Testing for fetal abnormalities can alert expectant parents to potential health problems to come. And it’s the parents who should decide on how to act on those results, right?
Not necessarily. In North Dakota, the governor is considering signing two anti-abortion bills that would be among the most restrictive in the nation. The state House and Senate have endorsed separate legislation that prohibits abortions after six weeks and bans them for reasons of gender or fetal abnormalities. If signed, the bills would take the decision of what to do when a pregnancy is not developing as expected out of the hands of parents. Abortion-rights advocates are expected to fight any new laws in court, elevating the debate in North Dakota to the level of political theater.
The situation unspooling there is certainly dramatic: while states enacted 43 new restrictions on abortion last year, North Dakota’s effort to ban abortion even for conditions incompatible with life — such as anencephaly in which parts of the brain and skull don’t form, or Tay-Sachs disease, a degenerative condition that paralyzes babies and typically prevents them from reaching their third birthday — reaches farther than any state has in limiting a woman’s ability to terminate a pregnancy.
The fetal abnormalities bill would ban abortion due to “any defect, disease or disorder that is inherited genetically.” It also extends to any physical disfigurement. In essence, it means that women in North Dakota who are told they may be carrying a baby with Down syndrome, spina bifida, or a fatal condition will have no choice but to have the baby; they would no longer be able to legally end their pregnancies. (As it stands, women in North Dakota don’t have a ton of options: as noted in a Time cover story by Kate Pickert, it’s one of four states with just one abortion clinic.) In addition to the medical reasons for aborting, expectant mothers may decide to end such pregnancies for a variety of reasons; in some cases, mothers may feel psychologically or emotionally unable to care for a child who may have special medical or developmental needs, while still others may feel economically incapable of supporting a child that may need such additional medical care.
While the latest genetic testing techniques add a fresh twist to the debate, the proposed abortion restrictions in North Dakota only reawakens the decades-old discussion over whether a woman has the right to chose to end a pregnancy, for whatever reason.
“We should not be discriminating against unborn disabled children,” says Daniel McConchie, vice president of government affairs for Americans United for Life, an anti-abortion group that has helped draft legislation tightening restrictions on abortion in many states. The group argues that abortions because of fetal abnormalities amounts to eugenics, or an attempt to impose cultural perceptions of normality on reproductive decisions.
But neither should there be discrimination against mothers, says Elizabeth Nash of the pro-choice Guttmacher Institute. “You are talking about making an incredibly difficult situation immeasurably more difficult,” says Nash, who tracks state regulations on reproductive health.
The legislation puts North Dakota at the epicenter of the most recent efforts to curtail abortion; in recent weeks Arkansas passed legislation that would ban abortions after 12 weeks, when a fetal heartbeat can generally be found on ultrasound. The other bill before Governor Jack Dalrymple would ban abortion in North Dakota even earlier in pregnancy, at six weeks, which may be long before a woman even realizes she’s pregnant.
How would such laws affect women who wanted an abortion, but were forced to carry their babies to term? There isn’t much data on this, but last fall, researchers at the annual meeting of the American Public Health Association presented the preliminary results of a study that examined the impact of denying abortions to women who requested them. Expectant mothers who couldn’t get an abortion because they just exceeded the gestational limit for the procedure in their state — the range is currently as low as 10 weeks and as high as 26 weeks — were compared to women who arrived at clinics shortly before the threshold and were able to end their pregnancies. Five years later, researchers found that the greatest impact of being denied an abortion was on socioeconomic status: women who couldn’t get an abortion were three times likelier to be living or staying in poverty compared to women who received abortions they wanted.
“Women are remarkably resilient,” says Tracy Weitz, an associate professor of obstetrics and gynecology at University of California, San Francisco and a medical sociologist who researches abortion in the U.S. “There does not appear to be long-term mental health consequences from being denied an abortion or from having an abortion.” In other words, women learn to love their kids; they just don’t have the economic resources to raise them.
The calculus is inevitably trickier, however, when it comes to pregnancies that don’t develop normally. Children with disabilities need medical care and therapy, yet North Dakota’s legislation doesn’t earmark additional money for such services. “If you force women to have an unwanted pregnancy, if that child suffers from some sort of fetal anomaly you need more in-home support, a better educational system, more care for kids with special needs,” says Weitz. “Legislatures get away with pretending this is about compassion for the unborn but their policy clearly says it’s not.”
Last year, I reported about a lawsuit filed by parents of a daughter with Down syndrome, one of the best-known chromosomal disorders for which testing is available:
In March, the parents of a 4-year-old Oregon girl with Down syndrome won a $2.9 million lawsuit after doctors failed to diagnose her condition prenatally. Ariel and Deborah Levy — who say they would have ended the pregnancy had they known about the diagnosis — won a “wrongful birth” lawsuit against Portland-based Legacy Health System. “These are parents who love this little girl very, very much,” their attorney, David K. Miller, told an ABC News affiliate. “Their mission since the beginning was to provide for her, and that’s what this is all about.”
McConchie, who suffered a spinal cord injury as an adult that confines him to a wheelchair, says North Dakota’s legislation is about “protecting those most vulnerable among us.” If women don’t want — or can’t afford — to have a child with special needs, says McConchie, they should consider putting the child up for adoption. “There are other options than terminating someone’s life simply because a parent doesn’t want a particular child or they deem themselves unfit to be a parent in a certain situation,” he says.
Research shows that between 70% to 90% of women who find out while pregnant that their fetus has Down syndrome choose to abort. A continually evolving battery of tests make it possible for women to learn this information earlier than ever — even as soon as ten weeks into pregnancy — and that concerns groups such as Americans United for Life, which worries that such testing will eventually lead to unilateral abortions for any chromosomal aberration.
“The bill in North Dakota highlights a current national debate: will babies with Down syndrome slowly start to disappear with the advent of new noninvasive blood tests?” says Dr. Brian Skotko, co-director of the Massachusetts General Hospital Down syndrome program. “New technology means more women will be getting a prenatal diagnosis of Down syndrome. And more prenatal diagnoses mean more women will need to make that personal decision on how to proceed with their pregnancy. In North Dakota, there will only be one option under the current law.”
Amy Julia Becker learned that her daughter, Penny, has Down syndrome once she was born. While she’s sympathetic to the North Dakota legislation, she believes a better approach is endorsed by states such as Kentucky and Massachusetts, which require doctors to provide the latest, evidence-based information on not only the limitations of the condition but the “good lives that are possible for people with Down syndrome.”
“Pro-choice advocates should be concerned about the correlation between prenatal testing and abortion of babies with disabilities because data suggest that women often are not given the information they need in order to make an informed choice about their child, their family, and their future,” Becker wrote in her recent ebook about prenatal testing.
And part of being completely informed involves being free to make a decision based on that information. “If you’re getting prenatal tests, you are hoping to have a baby you can take care of,” says Nash. “If your baby has anencephaly with serious brain issues, you are not going to be able to raise a child. To find out you can’t obtain an abortion is heartbreaking. You are already in a very difficult place.”
Last year, Texas freelance writer Carolyn Jones shared her experience deciding to end a pregnancy that doctors told her involved disabilities so severe that it was doubtful her child would be born alive. She recoiled at using the term “abortion” to describe what she went through, writing in the Texas Observer that “it felt like a physical blow to hear that word, abortion, in the context of our much-wanted child.”
Before getting an abortion, Jones had to obtain an additional state-mandated ultrasound – at the time, Texas was one of seven states that required women contemplating abortion for any reason to hear a doctor describe in detail their fetus’ anatomy. She later learned of a clause that allows women carrying babies with irreversible abnormalities to opt out. “You can imagine that having politicians muscling in on the most private and devastating personal situation I’ve ever been [in] was terrible,” Jones said at the time. “As devastating as this is, I feel at peace with the choice I made.”
Critics of the legislation are concerned that the penalties called for in the bill — up to a year in prison for any physician performing an abortion either because of gender or a fetal anomaly — may also discourage doctors from completely sharing results of genetic tests with expectant mothers, in an effort to avoid the difficult decisions, and potential prosecution, that may come from such disclosure.
If North Dakota’s Dalrymple signs the fetal anomaly legislation into law, women won’t be able to opt out — from an ultrasound or from caring for a disabled child. Dalrymple must now weigh if that’s an achievement he wants his state to claim.