From Eugenics to Patents: Genetics, Law, and Human Rights

In an article that discusses eugenics, its modern form of genetics and the consequent legal and human rights issues raised, science historian Daniel Kevles points out that after the turn of the century, eugenics was pretty much practised everywhere, and although it is often dismissed as a crank movement, it must be remembered that “…science is in any day what scientists do and defend” (Kevles 2011, p 326). The possibility to improve people genetically is still a goal, and one that is rapidly becoming a reality owing to advances in the field of genetics.

Images taken from the Eugenics Archive website:

Posters that show cases of hereditary disorders, a chart showing the heredity of hare lip and cleft palate, and a flash card to illustrate certain abnormalities, in this case ‘cretinism’. At this early stage in the development of understanding genetics, the eugenics movement pounced on the idea of improving society, since feebleminded people were considered to be creating social problems as well as proliferating at a rate that threatened social resources and stability (their feeblemindedness meant that they had immoral characters and especially the women were thus drawn to the vices of licentiousness and prostitution). As such, the movement had a broader appeal to social conservatives who were concerned with preventing the increase in numbers of low-income groups and reduce the costs of caring for them.

According to Paul Lombardo, law professor specialised in bioethics, illegal sterilisation was carried out even before the first law was passed permitting the practice in Indiana in 1907. In 1914 Harry Laughlin, director of the Eugenics Record Office published a Model Law advocating forced sterilisation of the:

“socially inadequate” – people supported in institutions or “maintained wholly or in part by public expense.” The law encompassed the “feebleminded, insane, criminalistic, epileptic, inebriate, diseased, blind, deaf; deformed; and dependent” – including “orphans, ne’er-do-wells, tramps, the homeless and paupers.”

By which time 12 states had already enacted laws on sterilisation. The belief that “heredity plays an important part in the transmission of insanity, idiocy, imbecility, epilepsy and crime” meant that sterilization was authorized by law for “defective persons” whose reproduction represented “a menace to society.” (Lombardo, 2000).

In the US, the main concern was with the dilution of Anglo-Saxon stock with undesirable genes from Eastern Europe: “Eugenic reasoning in the United States had it that if immigrant deficiencies were hereditary and Eastern European immigrants outreproduced natives of Anglo stock, then inevitably the quality of the American population would decline” (Kevles, p 327). Douglas Baynton (2001) writes that prior to the Immigration Act of 1924 that introduced a quota system restricting numbers of immigrants from certain parts of Europe, “ethnicity and disability overlapped“, nationalities were stereotyped as mentally defective (‘slow-witted Slavs’ and ‘neurotic Jews’), while a long list of ailments and impairments, both physical and mental, was drawn up in order to screen out and reject ‘degenerate’ immigrants from ‘inferior nations’ on ‘medical’ grounds (ostensibly employability, but also out of eugenic considerations), which were usually determined by appearance alone (2001, pp 45-50). On the subject of stigma, Baynton also notes:

The belief that an immigrant with a disability was unfit to work was justification for exclusion; but the belief that an immigrant was likely to encounter discrimination because of a disability was equally justification for exclusion” (ibid, p 50).

In addition, there were ‘fitter family’ competitions held in certain states, with eugenics societies instructing and educating on the potential dangers of hereditary diseases, as well as the burden on society from undesirable defectives, thus putting the case for prohibiting procreation among such types, while sterilisations were undertaken according to the law – 2,500 in California alone by 1924 (Lombardo 2000):

The list of reasons proposed by the Human Betterment Foundation includes the financial justifications for the obviation of the need for institutional care, as well as being a “practical and necessary step to prevent racial deterioration.”

Kevles cites the case of Buck v. Bell, 1927, where ‘feebleminded’ Carrie Buck was deemed as being ‘socially immoral and delinquent’ after giving birth to an illegitimate daughter, Vivian (who was also diagnosed as feebleminded, since at 8 months a nurse observed that she had an odd look), and since her mother Emma had performed poorly on IQ tests the Supreme Court ruled that she should be sterilised in the interests of the larger society. Justice Oliver Wendell Holmes, a student of eugenics, is quoted as saying: “It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes . . . . Three generations of imbeciles are enough.” Likening her legal sterilisation to compulsory vaccination on the grounds that it is for the common good!! From the Eugenics Archive website:

Buck vs. Bell was flawed in many ways. “Feeblemindeness” is no longer used in medical terminology; it was clearly a catch-all term that had virtually no clinical meaning. It is impossible to judge whether or not Carrie was “feebleminded” by the standards of her time, but she was not patently promiscuous. According to Carrie, Vivian’s conception was the result of Carrie’s rape by the nephew of her foster parents. She, probably like many unwed mothers of that time, was institutionalized to prevent further shame to the family. Just as clearly, Vivian was no imbecile. Vivian’s first grade report card from the Venable School in Charlottesville showed that this daughter of a supposed social degenerate got straight “As” in deportment (conduct) and even made the honor role in April, 1931. She died a year later of complications following a bout of the measles.

Remarkably, unlike other infamous Supreme Court rulings, Buck v. Bell has never been overturned:

In Skinner vs. Oklahoma (1942), the Supreme Court struck down a law allowing the involuntary sterilization of criminals. However, the Court never prohibited states from sterilizing non-criminals, despite later scholarship showing the falsity of eugenic “evidence” used in Buck vs. Bell. Sterilization of the allegedly mentally ill continued into the 1970s in several states, by which time about 60,000 Americans had been involuntarily sterilized. (Eugenics Archive website)

Although the Nazis are renowned for their ‘racial cleansing’ policies, sterilisation laws were extant in Germany before Hitler came to power in 1933, while racial hygiene and eugenics were regarded as academic disciplines as early as 1923 and taught in most German medical schools (Hubbard 1990). In fact, Hitler praised US legislation on forced sterilisation, although the laws he passed in 1934 made it compulsory for all persons suffering from purportedly hereditary disabilities such as blindness, alcoholism and “physical deformities that interfered with locomotion or were greatly offensive“. This caused some states to resist the passing of sterilisation laws at the risk of becoming “Hitlerized”, a stigma that tainted the expression and the movement in Western politics and ideology after the Second World War.

Kevles cites the case of Gansu province in China, which introduced a law to prohibit marriages of persons with hereditary conditions, including “relevant mental diseases” unless they first submitted to sterilisation or long-term contraceptive measures. The law has since been introduced in other provinces and even been endorsed at the republican level.

Kevles then goes on to discuss how in its turn, the biotechnological industry “has established strong economic incentives to encourage consumers to pursue a kind of “homemade eugenics,” to use the insightful term of the analyst Robert Wright—”individual families deciding what kinds of kids they want to have” (Wright, 1990: p. 27). He quite rightly points out that the eugenic goals are the same, although the discourse may differ in language and sophistication, while the consumer-oriented biomedical industry provides the technology at a price affordable only to the more well off sectors of society, which may in turn create a future gap between the rich ‘genetically-perfected’ and the ‘normal’ poorer classes – “...those better off in talent and resources will only grow more advantaged” (Kevles, p 330). With genetic information becoming more and more available, Kevles predicts that employers and insurers may wish to identify people prone to diseases that result in high medical bills, a genetic labelling that is reminiscent of Huxley’s dystopian visions in Brave New World.

In 2013, the state of North Carolina set a precedent by passing legislation to compensate victims of involuntary sterilisation with up to $50,000 per person (according to the NYT, between 1933 and 1977 the NC Eugenics Board sterilised an estimated 7,600 people, of whom 200 are still thought to be alive). California, which sterilised almost 20,000 people, has yet to follow suit.

Although sterilisation is legally prohibited, there are still those who believe that disabled people should not become parents, and that children with disabilities should not be born. This is also apparent in the British legal system, which allows for termination of pregnancy after the 24-week watershed on the grounds that there is a high risk of the child being born ‘seriously handicapped’ (Barnes, 1992). Anne Finger also points out that the abortion rights movement in the US exploits fears of defective foetuses in their campaign for legal abortions.

Even in the absence of outright bans on reproduction, the attitude that disabled people should not have children is common. Disabled women and men are still sometimes subject to forced and coerced sterilizations – including hysterectomies performed without medical justification but to prevent the ‘bother’ of menstruation.” (Finger, 1992)

Finger then goes on to state that prejudice against disabled people is “enshrined in law” in the US, with disincentives to marry – the reduction or elimination of benefits, including government health care, for those who do marry.

Arguing against the use of genetic screening as a basis for abortion, Davis (2006) explains that genetic information for both cystic fibrosis and sickle-cell anaemia is present in a large proportion of the population, since they are both recessive, while those bearing the genetic markers for the two conditions exhibit resistance to cholera and malaria respectively. Taking the screening method to the extreme, Davis suggests that Deaf parents could effectively abort a hearing child, while people with short stature could screen for children that might otherwise be born normal-sized.

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