Eugenics, Heredity, and Huntington's Disease: A Brief Historical Perspective

It has often been said that almost nothing was known about Huntington’s disease (HD) prior to the 1970 s. When my mother was diagnosed with HD in 1968, my father had trouble finding a physician who knew anything about it. But if HD even today is not widely known, even within medicine, in fact the rediscovery of Mendel in 1900 drew considerable scientific attention to this disorder over a century ago. By 1908 Huntington’s had attracted so much interest among neurologists and psychiatrists that the journal Neurographs devoted an entire special issue to the disease [1]. Unfortunately the social and scientific movement for “better breeding” known as eugenics–from the Greek word eugenes meaning “good in birth”–also took an interest in Huntington’s [2]. Addressing the historical impact of eugenics on Huntington’s disease families and on HD research can help explain the secrecy and shame that still often surrounds the illness. It can also suggest ways to move beyond this troubling inheritance in the future. Eugenics today is often narrowly equated with the atrocities of Nazi Germany or dismissed as “pseudoscience”. However for much of the 20th century, eugenic thought was an inextricable aspect of some of the most important cultural and social movements worldwide [3, 4]. The English statistician (and cousin of Darwin) Francis Galton coined the term eugenics in 1883 to mean a program of “improving” society by giving “the more suitable races or strains of blood a better chance of prevailing” [2]. In the early 20th century, when most university-based geneticists were studying Drosophila, many biologists interested in human ∗Correspondence to: A. Wexler, 1930 Ocean Ave. # 315 Santa Monica, CA 90405, USA. E-mail: arwexler@ucla.edu. heredity embraced this idea, as did other scientists, intellectuals, politicians, and physicians on all sides of the political spectrum. In the name of fostering “fitness” and eliminating the so-called “unfit” (a vague category that included the “feebleminded”, racial and ethnic minorities, and those with disabilities or diseases thought to be hereditary) eugenics societies across the globe supported widely differing policies. These ranged from the genocidal extremes of Germany during the Third Reich to the immigration restrictions and compulsory sterilizations of North America, Japan, and Scandinavia to the prenatal clinics and kindergartens of France, Brazil, and Mexico [4, 5]. Clearly eugenics encompassed many meanings, as the historian Diane B. Paul explains in her authoritative history Controlling Human Heredity: 1865 to the Present [2]. As a classic Mendelian dominant disorder, Huntington’s especially attracted the attention of biologists interested in human heredity. The eugenics leader Charles B. Davenport, director of the Cold Spring Harbor Biological Laboratory and an early proponent of Mendelian genetics [6], commissioned the first largescale field study of North American HD families (in 1911) and later published a widely-cited paper on the disease [7]. From the 1910 s through the 1930 s, he lectured and lobbied for eugenic policies all over the world, trained field workers, and published through his Eugenics Record Office. Though more a proponent of immigration restrictions and institutionalization than of sterilization, he made a strong exception for Huntington’s. Of HD he famously wrote that “a state...that does not do the obvious thing to prevent the spread of this dire inheritable disease is impotent, stupid and blind, and invites disaster” [7, 8].