American Journal of Law & Medicine

Coding for change: the power of the human genome to transform the American health insurance system.

I. INTRODUCTION

Truthfully, we are fearfully and wonderfully made. -- Samuel J. Holmes

While science does advance steadily over time, occasionally a scientific breakthrough occurs that does not merely augment current scientific explanations and understandings, but instead radically redirects the focus of the scientific inquiry, fundamentally reconfigures our conception of our world and community, and threatens our existing social and moral conventions. We are currently experiencing such a scientific revolution, precipitated by advances in decoding our genetic make-up. (1) While the revolution began at least by 1952 with the discovery by James Watson and Francis Crick of the structure of the DNA molecule (2)--the molecule that contains our genetic information--the pace of the revolution has accelerated most rapidly in the last ten years. The engine for this change is the Human Genome Project.

The Human Genome Project (HGP) (3) is an international effort to decipher the contents of the human genome by sequencing all of the base pairs. Once these base pairs are sequenced, scientists can quicken the rate at which they can identify what genes code for which functions, when genetic variation results in the expression of a genetic disorder, and ultimately how to use this information not just to diagnose, but to prevent and cure genetic abnormalities. (4) The information unleashed by the HGP is changing the direction and focus of medical research, it is supporting and undermining long standing scientific assumptions and it is systematically deconstructing and reconstructing our social identities, our social priorities and our moral vision. (5)

With every new genetic breakthrough comes great apprehension that the information contained in the human genome and deciphered by the HGP will be used for ill. (6) The anticipated problems are legion and include the fear of genetic discrimination. While the phrase "genetic discrimination" has become ubiquitous in both popular and academic presses, the exact definition of the term, and the nature of the anticipated problem, remain unclear. Speaking generally, fears about genetic discrimination with respect to insurance seem to stem from concerns over an insurance company's consideration of a potential enrollee's genetic information in making coverage and premium setting decisions. (7) There is a consensus within the public and among health professionals that health insurers should not be able to use genetic information in making coverage determinations. (8) While health insurers have long relied upon family and applicant medical histories as well as demographic and health habit information in making coverage decisions, the use of genetic information seems to strike a different discordant chord with the public, and there are significant demands for new and different rules for genetic information. The policy preference for different rules for genetics than for other types of health information is coined "genetic exceptionalism." (9)

Treating genetic information differently, however, is the wrong decision. As this article suggests, the entry of the genome into the public stream of information should not give rise to genetic exceptionalism rules. Rather, it should be an occasion for the wholesale revision of the rules we already have. People fear--and abhor--insurance companies using genetic information in risk determinations because it offends their sense of fairness. While "discriminate" is defined as "to discern" or to "to distinguish by discerning or exposing differences" and even "to use good judgment," the definition that probably best reflects the way we typically use the term is "to make a difference in treatment or favor on a basis other than individual merit." (10) In the strictest sense, we all discriminate when we size up two different things and make a choice between them. We unfairly discriminate when we draw upon the wrong or inappropriate criteria in making our choice. That the public is concerned about genetic discrimination suggests that the public does not believe it is appropriate for an insurance company to consider one's genetic make-up in making its coverage determinations.

Insurance companies, however, rely on risk status all the time. What is different about genetic information? Perhaps people understand that a person's genetic make-up is not something they choose--it is not "their fault." Because we cannot control our genetic destiny, the theory goes, we should not be punished for our genetic make-up. Genetic discrimination is unfair because it penalizes people (by limiting their coverage options) not because of their actions or choices, but because of their immutable genotype. In other words, people are not sorted and awarded their fair dessert. If this sense of injustice is indeed what enervates the genetic exceptionalism movement, then we must not limit our scrutiny to the use of genetic information alone.

Genetic exceptionalism is on a collision course with itself. Genetic exceptionalists argue that we should draft special rules to govern situations in which genetic information plays a part in the allocation of valued goods--for instance, the use of genetic test results in insurance coverage. This is currently possible because we have only a few traits for which we have developed reliable genetic tests. Forbidding insurers from seeking genetic test results but still permitting them to ask questions about family history merely privileges some types of information over others, and does very little to solve the real problem--the underlying structure of risk-rated insurance.

This article seeks to do two things. First, it outlines the factors and players currently shaping our legal attitudes toward genetic information. Part II provides a background in genetics pertinent to insurance. Part III reviews the eugenics movement and charts how the eugenics legacy influences modern judicial rulings. Part IV describes the current regulatory structure that monitors the safety and effectiveness of genetic tests and the use (and abuse) of genetic testing information. Part V overviews state insurance regulation and the business of insurance. Second, this article argues that we should abolish risk-rated insurance for all health traits--not just traits for which there currently is a genetic test--and discusses some of the implications of this proposal. Part VI summarizes the genetic exceptionalism debate and offers a critique of genetic exceptionalism. Part VII argues for national community-rated insurance.

When the sands shift, the natural impulse is to rush to prop-up the tottering structure. After further pause, however, the wisdom of maintaining the old structure on a new foundation crumbles. Genetics promises to change how we practice medicine, how we allocate medical resources, even how we understand ourselves. This can be scary. But it can also be an opportunity to reexamine processes and assumed structures of fairness that systematically penalize people in their ability to afford quality healthcare. This is such an opportunity.

II. THE SCIENCE OF GENETICS

Every man beareth the whole stamp of the human condition. -- Montaigne

While genetic research initially suffered during the mid-part of this century due to its association with eugenics, (11) genetics is unquestionably a reputable scientific field today and is at the forefront of biomedical science. Although researchers cannot yet pinpoint the genetic origin of many expressed characteristics, it is clear that much of our biological make-up and personality has a genetic genesis.

A genetic abnormality refers to a mutation that alters a protein in such a way that the protein cannot function normally. There are roughly 5,700 known genetic disorders, approximately 300 of which are currently identifiable using genetic testing. (12) A genetic test (13) can determine whether a patient contains a normal or an abnormal copy or copies of a gene. Genetic testing is typically accompanied with genetic counseling because understanding the results of any genetic test may be complicated. Genes function in many different ways, and interpreting what it means clinically that a patient has a defective copy of a gene is difficult. For instance, having a defective copy may raise the chances of developing a certain conditions when certain environmental factors interact with the gene. (14) In other cases, the number of errors in a defective gene may indicate the severity or estimated onset of the condition. (15)

The terms defective and healthy gene, however, are somewhat misleading. When we look around a room we see incredible variability. For many genes, we expect variation and so terms like normal and defective lose meaning. There is no "normal" eye color; in fact we relish the variation. For other more complicated traits like musical ability, we celebrate the abnormality, the exceptional individual who can do musically what the rest of us cannot do normally. For other traits, a gene that departs from the typically expressed condition produces a condition that society recognizes as abnormal or diseased. It is in this context that we use terms like healthy and abnormal. Genetic abnormalities, then, refer to instances in which discrepancies in a gene result in compromised physical well-being. (16)

Genes control our biological destiny in different degrees. That a gene does not deterministically decree every trait is crucially important to any discussion of healthcare policy. While in some cases a single mutated gene may inescapably condemn someone to a disease, much of our genetic dance is much less choreographed. (17) Variations in genetic expression and predictability raise a range of issues related to medical underwriting in insurance. It is therefore important to understand the different types of genetic conditions. Some disabilities have a genetic origin and some do not. For instance, if someone suffers an accident and becomes a paraplegic, the paraplegia disability does not have a genetic origin. However, if someone suffers from early stage Huntington's Disease and cannot walk without assistance, the motor-function disability does have a genetic origin. For the purposes of insurance coverage, the origin of the disability does not matter. An insurance company either covers Huntington's Disease or does not. If the policy does cover Huntington's, the origin of the disability has no bearing. (18) For the purposes of insurance discrimination, however, the genetic origin of the disability may matter because it allows an insurer to have advance warning of the applicant's higher risk status.

An insurance company could discover a genetic abnormality in multiple ways. For instance, if the applicant has the test prior to applying for health insurance and is asked on her application to indicate if she has any genetic predispositions, she must disclose this information. Failure to disclose this information is fraudulent and vacates her policy. (19) Alternatively, because the genetic test may be expensive, (20) she may seek reimbursement for the genetic test. As a condition of reimbursement, the insurance company may require disclosure of the results. Thus, individuals who have a higher risk of disease development may face discrimination if the insurance company raises premiums based on the anticipated risk of higher costs. (21)

There are three types of genetic statuses that an applicant might present with to an insurer. First, some genetic conditions can be predicted with virtually universal certainty. For these "monogenetic" conditions, (22) the presence or absence of a gene creates a 100% certainty that the individual will develop a genetic condition. Individuals, however, may remain presymptomatic for many years. Testing for a monogenetic disorder is often referred to as "presymptomatic genetic testing."

Second, in some cases, a gene, or genes, may be involved with the expression of a trait, but different genes may react to environmental stimuli differently. (23) The specific mutation is necessary but not sufficient for the disease to develop because the gene has "incomplete penetrance," (24) or its pure presence lacks sufficient power to force phenotypic expression. In these "multifactorial" cases, (25) the genetic test results are only partially accurate with respect to future health status. The accuracy of the test results is referred to as "positive predictive value" (PPV).

To determine PPV, it necessary to perform clinical studies to determine how many people will develop the disorder for reasons other than the genetic explanation being tested. (26) In some instances, an individual may develop a condition because of a genetic predisposition, but someone else will develop that same condition because of high-risk behavior (consider a genetic predisposition to heart disease versus a low-exercise, high-fat and high-cholesterol regimen); in still other cases, an individual may develop a condition because of a genetic predisposition, but someone will develop that same condition for reasons that are yet not understood (consider breast cancer). Thus, making sense of genetic predispositions is difficult and in the vast majority of cases, genetic information provides only a blurry template of where we are headed and can in no way completely reassure us of our health nor condemn us to disease.

Finally, in other cases an individual carries one defective copy of a gene, but will suffer no ill effects because the "healthy" copy of gene will compensate. Thus, this person's own genetic expression--her phenotype--is spared because the healthy copy of the gene correctly codes for the necessary protein. This individual, however, does risk passing along the genetic defect to her child, and if her partner is also a carrier, they risk having a child with a genetic abnormality. Carrier status, then, typically raises issues involving prenatal testing, but it is possible that parents in this position would have some difficulty securing insurance if the insurer worried about the costs associated with a high-risk child.

For monogenetic and multifactorial testing, our discovery of genetic tests, however, far outpaces our ability to offer therapies for the genetic abnormalities. Thus, many genetic tests offer the prospect of a diagnosis with no clinical relief, leaving the individual to cope with impending illness and perhaps death well before she is symptomatic. (27) Despite the clinical uselessness of many genetic tests, the genetic testing business continues to expand. (28)

While many diseases and conditions are believed to have a genetic origin, scientists have only recently been able to prove so conclusively. The near completion of the HGP promises to end such uncertainty. Beginning in the 1980s scientists began to conceive of the idea of the HGP. (29) While initially a Department of Energy Project, the National Institutes of Health (NIH) soon began to collaborate, and in 1990, the HGP began with the publication of "Understanding Our Genetic Inheritance: The U.S. Human Genome Project. The First Five Years FY 1991-1995." (30) The HGP is an international endeavor to decipher the order of all of the DNA base pairs in an effort to identify and study every human gene. Armed with this information, researchers can more accurately predict the inheritance of genetic abnormalities and counsel potential parents accordingly; they can diagnose and catalogue additional genetic abnormalities; they can begin to determine the function and inter-relationship of genes; and they can begin to understand how and when mutated genes can and should be fixed.

Initially, the HGP was scheduled to be completed in 2005, but improved mapping techniques and competition from private researchers (31) increased the pace. On June 26, 2000 President Clinton, Prime Minister Tony Blair, Dr. Francis Collins of NIH and Dr. Craig Venter, head of Celera Genomics, announced that the entire human genome sequence had been successfully mapped. The completion of the initial mapping, while a major scientific breakthrough, is only a beginning. Scientists know the order of most base pairs, but they do not know the identity or function of most genes; they do not know how genes interact with one another or why human variation moved in specific directions; and they do not know what types of variations are harmless, salubrious or deadly. As one commentator quipped, "It is literally true that the only thing we know about some genes is that their malfunction causes a particular disease. This is a pitifully small thing to know about a gene." (32)

Despite the infant nature of genetic understanding, the public has become increasingly concerned about the power of this new information and worries that genetic information will be abused. In a CNN poll conducted contemporaneously with the announced completion of the HGP, 46% of respondents indicated that they "expected harmful results" from the HGP and 80% wanted to make sure that insurance companies could not gain access to genetic information about enrollees. (33) Perhaps in an effort to respond to public concerns that the HGP was an opened Pandora's box, President Clinton momentarily tempered his glowing remarks upon the completion of the HGP to add that "[a]s we unlock the secrets of the human genome, we must work simultaneously to ensure that new discoveries never pry open the doors of privacy. And we must guarantee that genetic information cannot be used to stigmatize or discriminate against any individual or group." (34) As with any powerful tool, policy makers will need to think thoughtfully about the appropriate uses for genetic information.

III. THE LEGACY OF EUGENICS

It is conceivable that when man undertakes to direct the evolution of his race, he may blunder badly. -- Abraham Myerson

Genetics as a science is inextricably connected with social and ethical concerns. (35) One reason Americans are so understandably concerned about unfair genetic discrimination and inappropriate and unethical applications of genetic information can be traced to the ways in which theories about heredity and genetics were used in the past to marginalize and abridge the rights of society's less desirable members. (36) While Charles Darwin may not have coined the phrase "survival of the fittest," evolutionary theory has been linked, almost from the beginning, with socially engineered strategies to maximize desirable groups and minimize or eradicate undesirable groups. This legacy of genetic determinism, bigotry and social control now acts like a corrosive guilt that pervades our thinking about genetics and distorts the possibilities we envision.

A. DARWINISM, MENDEL AND EARLY HEREDITARIAN THINKERS

Bigotry and oppression existed well before Charles Darwin published his revolutionary treatise. His observations of nature, however, provided powerful groups with the assumed objectivity of science as a neutral justification for their supremacy over less popular and weaker segments of society. While Darwin intended and understood his observations to be scientific and empirical, (37) they soon became part of a larger social theory that legitimized the categorization of human beings into groups that were destined to survive and groups that deserved to be eradicated or contained. As Mark Haller has noted, "eugenics was the legitimate offspring of Darwinian evolution, a natural and doubtless inevitable outgrowth of currents of thought that developed from the publication ... of The Origin of Species." (38)

Sir Francis Galton is credited with naming, defining and establishing the early eugenics movement. (39) Eugenics, a term he coined in 1883, originates from the Greek root of "good in birth" or "noble in heredity." (40) Darwin's work captivated Galton. While Darwin was reluctant to apply wholesale what he observed among animals to human beings, (41) Galton spent the vast remainder of his life studying human heredity. (42) Galton's view of heredity was deterministic and unsophisticated. (43) Giving virtually no credence to the environment or social conditions, he believed that a person's life absolutely reflected his genetic make-up. (44) Thus, successive generations of successful, intelligent and affluent citizens had entirely to do with genetics, and nothing to do with their access to education, shelter, sustenance and care. On the obvious inverse, society's weakest members would never be productive--even if all of the circumstances of their lives were changed--because they were inherently weak. The inherited social disadvantage was understood as inherited inadequacies.

While the American eugenics movement began in earnest with the foundation of the Eugenics Record Office at Cold Spring Harbor on Long Island in 1910, (45) interest in the heredity of socially undesirable traits perhaps first truly mobilized in 1874. In 1874, Richard Dugdale began his now famous history of the Jukes family. The Jukes pedigree was a catalogue of crime and dereliction. In the five to six generations Dugdale studied, eighteen Jukes maintained brothels, in excess of 200 had been on public assistance and over twenty-six had been convicted criminals. (46) Dugdale estimated that Jukes had cost society $1,308,000, (47) graphically illustrating both the propagation of undesirable traits and the drain of those traits on society.

While Dugdale believed that the environment interacted powerfully with heredity, (48) and thought that children of struggling families could be rehabilitated if removed from unhealthy surroundings, the Jukes became a rallying cry for the hereditarian school of thought's purely hereditary understanding of human success. (49) Hereditarians believed that the environment was virtually irrelevant in the course of human development and that people were purely and immutably an expression of their genetic make-up. (50) Additionally, hereditarians did not distinguish between inherited physical traits, such as height, from inherited behaviors, such as a criminal propensity. (51) Furthermore, hereditarians believed that children inherited a susceptibility to immoral and unintelligent behavior generally, but the manifestation of such propensity might differ. As one turn-of-the-century psychologist explained: "It must be recognized that it is not necessarily a specific neurosis that is transmitted." Rather, one inherits a "disordered arrangement of nerve tissue" that will manifest itself in a variety of ways "according to the degree of prepotency in the mingling of parental elements." (52) So, a child of a prostitute might inherit not lasciviousness but drunkenness, and the child of an idiot could inherit pauperism. (53) Thus, hereditarians targeted everyone who exhibited any type of undesirable characteristics and increasingly looked fatalistically at the ability of individuals to improve their station. (54)

The debate between environmentalists and hereditarians came to a stalemate until three scholars rediscovered Gregor Mendel's study of pea inheritance. (55) Mendel crossbred different varieties of peas and traced isolated traits over generations. His observations led him to determine the probability of inheritance. (56) Drawing on Mendelian genetics and Galton's eugenics, (57) hereditarians--or eugenicists as they would later be called--gained the upper hand in the debate.

B. FRUSTRATED EFFORTS AT REFORM

Confounded by the persistence of ill-health, immorality, poverty and nonproductivity among large degenerate (58) segments of the American population, terrified of being overrun by huge populations of poor and overwhelmingly non-Anglo-Saxon immigrants, and enthralled with heredity, lawmakers and social commentators increasingly began to call for a national mobilization of eugenic efforts. (59) With the victory of the hereditarians, social reform no longer focused on rehabilitation, and eugenicists became increasingly critical of traditional reform efforts that protected the interests of the degenerates.

 
   With our age-long liberalism and idealization of the dignity of man we may 
   be loath to admit a matter-of-fact view of the progress of man's evolution, 
   and of the somewhat backward and deficient standing in mental capacity of 
   the majority of men. We know that there are such beings as lunatics and 
   defectives, yet we dislike to admit that the majority of men and women are 
   comparatively only children in mental capacity and education. Still less do 
   we appreciate any possibility of attempting to breed a superman, or a class 
   of beings with improved mental capacity and physique.... The deliberate 
   breeding of a superman may yet be far beyond practical politics, but it is 
   high time that we began to attempt to weed out the dangerously numerous 
   troops of defectives, neurotics, and mentally diseased people, or at least 
   to endeavor to hinder their too rapid increase. (60) 

Thus, they characterized such traditional efforts as both contrary to evolution's tendencies because the fit helped the unfit persist, and as detrimental to society's advancement because degenerates sapped society's resources. (61) As one eugenicist quipped, "Civilization is making the world safe for stupidity." (62)

The hereditarian or eugenic movement was not concerned with eradicating individuals who were deemed less desirable, (63) but with containing the threat so that such traits would not be passed on to further generations. As Haller has noted, eugenicists believed in promoting institutions that could care for weaker elements and that "society had a responsibility to care for the dependent and delinquent but that society had, at the same time, a responsibility to see that such persons did not contaminate generations to come." (64) Thus, the eugenics movement fit well with the Progressive Era reforms that sought to care for society's less fortunate. (65)

Frighteningly, eugenics often had a rhetoric of compassion, perhaps because of their relation to the Progressives. (66) If hereditarians were right--and the vast majority of people were convinced that they were--then large segments of the population, through no fault of their own, were condemned to predetermined lives of misery and immorality. (67) While eugenicists were self-preservationists seeking to conserve social strength by minimizing dead weight, they were also motivated by a perverse sympathy for degenerates. (68) For instance, Henry H. Goddard, a leading eugenicist, advocated for a strict stratification of society that would sort people by intelligence (using the Binet test (69)) into environments catered to their ability.

 
   For the lowest grades, the simplest environment was, of course, the 
   institution. Here persons of limited capacity would find their lives 
   significantly improved ... for they would no longer have to engage in an 
   economic straggle for survival. Instead of being a burden, they might even 
   contribute to society by working (under supervision) at simple tasks.... Of 
   equal importance, society's future needs would be met as well, for through 
   strict policies of sexual segregation the feebleminded would finally be 
   prevented from passing their inferior inheritance on to any more 
   progeny.... Like children, those deemed mentally, and therefore socially, 
   inferior deserved loving care and protection. Like children, they also 
   ought to abrogate political, economic and sexual independence, for these 
   functions should be the province only of socially responsible adults. 
   According to Goddard's paternalistic sociology, paupers diagnosed as 
   "defective dependents" ought to be granted the social status of permanent 
   children. (70) 

It was not, then, inconsistent for a eugenicist reformer to work "one day on a committee that campaigned for tenement house reform and another day on a committee that worked for ... sterilization." (71) As if dealing with dying patients quarantined with a deadly disease, eugenicists sought to make the feeble as comfortable as possible, while containing the hereditary contagions.

As a result, states began to make concerted efforts to institutionalize the feebleminded and the insane, to curb illegitimate child bearing, to contain pauperism and to fight alcoholism. Social reformers observed the recurrence of feeblemindedness, pauperism, insanity and alcoholism in families, and their relationship to crime and extra-marital sex (72) but experienced little success in combating mental illness, in educating adults or improving the station of simple and disadvantaged women. (73) Reformers understood their lack of success not to be a reflection of inadequate methods, but because no amount of effort could combat heredity.

 
   Social workers seem to think that they can make useful citizens of the 
   degenerates by assisting them, an idea which eugenicists believe is false. 
   They can assist them somewhat but they cannot change them fundamentally any 
   more than they could make an English walnut out of a pig hickory. (74) 

The unlucky reformers understood their charges to be fundamentally unequal to their middle class respectable counterparts. Degenerates were defined by their failings, and only incidentally recognized as citizens with certain rights. As Samuel Holmes, an enthusiastic but tempered eugenicist remarked, "It is a cardinal principle of human biology that, with the exception of identical twins, all men are born unequal, whatever may be said concerning their freedom or their inalienable rights." (75) Reform, then, centered less on rehabilitating degenerates and more on their containment. (76)

C. APPLICATION OF HEREDITY TO SOCIAL ILLS

Now armed with a scientific pardon for their reform failures and a guiding theory to slowly eradicate undesirable traits, eugenicists set themselves to studying genetic inheritance in humans. By 1906, the American Breeders' Association created its Committee on Eugenics "to investigate and report on heredity in the human race" and to "emphasize the value of superior blood and the menace to society of inferior blood." (77) Even scholars who understood the complexity of human heredity were optimistic: "Man's evolution is to a certain extent under his own control. As horses can be bred for the racecourse or for heavy draft animals, so human beings can be caused to develop in this way or that according to the kind of selection exercised in perpetuating the race." (78) Thus, by 1906, eugenics was both a combined observational science and socially engineered plan. Eugenics ushered in a period of philosophical thought in which biological determinism reached its height, and an emphasis on analogizing everything to processes and forces in the natural world shaped social and political thought. (79)

While efforts to combat or contain heredity had been in force for a number of years, the American eugenics moment gained rapid speed at the turn of the century and exploded with the founding of the Eugenics Record Office at Cold Spring Harbor on Long Island in 1910. (80) The Record Office was a department of the Station for Experimental Evolution established by the Carnegie Institution of Washington and directed by Charles Davenport. (81) Davenport's views were classic eugenics. He believed that most traits--both physical and behavioral--were inherited in predictable patterns. (82)

The Record Office trained young eugenics workers to collect family pedigrees to study human heredity in poor families and in prison and institutional settings. The Office also provided hereditary counseling (an interesting precursor to today's laudable "genetic counseling" (83)) to engaged couples. (84) Many American couples willingly cooperated with the office, mailing in their genealogy cards. Eugenics societies realized that their success rested largely with educating the public, and numerous educational associations were founded. (85) Eugenics became a household word in the middle and upper classes. (86)

Davenport's efforts were encouraged and reinforced by widespread social anxiety that the class structure and ethnic proportions of America were changing for the worst. The birthrate of middle and upper class white couples was steadily decreasing. Eugenicists focused some of their efforts on encouraging the white well-bred birthrate (87) and began the slow and laborious process of educating men and women of their "social obligations" to breed many genetically well-heeled children. (88) President Roosevelt chided well-bred Americans for their selfishness in not reproducing. Promoting reproduction in certain select social segments was obviously preferable to calling for the widespread cessation of reproduction in virtually every other segment. (89)

The birth rate itself was not exactly the problem, but rather the proportion of white well-bred births compared to non-white (and some white) poorly-bred births. (90) In other words, eugenicists believed that society was being overrun by the segments least able to advance it, leaving the few and able to care for the many and unable. (91) Terrified of what many perceived to be a modern day Pompeii, an eruption of degeneracy burying civilized society, (92) observers concluded that one must be "an optimist indeed who can see ... anything other than a plight in which the race must find its final destiny in trained imbecility." (93) Social commentators and politicians coined the termed "race-suicide," and sounded the alarm. (94) Sometime later, less impassioned scientific observers still believed that the lower birth rate among the educated classes (which some blamed on women's increasing education levels) acted to the "detriment of our racial heredity." (95) Such efforts, however, relying on the genetic altruism of the middle class, were largely unsuccessful. Thus, efforts then turned to abridging the rights of the undesirables.

D. GOVERNMENT POWER

Eugenics as a theory had little practical impact until coupled with government power. (96) While eugenicists could instigate public panic about rising levels of degeneracy and skyrocketing associated costs, and could cajole middle class whites to have more children, their agenda could not be implemented without governmental blessing. The first state benediction took the form of sterilization laws, and the second in the form of restrictive immigration policies.

1. Sterilization Movement

As early as 1896, states began to pass laws that criminalized behavior leading to the perpetuation of undesirable traits and legalized certain efforts (i.e., sterilization and segregation) to end pedigrees of degeneracy. Connecticut took the first step in 1896, making it illegal for "an epileptic, an imbecile or feebleminded" person to have extra-marital relations if the woman was under 45 years of age. (97) Other states followed suit and by 1905, Kansas, New Jersey, Ohio, Michigan and Indiana (98) had similar eugenic marriage laws. (99)

More aggressive efforts at castration or sterilization were encouraged (100) when reformers noted that degenerates would not feel bound by marriage limitation laws. (101) Those who supported castration and sterilization not only found those methods more effective, but also believed that they carried additional benefits. Many doctors saw such efforts as preventative medicine that would keep patients from being victimized by their "own degenerate brains and bodies." (102)

Before a state legislature could act to authorize castration, Dr. F. Hoyt Pilcher, superintendent of the Kansas State Home for the Feeble-minded, castrated forty-four boys and fourteen girls in residence. (103) Criticized at first for acting without legal authority, he was subsequently praised for his heroic eugenic efforts. (104) However, despite the "positive" side-effects to castration (i.e., mild-manneredness, decreased sexual appetite), the cure proved too extreme, and efforts turned towards finding a simpler surgical procedure that would leave individuals sterile, but not alter their normal hormonal balance. By 1900, sterilization techniques had been perfected and in 1907, Indiana became the first state to mandate sterilization of confirmed criminals, idiots, imbeciles and rapists confined in state institutions after a review by an expert panel. (105)

Between 1907 and 1917, fifteen states enacted laws permitting state-ordered sterilization. (106) Many courts overturned the laws, placed significant restrictions on their application, or insisted on due process protections. (107) Other courts, however, supported eugenics. The split culminated in the infamous case of Buck v. Bell. (108) Carrie Buck, a state ward in the State Colony Institution in Virginia, was the daughter of a feebleminded woman (also institutionalized) and the mother of an illegitimate child assumed to be feebleminded. Under state law, Buck could be forcibly sterilized if the institution believed it was "for the best interests of the patients and of society." (109) The Supreme Court, drawing heavily on Goddard's theory of inherited imbecility and degeneracy, (110) upheld the statute. Justice Holmes quipped, "[t]hree generations of imbeciles are enough," (111) and justified his opinion on the grounds that sterilization was the sacrifice for society that degenerates were called to make. (112) Thus, the Supreme Court placed its imprimatur on sterilizing degenerates as a form of involuntary patriotism.

2. Restrictive Immigration

Many (although not all) eugenicists were racists (113) and believed in the supremacy of the white Nordic race. (114) Well-bred Americans came to view themselves as the fortunate inheritors of the Anglo-Saxon legacy--imaginative, creative, adventuresome, hard-working, productive--they promoted culture, liberty and democratic thought. (115) Eugenicists believed in the danger posed by the rising population tide of non-white Nordic races, and racists looked to the eugenics movement to give their creed scientific support. They reasoned that if undesirable traits were inherited within families, they could also be inherited by groups of families from similar racial or ethnic backgrounds. Thus, social Darwinism became the scientific counterpart to racist ideologies.

Racist eugenicists were largely successful in promoting restrictive immigration rules. (116) In 1907, Congress constituted the Immigration Commission to investigate the impact of immigration, particularly from non-Nordic nations, on American society. Not surprisingly, their findings were scientifically inexact and alarmist. (117) The Commission recommended a literacy test for adult immigrants. President Howard Taft, however, vetoed literacy test legislation in 1913, and President Wilson vetoed similar legislation in 1915. It was not until 1917, over President Wilson's veto, that Congress passed a literacy test requirement and a flat-ban on immigrants from Asian countries, (118) and Congress passed a series of laws during the 1920s that included caps on immigration and percentage quotas. (119) These laws were more successful at limiting immigration than the original 1917 law. (120) As one commentator noted, "The post-World War I appeal of eugenicists' vision of the inferiority of southern and eastern Europeans was that it seemed to make dislike for those peoples a matter of science, not of prejudice or ill-will." (121) Thus, while it was noble and idealistic to want to offer a haven to immigrants from everywhere, science indicated that such an invitation was undesirable. The middle class overwhelmingly supported eugenic-based immigration regulations, (122) and the immigration laws reflected this support. (123)

E. DISSENT

Particularly toward the end of the eugenics movement, critics condemned shoddy statistical evidence garnered in support of massive sterilization efforts. (124) Those still concerned about degeneracy in society stressed that custodial care and social programming were adequate responses. (125) Thus, the eugenics movement also motivated non-eugenic reformers to pursue a campaign of custodial care, supporting legislative efforts to establish and support institutions. (126)

The success of the eugenics movement, however, should in no way minimize the significant voice of detraction that dogged it for its entire tenure. (127) In the 1920s, the eugenics movement began to collapse under its own weight. (128) The demise of the movement is instructive in understanding the use of genetic information today, and largely reassuring in the ultimate integrity of the scientific method. Three main criticisms were levied against eugenics.

First, many reformers were just that--individuals committed to the ability of society to remedy and compensate whatever raw deal certain people were given. (129) These reformers admitted that unhealthy and destructive behaviors clustered together, but believed that society largely made people bad, rather than heredity. (130) The same social systems and cycles of disadvantage that lead to poor education, poor health and poverty led to sexual immorality and criminality. For instance, S.J. Holmes, who had been part of the eugenics movement but over time distanced himself because of scientific disagreement, believed that even inherited traits could be mitigated through better medical treatment. He stated that "[w]ithin certain limits we may escape our heredity. One may be prone to develop insanity, but under proper conditions the dread [sic] malady may never appear.... If a child was feebleminded owing to an inherited deficiency of the thyroid gland, it might be converted into a person of normal intelligence by the administration of thyroid extract." (131) Thus, critics understood, even without the powerful tools of modern genetics, that heredity and environment are partnered, and any undue credit to either is inaccurate.

Second, many observers criticized the legitimacy and accuracy of certain measurement methods and the soundness of the scientific underpinnings of eugenic conclusions. (132) For instance, even administrators of intelligence testing were increasingly uneasy as the limitation of the testing and the over-expansion of its application became apparent. (133) Critics also scrutinized the field studies and found that the eugenicists often made hasty assumptions based on little empirical evidence. Consider Goddard's ambitious study of the pedigrees of the children he supervised at Vineland. When field study information did not conform to his presumed expectations, he often tried to explain it away. For instance, when two parents were judged defective, but their children appeared normal, he noted that "all of the children should have been defective." While he did not ask the field worker to doctor the data, he added that because the children were young, their feeblemindedness had not manifested itself yet. (134) Furthermore, eugenicists lumped disparate conditions like epilepsy and low intelligence carelessly together. (135) Critics of eugenics understood that accuracy in testing and careful interpretation of results were crucial, and they deplored the employ of genetics to justify racial prejudice (136) and believed that eugenics relied on overly simplistic and outdated scientific models. (137)

Third, the virulent racism that came to be associated with eugenics discomforted some people. (138) Racists' use of eugenics to support and legitimize their theories of white hegemony and to support immigration quotas (139) drew significant criticism from scientific circles. (140) For instance, Franz Boas, America's leading anthropologist at the time, acknowledged genetic differences between groups of people, but rejected that the white "race" was somehow inherently superior. (141) As racists began to use eugenics to sponsor restrictive immigration statutes, local affected communities, for instance the Jewish community, offered staunch resistance. (142) Furthermore, Nazism's lethal and unfathomably violent strain of eugenics left many Americans dizzy and eager to distance themselves from a movement that heavily influenced the Germans. (143) As a future Nobel laureate remarked, eugenics was a "hopelessly perverted" theory that "advocates race and class prejudice, defenders of vested interests of church and state, Fascists, Hitlerites and reactionaries generally." (144) Relatedly, extremist sterilization measures--some calling for as much as 10% of the population to be prophylactically sterilized--horrified many scientists: "[T]hose who are friendly to eugenics and those who value human liberty and individuality ought to take a very firm stand against such over-dogmatic and socially excessive measures." (145)

F. REFLECTIONS

While eugenics is rightly charged today as scientifically simplistic, patently racist, an affront to human dignity and freedom, and deeply unethical, it cannot be easily dismissed as a fad or the mad ravings of a lunatic fringe. (146) On the contrary, eugenics was a rigorous scientific effort and a deeply influential social ideology. Its proponents and investigators include the finest intellectuals of American society, (147) and the writings and rhetoric it produced are often dispassionate, well-reasoned and compelling. (148) The frightening lesson of eugenics, especially as it relates to modern-day genetics, is two-fold: first, eugenics powerfully illustrates that science can operate as a runaway train, with too much power and too little direction; second, eugenics illustrates that science and social philosophy often mix too well, producing a theory insulated by "objectivity," but socially destructive. (149) The eugenics moment serves as a strong reminder that social decisions cannot be made in line with scientific considerations alone, even assuming the scientific principles are accurate. Economic, moral and ethical values should play an important role. (150)

The eerie similarities between the science and goals of the eugenics of yesterday and of the genetics of today serve as a cautionary tale. Modern day genetics is not immune from becoming the scientific reinforcement of cultural ideas. In any age, science and culture inform one another. …

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