Genetic Counselors Scramble Post-Roe to Provide Routine Pregnancy Services without Being Accused of a CrimeAugust 3, 2022
The June 24 decision by the Supreme Court to overturn Roe v. Wade struck close to home for genetic counselors, the medical professionals who are often tasked with advising and consoling prospective parents when ultrasounds or other prenatal tests indicate a threat to their own health or the health of their future child. People seeking abortions based on health concerns during pregnancy are a small percentage of abortion seekers overall, but they are disproportionately affected by the new barrage of restrictions because detecting and confirming a prenatal diagnosis takes time. The abortion drug mifepristone is approved for use by the Food and Drug Administration only through the 10th week of pregnancy—well before patients receive the results of genetic testing or anatomy scans. Patients are also likely to find themselves in a bind because of state restrictions on how far along a pregnancy can be when an abortion takes place.
Prenatal counselors must now work around the need for patients to travel out of state for abortion care—and somehow try to help patients without the financial means to make these trips. The disparity of access is likely to exacerbate existing health risks associated with being poor and pregnant. “I’m very worried about maternal mortality,” says genetic counselor Shannon Barringer. She has worked for 25 years in the state of Arkansas, where a trigger law that went into effect on June 24 has made abortion illegal even in cases where the fetus is not expected to survive. Barringer also worries that new legislation may make it harder for her to provide that help. “I know [legislators are] already working with national organizations to draft language that may interfere with health providers being able to refer out of state,” she says.
In fact, existing and proposed laws restricting abortion have become so extreme that they are likely to affect all prenatal patients, not just those who need an abortion. In a recent series of interviews conducted by two graduate students at Sarah Lawrence College, prenatal genetic counselors practicing in states hostile to abortion said that the need to send patients out of state if they were to need an abortion created time pressure that affected many aspects of prenatal care. (The author of this article teaches at Sarah Lawrence.) Some counselors reported that they were rescheduling detailed anatomy scans, typically done between the 20th and 22nd week of pregnancy, to be carried out at 18 or even 16 weeks, despite evidence that earlier scans will miss some fetal anomalies and give less definitive information on others.
A fuller picture of the effect on genetic counseling can be seen in Texas, where these services have operated in a de facto post-Roe world since September 2021, when a law went into effect making all but the earliest abortions illegal. That same law also permits any citizen so inclined to sue anyone “aiding or abetting” an illegal abortion for a sum up to $10,000. While few of these vigilante suits have reached the courts, the law has succeeded in creating an atmosphere of fear and suspicion. In fact, all four genetic counselors from Texas interviewed by Scientific American for this article said that their institutions required them to speak anonymously. “I’ve tried consciously, since the law passed, to make the counseling session a safe place for people to go,” says one counselor working in Houston. “But on the flip side of that, I wonder if I or my genetic counseling colleagues are opening ourselves up for potential lawsuits.”
This tension between optimal patient care and self-preservation is not likely to improve anytime soon. New proposals directly target the ability of health professionals to provide guidance to their patients. A bill recently introduced in the South Carolina legislature would make it a felony, with mandatory prison time, to offer information to anyone attempting to obtain an abortion, even if one only directs that person to a Web site. With the threat of legal jeopardy, some genetic counselors may be deterred from even engaging in routine conversations that help determine which types of prenatal tests are best for an individual patient because they could be perceived as raising the question of whether or not that patient wants the option of terminating a pregnancy.
Concerns about liability have also raised questions about whether to limit what information goes into a medical record. “We’ve debated it,” says another Houston counselor. “Certain people in our department feel strongly that documentation of a legal procedure out of state should be in the chart so that the patient can get the best possible care, whereas other doctors will say…, ‘Why not avoid that language and just kind of be, you know, “abstract” about it?’”
A recent JAMA Health Forum editorial by law professors Kayte Spector-Bagdady and Michelle Mello argues forcefully that medical providers should be aware that not only medical records but their own e-mails may be used by law enforcement officials prosecuting abortion. Doctors are not the only ones who are fearful. Barringer says that because of the current uncertainties, patients do not want details about past pregnancies documented or will not provide her with that information. Barringer adds that she sympathizes with their concerns but worries a lack of medical history “could interfere with providing the safest care possible in a future pregnancy.”
Already, Barringer says, patients are concerned about sharing information on use of pills that induce an abortion—with or without a prescription—because of the Arkansas law that criminalizes harm to the fetus. New abortion restrictions that include language establishing “fetal rights” or “fetal personhood” will exacerbate existing disincentives to open communication. Michele Goodwin, a law professor at the University of California, Irvine, argues in her 2020 book Policing the Womb that there is increasing jeopardy for any pregnant person but particularly for those of color, who have historically been the target of prosecutorial overreach. With both genetic counselors and patients worried about what is safe to say, it will be harder than ever to establish the atmosphere of trust that is a bedrock of good medicine.
“Anecdotally,” says a Texas genetic counselor, “I’ve already noticed some patients not wanting to fill out the intake form for pregnancies. And I’ve had people share things verbally they don’t want to put in the paperwork.” Not having the information impedes her ability to do her job. This might mean not knowing about an exposure to a drug, legal or illegal, that could affect fetal development. It might mean not learning about a previous pregnancy that ended in a miscarriage or abortion related to fetal health and therefore being unable to address the risk of the problem recurring.
Another genetic counselor mentions that in one recent case, a prenatal patient with abnormal ultrasound findings came to believe that the problems could have been caused by an abortion she had failed to disclose when she gave her medical history. Only after the patient felt comfortable enough to confide in her could the counselor correct the woman’s misapprehensions and address her emotional needs. “She wanted to know if she caused this,” the counselor says. “She had a lot of shame and guilt.”
As attacks on access to abortion proliferate, genetic counselors worry that prenatal testing itself may become harder to access. Tests such as noninvasive prenatal testing (NIPT), which examines snippets of fetal DNA floating in the maternal bloodstream for missing or added DNA, are extremely popular with patients. But they can be seen as a stepping stone to abortion. In 2012 Republican presidential aspirant Rick Santorum was widely ignored when he said that health insurance companies should not be required to pay for amniocentesis because it was often used to “encourage abortion.” Ten years later Santorum’s position, while extreme, now must be taken seriously. “I can see that potentially being a problem,” Barringer says, noting that Arkansas, like many other states, already prohibits insurance companies from offering policies that cover termination of pregnancy.
Restricting the use of expensive prenatal genetic testing to those who can pay for it out of pocket would effectively implement a lower standard of prenatal care for those who live in abortion-hostile states. Some would lose the opportunity to prevent the birth of a child with a genetic condition. Others—who would not have terminated—lose the chance to prepare for the birth of a child with special needs and to avoid a long and often arduous search for a diagnosis as evidence of a problem emerges postnatally.
Even for those who can afford it, prenatal genetic counseling may become increasingly hard to find. All four genetic counselors from Texas spoke movingly of an obligation to serve their patients, coupled with the strain of working in an environment in which they could not help them as they once did. In one e-mail to Scientific American, a counselor from Dallas wrote that she worried for days about not providing information to a patient who asked for guidance on finding an abortion clinic out of state before deciding to share what she called “a minute amount of information.” And then she worried for days afterward about “whether what I had said could be construed as aiding or abetting.”
Genetic counseling is a limited resource. In a fast growing field, demand continues to outstrip supply. Going forward, it may be hard to find candidates for positions whose “fringe benefits” include extra emotional burdens and potential legal liability. Barringer, contemplating laws that might restrict her ability to counsel patients as she has done for 25 years, is reluctantly considering what it would mean to turn away from a job she loves. “It’s making me think, ‘If that comes to fruition here, I don’t know if, ethically, I’ll be able to continue.’ If I couldn’t help my patients through some of the worst things that human beings can go through…, I honestly don’t know what I would do.”