened conditions would experience a diagnostic odyssey, how long the odyssey would take for each condition, and how much unnecessary spending would have been avoided. Nor do we really understand how many children undergo the diagnostic odyssey overall or what percentage of these journeys might be avoided by expanded carrier screening. Besides, the diagnostic odyssey could be more effectively shortened – though by no means eliminated – by expanding newborn screening and/or improving the availability of, and access to, whole genome sequencing, which would allow diagnosis of a much broader range of conditions than those included on carrier screening panels.
A potential and subtle danger of emphasizing the economic benefit of ECS lies in the absurd economics of healthcare that results in the high cost of new and innovative ways of treating genetic disease based on the underlying pathologic variant. Delandistrogene moxeparvovec-rokl (Elevidys), an anti-sense oligonucleotide (ASO) for approved by FDA in June for treating Duchenne muscular dystrophy patients with certain dystrophin variants, is priced at $3.2 million (US). As pointed out by Dan Meadows in this space a few weeks ago, the cost of nusinersen (Spinraza), another ASO, to treat some forms of spinal muscular atrophy, is estimated to cost ~$750,000 (US) the first year and $375,000 per year thereafter. Such high costs of treatment further bolster the belief that treating genetic disease is too costly. Paradoxically, just as at least partially successful treatments are finally becoming available for some genetic conditions, there may be a move to further prevent more births of people with certain genetic conditions in order to save money.
It’s tempting to equate cost-savings with eugenics. However, I think the eugenics label adds nothing to the discussion, other than being an accusation that turns the discussion into an argument. Whether or not it’s eugenic depends on how you define eugenics, and there is no widely agreed on definition. I think it is inaccurate to broadly label medical genetics and genetic counseling as modern day eugenics. Nonetheless, arguments for cost savings and disability prevention betrays the field’s eugenic roots and how we have not fully come to grips with our history. The graphs and table displayed in this post are not exactly the same, but they do share a pedigree. With each generation, the graphs and tables change to reflect their times, but the underlying message remains constant.
Medical geneticists and genetic counselors are not an unethical bunch. In fact, I have always been impressed with how much we struggle with complex ethical issues on a daily basis. But our vision can be subtly influenced by our history and by the fact that many – probably most – clinical and laboratory positions rely on the availability of genetic testing. We try to so hard to be good but sometimes it blinds us to the bad we might do. As Devin Shuman so elegantly reminded us in this space last week, the good intentions of our ableist assumptions can do a lot of harm. It’s about time we shed the ethical baggage of economic savings based on avoiding the birth of people with disabilities.
This month is the 33rd anniversary of the Americans with Disabilities Act (ADA) being signed into law and so has become Disability Pride Month. Most people started today unaware of either of these events and have likely never seen the Disability Pride Flag before. You won’t likely see companies changing their logo on social media to celebrate their disabled employees and customers. Disability awareness campaigns and sharing “inspirational” disability stories may be a common part of public discourse, but Disability Pride and the history of Disability culture are less commonly discussed.
The ADA was an important milestone for the rights of people with disabilities. However, disability rights in the US have a much longer history than just the ADA and I encourage everyone reading this to take the time to learn about the larger Disability Rights Movement through resources like the movie CripCamp, the books listed at the end of this post, and by learning about specific events such as the Capitol Crawl or the Mad Pride Parade. The ADA is a moment in Disability history; it was not the end-all solution and disability discrimination and segregation still exists.
Why do I care about this topic?
Because 1 in 4 of American adults have a disability, making up over 13% of the general population, and it is the only demographic that we all will fall under at some point in our lives.
Because countless barriers have led to an immense health disparity where 1 in 3 adults with a disability do not have a usual healthcare provider and 1 in 3 have unmet health care needs due to the cost of that care.
Because I am a genetic counselor with a genetic disability. I identify as Disabled and work in a profession (genetics) with an entangled history and relationship with eugenics.
As a genetic counselor (GC), I believe that we GCs are in a unique position to dismantle barriers disabled individuals face and to move healthcare away from the historical medicalized approach to disabilities, which views disabilities as a problem to solve or something to pity. Disability Pride Month is important because disability can be more than a diagnosis, it can be a community, a legacy, and a culture with our own art forms and language use. We have these ingrained assumptions that to be disabled is to be unhappy or isolated. But I am capital-D Disabled because this is my identity; one that brings me joy and connects me to a larger movement. Disabled is not a bad word. It is important to remember this, and to remember that disability conversations are not just relevant to patient care, but also how we interact with our coworkers and students.
“Disabled people have always existed, whether the word disability is used or not. To me, disability is not a monolith, nor is it a clear-cut binary of disabled and nondisabled… Disability is pain, struggle, brilliance, abundance, and joy. Disability is sociopolitical, cultural, and biological. Being visible and claiming a disabled identity brings risks as much as it brings pride.”
― Alice Wong
In graduate training I was taught about diagnoses from the medical perspective, i.e., defining a condition by its list of symptoms, and this does have an important role in medical training. However, only teaching the medical and social model or with case examples of disability culture (i.e., the Autistic and Deaf communities) gives the false impression that various models of disability are optional lenses to try on or a “special-interest” topic. When we view a positive test result as bad news, we’re defaulting to the tragedy model of disability. When we refer patients to diagnosis-focused foundations or organizations run by parents, we are often ensuring that the charity and inspirational models of disability are the first a patient encounters because that framing of disability is best for fundraising. When we frame a condition or disability as something to fight against (i.e., the epidemic of autism), we are framing someone’s very existence as something to be defeated. We can do better than this.
I truly believe that the best way to improve how we counsel patients is to improve how we think about disability. Word choice is incredibly important, but just changing how we speak or write, while not changing how we think, means that we will continue to perpetuate outdated and detrimental ideas of disabilities as a problem to be solved. There are some easy changes in word choice we can all apply (see table at the end), but the harder part is checking our own privilege and realizing that we will spend our entire lives unrooting our ingrained biases.
Here are some quick gut-checks for ableist biases:
Have you ever seen a diagnosis on a patient chart, or a long list of them, and thought that this patient would likely be “crazy,” difficult, or a hassle?
Has your first thought upon seeing a positive test result been about the burden this is going to place on the family or have you started a disclosure with “I’m sorry?”
Have you shared “inspiring” videos of disabled people completing normal activities such as playing a sport, graduating school, getting married, or the videos of a kid using a hearing aid for the first time?
Have you told someone with a disability that you “get it” because you did a training about their condition, you once had to use a mobility aid after an injury, or you know someone with a similar condition?
When a patient doesn’t fit the textbook definition of a condition or does not provide an organized/linear medical or family history – have you considered that they are making it up or shouldn’t be believed due to being a “poor historian?”
Have you made the assumption that all disabled individuals would want a cure, treatment, or therapy (such as those designed to teach disabled people to mask their symptoms)?
Do you use disability slurs like stupid, lame, dumb, idiot, blind, deaf, crazy, or insane, such as in reference to a politician you dislike?
As GCs, we can get caught up in excitement over the latest “cool” genetic testing technology available to patients. But, I don’t think we often take the time to pause and think about the implications of what we’re offering and the assumptions these offers make. With ASRM recommending health conditions that should disqualify oocyte donors, are they sending a message of who is “worthy” of procreating or implying that their offspring wouldn’t be “optimal?” When ACMG recommends carrier screening tiers based on the “severity” of conditions, aren’t we telling Disabled people that their daily life is “impacted enough” to be a potential burden to their families and society? So many individuals who do not have disabilities and organizations decide they can speak for Disabled people and they know what is best for us. Our lives are held up as examples to justify discriminatory medical recommendations and political opinions, under the guise of “good intentions” they hijack the rhetoric of the disabilities right movement. If our voices aren’t included, and if we’re used as examples of reasons why more of us should be prevented from existing, you’re not promoting equity and inclusion. We often discuss disability rights only in the context of prenatal or preconception counseling, but being disabled is far more complex. It intersects with every single aspect of your life, and your relationship with it may change through every stage of your life. Within our current society, even existing in the world as someone disabled can be a radical act.
I think as a GC, we often want to make things simple and easy for our patients, but we cannot fear the complex and our patients won’t be able to avoid their own complex interactions with society. I’ve seen GCs dodge talking about mental health family history and avoid testing that may result in variants of uncertain significance – and I truly believe this often stems from a preconceived notion that uncertainty is, by default, a burden. If we can’t offer a “cure” or a yes-or-no answer we may get uncomfortable or feel like we’re failing our patients and then assume our patients will also be uncomfortable. However, as someone with a progressive genetic syndrome, my entire life is uncertainty. We all carry thousands of genetic changes and dozens of genetic conditions – and we need to normalize that for our patients. All of our lives are uncertain. We need not shield our patients from this normal part of life based on the belief that genetic uncertainty is exceptionally difficult. We have to be careful that we’re not continuing the collective fiction that genetic testing somehow guarantees a particular predicted future. Just because we have good intentions doesn’t mean our actions do not perpetuate harm.
Providers may warn patients to avoid social media; however that is also where a disability identity and second-family may be found. Providers may not want to “burden” patients with too much information, though who gets to decide what information should be included? We put patient autonomy and informed consent as a top priority, but the medical field also will often restrict the rights of disabled patients, for example from deciding to transfer an embryo with a genetic syndrome during IVF. ASRM recommendations for egg and sperm donors promote both positive and negative eugenicsthrough both private and public decisions. However, this puts an immense weight and emphasis on a test result – do they really give “yes or no” answers or holistic predictions about someone’s future? I think we all know that’s not true, and a genetic diagnosis (or lack thereof) is only one detail of a life being created. All pregnancies and futures are uncertain, that’s one of the joys of parenthood (and life) – very few things can truly be predicted. Our patients deserve the agency of making these decisions for themselves, with their priorities front and center, with information that’s not focused on easing the conversation at that moment or asking for an immediate decision. Our training makes us especially equipped to fight the patronizing approach of doctors knowing “best,” that was the norm in medicine for so long.
We are uniquely positioned to provide validation and support for our patients during the diagnostic odyssey, as we often have time to build those relationships and can be involved in the consent and disclosure process for genetic testing. To maintain our ability to support patients, we need to remind everyone that there is value in time spent with patients and push back against the increased pressure to shorten that time or have patients make decisions based on one-session with a GC. We need to continue to fight for unbiased GCs and to recognize that no decision is made in a bubble and even the best intentions of being non-directive, still exist within an ableist society. We need to remind ourselves that all patient reactions are normal – being overwhelmed, disorganized, confused, stress-free, happy, or proud. Our patients are not less validly disabled if they can work or if they’re on Social Security Disability Insurance (SSDI), if their disability is visible or invisible, if they have a known genetic etiology or not. What is notvalid is for GCs to feel we have learned “enough” about disabilities, to approach a patient starting from a position of skepticism, to feel like some disabilities are more legitimate than others, or to think that we aren’t ableist because we may feel like we are more of an ally than other health professions. We are ALL ableist, even those of us who are also Disabled.
“Navigating ableist situations is like traversing the muckiest mud pit. Ableism runs so deep in our society that most ableists don’t recognize their actions as ableist. They coat ableism in sweetness, then expect applause for their “good” deeds. Attempts to explain the ableism behind the “good deeds” get brushed aside as sensitive, angry, and ungrateful.”
― Haben Girm
One class in our training, one sponsored webinar, one panel at a national conference – none of these are one-stop-shops for retraining our brains to remove entrenched ableism. “We cannot comprehend ableism without grasping its interrelations with heteropatriarchy, white supremacy, colonialism and capitalism.” (Leah Lakshmi Piepzna-Samarasinha) Ableism is intersectional and complex and it will take a lot of time to unpack. I like the garden metaphor for our brain – we can’t always choose what concepts were planted in our minds in the past, it’s not always our fault if weeds flourished when we weren’t looking. However it is our responsibility to take the time to dig out those weeds and to nurture the plants we want to grow. Is weeding out ableism difficult? Yes. Is it sometimes embarrassing to realize what biases have grown in our minds? Yes. Will we spend our entire lives weeding? Probably. But that’s a good thing! When we recognize that we have a lot to learn, that we all are ableist, that this is a never-ending learning process, that is where we find our power to change and our forgiveness for our past self’s ignorance.
Advocacy is not being silent. Advocacy is having the hard conversations. Advocacy is speaking up about topics that don’t directly affect you in order to take the burden of creating change from those who are directly affected by a policy, institution, or bias. Advocacy is active. Advocacy is continual. Advocacy is humble self-reflection and strives for change.
Related Reading – contains only books I have read, so is not a comprehensive list:
Demystifying Disability: What to know, What to Say, and How to be an Ally by Emily Ladau – A quick easy read
Disability Visibility: First-Person Stories from the Twenty-first Century by Alice Wong
Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarashinha
Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann
About Us: Essays from the Disability Series of the New York Times by Jonathan Todd Ross
The Boys in the Bunhouse: Servitude and Salvation in the Heartland by Dan Barry
Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrier Buck by Adam Cohen
What Doesn’t Kill You: A Life with Chronic Illness – Lessons from a Body in Revolt by Tessa Miller
Haben: The Deafblind Woman Who Conquered Harvard Law by Haben Girma
Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain by Abby Normal
Disfigured: on Fairy Tales, Disability, and Making Space by Amanda Leduc
The Future is Disabled: Prophecies, Love Notes, and Mourning Songs by Leah Lakshi Piepzna-Samarashinha
Feminist Queer Crip by Alison Kafer
We’re Not Broken: Changing the Autism Conversation, by Eric Garcia
GC and Disability related reading (may contain outdated terms and references):
Choosing Children: Genes, Disability, and Design by Jonathan Glover
Genetic Dilemmas: Reproductive Technology, Parental Choices, and Children’s Futures by Dena Davis
Babies by Design: The Ethics of Genetic Choice by Ronald Green
Telling Genes: The Story of Genetic Counseling in America by Alexandra Minna Stern
Fables and Futures: Biotechnology, Disability, and the Stories We Tell Ourselves by George Estreich *Recommended by other GSF GCs
Disabled, has an IEP/504 plan, receives additional supports in *** subject areas, support needs **
Disability/handicapped bathroom/parking
Accessible bathroom/parking
Wheelchair bound/confined
Wheelchair user, uses mobility aids *list them out
*Many of these are context dependent and so it may be okay to use certain words in certain contexts, some may also be reclaimed or the preferred term by individuals.
Devin Shuman (she/her) is a genetic counselor at Genetic Support Foundation who has mitochondrial DNA depletion syndrome. On twitter at @DevinShuman.
Robert Resta is a retired genetic counselor and a regular contributor to The DNA Exchange. Diane B. Paul is Professor Emerita at the University of Massachusetts Boston and Associate in Organismic and Evolutionary Biology at Harvard University. She has published widely on historical and policy issues in genetics. Her books include Controlling Human Heredity: 1865 to the Present (1995), The Politics of Heredity: Essays on Eugenics, Biomedicine, and the Nature-Nurture Debate (1998), The PKU Paradox (with Jeffrey P. Brosco, MD, 2013), and an edited volume (with John Stenhouse and Hamish G. Spencer), Eugenics at the Edges of Empire: New Zealand, Australia, Canada and South Africa (2018).
The American Society of Human Genetics (ASHG) recently released Facing Our History – Building An Equitable Future Initiative, a report on the role of the organization and geneticists more generally in past injustices, including eugenics, sickle cell screening, and perpetuating inaccurate information about XYY syndrome and racial stereotypes about intelligence. About 3 years ago one of us (RR) authored a three-part series in this space that explored the role of eugenics in shaping the ASHG and the views of its leadership (Part 1, Part 2, Part 3). Some of that content was cited in the ASHG report.
There is much to be admired in ASHG’s willingness to acknowledge the roles the organization and its leadership played in respect both to eugenics and social injustice generally. However, the report also has several flaws. Here we focus our critique on our areas of interest and expertise – its account of the history of eugenics, which includes assertions that have been widely challenged by historians (without any acknowledgment of their contested status) as well as factual errors and omissions that skew interpretations. Here we discuss a few examples.
The Claim that Revelations of Nazi Atrocities Ended Support for Eugenics
In the summary of report themes (p. 4), the authors write that “after World War II and the realization of how American eugenic policies inspired the atrocities of Nazi Germany, public popularity of eugenics collapsed.” This claim is repeated in the section on “Origins of the American Eugenics Movement,” where readers are told that: “As the public learned how scientists and politicians in Nazi Germany used eugenic ideals to justify the atrocities and genocide they committed during the Holocaust, the public and scientific community became increasingly critical of and horrified by eugenics” (p. 10). But scholars have become increasingly skeptical of the view that World War II (WWII) represents such a turning-point. One source of skepticism is the fact that the trajectory of eugenic sterilization (which continued both in law and practice after WWII) does not even begin to square with this periodization. Another is the fact that many prominent scientists, such as Francis Crick, Linus Pauling, H.J. Muller, Julian Huxley, N.W. Pirie, and Peter Medawar (among others), and such influential theologians as Joseph Fletcher and Paul Ramsay, continued to argue for the need to control human reproduction – often explicitly under the rubric of eugenics — through at least the 1970s. Indeed, at conferences and in scientific and popular books and articles it was commonly argued that the need to control reproduction was now more urgent than in the past given expanded military and medical uses of radiation, resulting in an increasing “mutational load,” and advances in medicine that allowed individuals who would once have died before their childbearing years to survive and reproduce. The vocabulary of eugenics may have changed after WWII, but eugenics continued to play a key role in the writings and beliefs of many leading geneticists and other scholars.
Moreover, whether one thinks that eugenics (eventually) died or has continued in other guises depends crucially on how the term is understood. And understandings of what counts as eugenics have both shifted over time and remain contested. Thus, individuals who would have been considered – and considered themselves – to be critics of eugenics in the pre-WWII period, such as Lancelot Hogben and H.J. Muller, (because they criticized some of the scientific assumptions and/or racial and class biases that characterized establishment eugenics), would, by most current understandings of the term, count as eugenicists (because, among other things, they endorsed the sterilization of those with serious hereditary defects, a position that was then widely taken for granted, even by most self-defined critics).
Moreover, there is no consensus today as to what policies, practices, and beliefs should be considered “eugenic.” In one perspective, eugenics implies state control of reproduction, whereas in another, eugenics can be voluntary and even actively chosen by individuals influenced by social norms of health, intelligence, and physical attractiveness. From the latter standpoint, far from withering and dying, eugenics continued to flourish in other forms such as marriage counseling, population control, and the once common cost-savings rationale for prenatal testing (preventing the birth of individuals with disabilities), in the 1960s and ‘70s. (Until the 1980s, most studies of the effectiveness of genetic counseling measured its impact on the incidence of disability and/or the reproductive decisions of counselees). Moreover, in the perspective of those who believe that eugenics can be private, voluntary, non-racist, and scientifically up to date, it may also inform such current reproductive genetics practices as prenatal and preimplantation genetic testing.
That is not to assert that a broad definition of eugenics that encompasses these policies and practices is correct, only that to claim that eugenics was killed by revelations of Nazi atrocities is to implicitly take sides in what is in fact an intense and ongoing debate.
Claims about Eugenicists’ Beliefs
The report’s authors define eugenics as a belief that undesirable traits “could be eliminated from the population” through selective breeding. Such a definition puzzlingly excludes all “positive” policies and practices, which ranged from free love to the Nazi “Lebensborn” program. Moreover, few if any eugenicists after about 1920 thought that traits could be eliminated from populations. Edward M. East was the first to realize that most deleterious genes would be hidden in apparently normal carriers, who would not be touched by programs of segregation and sterilization. That insight was made much more precise after acceptance of the Hardy-Weinberg theorem, which allowed geneticists to calculate the effects of selection against those affected. Thus, eugenicists understood that traits like “feeblemindedness” could never be eliminated from the population, and that even reducing their incidence would be a slower process than they had once hoped (though they considered that project worthwhile).
Particularly puzzling is the inclusion of abortion in a list of policies meant to restrict breeding by the unfit (p.6). The claim that American eugenicists promoted abortion in the service of ridding the world of undesirables is now commonplace on right-wing antiabortion websites, blogs, and magazines and was central to Justice Clarence Thomas’s concurring opinion in the 2019 case of Kristina Box, Indiana v Planned Parenthood. Thomas’s claim that eugenics and abortion were linked from the start was denounced by a raft of historians, who know that, for multiple reasons, prominent American eugenicists had almost nothing to say about abortion and that what they did say was generally highly critical. Thus, according to the Eugenics Catechism issued by the American Eugenics Society in 1926: “Abortion is murder and no eugenist advocates it except to save the life of the mother.” Interviewed by the Washington Post, historian and lawyer Paul Lombardo said: “I’ve been studying this stuff for 40 years, and I’ve never been able to find a leader of the eugenics movement that came out and said they supported abortion.” Why the ASHG would want to give credence to this influential but discredited claim is a mystery.
The Characterization of H.J. Muller
The most egregiously distorted commentary concerns H.J. Muller, who is presented simply as a critic of eugenics. According to the authors of the report: “While some ASHG presidents embraced eugenic ideals and practices, others were critical of eugenics based on its reliance on racism and coercive practices. In 1932, H.J. Muller (ASHG President, 1948), criticized the eugenics movement during the Third International Eugenics Congress, stating that it was ‘the naïve doctrine that the economically dominant classes, races, and individuals are genetically superior.’ In the preface to the first issue of the American Journal of Human Genetics, Muller continued to criticize eugenics for its purpose of ‘translating biological prejudice into action,’ by promoting classist and racist ideals that have no basis in genetics.” This is true as far as it goes but is also markedly one-sided and misleading.
Throughout his life, Muller was a passionate advocate of the need to control human evolution. His sympathetic biographer, Elof Carlson, notes that eugenics was “the leitmotif of Muller’s life.” Muller was also, especially in the 1920s and ‘30s, a critic of some aspects of eugenics under capitalism. But it is worth noting that even in his famous 1932 critique, The Dominance of Economics over Eugenics, from which the report quotes, Muller wrote: “That imbeciles should be sterilized is of course unquestionable.” And indeed, as noted earlier, at that time few if any scientists would have dissented from that comment.
Perhaps the best-known American proponent of “Bolshevik” eugenics, Muller held that only in a society not stratified into classes – as he believed was true of the Soviet Union and hoped would eventually be true of the United States – could the effects of nature and nurture be separated, and a truly efficacious eugenics program implemented. In 1925, he authored a eugenic manifesto, Out of the Night (finally published in 1935), in which he proposed a program for the mass insemination of women with sperm of men superior in intellect and character, a program that he argued would rapidly raise the level of the whole population. Emigrating to the Soviet Union in 1934, he tried and failed spectacularly to interest Josef Stalin in his proposal and ended up fleeing the country. But in the 1960s, he resurrected a version of that proposal — now called “germinal choice” — to emphasize its voluntary character. His 1949 presidential address to the newly-founded ASHG, titled Our Load of Mutations, argued that an ever-increasing load of deleterious mutations would ultimately destroy the human race as we know it. To counter this degeneration, Muller outlined a scheme where the most burdened 3% of population would voluntarily refrain from reproducing. Thus, Muller’s views illustrate the difficulty of dividing individuals into two mutually-exclusive groups, eugenicists and their critics. Muller was both, as were many of his scientific colleagues.
Why Did It Take So Long?
The report itself makes no new significant contributions to the history of eugenics. The role of ASHG and its leadership in eugenics has been well documented for over 30 years. Why has it taken so long for ASHG to acknowledge this history? One could argue that the time was now ripe for such a reckoning – after all, social justice occupies a large space in the current public dialogue. But that does not explain why the ASHG’s involvement in eugenics has largely been ignored until now. It’s not like the published history was obscure or written in abstruse scholarly lingo. Much of the work in the field is highly readable and readily available through search engines and on library’s shelves. It’s a pity that the ASHG report does not address the question of why it took the organization so long to officially acknowledge this history.
Our critique of the ASHG report is not simply a matter of correcting minor historical details. Although the society is to be commended for making an effort to come to grips with its past, much of its eugenics narrative is dated and simplistic. Without a more complete and nuanced understanding of this history, ASHG cannot truly face its past.
Every girl under supervision, we know where she works, who her friends are, and how she puts in her time….While the girls are in the hospital, we grade her mentally, and make a detailed social investigation… Her mental grading helps us in determining what she can do… We are locking up just as many feeble-minded girls as we can. – Katharine Ostrander, Michigan State Board of Health, Director of Social Services (1919)
I recently became aware of a little known chapter in 20th century American history known as The American Plan, a chapter so creepy it could have been written by Margaret Atwood. While it is not directly connected to genetic counseling, the usual focus of this blog, as you will see it does intersect with eugenics. I feel it is shocking enough that it should be brought to the attention of the blog’s Good Readers; I suspect that many will be as stunned and surprised as I was. Most of what I have to say is drawn from Scott W. Stern’s 2018 book The Trials of Nina McCall – Sex, Surveillance, and the Decades-Long Plan To Imprison “Promiscuous” Women. Please note that in the posting I am using the historical vocabulary of that time period to capture the zeitgeist of America in the first part of the 20th century.
The US entry into the First World War resulted in the drafting of nearly 3 million men into the military. Draftees were administered, among other things, an IQ test and a physical exam for social diseases, as sexually transmitted infections (STIs) were euphemistically labeled at the time (even the US Surgeon General was not allowed to say “syphilis” on a radio broadcast). The results were alarming – a substantial number of draftees had a very low IQ and a high incidence of social diseases. We looked like a nation whose men were sex-crazed morons (“moron” was a supposedly objective scientific category based on low IQ score). Perhaps many readers are thinking “Well, yeah, men haven’t changed much in the last 100 years”.
Military and political leaders were concerned that the US fighting force would be defeated by its own diseases. To combat social disease the US government enacted The American Plan, based on similar plans from European countries. Some readers may be familiar with the cheesy posters warning soldiers in both World Wars of the dangers of venereal diseases but these smile-inducing graphics belie a dark side to some of the strategies employed by The American Plan. In an attempt to “protect” the troops from syphilis and the like, a range of laws and policies on the federal, state, and local levels were enacted that gave authorities and even some civilian entities almost blanket permission to arrest, isolate, examine, treat, and reform anyone suspected of spreading social diseases. Although the initial focus was intended to be communities near military camps, it soon spread to many towns and cities throughout the country, regardless of their proximity to military facilities. Every state and hundreds of cities and towns passed nearly identical versions of American Plan laws.
Essentially, any woman suspected – not convicted – of being a prostitute, engaging in “promiscuous behavior,” premarital sex, or other “suspicious behavior” could be forced to undergo an invasive pelvic exam, almost always by a male physician. If the physician decided that the the person had evidence of a a social disease, they could be confined to an institution – a jail, a hospital, a “reformatory,” depending on local conditions. Whatever building or camp was used, the women were incarcerated, plain and simple. Once incarcertated they were forced to undergo largely ineffective, painful, and toxic treatments with a mercury- or arsenic-based regimen. This even though diagnosis was rarely definitive unless the person had flagrant disease; indeed, some women were diagnosed as being “slightly infected,” whatever that means. For good measure, many were also given IQ tests, and if they scored low enough they could be forced to undergo sterilization under some state eugenic laws. There was also a profit motive to incarcerating women; the Federal Government provided money to the states, and states passed the funds on to local authorities, with the amount depending on how many women were detained.
The policy was not limited to brothels and known prostitutes, who in fact usually had a low incidence of social diseases. Women of any age were forced into the program, including young teens and even pre-teens. It is astounding what could be labeled as a “suspicious behavior.” One woman was detained because a vengeful former boss reported her as sexually suspect after she quit her job. Another was detained after she volunteered as a witness to a car theft. Another was detained because she was on a date with a man who was drinking alcohol. Think about this. A woman might be flirting with a couple of guys in a dance hall or soda shop or go out for a drink on her own, or just be walking down the street in Anytown, USA in a “suspicious” manner and she could be forced to undergo a painful pelvic exam by a physician, confined to a treatment center for an indefinite period based on faulty testing and disease criteria, and then made to endure painful, debilitating and largely ineffective treatment until such time that the authorities had decided that she was cured and socially reformed. These incarcerations helped shape the modern American women’s carceral system, which currently has nearly a quarter million women within its walls.
It was felt that if women were reformed they would not return to their former loose life styles. Reform usually meant making them clean, cook, sew, and perform other activities – mostly to maintain the institutions where they were being incarcerated – that were thought be be appropriate for proper women. Authorities had the power to hold the women for days, weeks, or months until such time as it was decided that they were deemed medically and socially fit to re-enter society. Even after release, women could be required to check in with institutional directors for permission if they wanted to move, get a job, or even to get married. Some directors asked employers to monitor released inmates’ behavior and report suspected relapses.
The American Plan continued to be actively enforced for ~30 years until the end of WWII and the advent of antibiotic treatment, though there are reports of abuses until the 1960s (in 1965, the then 18 year old writer and radical feminist Andrea Dworkin was forced to undergo a painful pelvic exam under New York’s American Plan law when she was arrested at an anti-war demonstration). Not to worry anybody, but these laws are still on the books in most states and cities.
Black women, Native American women, immigrant, and Latinx women were disproportionately singled out. Non-white women were said to have the racial characteristics of excessive promiscuity and – according to the Surgeon General of the United States! – to be anatomically susceptible to spreading social diseases. The laws were written as largely gender-neutral but men were only rarely singled out, and then usually just treated rather than detained for a prolonged period. The laws glossed over how men can transmit social diseases to other men; homosexuality was not something to acknowledge or discuss and, besides, it was already illegal in most states.
Because many records have been destroyed, the exact number of women subjected to this practice is not known, but at minimum it involved tens of thousands of women. Despite all this enforcement, the architects and enforcers of The American Plan were never able to demonstrate that it was effective in lowering the incidence of social diseases.
The American Plan was not some dark government secret known only to an elite few insiders. It was widely reported and supported in newspapers and politicians of all bents, including Presidents, condoned it. Supporters – men and women alike – could be found across the political spectrum but there was particularly strong support among Progressives and liberals – the American Civil Liberties Union, the American Bar Association, Eleanor Roosevelt, Earl Warren (who would go on to become a liberal Chief Justice of the US Supreme Court), the League of Women Voters, to name a few. Some of these supporters criticized some specifics of the American Plan but they were not opposed to The American Plan itself. At the other end of the spectrum, Eliot Ness, he of The Untouchables, was actively involved in carrying out the plan at one point, as was J. Edgar Hoover and the FBI. They all pretty much thought they were doing good for society and helping women. Many of the key players in developing and carrying out The American Plan also subscribed to eugenic beliefs and were members of eugenics societies. A source of consistent and significant financial support for many of the activities, beyond governments, was John D. Rockefeller, Jr., and the Rockefeller Foundation (the Rockefellers also helped fund the Eugenics Record Office). Even when law suits were brought by women who had been incarcerated, the decisions sometimes supported a woman’s claims in a few cases but the legal validity of The American Plan itself was never questioned by the courts.
The primary non-governmental agency driving The American Plan was the American Social Hygiene Association (ASHA). Formed in 1913 with Rockefeller funding, the ASHA essentially crafted the details of The American Plan, provided expert advice to the government, employed undercover agents in cities to hunt out suspicious locations and field workers who would work with local police in coordinating arrests, and crafted model legislation that was adopted almost verbatim by most states. The organization also pushed for enforcement of American Plan laws beyond primarily protecting soldiers to protecting the general public. ASHA has since changed its name and is now called the American Sexual Health Association, and its activities and goals are quite different and perhaps more noble than those of its predecessor. However, its website makes no acknowledgement of this shameful history and has only this to say about its past:
“ASHA was founded as the American Social Hygiene Association in 1914 by a group of public health reformers committed to attacking an undesirable social condition–venereal disease, or VD–that they believed could be improved through medical and educational means. The shame and reluctance to talk about sexuality was now weakened enough so that the public was at least generally aware of the dangers posed by VD. This was the first social marketing effort to mix physical and moral fitness for prevention of VD.”
I am in no position to speak for the ASHA but if I were a member I would want my organization to be more honest, open, and reflective about its past.
I am reluctant to draw lessons from history and I am hesitant about judging the past through the lens of the present. With such widespread and enthusiastic support for The American Plan, if we were alive then many of us might have been swept up by the social currents of the times and supported it in some fashion, just like many of us would probably have embraced some aspects of eugenics. We are not morally superior to our ancestors and we are all products of our times. That being said, this was a gross injustice carried out in the name of “doing good.” It needs to be more widely known and subjected to scholarly investigation and a national dialogue, at the very least.
When you are so convinced that you are doing good it can blind you to your actions’ downsides. As I’ve written about before, genetic counselors are particularly susceptible to “do-goodism.” What looks progressive to one generation can look awfully repressive to another generation. When we seek to do good, we should do so with humility, an eye to history, and a keen awareness that when we try to do good we can wind up doing a lot of bad.
Unrelated to the above posting, I recently had a thirst for a dose of spirituality, a thirst perhaps driven by the existential wear and tear of the last few years. I am not a religious person – I am pretty much a we-are-all-star-stuff kind of person – but I do derive a deep satisfaction from contemplating the magic of life and the incomprehensible complexity of the universe. Which got me to thinking of the Indigenous Canadian singer Buffy Sainte-Marie’s 1969 song “God Is Alive, Magic is Afoot.” The lyrics are taken from a section of the poet Leonard Cohen’s novel Beautiful Losers. As far as I know, Leonard Cohen never recorded it as a song. Incidentally, Buffy Sainte-Marie’s music was unofficially blacklisted in the US for a period because of her anti-war activities and her involvement with the Native American political movement. Honestly, the song doesn’t make much cognitive sense to me, but it does make intuitive sense. In particular, the closing lines always give a jolt to my sense of wonder:
And mind itself is magic coursing through the flesh And flesh itself is magic dancing on a clock And time itself, the magic length of God
In Part 1 and Part 2 of this three part post, I described the continuity of explicitly eugenic goals in post-WWII genetics as illustrated by some aspects of the history of the American Society of Human Genetics (ASHG). Here I follow these eugenic threads up to the modern day to help us understand the complicated and at times antagonistic relationship between geneticists and people with disabilities, their families, and their advocates. I pick up the story with the introduction of amniocentesis into clinical practice.
It is probably not a historical coincidence that “genetic amniocentesis” began to flourish once safe, legal abortion became available in the US and other countries in the 1960s and 1970s (amniocentesis had been performed for therapeutic reasons and for monitoring fetal lung maturity and Rh incompatible pregnancies for some time prior). In the 1970s, cell culturing techniques and cytogenetic G-banding allowed reliable prenatal detection of fetal karyotypes. Prenatal testing was initially made available to pregnant women who were 35 or older. The story that is told – our collective memory – is that this age cutoff was chosen because at age 35 the probability of an unbalanced karyotype in the fetus was greater than the miscarriage rate of the procedure. In fact, the primary reason that this cutoff was chosen was economic cost-benefit – the cost-savings by preventing births of children with Down syndrome outweighed the cost of the procedure and lab work. Or, as the authors from a 1973 article in The Lancet more bluntly put it:
“We are less certain about the balance and costs [of amniocentesis] at current rates of screening the whole pregnant population. But is a detailed estimate of the costs required? The lifelong care of severely retarded persons is so burdensome in almost every human dimension that no preventive program is likely to outweigh the burden.”
As each new form of prenatal diagnosis was introduced into clinical practice – maternal serum screening for neural tube defects, chorionic villus sampling, ultrasonography – the scope of conditions considered for prenatal screening expanded, as did the number of pregnant women “eligible” for testing. For example, alpha-fetoprotein (AFP) screening was introduced to detect spina bifida and anencephaly and then broadened when it was discovered that low maternal serum AFP was linked to fetal Down syndrome, trisomy 18 and other aneuploidies and genetic conditions. Detection rates continued to rise as additional analytes (e.g. hCG, estriol) were incorporated into testing. Ultrasonography was initially seen as a tool to measure fetal growth, verify viability, and to identify multiple gestations. It soon became a diagnostic and screening tool for detecting neural tube defects, then Down syndrome, and eventually many uncertain, minor, and profound fetal anomalies. Targeted carrier screening for genetic conditions enriched in certain populations such as Tay-Sachs disease among Ashkenazi Jews grew to include ten or twenty conditions, and now covers hundreds of rare genetic conditions, regardless of ancestry.
Up until the 1990s, most studies that tried to measure the success of genetic counseling focused on reproductive decision making and the impact on the incidence of disabilities. Thus, prenatal testing continued the historical thread of the overarching clinical concerns of medical geneticists that the gene pool was unhealthy and that disability was a medical and familial tragedy as well as an economic drain to be avoided. Compared to counseling patients to make the “right” reproductive decisions, prenatal testing was a more direct tool for avoiding disability and its associated costs. You might counter-argue that not all women choose to have an abortion when faced with an abnormal prenatal test result. Although there is wide variability in termination rates when Down syndrome is detected prenatally (<50% t0 >90%), estimates suggest that prenatal screening in the US has resulted in about a 1/3 reduction in the prevalence of Down syndrome. Other studies show that the ultimate effect of carrier screening is to prevent the birth of children with genetic conditions.
This expansion in prenatal testing occurred with minimal input from people with disabilities, their families, or their supporters. Or input from too many others outside of the genetics and obstetrics communities. No careful weighing of ethical and social values, no seeking of diverse viewpoints. Pretty much any time a new test was shown to be clinically valid or an old one was improved, it was incorporated into clinical practice, a trend that accelerated once genetic testing became big business. Offering genetic testing to all pregnant women for a whole bunch of conditions, well, there’s gold in them thar’ hills.
I know that the view from inside the clinic is very different. Women faced with a positive prenatal test result make difficult, highly situated, emotionally difficult decisions that have little to do with concerns about the health of the gene pool or reducing the population frequency of genetic conditions. But the view from outside the clinic yields a different picture, one in which prenatal testing can look like an existential threat. In addition, people with disabilities get no palpable benefit from prenatal screening, and, tellingly, very little research has been done that tries to demonstrate medical or psychological or developmental benefits to prenatal testing. With rare exception, we are not even trying to show that prenatal testing is helpful beyond allowing the option of termination, even if we claim – with little proof – that it can help prepare a family for the birth of a child with a disability. Advertising for prenatal tests typically pitch the product as a way of ensuring “healthy babies.”
Bias against people with disabilities is not limited to prenatal clinics. It also manifests in genetics clinics where patients and families come for diagnosis and management of congenital and genetic conditions. What, you say? No way. Medical geneticists and genetic counselors are being helpful. We are figuring out what their medical problems are and helping them manage, adapt to, and live with them. We fight and advocate for them.
Yeah, that’s true and we damn well better be doing that stuff. I never met a genetics professional who wouldn’t charge into Hell for their patients. But. A patient visit to a genetics clinic can feel like entering a wunderkammer, a Cabinet of Curiosities, where they are cataloged for their freakishness and pinned in the glass case of a journal article or clinic note. We put them under a clinical microscope to parse out the ways they are different in excruciating detail – the length and shape of their philtrum, the set of their ears, the distance between their pupils, the gap between the first and second toes. Their DNA is analyzed in nano-fine detail in search of pathogenic variants that set them apart from the rest of us. Their rich family histories are reduced to circles and squares that we blacken and mark with death slashes. In effect, clinicians are (unintentionally) doing everything they can to show how patients are different from the clinicians. Geneticists may not be blatant ableists, but they can unintentionally reinforce systemic ableism.
Even the psychological aspect of genetic counseling – what we like to think makes us the ethical antithesis to eugenics – is historically steeped in prejudice against disability. As the historian Marion Schmidt has demonstrated, the history of psychotherapy around disability is rooted in negative stereotypes. Psychotherapists’ theories were based on the assumption that cognitive and physical disability produces unique psychological disabilities for patients and their families. When psychotherapeutic techniques were incorporated into genetic counseling, it was to help families work through the emotional trauma induced by having a “defective child” so the family could ultimately make “logical choices.” For example, Arthur Falek, the director of the first psychiatric genetics department at Emory University, in a chapter on psychological aspects of genetic counseling in a 1977 genetic counseling text, wrote “lack of guidance and realistic planning in families with genetic disorders can lead to disastrous results.” Or as Steven Targum wrote in a paradigm-shifting 1981 article on psychotherapy in genetic counseling “With the advent of prenatal diagnosis and screening programs to determine carrier status, prospective genetic counseling programs have become a reality. Such counseling may avert much unwanted human suffering. The psychotherapeutic considerations discussed in this paper may be applied to prospective parents who need to anticipate the impact of a defective child on them.”
It’s no wonder that people with disabilities might look at geneticists with a wary eye. Viewed with their lens, we’ve been working to reduce their numbers and label them as disappointments to society and their families, even as we paradoxically advocate for them. Sometimes when we are working to do good we can do bad. It is so deeply rooted in our history and our practice that we have a difficult time seeing it. There are parallels here with White people’s attempts to support Black lives that has often served to reinforce systemic racism. This criticism is difficult for us to accept in much the same way that those who run diversity training programs have found that White people who profess to be non-racist have a hard time accepting that their thoughts, words, and deeds can negatively impact people of color. And, like Blacks in America, people with disabilities have suffered from discrimination in housing, medical care, employment, voting, and education. Laws may grant basic rights to ethnic minorities and people with disabilities, but they still have to fight tooth and nail to get those laws enforced.
I am not claiming to be a spokesperson for people with disabilities. I am not in a position to present their views, which may vey well differ from mine. Rather, I am using a historical narrative to try to understand why some people with disabilities may be ambivalent and distrustful of clinical geneticists and genetic counselors. There have been plenty of articles written about these matters, plenty of speakers at conferences, and course work in training programs. That’s all good, but more concrete actions need to be taken. We could conduct more studies on whether there are benefits to prenatal screening beyond pregnancy termination. We can hold more robust and diverse discussions to develop guidelines for deciding which conditions to incorporate into prenatal and carrier screening that are more measured, respectful, and ethically balanced. We need to teach a more honest assessment of our history. We should understand and respect our past but we shouldn’t honor ethically flawed practices like eugenic sterilization by naming awards after their advocates. When we are criticized we need to react receptively, not defensively. We should be as dedicated to these goals as we are to fighting for racial equality. Amen.
A few weeks ago in this space, drawing on the research of others, I wrote about how geneticists have created a collective memory of eugenics in which they put all the “bad” eugenics behind us after World War II and moved on to the enlightened modern era. I discussed how in fact notable historical figures Franz Kallmann, William Allan, and C. Nash Herndon actively espoused eugenic policies from the 1940s through the 1960s. Here, in Part 2, I highlight more connections between the American Society of Human Genetics (ASHG) and eugenics to make it clear that support for eugenic policies and beliefs was common among geneticists. Kallmann, Allan, and Nash were not a lone trio of eugenic stragglers who were still mired in a questionable ethical past.
Let’s start by following the money. Post-WWII geneticists may have claimed to reject eugenics, but they had no problem with accepting money from eugenically oriented funding sources. As Nathaniel Comfort notes in The Science of Human Perfection, eugenic organizations were tapped to fund the establishment of the American Journal of Human Genetics. Part of the funding for the journal was arranged by the eugenicist Frederick Osborn through the Association for Research in Human Heredity, which was formerly the Eugenics Research Association of the Eugenics Record Office in Cold Spring Harbor, NY. The remaining funds were supplied by Wickliffe Draper’s Pioneer Fund, established in 1937 to be one of the primary funders of eugenic research (it continued to support racist and eugenic research into the 21st century). There was even discussion of using a picture of Charles Davenport or Barbara Burks (a researcher in psychiatry who spent several years at the Eugenics Record Office and who has a fascinating biography) for the journal’s frontispiece. During the 1950s, Charles M. Goethe, another wealthy eugenics benefactor, sent small annual checks to the ASHG treasurer to purchase gift memberships for students with high IQs and thus good breeding stock “while he [the student] accepts the responsibility of fathering at least 3 children.”
Post-WWII geneticists took the racist and elitist policies espoused by the most notorious conservative eugenicists and transformed them into a crusade dedicated to reducing human suffering and ensuring the “health of the gene pool.” Instead of vitriol directed at immigrants and their “defective germ plasm,” geneticists fretted that the human gene pool was degenerating, i.e., our genetic load, as the result of a trifecta of forces including existing mutations that were already part of the human breeding pool, new mutations induced by ionizing radiation due primarily to the proliferation of nuclear weapons, and the relaxation of natural selection in humans due to improvements in medical care and living conditions that allowed people with illness-predisposing mutations to survive and reproduce. They sometimes argued that the very future of humanity hinged on keeping the gene pool healthy, along with cost-savings from eliminating mutant genes. Even James Neel, a strong critic of conservative eugenics, titled his 1994 autobiography Physician To The Gene Pool. If the gene pool wasn’t sick or threatened, presumably it would not need a physician to tend to it.
Of the three factors alleged to be threatening to increase the genetic load, medical geneticists could exercise some measure of control over the existing mutation frequency. They argued that if parents were properly counseled then high risk couples would refrain from having children with genetic disorders, thus reducing the impact of genetic disease on the population. Conversely, low risk couples would have more children, improving the overall gene pool. You didn’t have to make people refrain from reproduction by force or sterilization. You just need to wisely educate them and let them see the light on their own.
There was widespread support among the genetics community for this reframed and reformulated eugenics. Below are illustrative quotes by other ASHG presidents (some of which come from a 1997 paper by science historian Diane Paul):
Herman Muller (ASHG President, 1949; Nobel Prize Winner, 1946): “It is shown that the only means by which the effects of the genetic load can be lightened permanently and securely is by the coupling of ameliorative techniques, such as medicine, with a rationally directed guidance of reproduction. In other words, the latter procedure is a necessary complement to medicine, and to the other practices of civilization, if they are not to defeat their own purposes, and it is in the end equally as important for our health and well-being as all of them together.
Sheldon Reed (ASHG President 1956): “People of normal mentality who thoroughly understand the genetics of their problems, will behave in the way that seems correct to society as a whole.”
Curt Stern (ASHG President, 1957): “In the course of time…. the control by man of his own biological evolution will become imperative…”
James F. Crow (ASHG President, 1963): “How far should we defend the right of a parent to produce a child that is painfully diseased, condemned to an early death, or mentally retarded?”
Bentley Glass (ASHG President, 1967; President of the American Association for The Advancement of Science, 1969), writing in 1971: “Whether advice or compulsion is to be used by society in these cases would seem to rest with the severity of the condition. If the prospective defect is one that would leave a baby a hopeless imbecile or idiot throughout life and a ward on society, or cause it to be born without limbs, or make it otherwise gravely defective, avoidance of parenthood ought to be mandatory.”
You might argue angels-dancing-on-a-pinhead that these statements are not eugenic philosophies sensu strictu. Maybe you could make a half-convincing argument to that effect. But that sounds like denial to me. Davenport, Harry Laughlin, and the other pre-WWII eugenicists would have recognized and supported any of the above pronouncements.
But let me be clear. This is not a simple story of ethically challenged geneticists pushing an intentionally evil agenda. These were good people from across the political spectrum who believed they were trying to do good for their patients and society. Just like us. And, just like us, they recognized the psychological and emotional impact of genetic disorders on patients and families. As the historian Marion Schmidt notes, Franz Kallmann, former member of the German Society for Racial Hygiene who advocated sterilizing the families of patients with psychiatric disease, urged genetic counselors to understand patients’ “fears and hopes, defenses and rationalizations” and to develop an “empathetic understanding of the motives and capacities of the person who comes for help.” Foreshadowing 21st century calls for genetic counseling to be conducted as a form of psychotherapy, Kallmann viewed genetic counseling as “short-term psychotherapy aimed at reducing anxiety and tension,” albeit with the ultimate goal of producing “a well-planned family [that was] indispensable as a biological, social and cultural unit from a eugenic standpoint and a unique source of pride and stability for the individual.”
I don’t mean to imply that ASHG is or was ever an unethical, sinister eugenic organization. However, as the primary professional organization for geneticists, ASHG’s history reflects the history of the philosophy, ethics, and practice of medical genetics. As much as we may want to ignore that history and keep it safely behind us, it is embedded, if you will, in the DNA of the profession.
In the third and final part of this series of postings, I will trace these eugenic threads up to current day practice to help us better understand the complicated and at times antagonistic relationship between medical genetics and people with disabilities, their families, and their advocates.
We may be in the midst of a critical historical turning point in social justice. The confluence of the Black Lives Matter movement, #MeToo, and the COVID pandemic has led to the re-evaluation and re-surfacing of abuses, injustices, biases, and plain old hatred. Jimi Hendrix’s take on The Star Spangled Banner seems to be the right musical score for the moment.
Perhaps then this is a good time for geneticists to look in our own closet and assess some skeletons that we know are there but seem to prefer to ignore or downplay. A good place to start is with the American Society of Human Genetics (ASHG), one of the oldest and largest professional human genetics organizations.
So what is my gripe with ASHG, an organization I admire and respect? It all started when I used an internet search engine to look for the ASHG website to obtain information about the 2020 annual conference. Here is what popped up on my screen:
What caught my eye was the name right there in bright blue in the next to last line – Franz Josef Kallmann. Kallmann – more accurately, co-founder of ASHG, not founder – served as ASHG president in 1952. He is well known for his pioneering research in psychiatric genetics and who during his lifetime was respected by colleagues and a mentor to many.
“…in regard to the recessivity and belated manifestations of the schizophrenic disposition, it is desirable to extend prevention of reproduction to relatives of schizophrenics… and above all to realize this intervention for those undesirable from the eugenic point of view at the beginning of their reproductive years” (italics added).
Ironically, Kallman, who was raised Jewish but who converted to Protestantism, was forced to flee Nazi Germany because of his ancestry. Even Rüdin couldn’t protect him. Once in America, Kallman, uh, reframed his life story by portraying himself as a victim of the Nazis. Nonetheless, he continued to support radical eugenic policies. As he wrote in a 1938 article, after fleeing Germany:
“From a eugenic point of view, it is particularly disastrous that these [schizophrenic] patients not only continue to crowd mental hospitals all over the world, but also afford, to society as a whole, an unceasing source of maladjusted cranks, asocial eccentrics, and the lowest types of criminal offenders.”
Kallmann remained a lifelong proponent of eugenics and maintained collaborations with Nazi colleagues through the 1940s. He served on the Board of Directors of the American Eugenics Society from the mid-1950s until 1965, the year he died. Furthermore, his views on homosexuality were on par with his views of mental illness, as demonstrated by this quote from an article he authored in the American Journal of Human Genetics in 1952:
“The urgency of such work [on genetic aspects of homosexuality] is undeniable as long as this aberrant type of behavior continues to be an inexhaustible source of unhappiness, discontentment, and a distorted sense of human values.”
I don’t think you can cite that statement as an example of implicit bias.
Kallmann was not an outlier when it comes to individuals associated with ASHG who espoused such policies and beliefs. Two others in particular stand out – William Allan and his protege C. Nash Herndon, who established the country’s first medical genetics clinic in North Carolina and made significant contributions to medical genetics as a clinical practice and as a profession. Herndon was president of ASHG in 1955. In 1961, ASHG paid homage to Allan when they created the William Allan Award in Allan’s memory (he died in 1943) “to recognize substantial and far-reaching scientific contributions to human genetics, carried out over a sustained period of scientific inquiry and productivity.”
Herndon and Allan also played an active role in North Carolina’s robust eugenic sterilization program in the 1940s and 1950s (sterilizations continued through the 1980s). Nathaniel Comfort, in his book The Science of Human Perfection, notes that Herndon described the program as a “gradual, but systematic effort to eliminate certain genetically unfit strains from the local population“ of Forsyth County. Herndon actually performed some of these sterilizations himself. The program itself was fairly aggressive. As Herndon wrote:
“We would see the targeted parents and children there [North Carolina Baptist Hospital]. I.Q. tests were run on all the children in the Winston-Salem public school system. Only the ones who scored really low were targeted for sterilization, the real bottom of the barrel, like below 70.”
Allan, on the other hand, was less concerned about “feeble-mindedness,” which he felt did not have a significant hereditary basis. But traits with a strong genetic basis were a different story. Writing to Herndon in 1942 he declares: “Good old retinitis pigmentosa we can to go town on, since it is 100% hereditary.”
In addition to being president of ASHG, from 1955-1959 Herndon served as the president of the Human Betterment League of North Carolina, a branch of the Human Betterment Foundation (a national organization devoted to, among other things, preventing mental deficiency through sterilization) and president of the American Eugenics Society, an organization founded in 1926 by Madison Grant and Harry Laughlin, two of the most extreme American eugenicists.
Let me ask you ASHG membership and leadership, is Kallmann the name you want to represent your organization every time someone uses a search engine to find your society’s home page? Do you want an award named after someone, no matter how prominent, who so actively pushed for eugenic sterilization? Do you at least want to have something on your website that addresses these matters? As a non-member, it’s not for me to tell you how to handle this, but don’t you think you should do something? Yes, I know I am judging the past by today’s standards. I am sure that Kallmann, Herndon, and Allan thought they were doing good, not bad; they probably never thought to ask for forgiveness. History and people are complicated. No one is a saint, not even the saints. No doubt in 50 years someone will look back with a similarly critical eye on how the genetic profession practices today. But advocating for mandatory sterilization in Nazi Germany and North Carolina and expressing professional disdain for homosexuality crosses ethical lines in any era. And don’t tell me that because it happened some 60 or 70 years ago, it no longer matters. We don’t live in the past but the past will always live with us.
None of this information is new. All of this has been written about before by scholars and researchers. I have been reading about it for decades. None of it required delving into obscure archives or interviewing historical figures. You can pretty much find it all with a couple of hours of PubMed and Google searches. It’s out there for anyone to see. Perhaps out of ethical convenience, though, the inaccurate story that we like to tell is that all that bad eugenics stuff took place before World War II, everyone got horrified by the Nazi atrocities, the underlying genetics was bad, then everyone saw the light, and all that bad stuff was behind us to serve as a moral lesson for future generations. Nice story, but wrong on the details. Many prominent geneticists remained active proponents of eugenic policies for decades after the war. They just didn’t call it eugenics or portrayed it as kinder, gentler eugenics. Or just ignored it altogether. It’s time to stop ignoring.
The DNA Exchange 
