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Health--it's what we all have in common: whether we're trying to maintain our health through good habits or improve our failing health. "Bridges to Health" is 90.5 WESA's health care reporting initiative examining everything from unintended consequences of the Affordable Care Act to transparency in health care costs; from a lack of access to quality care for minority members of our society to confronting the opioid crisis in our region. It's about our individual health and the well-being of our community.Health care coverage on 90.5 WESA is made possible in part by a grant from the Jewish Healthcare Foundation.

The Politics And Ethics Of Pennsylvania's Proposed Down Syndrome Abortion Ban

Sarah Boden
90.5 WESA
Kerry Cannon, 31, of Bethel Park.

Kerry Cannon, 31, of Bethel Park, works the salad bar at an Eat n' Park restaurant, a job she said she enjoys. She has Down syndrome, and said she has a good life. 

Cannon isn't alone. According to a 2011 survey of 284 people with Down syndrome, 99 percent said they were happy with their lives and 97 percent said they liked who they are.

Cannon said she doesn’t support abortion, and she gave this piece of advice to someone who, because of Down syndrome, is considering terminating their pregnancy.

“It’s OK to be scared,” she said. “But I don’t think you should make a decision out of fear, just because the child might have Down syndrome. I feel like all people are equal.”

What's in the bill

A bill passed in the Pennsylvania House of Representatives would ban women from getting an abortion if the sole reason for doing so is that the child could have Down syndrome. The state of Pennsylvania already bans women from getting an abortion based on the sex of the baby.

House Bill 2050 was co-sponsored by the Republican Speaker of the House, Mike Turzai.

Turzai said he believes that terminating a pregnancy based on a possible Down syndrome diagnosis is wrong, because plenty of people with Down syndrome go on to live healthy, productive lives. “Right now you can test for Down syndrome. And it has become the reason for some abortion providers to suggest you probably don’t want to have that child,” he said. 

The tests he referred to are prenatal trisomy screenings for pregnant women. It can indicate whether or not a fetus is at risk for certain health conditions, like Down syndrome. Further non-invasive testing can diagnose Down syndrome with 98 percent accuracy. It’s the most common chromosomal abnormality among live infants. 

Every family's situation is different

While lawmakers are framing their arguments as simply supporting or opposing abortion rights, many bioethicists will say this issue is complex and shouldn’t be legislated.

Prenatal screening can only tell parents if their child will likely be born with Down syndrome; the severity won’t be known until years later.

In addition to mild to moderate intellectual disabilities, people with Down syndrome are also more likely to have Autismheart defectsepilepsyand digestive problems.

The average lifespan of someone with the condition is only 60 years, but that’s a significant increase from 25 years in 1983.

Dr. Peter Bulova, head of the University of Pittsburgh’s Adult Down Syndrome Center, said a major reason people with Down syndrome are living longer is due to advances in cardiac surgery. He said early interventions in areas like speech therapy and strength training have also had hugely positive impacts on his patients.

“Most of our patients that are now coming through the school system do get through the school system,” he said. “They…are able to do jobs and have a very high quality of life.”

Bulova said that people with Down syndrome also tend to love to be social and have high levels of empathy. But, he added, there’s a range.

“We have several patients that are nonverbal and will require assistance throughout their entire life. These are people that either will be dependent on their parents or some of them will have to move into a group home and get 24-hour care,” said Bulova.

Reverend Natalie Hall is an ordained Evangelical Lutheran Church of America. At 37, she was pregnant with her second child and around the 11-week mark, she got a blood test to find out if her fetus was likely to have Down syndrome. It came back negative, which Hall said was a relief.

“I am grateful that I will never have to make a decision like that,” she said. “I’m profoundly grateful.”

Hall said part of the reason she feels this way is because after having her first child, she was overwhelmed by how much help and support she needed.

“It’s a tornado experience,” said Hall. “It’s exhausting and exhilarating all at the same time.”

Hall said she doesn’t know if she would be capable of raising a child with Down syndrome, which she said is why she might have considered terminating such a pregnancy.

“I’m not convinced that I would have the care and support I would need to embark on caring for a child with Down syndrome,” she said. “Or a child with any other significant developmental or physical difficulties.”

As a member of the clergy Hall said she’s counseled women who have struggled over whether to have abortions. Ultimately, she said it’s a personal choice that’s made more difficult by a society that’s not very accepting or supportive of people with disabilities.

Jessica Semler, Public Affairs Director for Planned Parenthood of Western Pennsylvania, said the commonwealth has one of the more conservative legislatures when it comes to choice and abortion rights. She’s against the bill.

“Many parents find that having a child with Down syndrome is the right decision for them, but that shouldn’t mean that their experience should lead to a law that forces all families into that same situation,” Semler said.

A larger anti-abortion strategy

Turzai said that his legislation was partially inspired by a law passed in Ohio late last year. Indianaand North Dakota have also passed similar legislation. He pointed out the bill got bipartisan support in the state House, including seven Democratsfrom Allegheny county. Scott Wagner, the Republican candidate running for governor, said he supports the bill, while Governor Tom Wolf has all but said he’d veto the bill.

But if it became law, it’d likely be challenged in court. The laws in Ohioand Indianawere struck down in court, when judges said the laws intruded into the privacy of a woman’s decision making. Similarly, the American College of Obstetricians and Gynecologists does not supportlegislation that bans abortion based on the reason a woman is seeking one.

House Bill 2050 is a narrow ban because it only addresses Down syndrome, but opponents have said there’s a larger political strategy at work here.

Sue Frietsche, senior staff attorney at the Women’s Law Project, said that context can be found in a memowritten more than a decade ago by James Bopp, the top attorney for the National Right to Life Committee.

“It’s a detailed roadmap for how to use incremental restrictions on abortion to end abortion access in the United States,” said Frietsche.

Frietsche said these incremental restrictions at the state level, such as construction guidelines for clinics or the propsed Down syndrome bill, have long been the strategy of anti-abortion activists throughout the U.S.

She said the memo suggests that “that anti-abortion strategists pass a series of incremental incursions on the abortion right. So chip away at Roe v. Wade.”

The bill is now sitting in the Senate Judiciary committee. A spokesperson for the committee said that there’s currently no timeline to discuss it.

WESA's Bridges to Health covers the well-being of Pennsylvanians and is funded by the Jewish Healthcare Foundation.

WESA also receives funding from the University of Pittsburgh.

Sarah Boden covers health and science for 90.5 WESA. Before coming to Pittsburgh in November 2017, she was a reporter for Iowa Public Radio. As a contributor to the NPR-Kaiser Health News Member Station Reporting Project on Health Care in the States, Sarah's print and audio reporting frequently appears on NPR and KFF Health News.