Tag Archives: Eugenics

Taking counsel (Review of Stern, Telling Genes)

I just read Alexandra Stern’s fine new history of genetic counseling, Telling Genes (Johns Hopkins, 2012; $40 cloth/$25 paper/ $15 Kindle). Though Alex is my friend, I review her book here because her subject relates so closely to the themes of Genotopia. Alex and I played leapfrog around some of the same archives as we researched. Telling Genes and The Science of Human Perfection are complementary—and I mean that in the nicest possible way. With that warning of possible conflict of interest, I want to examine her history of genetic counseling with the same “critical and sympathetic” analysis (3) that she applies to the history of genetic counseling itself.

Like medical genetics, the history of genetic counseling is intimately bound to that of eugenics. And like medical geneticists, genetic counselors have been trying to shake off these eugenic associations for many years. Stern, though highly sympathetic to today’s genetic counselors, won’t let that historical firewall stand. Unflinchingly, she drives home the eugenic connections in every chapter.

One of the most contentious issues in this history is where the history begins. Almost all genetic counselors today are Master’s level professional GCs. A Whig history of genetic counseling, then, might argue that the history began in 1969, with the founding of the first Master’s degree program in genetic counseling at Sarah Lawrence College. In contrast, a radical interested in showing the continuities with the darkest side of eugenics, might argue that the history began in 1910, with the founding of the Eugenics Record Office at Cold Spring Harbor. ERO staff advised people about many of the same things—likelihood of disease, of perpetuating family traits, of a particular racial parentage—that GCs still do today.

Stern takes a middle ground, beginning the history in 1941, with the founding of three independent research and counseling institutes for medical genetics: the Heredity Clinic in Ann Arbor, MI; the Family Record Office and Department of Medical Genetics at Wake Forest, and the Dight Institute of Human Genetics, in Minneapolis. These were conceived as Eugenics Record Offices attached to medical schools; collectively, they are known as the heredity clinics. At one of them (the Dight), the term “genetic counseling” was coined, by director Sheldon Reed, in 1947. Beginning here with these hybrid institutes—part ol’ time eugenics office, part modern genetic counseling facility— allows Stern considerable interpretive room. She allows the ambiguity and the tensions between individual and population to hang in the air, creating that kind of awkward pause in a conversation that makes a reflective person stop and think.

Timeline of genetic counseling

A (very) rough chronology of major events in the history of genetic counseling.

Stern does not, however, narrate the history chronologically. Rather, the history unfolds in a series of oscillations and resonances, in a series of analytic chapters organized by central concepts and problems in genetic counseling. Taking a thematic rather than chronological approach buys her a great deal of analytical substance, but it sacrifices narrative continuity. The arc of genetic counseling over the second half of the twentieth century doesn’t emerge until the end, and the reader must do the work of pulling out the major events and arranging them chronologically. Although the first chapter is titled “History,” it covers mainly the debate in the 1970s over the professionalization of the field. This is the only significant misstep in the book. A brief narrative account of the field—from the establishment of the Heredity Clinics in the early 1940s through the neo-eugenic 1950s, the emergence of genetic screening in the ‘60s, with the first Master’s level program at the end of the decade, through the profesionalization of the 70s and ‘80s, would have set the stage better for her later thematic analysis. I read the book with two graduate students, and both of them felt the lack of a chronological narrative to be a hindrance.

The remaining chapters cash in marvelously, often brilliantly, on the thematic organization. Chapter 2, “Genetic Risk,” looks at Huntington Disease, tracing the “shifting risk calculus” of the disease “as it crossed the transom of genetic testing and genetic counseling” (31). Stern notes that in lieu of effective therapies, more information and more precise diagnostics do not lessen—and perhaps increase—apprehension about the disease. Chapter 3, “Race,” focuses on questions of the population and the individual. Thinking in terms of populations, she argues, carries many tacit racial considerations into human genetics: “Population was never a neutral biogeographic term.” A harrowing and perceptive section on the methods of “racial matching” at the Dight Institute of Human Genetics in Minnesota and the Heredity Clinic in Michigan excavates a remarkable series of notebooks from the director, Sheldon C. Reed. Stern observes Reed simultaneously advocating publicly a liberal stance toward miscegenation as a solution to racial tension and advising adoptive parents on the goodness of fit of mixed-race children into a white family. Reed used an implicit “one drop rule,” At Michigan, James V. Neel—one of the pioneers of noneugenic medical genetics—also classified babies, according to a sort of Pantone series of skin tone. Stern allows this ambiguity to hang in the air, neither damning nor defending their inconsistency. These medical-genetic pioneers helped bring the field forward, but they were flawed, and Stern makes no apologies for them.

Chapter 4, on disability, focuses on the evolution of Mongolism to Down syndrome. In the 1940s, she shows, genetic counseling was built around a code of prevention (97). Gradually that code shifted to focus more on adaptation and adjustment, as families and patients’ rights groups have pressed for the acknowledgment of the disabled. These groups have understandably expressed concern over reproductive technologies and prenatal genetic screening, perceiving mandatory screening laws as an attack on the very existence of the disabled.

In chapter 5, “Women,” Stern relates the history of the founding of the Sarah Lawrence program in genetic counseling. Established in 1969 by Melissa Richter, it was brought to maturity by Joan Marks, who ran the program from Richter’s death in 1974 until 1998. Though mythologized as a moment when genetic counseling at last threw off its eugenic shackles, here too eugenic concerns mingle with sure-footed movements toward autonomy and informed consent. Richter, for all her sunny optimism and prescience, was a “neo-Malthusian,” couching her program proposal in the language of population explosion and mounting genetic “load,” Hermann J. Muller’s term for the accrual of mutations. Richter’s signal contribution was in establishing women as the foundation of modern genetic counseling—a startling echo (unnoted by Stern) of the long tradition of female “field workers” at the Cold Spring Harbor Eugenics Record Office in the teens and twenties. The medical community fought bitterly against the establishment of Master’s level genetic counseling, but the persistence of Richter and others persuaded physicians to cede jurisdiction over this critical but “softer” aspect of genetic medicine.

Chapter 6, on ethics, focuses on the shift from directive disease-centered eugenic counseling to nondirective, client-centered counseling. Here Stern takes us back to before the Heredity Clinics, to the psychologist Carl Rogers, who coined “nondirectiveness” in developing a new approach toward counseling victims of violence and abuse. She brings forward much fascinating and new material here, although her inference that Lee Dice and other Heredity Clinicians were borrowing directly from Rogers is circumstantial and, to me, not entirely persuasive. However, her analysis of the erosion of the concept of nondirectiveness is fascinating. She shows, surprisingly, that “nondirectiveness” has had a relatively short life. It didn’t enter the genetic counseling lexicon until the 1980s, and already by the 2000s it had begun to recede as the discipline’s gold standard, in favor of a more nuanced discussion about the strengths and limits of autonomy and consent.

The final chapter shifts categories to look at a recent methodological development: prenatal genetic diagnosis and its uneasy marriage with genetic counseling. This provides her with a vehicle for examining developments in genetic counseling since the 1970s. Her analysis of the rise of amniocentesis is a valuable contribution to literature by Rayna Rapp, Ruth Schwartz Cowan, and Robert Resta, among others. A conclusion briefly examines current-day practices and, in an original analytical move, closes by considering the possibility that the history of genetic counseling may be drawing to a close. As genomic medicine works to treat all disease as genetic in origin, the concept of genetic disease is gradually eroding. If genetics dissolves into biology, what exactly will genetic counselors counsel about? Stern closes with a call for genetic counselors to examine their history as a means of ensuring their future.

Yet if the juggernaut of geneticization continues unabated, there will always be a need for a medical-genetic middleman—or middle-person. Someone with serious genetic training but also skilled in psychology, ethics, and education. Someone whose time is not metered in quarter-hour increments (and billed in C-notes). Telling Genes is unflinching in tracing our hereditarian past, but sympathetic toward and highly supportive of those compassionate professionals who guide the rest of us into an ever more genetic future. It should be widely read, by genetic counselors, by clinicians, by future parents, and by anyone who is or knows someone who is affected by genetic disease.

New findings suggest scientists not getting smarter

Certain critics of rigid genetic determinism have long believed that the environment plays a major role in shaping intelligence. According to this view, enriched and stimulating surroundings should make one smarter. Playing Bach violin concertos to your fetus, for example, may nudge it toward future feats of fiddling, ingenious engineering, or novel acts of fiction. Although this view has been challenged, it persists in the minds of romantics and parents–two otherwise almost non-overlapping populations.

If environmental richness were actually correlated with intelligence, then those who live and work in the richest environments should be measurably smarter than those not so privileged.  And what environment could be richer than the laboratory? Science is less a profession than a society within our society–a meritocracy based on an economy of ideas. Scientists inhabit a world in which knowledge accretes and credit accrues inexorably, as induction, peer review, and venture capital fuel the engines of discovery and innovation. Science has become the pre-eminent intellectual enterprise of our time–and American science proudly leads the world. The American biomedical laboratory is to the 21st century what the German university was to the 19th; what Dutch painting was to the 17th; the Portuguese sailing ship to the 16th; the Greek Lyceum to the minus 5th.

According to this view, then, scientists should be getting smarter. One might measure this in various ways, but Genotopia, being quantitatively challenged, prefers the more qualitative and subjective measure of whether we are making the same dumb mistakes over and over. So we are asking today: Are scientists repeating past errors and thus sustaining and perhaps compounding errors of ignorance? Are scientists getting smarter?

Yes and no. A pair of articles (12) recently published in the distinguished journal Trends in Genetics slaps a big juicy data point on the graph of scientific intelligence vs. time–and Senator, the trend in genetics is flat. The articles’ author, Gerald Crabtree, examines recent data on the genetics of intelligence. He estimates that, of the 20,000 or so human genes, between 2,000 and 5,000 are involved in intelligence. This, he argues, makes human intelligence surprisingly “fragile.” In a bit of handwaving so vigorous it calls to mind the semaphore version of Wuthering Heights, he asserts that these genes are strung like links in a chain, rather than multiply connected, as nodes of a network. He imagines the genes for intelligence to function like a biochemical pathway, such that any mutation propagates “downstream”, diminishing the final product–the individual’s god-given and apparently irremediable brainpower.

IQIQ

Beginning in 1865, the polymath Francis Galton fretted that Englishmen were getting dumber. In his Hereditary Genius (1865) he concluded that “families are apt to become extinct in proportion to their dignity” (p. 140). He believed that “social agencies of an ordinary character, whose influences are little suspected, are at this moment working towards the degradation of human nature,” although he acknowledged that others were working toward its improvement. (1) The former clearly outweighed the latter in the mind of Galton and other Victorians; hence Galton’s “eugenics,” an ingenious scheme for human improvement through the machinations of “existing law and sentiment.” Galton’s eugenics was a system of incentives and penalties for marriage and childbirth, meted out according to his calculations of social worth.This is a familiar argument to students of heredity. The idea that humans are degenerating–especially intellectually–persists independently of how much we know about intelligence and heredity. Which is to say, no matter how smart we get, we persist in believing we are getting dumber.

Galton was just one exponent of the so-called degeneration theory: the counter-intuitive but apparently irresistible idea that technological progress, medical advance, improvements in pedagogy, and civilization en masse in fact are producing the very opposite of what we supposed; namely, they are crippling the body, starving the spirit, and most of all eroding the mind.

The invention of intelligence testing by Alfred Binet just before the turn of the 20th century provided a powerful tool for proving the absurd. Though developed as a diagnostic to identify children who needed a bit of extra help in school–an enriched environment–IQ testing was quickly turned into a fire alarm for degeneration theorists. When the psychologist Robert M. Yerkes administered a version of the test to Army recruits during the first world war, he concluded that better than one in eight of America’s Finest were feebleminded–an inference that is either ridiculous or self-evident, depending on one’s view of the military.

These new ways of quantifying intelligence dovetailed perfectly with the new Mendelian genetics, which was developed beginning in 1900. Eugenics—a rather thin, anemic, blue-blooded affair in Victorian England, matured in Mendelian America into a strapping and cocky young buck, with advocates across the various social and political spectra embracing the notion of hereditary improvement. Eugenics advocates of the Progressive era tended to be intellectual determinists. Feeblemindedness–a catch-all for subnormal intelligence, from the drooling “idiot” to the high-functioning “moron”—was their greatest nightmare. It seemed to be the root of all social problems, from poverty to prostitution to ill health.

And the roots of intelligence were believed to be genetic. In England, Cyril Burt found that Spearman’s g (for “general intelligence”)—a statistical “thing,” derived by factor analysis and believed by Spearman, Burt, and others to be what IQ measures—was fixed and immutable, and (spoiler alert) poor kids were innately stupider than rich kids. In America, the psychologist Henry Goddard, superintendent of the Vineland School for the Feebleminded in New Jersey and the man who had introduced IQ testing to the US, published Feeblemindedness: Its Causes and Consequences in 1914. Synthesizing years of observations and testing of slow children, he suggested–counter to all common sense–that feeblemindedness was due to a single Mendelian recessive gene. This observation was horrifying, because it made intelligence so vulnerable–so “fragile.” A single mutation could turn a normal individual into a feebleminded menace to society.

As Goddard put it in 1920, “The chief determiner of human conduct is the unitary mental process which we call intelligence.” The grade of intelligence for each individual, he said, “is determined by the kind of chromosomes that come together with the union of the germ cells.” Siding with Burt, the experienced psychologist wrote that intelligence was “conditioned by a nervous mechanism that is inborn, and that it was “but little affected by any later influence” other than brain injury or serious disease. He called it “illogical and inefficient” to attempt any educational system without taking this immovable native intelligence into account. (Goddard, Efficiency and Levels of Intelligence, 1920, p 1)

This idea proved so attractive that a generation of otherwise competent and level-headed reserchers and clinicians persisted in believing it, again despite it being as obvious as ever that the intellectual horsepower you put out depends on the quality of the engine parts, the regularity of the maintenance you invest in it, the training of the driver, and the instruments you use to measure it.

The geneticist Hermann Joseph Muller was not obsessed with intelligence, but he was obsessed with genetic degeneration. Trained at the knobby knees of some of the leading eugenicists of the Progressive era, Muller–a fruitfly geneticist by day and a bleeding-heart eugenicist by night–fretted through the 1920s and 1930s about environmental assaults on the gene pool: background solar radiation, radium watch-dials, shoestore X-ray machines, etc. The dropping of the atomic bombs on the Japanese sent him into orbit. In 1946 he won a Nobel prize for his discovery of X-ray-induced mutation, and he used his new fame to launch a new campaign on behalf of genetic degeneration. The presidency of the new American Society of Human Genetics became his bully pulpit, from which he preached nuclear fire and brimstone: our average “load of mutations,” he calculated, was about eight damaged genes–and growing. Crabtree’s argument thus sounds a lot like Muller grafted onto Henry Goddard.

In 1968, the educational psychologist Arthur Jensen produced a 120-page article that asserted that compensatory education–the idea that racial disparities in IQ correlate with opportunities more than innate ability, and accordingly that they can be reduced by enriching the learning environments of those who test low–was futile. Marshaling an impressive battery of data, most of which were derived from Cyril Burt, Jensen insisted that blacks are simply dumber than whites, and (with perhaps just a hint of wistfulness) that Asians are the smartest of all. Jensen may not have been a degenerationist sensu strictu, but his opposition to environmental improvement earns him a data point.

In 1990, Richard Herrnstein and Charles Murray published their infamous book, The Bell Curve. Their brick of a book was a masterly and authoritative rehash of Burt and Jensen, presented artfully on a platter of scientific reason and special pleading for the brand of reactionary politics that is reserved for those who can afford private tutors. They found no fault with either Burt’s data (debate continues, but it has been argued that Burt was a fraud) or his conclusion that IQ tests measure Spearman’s g, that g is strongly inherited, and that it is innate. Oh yes, and that intellectually, whites are a good bit smarter than blacks but slightly dumber than Asians. Since they believed there is nothing we can do about our innate intelligence, our only hope is to “marry up” and try to have smarter children.

The Bell Curve appeared just at the beginning of the Human Genome Project. By 2000 we had a “draft” reference sequence for the human genome, and by 2004 (ck) “the” human genome was declared complete. Since the 1940s, human geneticists had focused on single-gene traits, especially diseases. One problem with Progressive era eugenics, researchers argued, was that they had focused on socially determined and hopelessly complex traits; once they set their sights on more straightforward targets, the science could at last advance.

But once this low-hanging fruit had been plucked, researchers began to address more complex traits once again. Disease susceptibility, multicausal diseases such as obesity, mental disorders, and intelligence returned to the fore. Papers such as Crabtree’s are vastly more sophisticated than Goddard’s tome. The simplistic notion of a single gene for intelligence is long gone; each of Crabtree’s 2,000-5,000 hypothetical intelligence genes hypothetically contributes but a tiny fraction of the overall. If you spit in a cup and send it to the personal genome testing company 23AndMe, they will test your DNA for hundreds of genes, including one that supposedly adds 7 points to your IQ (roughly 6 percent for an IQ of 110).

Thus we are back around to a new version of genes for intelligence. Despite the sophistication and nuance of modern genomic analyses, we end up concluding once again that intelligence is mostly hereditary and therefore also racial, and that it’s declining.

Apart from the oddly repetitious and ad hoc nature of the degeneration argument, what is most disconcerting is this one staring implication: that pointing out degeneration suggests a desire to do something about it. If someone were, say, sitting on the couch and called out, “The kitchen is sure a mess! Look at the plates all stacked there, covered with the remains of breakfast, and ick, flies are starting to gather on the hunks of Jarlsberg and Black Twig apples hardening and browning, respectively, on the cutting board,” you wouldn’t think he was simply making an observation. You’d think he was implying that you should get in there and clean up the damn kitchen. Which would be a dick move, because he’s just sitting there reading the Times, so why the heck doesn’t he do it himself. But the point is, sometimes observation implies action. If you are going to point out that the genome is broken, you must be thinking on some level that we can fix it. Thus, degeneration implies eugenics. Not necessarily the ugly kind of eugenics of coercive sterilization laws and racial extermination. But eugenics in Galton’s original sense of voluntary human hereditary improvement.

And thus, scientists do not appear to be getting any smarter. Despite the enriched environs of the modern biomedical laboratory, with gleaming toys and stimulating colleagues publishing a rich literature that has dismantled the simplistic genetic models and eugenic prejudices of yore, researchers such as Crabtree continue to believe the same old same old: that we’re getting dumber–or in danger of doing so.

In other words, sometimes the data don’t seem to matter. Prejudices and preconceptions leak into the laboratory, particularly on explosive issues such as intelligence and/or race, regardless of how heredity is constructed. Plenty of scientists are plenty smart, of course. But rehashing the degeneracy theory of IQ does not demonstrate it.

The Science of Human Perfection

I’ve started a new page–it will stay in the header bar above–for my forthcoming book, The Science of Human Perfection: How Genes Became the Heart of American Medicine, due this summer from Yale University Press. The book is a history of the promises of genetic medicine, from the late 19th through the late 20th centuries. It shows how genetics went from being a backwater of agricultural science to the core of biomedicine. Eugenics, I find, was not a hindrance to genetics going medical, but the vehicle by which it went medical.

I’ve posted a link to the Preface, and will post news about it there as it comes in. Enjoy!