How the End of Roe Would Change Prenatal Care
Genetic testing is a routine part of pregnancy. Abortion restrictions are already shifting how doctors talk about the results.
By Sarah Zhang, MAY 20, 2022 (The Atlantic)
Pregnancy, in this age of modern medicine, comes with a series of routinely recommended prenatal tests: At 11 weeks, a blood draw and an ultrasound to check for conditions such as Down syndrome. At 15 weeks, another blood test, for anomalies such as spina bifida. At 18 to 22, an ultrasound anatomy scan of the baby’s heart, brain, lungs, bones, stomach, fingers, and toes. This is when many parents learn if they’re expecting a boy or girl—but the more pressing medical reason is to look for anatomical defects, including severe ones such as missing kidneys or missing parts of the brain and skull.
With Roe v. Wade in place in America, women undergoing prenatal tests have typically had the legal right to end a pregnancy based on the information they learn. But abortion restrictions in certain states—by gestational age or by fetal anomaly—have already started limiting that choice. And if the Supreme Court overturns Roe, as seems likely, it will be further curtailed in some states. Routine parts of prenatal care could start to look quite different in states that ban abortion than in states that allow it.
Even now, laws in more than a dozen states that restrict abortion past 20 weeks are changing the use of the second-trimester anatomy scans. “People are moving those tests backward, doing them earlier than is optimal,” says Laura Hercher, a genetic counselor at Sarah Lawrence College who recently conducted a survey of genetic counselors in abortion-restrictive states. But the earlier the scan, the less doctors can see. Certain brain structures, such as the cavum septum pellucidum, might not develop until week 20, says Chloe Zera, an obstetrician in Massachusetts. Being unable to find this structure could indicate a brain anomaly, or just that the scan was done too early. Doctors might also pick up evidence of a heart defect but not know how severe or fixable it is. At 20 weeks, the heart is only the size of a dime.
Six states also currently restrict abortions on the basis of genetic anomalies. These laws typically target Down syndrome, or trisomy 21, in which the presence of a third chromosome 21 can have a range of physical and mental effects, milder in some children than others. Some states’ laws specifically mention Down syndrome; others extend the restrictions to a much wider range of genetic anomalies, many far more life-limiting than Down syndrome. In trisomy 13, for example, the physical anomalies are so severe that most babies live only for days or weeks. More than 90 percent do not survive past their first year.
In states that currently restrict abortion based on genetic anomalies but still allow it for other reasons under Roe, patients can get an abortion if they do not mention the genetic anomaly. This puts doctors and genetic counselors in a bind. For instance, says Leilah Zahedi, a maternal-fetal-medicine physician in Tennessee, what if doctors see a severe heart defect on an ultrasound? The underlying cause of many such heart problems is Down syndrome. But Tennessee restricts abortions specifically on the basis of trisomy 21. Should doctors tell patients about the connection to Down syndrome? Should they do the genetic testing? It could help parents prepare for everything else that comes with Down syndrome. But it would make it harder for them to get an abortion, if they chose to have one. They would need to go to a different doctor who does not know about the diagnosis, and take care not to reveal it.
Many of the current abortion restrictions do contain exemptions for cases with the most dramatic medical consequences: a fatal fetal anomaly or risk to the mother’s life. If Roe is overturned, many of the “trigger laws” that will immediately ban abortion in some states contain such exemptions as well. But what is “fatal” to the baby and what risk is acceptable to the mother are not entirely clear criteria. “There are very few bright lines in medicine,” says Cara Heuser, a maternal-fetal-medicine physician in Utah. “Laws really do not allow for all the nuance we see in medicine. They ignore the uncertainty.”
When it comes to fetal anomalies, “it’s very rare we can say, ‘This is universally fatal,’” Zera told me. For example, in the case of a massive brain hemorrhage that destroys most of the brain tissue but leaves the brain stem intact, the baby can breathe at birth but will need other medical care. Does fatal mean fatal in the absence of certain medical interventions? Which ones? And does an anomaly have to be fatal immediately, or within some period after birth?
There is ambiguity in exceptions for the life of the mother, too. A genetic counselor in Texas told me about a recent patient whose fetus was triploid, meaning it had a complete extra set of 23 chromosomes. This is one of the universally lethal conditions. But triploidy also poses an extra risk to the mother, because these pregnancies are linked to preeclampsia, or dangerously high blood pressure. Texas currently restricts abortions past about six weeks except in “medical emergencies.” High blood pressure may not be an immediate medical emergency, but it can become one. “What’s scary about being a person who is pregnant in Texas,” says the genetic counselor, whom I agreed not to name because this person feared legal retribution in the state, is that many physicians will wait to provide treatment “until mom’s life is truly in danger.” The fetus will not survive, and delaying may only increase the risk to the mother, but “we have to wait until you get sick enough to deliver you.” These laws create a general climate where doctors who fear prosecution may hesitate to treat the mother. “Sometimes,” Heuser says, “that hesitation can be fatal.”
If Roe is overturned and abortion is banned in many states, testing could take on a different role in prenatal care. Zahedi told me, anecdotally, of one recent patient whose doctor told her there wasn’t a point to genetic screening anymore. But she doesn’t actually think abortion bans will change the use of testing, even if they will limit what patients can do afterward. Most of her patients in Tennessee already do not choose abortion, she said, but the tests can provide information that inform obstetric care and prepare parents for what’s to come.
Others brought up the possibility, in the long term, of insurance companies dropping coverage for prenatal tests. Cumulatively, “all of these types of screenings and tests are incredibly expensive,” Hercher, of Sarah Lawrence, told me. Insurance currently has a financial incentive to cover them because preventing the birth of a child with severe medical needs saves on costs down the line. But if abortion is illegal in many states, Hercher asks, will insurance companies, especially regional ones, want to continue covering these tests? Or will patients have to pay for them out of pocket? These tests are currently routine for pregnant women, but whether they stay that way in the future could depend on where you live and what you can afford.
Sarah Zhang is a staff writer at The Atlantic.