Pregnancy, in this age of modern medicine, comes with a number of routinely recommended prenatal tests: at 11 weeks, a blood draw and an ultrasound to check for conditions like Down syndrome. At 15 weeks, another blood test, for abnormalities such as spina bifida. Between ages 18 and 22, an anatomical ultrasound of the baby’s heart, brain, lungs, bones, stomach, and fingers and toes. This is when many parents know whether they are expecting a boy or a girl, but the most pressing medical reason is to look for anatomical defects, including serious ones like missing kidneys or missing parts of the brain and skull.
With Roe vs. Wade In the United States, women who undergo prenatal testing generally have the legal right to terminate a pregnancy based on the information they learn. But restrictions on abortion in certain states, based on gestational age or fetal abnormality, have already begun to limit that choice. And if the Supreme Court overrules Roe, as seems likely, will drop further in some states. The 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 restricting abortion after 20 weeks are changing the use of second-trimester anatomical scans. “People are delaying those tests, doing them earlier than optimal,” says Laura Hercher, a genetic counselor at Sarah Lawrence College, who recently conducted a survey of genetic counselors in states where abortion is restricted. But the sooner the scan is done, the less doctors can see. Certain brain structures, like the cavum septum pellucidum, might not develop until week 20, says Chloe Zera, an obstetrician in Massachusetts. Not being able to find this structure could indicate a brain abnormality, or simply that the scan was done too soon. Doctors may also detect evidence of a heart defect, but not know how serious or repairable it is. At 20 weeks, the heart is the size of a dime.
Six states also currently restrict abortions on the basis of genetic abnormalities. These laws generally focus on Down syndrome, or trisomy 21, in which the presence of a third chromosome 21 can have a variety of physical and mental effects, milder in some children than others. Some state laws specifically mention Down syndrome; others extend the restrictions to a much broader range of genetic abnormalities, many of which are far more life-limiting than Down syndrome. In trisomy 13, for example, the physical abnormalities are so severe that most babies live for only days or weeks. More than 90 percent do not survive beyond their first year.
In states that currently restrict abortion based on genetic abnormalities but still allow it for other reasons under Roe, patients can abort if they do not mention the genetic abnormality. This puts doctors and genetic counselors in a bind. For example, says Leilah Zahedi, a maternal-fetal medicine doctor in Tennessee, what if doctors see a serious heart defect on an ultrasound? The underlying cause of many of these heart problems is Down syndrome. But Tennessee restricts abortions specifically on the basis of trisomy 21. Should doctors tell patients about the Down syndrome connection? Should they do genetic testing? It could help parents prepare for everything else that comes with Down syndrome. But it would be more difficult for them to abort, if they chose to do so. They would have to go to a different doctor who does not know the diagnosis and be careful not to reveal it.
Many of the current abortion restrictions contain exemptions for cases with the most dramatic medical consequences: a fatal fetal anomaly or risk to the life of the mother. Yes Roe is struck down, many of the “trigger laws” that will immediately ban abortion in some states also contain such exemptions. But what is “fatal” for the baby and what risk is acceptable for the mother are not entirely clear criteria. “There are very few clear lines in medicine,” says Cara Heuser, a maternal-fetal medicine physician in Utah. “The laws don’t really allow for all the nuances that we see in medicine. They ignore the uncertainty.”
When it comes to fetal abnormalities, “it’s very rare that we can say, ‘This is universally fatal,'” Zera told me. For example, in the case of a massive cerebral 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? And does an abnormality have to be fatal immediately or within some period after birth?
There is also ambiguity in the exceptions for the life of the mother. A genetic counselor in Texas told me about a recent patient whose fetus was triploid, meaning she had a full extra set of 23 chromosomes. This is one of the universally lethal conditions. But triploidy also poses additional risk to the mother, because these pregnancies are linked to preeclampsia, or dangerously high blood pressure. Texas currently restricts abortions past six weeks except for “medical emergencies.” High blood pressure may not be an immediate medical emergency, but it can become one. “The scary thing about being a person who is pregnant in Texas,” says the genetic counselor, whom I agreed not to name because this person feared legal retaliation in the state, is that many doctors will wait to treat “until the life of the mother is truly in danger.” The fetus will not survive, and delay can only increase the risk to the mother, but “we have to wait until you are sick enough to give birth.” These laws create a general climate in which doctors who fear prosecution may be hesitant to treat the mother.”Sometimes,” Heuser says, “that hesitation can be fatal.”
Yes 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 a recent patient whose doctor told her there was no point in undergoing genetic testing anymore. But she doesn’t really think abortion bans will change the use of testing, even if it will limit what patients can do afterward. Most of her patients in Tennessee no longer choose abortion, she said, but the tests can provide information that informs obstetric care and prepares parents for what’s to come.
Others mentioned the long-term possibility of insurance companies dropping coverage for prenatal testing. Cumulatively, “all these types of exams and tests are incredibly expensive,” Sarah Lawrence’s Hercher told me. Currently, insurance has a financial incentive to cover them because preventing the birth of a child with serious medical needs saves costs in the future. But if abortion is illegal in many states, Hercher asks, will insurance companies, especially regional ones, still want to cover these tests? Or will patients have to pay for them out of pocket? Currently, these tests are routine for pregnant women, but whether they remain so in the future may depend on where she lives and what she can afford.