A recently released study finds that Europe has reduced the number of babies born with Down syndrome by 54 percent. In 2016, the same researchers found that the US rate of Down syndrome births had declined by 33 percent. Some friends and colleagues have asked me whether such reductions, which entail prenatal diagnosis and elective pregnancy termination, mean that we are still practicing some form of eugenics.
Down syndrome is a genetic disorder usually associated with an extra copy of chromosome 21 – hence its other name, trisomy-21. Children with Down syndrome generally exhibit growth delays, reduced intelligence, and a shortened life span of around 60 years. The risk of having a baby with Down syndrome increases with parental age. When prenatal testing reveals the diagnosis, some parents, including apparently many in Europe and the US, elect to terminate the pregnancy.
The widely-shared belief that people with Down syndrome cannot have children is mistaken. Fertility rates across the board for individuals with Down syndrome are lower — and much lower in men than in women — but babies have been born to both fathers and mothers with the condition. Unless efforts are made to reduce the risk, such as prenatal testing and selective pregnancy termination, about 50 percent of babies born to a Down syndrome parent will have it.
Having the disorder carries many health consequences. On average, adults with Down syndrome have the mental ability of an 8-year-old, and later in life the risk of dementia is greatly increased. The condition also increases the risk of conditions such as sleep apnea, spinal cord injury, thyroid problems, heart disease, leukemia, and even diseases of the teeth and gums.
Yet some people with Down syndrome have earned university degrees, performed on multiple instruments at Carnegie Hall, designed successful fashion collections, served in public office, won awards for playwriting and acting, and, as recently as November of last year, completed the Ironman triathlon.
In 2017, a Special Olympian testified before Congress,
“I am not a research scientist. However, no one knows more about life with Down syndrome than I do. I am a man with Down syndrome and my life is worth living. I completely understand that people pushing this particular ‘final solution’ are saying that people like me should not exist. But seriously, I have a great life!”
The Greek roots of eugenics simply mean “well born,” and adherents believe that humanity can be biologically enhanced by controlling reproduction. Francis Galton, who coined the term, intended it to refer to “all agencies under human control which can impair or improve the racial quality of future generations.” The use of the term racial should not be ignored, as many eugenicists have also held racist views. A century ago, eugenics programs focused on marriage prohibitions and forced sterilisation.
The first sterilisation law was passed in the state of Indiana in 1907. Along with “confirmed criminals” and “rapists,” it targeted “idiots” and “imbeciles.” As amended in 1927, it eliminated criminals, focusing instead on the “insane,” “feeble minded,” and “epileptic.” The law specified that two surgeons should examine each case, and if they determined that sterilisation would benefit society, they were authorised to proceed.
Between the Indiana law’s enactment and its 1974 repeal, about 2,500 people were sterilised, including roughly equal numbers of women and men. People who supported the law at the time saw it as another means to reduce disease and poverty, helping to ensure that high birth rates among the “unfit” did not impose an undue burden on society.
Such policies took an even more sinister turn in Nazi Germany. Initially, programs focused on segregating, institutionalizing, and sterilizing the mentally ill and physically and mentally disabled, but the program progressed to systematic killing with poison gas, paving the way for extermination programs targeting homosexuals and “racial” groups such as Jews and Roma.
Down syndrome and eugenics
No one should underestimate the complexity and difficulty of deciding whether to test for Down syndrome or terminate a pregnancy. A host of considerations are often involved, such as family circumstances, socioeconomic status, and religious affiliation. Some people are relatively well-equipped to welcome a Down syndrome child into their family, while others are not. Those grappling with such choices often suffer mightily.
Yet those who opt to test and decide to terminate should be clear on one thing: They are tinkering with who is born and who isn’t, and they are doing so based on genes. My wife and I faced a similar choice when we had a child in our 40s, electing not to test. In some cases of Down syndrome, such a life would have been marked by severe disability and early death, but in other cases, the outcome might have been quite different.
The point is not that parents facing perhaps the most difficult decision of their lives should be branded eugenicists, but simply to indicate that despite protests to the contrary, eugenics has not been fully consigned to history’s dustbin. As a society, we are still deciding who is and is not born based on genes, and the decisions we make shape humanity not just into the next generation, but generations to come.
This article has been republished, with the author’s permission, from Psychology Today.