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Sunday, May 3, 2015

British scientist Francis Galton is perhaps best known for his studies that compared the behavioral monozygotic twins,

Human Testing, the Eugenics Movement, and IRBs

By: Karen Norrgard, Ph.D. (Write Science Right) © 2008 Nature Education 
The eugenics movement of the early 1900s ultimately went horribly wrong despite its noble aims. What can we learn from this movement's outcomes in order to avoid the repetition of these mistakes?
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A black-and-white photograph shows the scientist Francis Galton mostly balding with cheek-length sideburns in a dark suit coat, lighter vest, dark tie, and white shirt.
Figure 1: Francis Galton.
© 2008 Eugenics Archive at Cold Spring Harbor Laboratory All rights reserved. View Terms of Use
British scientist Francis Galton (Figure 1) is perhaps best known for his studies that compared the behavioral differences between dizygotic and monozygotic twins, or perhaps for his statistical innovationsincluding the concepts of chi squareregression, and correlation. What many people don't realize, however, is that Galton was also the creator of the field of eugenics. In an 1869 work, Galton assembled biographical information from obituaries and other sources and constructed pedigrees of leading English families, concluding that superior intelligence and abilities were inherited with an efficiency of 20%. From this work, he coined the term "eugenics," meaning "well born," and theorized that humanity could be improved by encouraging the fittest members of society to have more children.
Galton's ideas soon gained popularity both at home and abroad. In the United States, the eugenics movement hit its stride in the early 1900s, when increased interest in the genetics of animal breeding coincided with rediscovery of Mendel's 1865 work demonstrating the inheritance patterns of certain characteristics in pea plants. Charles Davenport, a chicken breeder and agriculturalist, was one of the first American scientists to embrace Mendelian genetics. Through his studies of large families, Davenport uncovered valuable information regarding the inheritance of conditions such as albinism and neurofibromatosis. However, Davenport's involvement in the eugenics movement would soon overshadow these accomplishments.

Negative Eugenics in the United States

Early geneticists including Davenport were eager to apply Mendel's principles to the inheritance of human traits, with the intention of improving the quality of the human population by selecting for desirable traits, just as animal breeders would do for their livestock. Thus, in 1910, Davenport founded the Eugenics Record Office (ERO), which was based at Cold Spring Harbor Laboratory in Long Island, New York. According to a circa 1927 publication released by the ERO, the goal of eugenics was "to improve the natural, physical, mental, and temperamental qualities of the human family." Regrettably, this sentiment manifested itself in a widespread effort to prevent individuals who were considered to be "unfit" from having children. Eugenics researchers believed that by studying large human families in which a certain undesirable trait appeared, they could demonstrate a genetic pattern of inheritance for the trait, and such findings would justify policies aimed at removing the related genes from the population. Unfortunately, such policies often included involuntary sterilization or institutionalization.
Based on the genetic knowledge available in the early 1900s, this approach to changing the human gene pool seemed reasonable. After all, Mendel's beautiful demonstration of dominant and recessive inheritance in plants allowed for the prediction of phenotype among theoffspring of parents with known genotypes. Moreover, animal breeders had been applying disassortative mating to successfully improve their livestock for centuries. Couldn't these same principles be applied to improve the human population? Eugenics researchers thought so, and they therefore believed that by carefully controlling human matings, conditions such as mental retardation, psychiatric illnesses, and physical disabilities could be eradicated. Eugenics quickly became an issue of public health that was advocated not only by scientists, but also by physicians and lawmakers. All that was needed were data to verify these assumptions. Such data, however, would never emerge.

Problems with Eugenic Research Studies

Despite its popularity, the eugenics movement was doomed from the start because most of the traits studied by eugenicists had little genetic basis. Among those characteristics targeted for elimination from the human population were such complex and subjectively defined traits as "criminality," epilepsy, bipolar disorder, alcoholism, and "feeblemindedness," a catchall term used to describe varying degrees of mental retardation and learning disabilities. The possibility that environmental factors (such as poor housing, poor nutrition, and inadequate education) might influence the development of these traits was dismissed.
Over the course of 29 years, the ERO collected hundreds of thousands of pedigrees that documented the heritability of the aforementioned undesirable traits. When direct interviews were not possible, family members were categorized in absentia as either affected or unaffected based on hearsay evidence or on records kept by prisons and psychiatric hospitals. In addition, familial data was sometimes collected by untrained individuals or by researchers who projected their own prejudices onto their work, forcing certain traits to seem more heritable than they actually were. Furthermore, some conditions were so subjectively quantified (e.g., "criminality"), with so much ambiguity in their description (e.g., "feeblemindedness"), that almost any member of any family could be categorized in such a way as to make the data fit a Mendelian mold.
Ultimately, families and individuals were deemed either "fit" or "unfit" based on the eugenic belief that complex human traits were controlled by single genes and therefore inherited in a predictable pattern, just like the seed coat color of Mendel's peas. What eugenicists did not know, however, was that Mendel also observed many other traits in his plants that simply did not fit into defined categories and were therefore omitted from his famous study. These researchers were also unaware that most of the traits they were interested in actually result from interactions between genetic and environmental factors, something that confounds predictions of complex disease even today. So, oblivious to the actual nature of complex human traits, the eugenics movement pressed on, providing "scientific" evidence that undesirable human traits were predictably inherited and could be selected against by curbing reproduction in "unfit" individuals.

Popular Support Grows from Bad Science

Studies showing that American prisons, psychiatric hospitals, and other charitable institutions commonly housed people who were related to each other provided additional evidence for supporters of eugenics that mental illness, poverty, "criminality," and other undesirable traits were hereditary. When eugenicists calculated and publicized the costs of maintaining these supposedly "genetically inferior" families in such facilities, they were able to gain public support for their efforts. Moreover, during the late 1800s and early 1900s, widespread economic and social unrest was being fueled throughout the country by the rising tide of immigrants who were arriving in American cities. Many city governments of the time were overwhelmed by issues of crime and poverty, and they thus embraced the principles of eugenics, which placed the blame for a city's social dilemmas on the victims themselves, rather than on inadequate approaches to solving the problems of the urban poor.
With support from citizens and medical professionals, the ideas of the eugenics movement quickly made their way into American public policy. For instance, the ERO proposed that laws be enacted to authorize the sterilization of so-called "socially inadequate" individuals, or people who were maintained wholly or in part at public expense. The costs of caring for such individuals could be saved, eugenicists argued, by preventing their birth in the first place. Indeed, because eugenics research had shown that the mental and physical conditions of many institutionalized people were inherited, sterilization of one "defective" adult could save future generations thousands of dollars. Ultimately, 30 states adopted eugenic sterilization laws, which together accounted for the forced sterilization of approximately 60,000 Americans. In addition to targeting U.S. citizens, the eugenics movement was also one basis of the ethnic bias that led to the passage of the Immigration Act of 1924, which severely limited the number of southern and eastern Europeans who could enter the U.S. each year and almost completely barred all immigrants from Asia. These immigration policies remained in effect until the 1960s.

The Most Infamous Eugenics Movement

By the 1930s, eugenics had been scientifically discredited in the United States due to the aforementioned difficulties in defining inherited characteristics, as well as poor sampling and statistical methods. In Germany, however, the eugenics movement was just gaining momentum. For instance, in 1933, the Nazi-controlled government issued the so-called "Law for the Prevention of Progeny with Hereditary Diseases," under which at least 400,000 Germans were involuntarily sterilized for having hereditary conditions such as mental illness, epilepsy, "feeblemindedness," or physical deformities (Kennedy Institute of Ethics, 2002). The passage of such measures continued over the course of the decade, and by the late 1930s, Hitler's eugenic-based national program of "race hygiene" had escalated into a program of euthanasia targeting both children and adults with various mental and physical disorders. This policy eventually culminated in the ghastly deaths of millions of Jews during the Holocaust.

Learning from History

In the 1940s, the judges who presided over the Nuremberg trials of the Nazi doctors who performed experiments on concentration camp prisoners wisely recognized a need for oversight of medical experiments involving human subjects. As a result, the Nuremberg Code was formulated in 1947, and it provided guidelines for research that are still adhered to today. Other more recent protocols for research involving human subjects require such things as informed consent and adherence to strict policies aimed at protecting the welfare of subjects. Moreover, within the United States, any research program involving human trials must now be scrutinized by an impartialinstitutional review board (IRB) before the program can begin, and any adverse events that occur during experimentation must be reported and reviewed.

Eugenic Philosophies Remain

Despite the events of the past, there are still many individuals yet today who support eugenic arguments against the decision to knowingly give birth to a child with a genetic disorder, cognitive impairment, or physical disability. Society, however, must accept that one person's definition of "disabled" or "impaired" may be drastically different from another person's. Deafness, for example, is seen by some as a disability and by others as merely a different way of living. Consider the case of a deaf lesbian couple in the U.S. who, in 2002, revealed that they had specifically sought out a hearing-impaired sperm donor to conceive their two children, who were indeed born deaf (Spriggs, 2002). Now, consider those parents who are either affected by or carriers of a genetic disorder who turn to modern techniques such as preimplantation genetic diagnosis to select for embryos that will be born without the genetic condition in question. Stories such as these have refueled the ethical debate over "designer babies" and whether society has a right to choose what types of children are born.
Of course, there are numerous other conditions that can be viewed as either disabling or empowering, depending on one's point of view. For example, bipolar disorder is a condition in which an individual alternates between periods of euphoric creativity and activity and periods of debilitating depression. Because this disorder has a genetic component and tends to run in families, it would have been a likely target of the U.S. eugenics movement of the early twentieth century. Today, however, bipolar suffers have access to treatments that allow most of them to lead normal lives; furthermore, some people would argue that eliminating bipolar disorder as a disease would also meaneliminating a positive intellectual force in society. Indeed, the Internet is rife with lists of well-respected intellectuals and artists who are rumored to have suffered from bipolar disorder. The decision to treat, rather than eliminate, bipolar disorder seems obvious when considering the societal contributions made by some of these individuals.

Respecting Differences in Thought and Opinion

Western geneticists and genetic counselors now make great efforts to avoid projecting their opinions and philosophies onto their patients, and they instead strive to educate their patients so that these individuals can make their own decisions regarding their genetic health. Although this concept of nondirective counseling is widely accepted in the West, it may never become standard in other parts of the world. In China, for example, moral values are strongly influenced by the Buddhist and Taoist religions and by Marxism. There is a strong ideology that regards each person as a small component of society, as well as widespread sentiment that an individual's interests should be subordinate to the interests of the nation. Therefore, it is not surprising that many Chinese geneticists strive to improve population quality and further eugenic principles, a goal clearly at odds with Western ideology (Mao, 1997). Indeed, it is examples such as this that highlight the importance of remembering the eugenic mistakes of the past so that they do not occur again in the future.

References and Recommended Reading

Eugenics Record Office, Cold Spring Harbor Laboratory. Eugenics Seeks to Improve the Natural, Physical, Mental, and Temperamental Qualities of Man (Carnegie Institution, Washington, D.C., c. 1927).
Galton, F. Hereditary Genius: An Inquiry into Its Laws and Consequences (Macmillan, London, 1869)
Kennedy Institute of Ethics, Georgetown University. High School Bioethics Curriculum Project, Chapter 5: The Nazi Eugenics Programs. (2002)
Mao, X. Ethics and genetics in China: An inside story. Nature Genetics 17, 20 (1997) doi:10.1038/ng0997-20 (link to article
Spriggs, M. J. Lesbian couple create a child who is deaf like them. Journal of Medical Ethics 28, 283 (2002)
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