Alison Piepmeier’s daughter, Maybelle, just started the first grade. School is especially hard for Maybelle because she has Down syndrome.
“We’re helping her to be a kid who learns what she can, but there are things she’s not going to be able to do,” Piepmeier, a professor of women’s and gender studies at the College of Charleston, in South Carolina, told BuzzFeed News.
Down syndrome is the most common genetic disorder in babies, characterized by intellectual disability, physical growth delays, and a decreased life expectancy.
“She’s a different kid,” Piepmeier said, “but she deserves to be a member of the world we live in.”
When Piepmeier was pregnant, she didn’t get an “amnio,” an invasive draw of amniotic fluid that could be tested for the extra chromosome that causes Down syndrome. She and her husband decided they didn’t want to know.
But if she had known? “If I found out if this was truly a fetus who was going to have Down syndrome, I’m pretty sure I would have terminated,” she said.
It’s a difficult choice, and one that a growing number of women have to face as genetic testing advances. In 2011, researchers debuted so-called noninvasive prenatal tests, or NIPTs, which can be done with a simple blood draw anytime after 10 weeks into the pregnancy. These tests can identify the sex of the fetus as well as several disorders, including Down syndrome. In the past year alone, more than 800,000 women in the U.S. have taken one of these new tests.
According to the most recent numbers, roughly 60% to 90% of women who get a prenatal diagnosis of Down syndrome will choose to terminate their pregnancy. As a result, from 1996 to 2010, 30% fewer babies with Down syndrome were born per year. And since then, because of the boom in noninvasive testing, the numbers have likely dropped even further, experts say.
These figures are alarming to people who believe that abortion is immoral. Later this month, Ohio lawmakers will debate a new bill that would ban women from terminating a pregnancy based on a positive test for Down syndrome.
Abortion rights advocates are disturbed by the bill, arguing that it’s deliberately adding yet another obstacle to an increasingly restrictive process under the guise of disability rights.
“We’ve seen lawmakers tell a woman they have to wait 24 hours, they have to get parental approval, they have to have an abortion in a facility with a ridiculous number of regulations,” Laura Hercher, a genetic counselor at Sarah Lawrence College, told BuzzFeed News. “The idea that you can just say — in this situation, with these reasons — you can’t have an abortion? This is unconstitutional.”
The Ohio bill is not without precedent. It’s only the latest in several antiabortion bills that restrict not how, but why a woman chooses to have an abortion.
Many doctors, genetic counselors, and bioethicists argue that such laws, while tough to actually enforce, tread dangerously on the the ability of a woman to make a well-informed medical decision with her doctor. Others argue that the bills are blatant attempts to challenge Roe v. Wade.
Lobbyists pushing for the Ohio bill’s approval are hopeful that Gov. John Kasich, a Republican presidential candidate, will sign it by Thanksgiving.
Since he entered office in 2011, Kasich has enacted 16 antiabortion measures and closed nearly half of the state’s abortion clinics. His legislature, where two-thirds of the lawmakers in both houses are endorsed by the National Right to Life Committee, is expected to approve the bill, Mike Gonidakis, the president of Ohio Right to Life, told BuzzFeed News.
Gonidakis and Ohio Right to Life crafted the bill with legislators and will be bringing families in to testify later this month. According to Gonidakis, the bill is a way to ensure that people with disabilities aren’t discriminated against.
“We all want to be perfect, we all want our children to be born perfect,” Gonidakis said. “But if we make decisions on who can live and die based on that idea of perfection, what does that say about us as a society? We look at this as an antidiscrimination bill as much as an abortion bill.”
The high rates of abortion in these cases, Gonidakis said, shows ignorance about the happy lives children with Down syndrome can go on to lead. Others have argued that a diminishing population of people with Down syndrome could mean greater discrimination, fewer resources, and perhaps a marked difference between race or wealth of those who have the condition and those who don’t.
But many bioethicists argue that the bill has nothing to do with stigma toward Down syndrome.
“A woman might choose to have an abortion because she doesn’t want a third child. Do such abortions stigmatize third children?” Bonnie Steinbock, a professor of bioethics at the University of Albany, told BuzzFeed News. “A woman chooses abortion in either case because, in her situation, having that child will impose burdens she does not want to undergo.”
The bill states that doctors who knowingly perform abortions for women when the “sole reason” is a prenatal Down syndrome diagnosis will be convicted of a felony, have their medical licenses revoked, and be fined.
Though it’s still unclear how the law will be enforced, doctors will have to indicate on a report filed to the state government that they had no knowledge that the woman was seeking an abortion for that reason.
“This is not what we want to do to the doctor-patient relationship,” Kellie Copeland, executive director of NARAL Pro-Choice Ohio, told BuzzFeed News. “On the one hand there’s this chilling effect with doctors, and on the other side, there’s this chilling effect on patients where they feel like they can’t talk to their doctors about what’s going on.”
Some genetic counselors fear that bills like these could eventually lead to restrictions on prenatal testing itself, viewing it as part and parcel of abortion.
“Prenatal testing has values above and beyond termination, but prenatal testing is tied to termination,” Hercher, the genetic counselor, said. “I think when we try to avoid that, we look really hypocritical, because of course part of it is allowing people these options.”
In 2013, a bill was passed in North Dakota making it illegal for doctors to perform abortions based on any fetal genetic abnormalities, even in cases where the fetus will die shortly after birth.
So far, there have been no prosecutions under the North Dakota law.
Similar laws have been debated in Indiana, Missouri, and South Dakota this year. And seven other states — Arizona, Kansas, North Carolina, North Dakota, Oklahoma, Pennsylvania, and South Dakota — ban abortions that are based on the sex of the fetus. Arizona also includes race in their ban.
On one point, abortion rights activists and opponents do agree: Crafting laws that are unconstitutional and unenforceable is a good way to get a challenge in front of the Supreme Court.
“Yes, it does violate Roe v. Wade as outlined by the court, but Roe v. Wade isn’t a wall that’s cemented,” Gonidakis said. “We can become better than Roe v. Wade.”
Neither national Down syndrome advocacy groups nor the National Society of Genetic Counselors have come out in support or against these bills, highlighting the sensitivity of an issue framed in terms of discrimination against disability.
“All the Down syndrome organizations, including the ones in Ohio, are neither pro-life nor pro-choice, but pro-information,” Brian Skotko, a medical geneticist at Massachusetts General Hospital who specializes in Down syndrome, told BuzzFeed News.
Skotko, too, is hesitant to take a position on the bill. “My role is to make sure that women have accurate information about Down syndrome, and it’s not my responsibility to carry personal opinions about what women can or cannot do,” he said. “But I hope they are informed.”
For Piepmeier, raising a child with Down syndrome has come with challenges and joys in equal measure. “I don’t want us to have a world in which people are trying to get rid of all the disabilities so we can be exactly the same,” she said.
But that choice should be up to the woman, not the government, Piepmeier said. “I want women to be able to make a real decision based on all of the information they have. I think that’s incredibly important.”