NC’s new abortion law creates new challenges for genetic counselors and patients

Rachel Veazey, a genetic counselor in North Carolina, is trained in several fields of genetic counseling, but what she really enjoys is getting to know families through their pregnancy journeys.

“It’s an honor to support families and help them understand their value system, and what’s happening,” Veazey said.

Reproductive or prenatal genetic counselors like Veazey help guide patients through difficult decisions regarding pregnancy. They help patients know what to expect and how to prepare for the birth of a baby with a genetic condition or disability, and discuss options such as pregnancy continuation, raising a child, adoption and abortion.

Senate Bill 20, the “Care for Women, Children and Families Act,” which Republican lawmakers approved over Gov. Roy Cooper’s veto, introduced new challenges into those conversations, several genetic counselors told The News & Observer: The law limits the options available to pregnant patients and even the options genetic counselors can discuss with them.

Prenatal genetic screening and counseling

The American College of Obstetrics and Gynecology recommends that prenatal genetic screening be discussed and offered to all pregnant patients. These tests can be offered as early as nine weeks in a patient’s pregnancy, and they update patients on their fetus’ risk of having a genetic condition.

The benefits of prenatal genetic screening range from giving patients more time to emotionally process a disability before birth to giving them time to set up treatment prenatally or after birth, said Kara Ayers, a clinical psychologist whose research interests include disability policy, parenting with a disability, self-advocacy and psychosocial development with a disability.

But explaining prenatal genetic screening tests takes time, and few OB-GYN practices have the extra 30 to 60 minutes to explain all of the possible results in depth to patients.

“I don’t think anyone is necessarily prepared for a prenatal screening to come back high-risk,” said Lauren Doyle, director of the University of North Carolina Greensboro’s genetic counseling program.

In an ideal world, prenatal genetic counseling would be provided for every patient interested in their fetus’ genetic information, said Dr. Jeffrey Kuller, a maternal-fetal medicine specialist at Duke University and Duke Health.

With a prenatal genetic counselor, patients have time to ask questions, figure out what makes sense for them, personally, and for their families’ goals and values, said Chelsea Wagner, a genetic counselor and co-chair of the National Society of Genetic Counselors Prenatal Special Interest Group.

What is a life-limiting anomaly?

North Carolina’s 12-week abortion ban does have exceptions. There is a blanket exception if the mother’s life is in danger due to a medical emergency, and an exception through 20 weeks in cases of rape or incest. And there is an exception through 24 weeks in the event of a “life-limiting anomaly.”

Kuller defines a life-limiting anomaly as a condition that limits one’s life expectancy, but Veazey said there isn’t a clear definition in the bill or in the literature.

The bill states that a life-limiting anomaly is “the diagnosis by a qualified physician of a physical or genetic condition that is defined as a life-limiting disorder by current medical evidence and is uniformly diagnosable.”

But it doesn’t explicitly say what qualifies.

“Are they trying to say that it’s lethal conditions that would result in a newborn child passing away?” Veazey asked. “But within what time period? What percentage of mortality rates would be considered life limiting for certain conditions? If not all babies pass away, but 50% of them do, does that count?”

What patients think

Veazey has found that the definition of life-limiting differs among patients, too.

Many of her patients, she said, think of life-limiting as having an altered quality of life, which doesn’t always match the legal or clinical definition.

There are enzyme deficiency disorders that don’t cause problems during pregnancy, but children may exhibit symptoms within their first few years of life, and their lifespan might be shorter. These disorders can be diagnosed during pregnancy, but Veazey said health care providers are unsure whether they qualify as life-limiting anomalies.

A fetus can have a heart defect where surgery is available, but it’s a multi-step surgery, and the risk of death is often higher than what families are comfortable with, Veazey said. She’s not sure if that falls under the category of a life-limiting anomaly.

She’s met patients who feel angry by the lack of options due to the lack of clarity.

“To hear that they may not be supported by the providers, which have to be guided by the law, is disheartening,” Veazey said, “and creates distrust in the medical system.”

What about Down syndrome?

As of July 1, North Carolina is one of several states that prohibit abortion if the reason is a presumed or confirmed fetal Down syndrome diagnosis, a diagnosis that is not considered a life-limiting anomaly.

Families can have diagnostic testing at 12 weeks that can confirm a diagnosis of Down syndrome, but they are limited in what they can do at that point, Veazey said.

“I’ve had conversations with multiple families about the restrictions around Down syndrome, and I see it impacting some of them already.”

Patients feel secrecy, shame, embarrassment or concern that they’re making the wrong decision, Veazey said.

She said families have a host of questions: What if there are birth defects? What are individual clinics willing to do? Do they immediately need to go out of state?

Bioethicists Megan Allyse and Marsha Michie, writing on the ethics of prenatal genetic screening in the journal Cell Reports Medicine, point out that even the earliest available prenatal tests will not be early enough in many states for parents to make informed decisions about pregnancy continuation.

“I have seen people wanting more testing earlier in pregnancy,” Veazey said. “The fact that there is a decision or an option to be made is meaningful to the majority of the patients that I’ve seen.”

Genetic counseling and grief counseling

Genetic counselors help families decide if continuing a pregnancy is the most appropriate option.

For patients who choose to continue with their pregnancy, genetic counselors help them find support, community and resources to understand what the day-to-day looks like.

“I’m not used to doing that for families that would not have chosen to continue a pregnancy,” Veazey said. “I think that our job as genetic counselors is about to become a lot more about grief counseling.”

Veazey said many of her patients experience a grieving process when a genetic condition or birth defect is diagnosed in pregnancy. They grieve a path they had pictured for themselves that’s been shifted.

The grief depends on a number of factors and adjustments — like whether the family can afford the care of the child or can adjust their work schedules to meet the child’s needs.

Forcing a family down a path will mean a more significant grieving process, Veazey said.

“That is heartbreaking, from my genetic counselor perspective, to try to force the family to go down a road that they would not have to go down in another situation. And I think we’re going to have to see a lot more of that.”

Early testing and diagnosis are not always accessible in North Carolina, Veazey said.

Patients may not have access to OB care, or may not be able to afford traveling out of state, testing and taking off work to go to appointments, she said.

“I assume that we’re going to end up having a higher rate of genetic conditions or birth defects within those populations where access to care is limited, or a very late diagnosis pushes them into a corner,” Veazey said.

Finding support

For legal aspects and up-to-date information about current abortion laws across all states, Veazey relies on the Guttmacher Institute.

For support in navigating the changing legal landscape, she leans on and provides a shoulder for other genetic counselors and health care providers.

“I work with a lot of people that share the same overall goal,” Veazey said — “providing the same quality of care to all of our patients.”