Genetic Screening Results Just Got Harder to Handle Under New Abortion Rules

Ann was 15 weeks pregnant with her fourth child when the results of her prenatal genetic test came back last August. The test suggested that her daughter, whom she and her husband planned to name Juliet, was missing one of her two X chromosomes — a condition called Turner syndrome that can cause dwarfism, heart defects, and infertility, among other complications.

Many people decide to terminate their pregnancies after this diagnosis, a genetic counselor told Ann and her husband. But the counselor had more bad news: In two days, the family would no longer have that option in their home state of Texas. A law, in effect as of Sept. 1, 2021, allows anyone to sue those who assist any person in getting an abortion in Texas after six weeks’ gestation — and the state provides a $10,000 bounty to plaintiffs if they win. The genetic counselor told Ann she could no longer discuss termination with her for this reason.

“At the time I thought, ‘It doesn’t matter; we’re not giving up on this pregnancy,’” said Ann, who asked that only her middle name be used out of concerns about privacy and potential legal repercussions for her medical providers, her husband, or herself under Texas’ unclear legal framework. She considered herself pro-life, and the diagnosis still needed to be confirmed through amniocentesis and ultrasound.

But after reading about the condition, she realized how devastating it could be. If Juliet survived birth, which was statistically unlikely, the child would be hospitalized frequently and might need daily hormone shots, costing $60,000 per year. Ann and her husband began to worry about how having this child would affect their three other children.

The vast majority of abortions occur at or before 13 weeks, and people who seek abortions later than that frequently cite barriers to accessing care or discovery of a medical complication. But Texas’ law has effectively banned virtually all abortions in the state because many women don’t even know they are pregnant at six weeks. No prenatal tests can diagnose genetic conditions before 11 weeks.

Situations like Ann’s will soon happen across the country. The U.S. Supreme Court on June 24 upheld Mississippi’s statute that outlaws abortion after 15 weeks, and overturned the 1973 Roe v. Wade decision that guarantees the right to abortion. At least half the states are likely to ban abortion, according to the Guttmacher Institute, a research organization that supports abortion rights.

Before the court’s decision, only 10 states with gestational limits on abortion have had exemptions for conditions lethal before or at birth. None allow exemptions for serious but nonlethal conditions. Without such exemptions, people who can neither afford to raise a child with a disability nor travel to a clinic out of state could be left in a difficult spot.

For families who’ve just learned their child may not survive birth or will have a debilitating condition, such legal issues add one more trauma to an already traumatic decision.

Lauren Westerfield, a prenatal genetic counselor in Houston, said the Texas law has made it impossible for her to fully do her job. She expects that, for that reason, many counselors will choose not to practice in Texas or other states where abortion is now illegal — or soon will be — because of trigger laws launched by the Supreme Court decision.

When patients ask about termination, “I tell them, ‘Legally, in Texas, you don’t have that option,’” she said. “I don’t have words to describe the look that comes over their face when they hear that.”

Many patients have no choice but to carry the pregnancy to term. Westerfield estimated at least 75% of her patients who would have terminated their pregnancies have been prevented by the state law since it passed.

Little is known about the outcomes for people unable to terminate a pregnancy with genetic anomalies. But a study that tracked 1,000 women who were turned away from abortion clinics because they were past gestational limits found they were far more likely to fall into poverty and had worse overall health than those who had gotten abortions.