Downright discrimination

Ever since free prenatal screening for Down syndrome began in Denmark in 2004, the number of babies with the condition has dropped, with only 18 born last year, according to a new report from the Danish Cytogenetic Central Registry. The Danish National Board of Health said 95 percent of parents who discover a chromosomal abnormality like Down syndrome in their unborn baby choose to abort the child. Other countries have similar stories: A 2017 report out of Iceland found parents aborted nearly 100 percent of babies with Down syndrome.

Last month, the U.K. government announced the widespread introduction of a new prenatal screening method to hospitals. Older, more invasive tests put patients at risk for miscarriage if not done early in a pregnancy. The new method uses a blood sample from women as soon as 10 weeks’ gestation. Supporters say the testing helps mothers make informed decisions about their pregnancies. But opponents say that—in combination with negative portrayals from healthcare providers and the lack of support for people with the condition—the tests will lead to further discrimination against babies with Down syndrome.

Already, 90 percent of U.K. parents who receive the diagnosis abort their babies. British hospitals that offer early testing report a further 30 percent decrease in the number of Down syndrome births.

“We seem to be intent on screening out a certain group of people simply based on a characteristic,” said Lynn Murray from the U.K. Down syndrome advocacy group Don’t Screen Us Out.

Doctors may not overtly pressure families into aborting their children, but Murray said medical staff often fail to give families the full picture of what life with Down syndrome looks like. Studies show people who have the diagnosis are overwhelmingly happy with their lives and their families love them. But doctors often only share information about medical complications with families.

“Because of ignorance, there would be a tendency to present the wrong picture,” Murray said. “There could at very best be a subtle pressure [to abort] because of the fact that there isn’t guidance to support the continuation of pregnancy.”

Murray has a 20-year-old daughter with Down syndrome. Rachel is her fourth and youngest child. Murray chose not to undergo prenatal screening, but she said her pressure-free situation was a best-case scenario.

U.K. law allows an abortion up to 24 weeks of gestation but extends the limit up to birth for babies with Down syndrome. One woman told Murray that even though she chose to keep her baby who had the diagnosis, a doctor reminded her it wasn’t too late to abort when she went to the hospital to deliver.

The focus on screening out the condition has kept people from receiving the medical support they need. The U.K. healthcare system could offer speech therapy to help those with Down syndrome live longer lives, since people with learning disabilities often die prematurely in hospitals in part because of an inability to communicate their pain.

“We are now looking at screening people before birth for a lot of different conditions, and we need to get this right,” Murray said. “Otherwise, we’ll think that nobody is fit to be born.”