As it turned out, BiDil failed to realize market expectations. Projected prescriptions and sales to African American patients did not materialize, and the marketing campaign was disbanded in 2008. The company that marketed the drug was forced to downsize and, in 2009, was sold to another company.37
The drug's focus on African Americans implied a genetic basis for its effectiveness divided along supposed racial boundaries. Prominent geneticists blasted this implication, arguing that if variation in the efficacy of BiDil had a genetic basis, research identifying associations between the drug's efficacy and specific variants in DNA would be a much more reliable way to target those who would most benefit, rather than using self-identified racial classification as the criterion. According to J. Craig Venter, one of the foremost scientists and business leaders in genome-based medicine, and his colleagues, “to attain truly personalized medicine, the scientific community must aim to elucidate the genetic and environmental factors that contribute to drug reactions and not be satisfied with a race-based approach.”38 As Howard Brody and Linda M. Hunt of Michigan State University point out, there were financial disincentives that discouraged a for-profit enterprise from doing so:
To what extent would the identification of a specific genetic trait, correlated with positive therapeutic response, be likely to expand that market? As long as there is some probability that the results of that further research could cause the market to shrink, even if by a small amount, there is every incentive for the company to decline to undertake that research.39
Brody and Hunt further argue that self-identified racial categories can be considered valid medical criteria not on the basis of genetics but, rather, for social and cultural reasons:
Family physicians, well schooled in the biopsychosocial model of health, ought especially to be concerned about an approach to research that de-emphasizes the search for social and cultural factors in disease….
For example, hypertension, one of the major risk factors for congestive heart failure, is more common within the African American community; and chronic social stress has been implicated as a possible contributor to the development of hypertension. Diet, exercise, and other environmental variables are also possible mediators.40
In the end, BiDil turned out to be another instance of controversial attempts at racially based medicine. Although touted as the first case of personalized medicine—meaning genetically targeted treatments and interventions—in reality, it was not. Truly personalized medicine associates treatments with specific variants that can be directly identified in a person's DNA irrespective of racial classification.
As a more recent example, a June 2014 article with the title “Differing Effects of Metformin on Glycemic Control by Race-Ethnicity” received considerable attention in the popular press. It shows a more pronounced benefit of the diabetes medication metformin for African Americans than for European Americans based on self-identification. Although readers might assume the cause for this difference is genetic, the authors of the article point out in its concluding sentence that any such assumption is thus far inconclusive: “studies assessing the effect of genetic ancestry, rather than self-reported race-ethnicity, may help clarify whether there is a heritable component to population group differences in metformin response.”41
For years, the majority of DNA tests available for use in medicine targeted single variants, and the tests were expensive, often not covered by insurance. But this scenario has dramatically changed. The cost of testing for DNA variants has fallen so precipitously that it is now readily affordable to large numbers of people. For example, tests that simultaneously detect thousands of variants currently cost less than $100 and are available without a physician's prescription. Several companies offer such tests via the Internet. A person simply makes the order, paying by credit card, and a kit arrives in the mail. DNA is provided simply by swabbing the inside of the cheek or spitting into a tube, and the sample is returned by mail to the company.
After the analysis is complete, the test results are made privately available to that person online. Ancestry informative markers reveal the most probable composition of the individual's ancestry, which often is not exclusive to a particular region but is a mix of DNA segments inherited from different parts of the world. Some tests also reveal variants associated with health, including those strictly associated with genetic conditions such as cystic fibrosis, sickle-cell disease, lactose intolerance, and numerous others. The tests may also reveal statistical associations with genetic variants that confer greater-than-average susceptibility to, or protection against, other conditions, such as type 2 diabetes, alcohol dependence, coronary heart disease, Alzheimer's disease, Parkinson's disease, susceptibility to various types of cancer, and many others. The FDA, however, issued strict rules that substantially limit what health information a company can directly provide to consumers based on DNA variants, and the rulings may end up being challenged in court.42 The raw data, including all tested variants, remain available so that health professionals who are knowledgeable regarding associations of health with DNA variants can interpret the results. Unfortunately, many physicians are not sufficiently versed in the details of how specific DNA variants are associated with susceptibilities to provide accurate information. Instead, to obtain accurate and current information, patients must consult with clinical geneticists—physicians who are specialized in medical genetics.
Such testing is rapidly opening the door to true personalized medicine: treatments and interventions fine-tuned to one's genetic constitution. This approach can, at least in theory, make medicine more successful and cost-effective. Currently, the focus of genetic testing is on early diagnosis and intervention rather than specific fine-tuning of medications. By identifying predispositions to diseases before they become serious, and implementing enhanced screening for early diagnosis and preventative measures, such information can help people and their physicians to effectively manage healthcare. For example, a physician may determine that someone who carries a variant conferring increased susceptibility to colon cancer should have colonoscopies earlier and more frequently than those who have average or lower-than-average genetic predispositions to colon cancer. Famously, a number of women who discovered through DNA tests that they carry variants conferring increased susceptibility to breast cancer have chosen to undergo preventative mastectomies.43
People often fear genetic testing because of its potential for abuse, and history is replete with instances when genetic information was used to deny or restrict employment or health insurance.44 When the Human Genome Project officially began in 1990, its leaders projected that one of many offshoots of the project would be a dramatic increase in genetic testing. Recognizing how serious discrimination on the basis of genetic tests had been in the past, they formed a committee to study the ethical, legal, and social issues and devoted 5 percent of the project's funding to this effort. Among the several recommendations by this committee was legal protection against genetic discrimination. The committee crafted proposals that eventually became the Genetic Information Nondiscrimination Act (GINA). In spite of broad support in both houses of Congress, the legislation languished unimplemented for thirteen years, from 1995 through 2008, in large part because of opposition from corporations and insurance companies that might experience financial losses through restrictions on their ability to manage risk. Finally, the legislation made its way through the House of Representatives, passing overwhelmingly in April 2007 by a vote of 414 to 1. After delays postponed its consideration by the Senate, it finally passed almost a year later by a vote of 95 to 0. President George W. Bush signed it into law on May 21, 2008.45
GINA specifically prohibits discrimination for employment or health insurance on the basis of genetic information. However, it does not exclude discrimination for other forms of insurance, such as life or disability insurance. Large numbers of people are still reluctant to undergo genetic testing out of fear that the information may be used for discrimination in spit
e of current legal protections.
A long-standing concern with genetic tests is the past history of and current potential for racial discrimination. Any discrimination that stigmatizes or denies opportunity to people who carry a genetic condition that is more prevalent in people with a particular ancestry inevitably constitutes a form of racial discrimination, even if indirect, because incidence of the condition and geographic ancestry may be correlated. And, as we are about to see, health is not the only issue with the potential for indirect racial discrimination. In the following chapter, we tackle the most controversial subject that has confronted the intersection of science and race: claims that intelligence differs genetically between racially defined groups.
In 1981, Stephen J. Gould published one of the most significant works of his illustrious career: a book titled The Mismeasure of Man.1 It reviews how scholars from the eighteenth through the twentieth centuries attempted to quantify intelligence through verbal and written tests, as well as measurements of physical characteristics such as facial features or brain size. The book reproduces caricature-like drawings from the eighteenth century that depict humans from Africa as resembling gorillas and chimpanzees: oddly exaggerated heads highlight the physical characteristics that purportedly predispose people to criminality, hand-altered photographs distort the facial features of people labeled as feebleminded, and rich convolutions in the brain of a famous mathematician imply that the brain of a genius is physically distinguishable from the less convoluted brain of a person from Papua (indigenous Papuans, at the time, were considered to be savages). Gould's book makes it obvious that these historical drawings were serious attempts to portray physically measurable features as reliable indicators of intellectual superiority or inferiority. Although atrociously humorous to us now, they serve Gould's thesis as examples of how “man” has historically been “mismeasured.” Gould even addresses his choice of the seemingly gender-biased term man for the title by reminding us that nearly all such studies done prior to the mid-twentieth century were conducted by men, and that most of those who conducted them considered the intelligence of women to be inherently inferior to that of men.
By the time Gould published this book, he was already well known as a popular Harvard professor (shortly thereafter named the Alexander Agassiz Professor of Zoology), his specialty evolutionary biology. He was famously outspoken and controversial among scientists for novel interpretations of the fossil record. For most people, however, he will long be remembered as one of the most eloquent science writers and speakers of his day. His popular books on evolution were best sellers, often with clever titles like The Panda's Thumb, Hen's Teeth and Horse's Toes, The Flamingo's Smile, and Bully for Brontosaurus. I own two copies of The Mismeasure of Man. One is the original 1981 hardbound version, and the other is the 1996 paperback revised and expanded edition.2 On the cover of the latter is a prominent statement: “The definitive refutation to the argument of The Bell Curve.”
This statement refers to the 1994 bestselling book The Bell Curve: Intelligence and Class Structure by Richard Herrnstein and Charles Murray. It is a thick book, more than eight hundred pages, brimming with seemingly abundant statistical detail regarding research on intelligence and its relationship to a wide range of socioeconomic, political, educational, and biological factors—among them, race.3 As the Edgar Pierce Professor of Psychology at Harvard, Herrnstein worked not far from Gould. In spite of their physical proximity, the two could hardly have been further apart on the subject of race and human intelligence. Herrnstein had written a 1971 article in Atlantic Monthly titled “IQ,” which addressed the issue of race and intelligence from the point of view that genetic differences between races partially determine between-race differences in average IQ scores. Gould was outspokenly opposed to this view.
This proposition—that differences in intelligence have a predominantly genetic basis—became known as biological determinism or hereditarianism. Following from it is the notion that genetic constitution largely determines social and economic status. This latter proposition is known as social Darwinism (a misnomer, since Darwin neither invented nor promoted it). Gould defines it as “a specific theory of class stratification within industrial societies, particularly to the idea that a permanently poor underclass consisting of genetically inferior people had precipitated down into their inevitable fate.”4 Some proponents of social Darwinism presume that white supremacy and racial segregation are natural and inevitable, a consequence of genetic predisposition for intelligence.
The response to hereditarian ideas regarding race in Herrnstein's article was vehement. According to neuropsychologist Christopher Chabris, Herrnstein's “lectures were filled with protesters, and his speeches at other universities were canceled, held under police guard, or aborted with last-second, backdoor escapes into unmarked vehicles. Death threats were made.”5
Herrnstein and Murray were not lone voices in support of hereditarianism and its social and political implications, nor were they plowing new ground. A significant proportion of material in The Bell Curve is based on the work of Arthur Jensen, a professor of educational psychology at the University of California, Berkeley; a prolific researcher; and an author of numerous articles and books. Although Jensen had published much on the psychology of intelligence during the 1950s and ‘60s, a 1969 article titled “How Much Can We Boost IQ and Scholastic Achievement?” in the Harvard Educational Review established much of his fame and notoriety.6 The article's most controversial conclusion is the hereditarian claim that genetic predisposition is responsible for a major proportion of differences in intelligence—including those between racial groups—and that because of strong genetic predisposition, social programs designed to overcome such differences are destined to fail. A 2005 article that Jensen coauthored with psychology professor J. Phillipe Rushton of the University of Western Ontario (also a strong proponent of hereditarianism) aptly summarizes the main points of Jensen's 1969 article:
(a) IQ tests measure socially relevant general ability; (b) individual differences in IQ have a high heritability, at least for the White populations of the United States and Europe; (c) compensatory educational programs have proved generally ineffective in raising the IQs or school achievement of individuals or groups; (d) because social mobility is linked to ability, social class differences in IQ probably have an appreciable genetic component; and tentatively, but most controversially, (e) the mean Black–White group difference in IQ probably has some genetic component.7
Gould, an outspoken critic of the rising tide of hereditarianism, denounced The Bell Curve's “claim for inherited racial differences in IQ—small for Asian superiority over Caucasian, but large for Caucasians over people of African descent,”8 as well as Jensen's ideas:
This argument [in The Bell Curve] is as old as the study of race. The last generation's discussion centered upon the sophisticated work of Arthur Jensen (far more elaborate and varied than anything presented in The Bell Curve, and therefore still a better source for grasping the argument and its fallacies)….9
From the day The Bell Curve hit store shelves, it fanned the flames of what already was one of the most incendiary and polemical controversies of the late twentieth century: Were racial differences for average IQ scores due largely to genetics rather than environment? Or, in other words, are some races intellectually superior to others by virtue of their genetic constitution? In line with Jensen's earlier research, The Bell Curve seemed to say yes, albeit a highly qualified yes.
Its publication prompted an avalanche of responses—supportive, critical, and mixed—from natural and social scientists, philosophers, reviewers, and journalists. For example, in support of Herrnstein and Murray, Christopher Caldwell of American Spectator wrote, “The Bell Curve is a comprehensive treatment of its subject, never mean-spirited or gloating…. Among the dozens of hostile articles that have thus far appeared, none has successfully refuted its science.”10 By contrast, Lucy Hodges, writing for Times Higher Education, highlighted
what many critics viewed as The Bell Curve's promotion of social Darwinism:
The authors [Herrnstein and Murray] recommend doing away with affirmative action on the grounds that it poisons race relations by promoting unqualified blacks. They want to drop remedial education which they say does not work and spend the money educating talented students that the economy needs. They want to change immigration policy to prevent the influx of less intelligent people, and end welfare and other government benefits which they think encourage women with low IQs to have babies.”11
Some of the most stinging criticism was from Gould:
The book is a manifesto of conservative ideology, and its sorry and biased treatment of data records the primary purpose—advocacy above all. The text evokes the dreary and scary drumbeat of claims associated with the conservative think tanks—reduction or elimination of welfare, ending of affirmative action in schools and workplaces, cessation of Head Start and other forms of preschool education, cutting of programs for slowest learners and application of funds to the gifted (Lord knows I would love to see more attention paid to talented students but not at this cruel price).”12
Dozens of articles appeared within months of its release, and two books, The Bell Curve Debate and The Bell Curve Wars, containing collections of essays and historical context, were quickly assembled and published the following year. Other books soon followed. Polemics and misinformation abounded, prompting educational psychologist Linda Gottfredson of the University of Delaware to draft a full-page editorial published in the Wall Street Journal titled “Mainstream Science on Intelligence,” cosigned by fifty-two of her professional colleagues (including Jensen and Rushton), although others chose not to sign when invited. It was later reprinted with a contextual history and bibliography in the journal Intelligence.13
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