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Showing posts with label Birth Defects. Show all posts
Showing posts with label Birth Defects. Show all posts

Saturday, January 9, 2021

The Last Children of Down Syndrome

Sarah Zhang
The Atlantic
Originally posted December 2020

Here is an excerpt:

Eugenics in Denmark never became as systematic and violent as it did in Germany, but the policies came out of similar underlying goals: improving the health of a nation by preventing the birth of those deemed to be burdens on society. The term eugenics eventually fell out of favor, but in the 1970s, when Denmark began offering prenatal testing for Down syndrome to mothers over the age of 35, it was discussed in the context of saving money—as in, the testing cost was less than that of institutionalizing a child with a disability for life. The stated purpose was “to prevent birth of children with severe, lifelong disability.”

That language too has long since changed; in 1994, the stated purpose of the testing became “to offer women a choice.” Activists like Fält-Hansen have also pushed back against the subtle and not-so-subtle ways that the medical system encourages women to choose abortion. Some Danish parents told me that doctors automatically assumed they would want to schedule an abortion, as if there was really no other option. This is no longer the case, says Puk Sandager, a fetal-medicine specialist at Aarhus University Hospital. Ten years ago, doctors—especially older doctors—were more likely to expect parents to terminate, she told me. “And now we do not expect anything.” The National Down Syndrome Association has also worked with doctors to alter the language they use with patients—“probability” instead of “risk,” “chromosome aberration” instead of “chromosome error.” And, of course, hospitals now connect expecting parents with people like Fält-Hansen to have those conversations about what it’s like to raise a child with Down syndrome.