Republicans in the state House of Representatives want to vote next week on a controversial bill that would ban abortions based on a diagnosis or belief that a fetus has Down syndrome.
The connected and complex politics and issues can be especially difficult for people and families of people who have Down syndrome, a genetic disorder that has been in the national and international spotlight.
Late last year Ohio passed a law banning abortions because an unborn child has or may have Down syndrome that was to take effect March 23. But on March 14, a federal judge temporarily blocked its enforcement, ruling that it is unconstitutional because it would interfere with a woman’s lawful right to get an abortion.
The American Civil Liberties Union, which filed a lawsuit on behalf of several abortion providers including Planned Parenthood to block the Ohio law, also opposes the Pennsylvania one, as does the American Congress of Obstetricians and Gynecologists. The ACLU and other groups have blocked similar laws that have passed in Indiana, Louisiana and North Dakota, while other states — Kentucky, Utah — are considering bills.
“This is cropping up around the country,” said Heather Sachs, policy and advocacy director for the National Down Syndrome Congress, in a phone call Tuesday afternoon from an advocacy conference in Washington, D.C.
The issues stretch beyond the U.S., as the Pennsylvania bill’s champion, House Speaker Mike Turzai, R-Bradford Woods, referenced during a meeting of the chamber’s Health Committee Monday. As the Post-Gazette reported, he talked about being appalled at Iceland, a relatively small country that has been in the news for using prenatal screening and pregnancy termination to practically eliminate Down syndrome there.
Mr. Turzai mused, “How many of us could have been eliminated through abortion because … some segment of the world doesn’t think we’re good enough?”
Other politicians and pundits have weighed in on Iceland, which Washington Post columnist George F. Will wrote last month is committing “genocide.” He also wrote about cute 1-year-old Lucas Warren of Dalton, Ga., whom the Gerber brand named as its 2018 Gerber Spokesbaby — the first with Down syndrome.
According to the National Down Syndrome Society, the condition occurs when an individual has a full or partial extra copy of chromosome 21. The group says that, according to the federal Centers for Disease Control and Prevention, approximately one in every 700 U.S. babies, or about 6,000 babies each year, are born with Down syndrome, making it the most common chromosomal condition.
Individuals with Down syndrome possess varying degrees of cognitive delays, from mild to moderate (mostly) to severe, and share characteristics such as low muscle tone, small stature and an upward slant to the eyes as well as increased health risks such as heart defects. But as the NDSS notes, thanks to advances in education and medicine, many people with Down syndrome are leading much longer and often very fulfilling lives.
Take John “Frank” Stephens, a writer, actor and activist whose testimony this fall to the U.S. Senate asking for more funding to help people with Down syndrome, like him, went viral — and the National Institutes funding was granted. On March 21 World Down Syndrome Day, he spoke in Geneva before the United Nations, saying that countries such as Iceland and Denmark don’t need to “eradicate” people like him, but should love and value them — including for the medical insights their condition can provide into diseases such as Alzheimer’s.
“He had to hire a publicist!” says the National Down Syndrome Congress’ Ms. Sachs, who is the mother of a 12-year-old daughter with Down syndrome.
She points out that, like other Down syndrome organizations, her group doesn’t take a stand on bills like Pennsylvania’s, “because we represent a wide range of constituents — some are pro-choice, some are pro-life.”
That is, they’re divided on abortion, like other groups of Americans are.
So, “We really push information” — getting accurate information to parents who need it so they can weigh the “challenges and joys” of having a child with Down syndrome. She points out that Pennsylvania was one of the first states to enact, in 2014, a Down syndrome information law, requiring health care providers to give information to mothers who receive a diagnosis that the fetus has a high likelihood of having the disorder.
That law was called “Chloe’s law” for Chloe Kondrich, who’s now a 14-year-old with Down syndrome at Upper St. Clair High School. She and her father, Kurt Kondrich, last month spoke for the second time at the United Nations in New York City about this issue, on which he’s decidedly anti-abortion rights (and definitely pro-Chloe). Having watched the issue evolved over the past decade to where some countries are terminating nearly 100 percent of Down syndrome pregnancies, he believes it’s only going to be more in the news.