2.4: Modern-Day Eugenics

Eugenics might seem like it should be a concept from the past, but unfortunately, it continues in present-day disability policy. Despite their eugenicist history, IQ tests still are used to decide disability diagnosis, schooling, and employment, as well as “ in courts…if the person is capable of informed consent or of parenting” (Roige, 2014). In other words, IQ scores or a diagnosis of intellectual disability can be used to restrict rights. Nancy E. Hansen, Heidi L. Janz, and Dick J. Sobsey (2008) state, “There are disturbing similarities between Nazi arguments concerning ‘quality of life’, ‘useless eaters’, or ‘lives less worthy’ and discussions of disability currently taking place among ‘mainstream’ geneticists and bioethicists advocating a value scale of humanness” (p. S105). Bioethics relates to the study moral questions about life and living beings. One famous philosopher, Peter Singer, has debated whether a baby with a disability who needs expensive healthcare has a right to life. Hentoff (1999) quotes Singer as writing that “It does not seem wise to add to the burden on limited resources by increasing the number of severely disabled children” in Should the Baby Live? and in Practical Ethics, “that the parents, together with their physicians, have the right to decide whether ‘the infant’s life will be so miserable or so devoid of minimal satisfaction that it would be inhumane or futile to prolong life’” (Hentoff, 1999). Reading Singer’s work can be jarring and upsetting from a disability studies lens. Singer’s arguments show that eugenics is still discussed and debated. This is part of what Hansen, Janz, and Sobsey are talking about when they write that there are “disturbing similarities” between eugenic arguments of Nazis and modern bioethicists (2008, p. S105). The authors also mean that some people who study and give medical advice about genes use language of eugenics when referring to people with genetically-linked disabilities. There have been many advances in genetics in the twenty-first century, from the Human Genome Project sequencing DNA in 2003 to present-day commercially-available genetic testing kits (Roberts & Middleton, 2017). When parents-to-be go to the doctor, they can find out whether their future children are likely to have an impairment linked to their genes. For instance, a doctor can tell somebody whether their child is likely to have developmental disability like Fragile X syndrome or chronic illnesses like cystic fibrosis. A genetic counselor is a professional who understands genetic conditions, discusses test results, and advises patients of options for treatment and reproduction. A genetic counselor might give advice to somebody who finds out through screening during pregnancy that the embryo has an impairment such as Down syndrome, spina bifida, hydrocephalus, or a heart condition. In this scenario, the genetic counselor would advise their patient about options to continue with or terminate the pregnancy.

One area of ethical concern is prenatal screening. During pregnancy, future parents can find out whether their child will have certain impairments. Doctors can diagnose some impairments that are linked to genetic or physical differences in fetuses. Down syndrome is one example of a developmental disability that can be diagnosed prenatally. A consequence of prenatal diagnosis in an ableist world is reducing the populations of people with certain impairments. A person can end a pregnancy if they find out the embryo has an impairment. For instance, “Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women—close to 100 percent—who received a positive test for Down syndrome terminated their pregnancy” (Quinones, 2017). Julian Quinones explained that about eighty percent of expecting parents got the screening test, which involves “an ultrasound, blood test and the mother’s age” to estimate risk factors of genetic disabilities (Quinones, 2017). Compared to other countries, very few people with Down syndrome are born in Iceland each year.

Scientists are working hard to research genes and physical signs of more impairments. One developmental disability that scientists want to understand better is autism. There are large-scale research studies about autism and genetics. One giant research study is SPARK for Autism, which is aiming for thousands of genetic samples from autistic people and their families around the United States. SPARK says its purpose is “to help scientists find and better understand the potential causes of autism. … What we collect and learn will be shared with many autism researchers to help speed up the progress of autism research” (Simons Powering Autism Research, 2019a, para. 1). But when it comes to genetics and disability, disability rights groups question what will be done with the new information scientists find.

Currently medical professionals diagnose autism based on people’s behavior and developmental history. But what would it mean if autism could be tested for genetically, like with Down syndrome, Fragile X syndrome, and other impairments? Pat Walsh, Mayada Elsabbagh, Patrick Bolton and Ilina Singh (2011) write about how researchers are looking for a biomarker for autism—a measurable, predictable biological indicator of a specific condition that can identify “at risk” people, diagnose a condition, and/or provide “personalized treatments” (p. 605). Despite their scientific interest, Walsh et al. know that there could be ethical problems with finding a biomarker for autism. Autism is different for everyone, and people’s experiences with being autistic change over time. Walsh et al. (2011) said that “it is impor­tant that biomarker discovery in autism does not result in children being given a biologi­cal label that fixes and defines their potential and treatments” (p. 606). They are saying that it would not be ethical to use genetic testing to label a child with a type of autism. Then the child could become limited by what the test said. Another ethical issue is whether to view autism as a difference or a disability. Walsh et al. discussed how some disability rights and neurodiversity advocates have argued for viewing autism as a difference, not a disability. If finding a biomarker could lead to “prevention” of autism, then no matter what exactly is meant by prevention, it “assumes that autism is problematic” (Walsh et al, 2011, p. 608). One form of prevention would be prenatal genetic testing. At the time that the authors wrote the article, they thought it would be “unlikely” for one test to tell an expectant parent if their fetus is autistic and more likely that testing could identify different types of autism for parents-to-be and parents of babies (Walsh et al., 2011, pp. 608-609). The authors admit that making prenatal genetic testing available for autism could “could lead to embryo selection and elective termination (to avoid having a child with autism) becoming the norm” (Walsh et al., 2011, pp. 608-609). In other words, people may choose to terminate their pregnancy because of a chance that the fetus could be autistic, or choose to be implanted with what scientists say is a nonautistic fetus. In fact, the authors explained that there already are prenatal genetic tests for autism available in labs. However, the test looks for genetic variations “that are associated with autism” but should not be connected to autism without more research (Walsh et al., 2011, p. 609). Because the authors were interested in ethics as well as science, they recommended that autistic people and their families be involved in whatever clinical tests may emerge.

This wall panel was based on a paper by eugenicist Harry Laughlin and was presented in 1932 at an international eugenics conference at the American Museum of Natural History.

A decade of progress in Eugenics. Scientific. Credit: Wellcome Collection. CC BY

Erik Parens and Adrienne Asch (2003) wrote a disability rights perspective on prenatal testing. Within their working group, they found that both people with disabilities and parents of children with disabilities disagreed about the purpose and use of prenatal genetic testing:

Although many members of Little People of America would not use prenatal testing to select against a fetus that would be heterozygous for achondroplasia (and who could become a long-lived person with achondroplasia), they might use the test to avoid bearing a child who would be homozygous, because that is a uniformly fatal condition. As participants at the 1997 meeting of the Society for Disability Studies suggested, some people with disabilities would use prenatal testing to selectively abort a fetus with the trait they themselves carry; and some people who would not abort a fetus carrying their own disability might abort a fetus if it carried a trait incompatible with their own understanding of a life they want for themselves and their child. A similar diversity of views toward prenatal testing and abortion can be found among parents raising a child with a disability. (Parens & Asch, 2003, p. 41)

Knowing somebody’s relationship to disability will not tell you how they feel about genetic testing. However, Parens and Asch wrote about shared concerns that disability rights activists have about prenatal tests: “it is the reality of using prenatal testing and selective abortion to avoid bringing to term fetuses that carry disabling traits” (Parens & Asch, 2003, p. 41). They recommend that geneticists and medical providers involved in pregnancy care learn about disability and “identify and overcome biases against people with disabilities” so they can share realistic information with patients (Parens & Asch, 2003, p. 45).  So, their disability rights perspective on prenatal testing is that healthcare providers and potential parents deserve accurate information about life with disability and the purpose of testing, as well as the opportunity to consider their values about children and disability before they are confronted with medical decisions. Kruti Acharya (2011) highlighted advances in providing the sort of information for which Parens and Asch were advocating. A 2008 law, the Kennedy-Brownback Pre- and Postnatally Diagnosed Conditions Awareness Act, meant that when doctors tell families about Down syndrome or another impairment, they must give “accurate information” about the impairment and related disability resources  (Acharya, 2011, p. 5).

People can submit a sample of saliva or blood and find out whether they have a gene or a change in their genes that is linked to an impairment. Everyone has genetic variations—differences from and changes to what is expected in DNA, which is like our genetic coding. But, certain genetic variations are linked to impairments. While Hansen, Janz, and Sobsey clarify that they believe modern genetic counseling is “not truly eugenic in its intent” (2008, p. S106), they warn that it also does not center disability rights. Even if it is not intended to be eugenics, though, does that necessarily mean that the impact is not eugenics? Hansen, Janz, and Sobsey also state that genetic counseling does not question Darwin’s principles that contributed to eugenics.

Eugenics can involve deciding who deserves to be alive. Eugenics can also involve deciding who is allowed to have babies. Even in 2018, Washington State came under fire for deliberating over a law change that would potentially make it easier for people with disabilities under guardianship to be sterilized against their own will. Autistic advocate and founder of the Autistic Self-Advocacy Network (ASAN), Ari Ne’eman, wrote that Washington State “prohibits guardians from authorizing sterilization without court approval — but the state judicial system is currently considering a proposal […which] advocates with disabilities and the ACLU believe…will streamline the process and increase the number of guardians requesting the sterilization of those under their power” (Ne’eman, 2018).

The right to reproduce is not the only right in jeopardy for people with developmental disability. Although voting rights are supposedly protected under the Voting Rights Act (1964), the Voting Accessibility for the Elderly and Handicapped Act (1984), and the Americans with Disabilities Act (1990), the reality is that people with developmental disability have been prevented from participating in this part of citizenship throughout time. Disability historian Kim E. Nielsen (2012) explains that as far back as in Massachusetts colony of 1641, some people were exempt from public service and criminal punishment and protected from financial decision-making (p. 21). The list included women, children, older adults, and disabled people, illustrating how concepts around cognitive disability have often included groups viewed as different due to race, gender, age, nationality, or sexual orientation and marginalized by systemic oppression. Nielsen (2012) explains, “Between the 1820s and the Civil War, states also began to disenfranchise disabled residents by means of disability-based voting exclusions.…Virginia excluded ‘any person of unsound mind’ from voting in 1830 (it went without saying that women and African Americans were excluded from the vote)” (p. 76). These voting restrictions not only focused on perceived cognitive impairment, but also made a lasting impact to the present day. Switzer reported on a 1997 research study showing that forty-four states had laws that specifically prevented some people with disabilities from voting: “Some states refused to allow whole classes of people to vote (those variously termed idiots, insane, lunatics, mentally incompetent, mentally incapacitated, unsound minds, not quiet and peacable, and under guardianship and/or conservatorship)” (2003, pp. 181-182).  Jaqueline Vaughn Switzer (2003) explains that voting is still not a national right for all people with disabilities.

Individuals with developmental disability are prime targets of modern eugenics. While the times and the specifics shifted, the denial of human rights continues for people with developmental disability. However, the history and present of developmental disability is not a straightforward story of victimhood.  People with developmental disability resist ableism and advocate for rights. Resistance and self-advocacy offers a path forward for disabled people.