In a previous post, I reported on an account that suggests Down syndrome may already be starting to disappear from our society. But, if that is the case, what are we losing if Down syndrome disappears?
As covered in the earlier post, the number of babies born with Down syndrome is already dwindling in Western European countries. Figure 1 shows some graphs from the EUROCAT database. It shows the disparity between the number of babies born with Down syndrome as compared to the number of Down syndrome pregnancies there are.
Figure 2 is a portion of the table included in the international study which found that 86% of all pregnancies carrying a child with Down syndrome in France are terminated and 87% are terminated in Switzerland.
There are many who will look at those figures and say, “Good! The public prenatal testing program is working!” As reported by the Copenhagen Post in the summer of 2011, due to the country’s prenatal testing program, Denmark “could be a country without a single citizen with Down’s syndrome in the not too distant future.” And, here in the United States, researchers have written about the purpose of California’s prenatal screening program:
Therefore, the dwindling in the number of births, to many, means that prenatal testing programs are fulfilling their purpose.
This crass view of eliminating from the world one of the multitudes of genetic variations that make up the human condition confounds me when compared to how the disappearance of other groups of individuals with distinctive characteristics are considered.
Just last week, the Guardian ran an article on a “lost” report surfacing after 40 years. The report was on the genocide perpetrated against the natives of the Amazon by Brazil’s military dictatorship. Reading the news account is heartbreaking:
- “People were traded like animals”
- “[O]fficers made children beat their parents, brothers whip their siblings and forced women back to work immediately after giving birth.”
- 30 Cinta Larga Indians were attacked with dynamite dropped from airplanes, with only two survivors to tell the story
These native tribes now exist in isolated clusters in the jungle.
Of course, that report can spark outrage because of the physical violence perpetrated against the native tribes. But, then there is the report of whole tribes possibly being wiped off the face of the earth through a natural disaster.
In 2004, a tsunami ravaged the south Pacific. This event was the subject of “Impossible,” a movie released at the start 2013. In the tsunami’s aftermath, the Times of India ran a headline: “Tsunami May Have Rendered Threatened Tribes Extinct.” Specifically, these were the Onge, Jarawa, Great Andamanese, Sintinelese, and Shompens tribes, all numbering less than 800 individuals total.
Commenting on the tribes’s possible extinction, Armand Marie Leroi in the New York Times wondered why their survival should be of such concern when a total of 150,000 lives were lost from the tsunami? Leroi relays how the Times of India noted that these tribes were “remnants of the oldest human populations of Asia and Australia,” and represented “Negrito racial stocks,” with the Shompens (interestingly) being the last of “Mongoloid stock.” Leroi then examines the possibly offensive view of such things as “racial stocks,” but turns the concern on its head:
There is a final reason race matters. It gives us reason – if there were not reason enough already – to value and protect some of the world’s most obscure and marginalized people.
Leroi describes how the racial characteristics of these tribes have permeated throughout the south Pacific through the mixture of different people with them. And, though members of the tribes seemed to have survived the Tsunami, they remain so small that eventually they will die out. Leroi laments, “a human race will have gone extinct, and the human species will be the poorer for it.”
In this era of multiculturalism, biodiversity, and interconnectedness, the loss of a kind of people seems intuitively to be tragic: a narrowing of the diversity of the human condition does not seem to be something to be aimed for, but something to be regretted.
Yet, just the opposite is occurring with Down syndrome.
There are active efforts being taken to reduce the number of lives born with Down syndrome with an utter lack of reflection. Policy-makers and leaders of professional medical organizations craft their public prenatal testing policies and practice guidelines to encourage its offering, uptake, and reduction of individuals with Down syndrome, without accounting for what might be lost should Down syndrome disappear.
I hope you will share your thoughts on what may be lost should Down syndrome disappear. But, I think at a certain level it strikes me as the height of hubris to believe there may not be something lost if a part of the human condition that has been with us for time immemorial were to be eliminated. As Leroi concludes, “the human species will be poorer for it.”
Update: A related post on this subject, “The case for conserving disability.”