Karianne Lisonbee stepped up to the lectern to talk about what she called “a terrible form of discrimination.”
The highly controversial legislation — and similar bills passed in North Dakota, Ohio, Indiana and Louisiana — has put Down syndrome front and center in the abortion debate when the condition is becoming more widely understood and accepted in the United States. In many neighborhoods today, children with Down syndrome participate in mainstream classrooms and on sports teams. Companies including Safeway, Walgreens and Home Depot have created programs to train and employ adults with the condition (along with adults with other disabilities). This year, Gerber, the maker of baby food, lit up social media with expressions of delight when it announced that it had chosen Lucas Warren — who has Down syndrome — as its newest “spokesbaby.”
Critics of the bills say they are unconstitutional and designed to restrict abortion, not protect people with Down syndrome. They point out that there has been little discussion by the bills’ sponsors about increasing funding for social services, medical coverage and other support for people with Down syndrome. They also argue that the bills undermine the trust relationship between patients and doctors as well as the right to privacy under the 14th Amendment. The American Civil Liberties Union, Planned Parenthood and other organizations have mounted challenges in court — so far, successfully — to block the implementation of the bills that have been passed.
“Many parents find that having a child with Down syndrome is the right decision for them, but this does not mean that their experience should lead to a law that forces other families into the same situation,” Karrie Galloway, president and CEO of Planned Parenthood Association of Utah, has said.
Only the law in North Dakota has taken effect; it has proved to be largely unenforceable because of the private nature of the decision. In Ohio, a bill passed late last year is scheduled to take effect March 23, but abortion providers in the state have asked a federal court to block the law. In September, a federal judge permanently struck down provisions of Indiana’s law, writing that they violated due process under the Constitution and conflict with the Supreme Court’s Roe v. Wade ruling and others regarding a woman’s right to seek abortion.
The bills represent the latest twist in the political debate over abortion, which has raged since a 1973 Supreme Court ruling recognized a woman's right to the procedure. Since then, antiabortion activists have constructed what the Guttmacher Institute calls “a lattice work of abortion law, codifying, regulating and limiting whether, when and under what circumstances a woman may obtain an abortion.” Antiabortion activists have also moved the battleground from Washington to the states.
In recent years, activists have pushed an array of bills in state legislatures to limit the procedure, including proposals to ban abortion after 20 weeks, when, they claim, the fetus is “pain-capable”; to bar a woman from obtaining an abortion based on to the gender or race of the child; and to institute mandatory waiting periods, state-mandated counseling and requirements for parental approval.
The Down- syndrome bills mark a relatively new frontier for antiabortion activists. Down-syndrome advocacy groups for the most part have stayed out of the abortion debate, neither endorsing the bills nor coming out against them. The National Down Syndrome Society (NDSS) declined to comment directly on the bills but expressed concern that women around the world, including in the United States, are not receiving “accurate, up-to-date information about Down syndrome from their health-care providers.” NDSS President Sara Hart Weir said children and adults with the condition “continue to exceed expectations.”
Michelle Sie Whitten, president of the Denver-based Global Down Syndrome Foundation, said that while “it is a profound issue that needs discussion,” the group has no position on the bills, as there are just as many families that identify as antiabortion as abortion rights proponents who have and support children and adults with Down syndrome.
“The fact that there is legislation about it underscores the passion behind it,” said Whitten, who has a daughter with the condition.
The debate about abortion has become intertwined with Down syndrome in recent years because of the availability of a noninvasive test that can screen for Trisomy 21 — the chromosomal defect that leads to the condition. The test requires only a blood sample from the mother that is analyzed for tiny bits of DNA from the baby. In the past, women had to undergo chorionic villus sampling, in which cells are taken from the placenta, or amniocentesis, which involves removing fluid from the womb, to test for the chromosomal abnormality. Both of those procedures are relatively safe but not completely risk-free and are therefore recommended only for older mothers or those at risk of having fetuses with genetic abnormalities due to other reasons.
The blood test is not routine in the United States, but it is becoming so in a growing number of other countries.
In Britain, where the National Health Service offers a screening for the condition in all pregnant women and the abortion rate for pregnancies that test positive is estimated to be as high as 90 percent, the BBC has explored the idea of “A World without Down's Syndrome.” In Denmark, where testing is widespread, the Copenhagen Post has reported that Denmark “could be a country without a single citizen with Down’s syndrome in the not too distant future.” And in China, the state-run CCTV has not-so-subtly reminded would-be parents through its social-media channels that “current medical science has no effective prevention or treatment measures” for Down syndrome — but that the issue can be “discovered through prenatal screening.”
The bills making their way through U.S. state legislatures come on the heels of a report that aired on CBS in the summer that Iceland is “eradicating Down syndrome.” The report created an uproar. Author Bonnie Rochman, writing in Quartz, called the situation in Iceland a “disturbing, eugenics-like reality.” The “Everybody Loves Raymond” actress Patricia Heaton tweeted that “Iceland isn’t actually eliminating Down syndrome. They’re just killing everybody that has it. Big difference.”
In Slate, Christina Cauterucci accused antiabortion leaders of “hijacking this rhetoric of the disability rights movement to argue against women’s rights to choose their own future for their families and bodies.”
Amid this debate, the Global Down Syndrome Foundation’s Whitten said it is important to separate facts from myths about the condition. Down syndrome, which is characterized by the presence of three copies of chromosome 21 instead of the normal two, was first described as a distinct condition in 1862 by English physician John Langdon Down. For many decades, children with the condition were abandoned, ostracized or even killed.
But today, thanks to medical advances and better integration into society, many individuals with Down syndrome live long, productive and happy lives. The average life span among people with Down syndrome has more than doubled from 25 years in 1983 to about 60 years, Whitten said. And while most have a mild to moderate range of intellectual impairment, there is wide variation in their abilities, and more and more are living independently, going to college, holding challenging jobs and getting married.
Although there is no official estimate of the number of people living with the condition in the United States, the Centers for Disease Control and Prevention has estimated that it occurs in 1 in 691 births.
Whitten said that one of the biggest challenges people with the condition face is a precipitous drop in research funding over the years from the National Institutes of Health, a decline that, she said, makes Down syndrome the most poorly funded major genetic condition in the United States.