Genetic Testing And Pregnancy: Ethics, Choices, And Uncertainty

When bioethicist Vardit Ravitsky faced genetic testing during her pregnancy, she already had deep knowledge of the science and ethics behind it. Still, the experience was agonizing. “I had access to the best genetic counseling in the world,” she says. “But it was still an excruciating experience.”

Ravitsky, now president of the Hastings Center, a nonprofit focused on bioethics, recalls the emotional weight of decision-making. Counselors used exercises to help her and her husband understand risk. One scenario asked them to imagine a 1-in-40 chance of winning the lottery — a hopeful possibility. Another asked them to picture a 1-in-40 chance of a plane crash — a terrifying prospect. “These decisions are so contextual, so personal,” she says. “And in a pregnancy, you’re making them under time pressure, about the most precious thing in your life.”

Genetic Testing is Evolving

Since Ravitsky’s experience, genetic testing has grown more advanced and complex. Noninvasive prenatal testing (NIPT) can detect genetic conditions as early as nine or ten weeks into pregnancy by analyzing fetal DNA in the mother’s blood. Meanwhile, in vitro fertilization (IVF) patients can screen embryos for a range of conditions and traits, including some linked to future risks of common diseases or even physical and cognitive characteristics.

Today, between 25% and 50% of pregnant people in the U.S. undergo NIPT. These tests are designed to assess risk, not to give a diagnosis. Still, they often influence major decisions, even though false positives are common.

A New Ethical Landscape

In a conversation with Harvard Medicine, Ravitsky explained how the growing access to prenatal genetic information creates new ethical challenges. Historically, humans knew nothing about a fetus until birth. Now, having early information is considered normal — and even expected.

“When you don’t know anything, you face what comes. But once you have data, you face ethical dilemmas,” Ravitsky explains. “You’re deciding who gets to be born. That introduces concerns about eugenics and societal values.”

For individuals, genetic tests can feel empowering. But on a societal level, they raise bigger questions. If access to such tests leads people to avoid certain conditions or traits, it could create pressure about what kinds of children are considered “acceptable.”

“Programs that offer prenatal information must enhance reproductive autonomy,” Ravitsky says. “They must support choice, not promote the elimination of certain conditions or people.”

Information Doesn’t Always Mean Power

Even when these tests offer more data, they often bring uncertainty. “We say ‘knowledge is power,’ but what if it’s just confusion and pressure?” Ravitsky asks.

NIPT can screen for many conditions most people haven’t heard of, with varying levels of accuracy. If a result shows high risk, patients must interpret what that means — which can be overwhelming and unclear.

“Do you want to carry that knowledge through the rest of your pregnancy?” Ravitsky asks. “And based on what risk level? From which population? It becomes a stressful calculation.”

Surveys show that many women want access to NIPT. But as Ravitsky points out, more information doesn’t always make things easier. Instead, it can create anxiety and uncertainty — for both individuals and society.

Helping Patients Navigate Risk

So how can doctors help patients make informed, less stressful decisions?

“We need better tools for presenting risk,” Ravitsky says. Risk is hard to communicate because it doesn’t predict outcomes directly. Visual tools, clearer language, and better counseling can all help.

Doctors also need to be cautious with their wording. For example, high-risk results for conditions like Down syndrome are often delivered in a way that feels negative. Instead of offering a balanced perspective, doctors may imply that the pregnancy is in danger, which influences decisions toward termination.

Some conditions detected by NIPT aren’t diseases at all — they’re disabilities or traits. In these cases, Ravitsky says, counseling should be especially sensitive, and should acknowledge the role that society plays in shaping how we view these conditions.

“We need more training for clinicians,” she says. “More neutral language, clearer communication, and respect for the values and circumstances of each patient.”

Turning to the Internet

With limited time and support, many patients seek advice on platforms like Reddit. “People want emotional support,” Ravitsky says. “They want to hear how others made these decisions.”

While this peer support can be helpful, it also carries risks. Online forums often include misinformation — not deliberately harmful, but based on misunderstandings. Patients may misinterpret medical advice and share inaccurate conclusions.

“One-on-one counseling about every possible condition isn’t realistic,” Ravitsky says. “We need better digital tools, interactive resources, and video education to support patients.”

But even the best tools may not erase the stress these tests bring. “Even with perfect information, these decisions are hard,” she adds.

Ethics in a Divided Landscape

In today’s politically charged environment, discussions around reproductive health are especially sensitive. As a bioethicist, Ravitsky tries to ground her arguments in health outcomes and transparency.

“I say, ‘I support access to IVF — and here’s why,’” she explains. “Then others can challenge or support that view. That’s how ethics should work: through informed, open dialogue.”

She believes focusing on health outcomes can help depoliticize the debate. If a policy raises maternal mortality or harms women, those effects are measurable and nonpartisan.

“When we focus on health and well-being,” she says, “we stay on solid ground.”