Our Prenatal Testing System Is Broken

Our 16-year-old daughter, Penny, wakes up to the beeping of her alarm. On her way downstairs, she picks up her iPhone to check her texts. She eats breakfast, gathers her sneakers and pompoms for cheerleading and heads to school. When Penny was diagnosed with Down syndrome a few hours after she was born, I didn’t expect our mornings to feel so ordinary.

When I was pregnant with Penny, I chose to receive a “quad screen,” an elective and noninvasive blood test around 16 weeks that looked for elevated levels of three different hormones and one protein. I soon learned I had a one in 313 chance of having a baby with Down syndrome, higher than expected for a woman my age. We followed up with a detailed ultrasound, which showed a “healthy baby.”

Penny was, indeed, healthy. After she was born, she received a robust eight out of 10 on her Apgar score, a test doctors administer to check the baby’s heart rate and other signs, and came home from the hospital two days later. She also came home with Down syndrome.

Many women whose prenatal tests looked similar to mine are counseled by medical professionals to pursue further diagnostic testing, and, with a confirmation of Down syndrome, to consider abortion. Every day, I’m glad I didn’t.

Prenatal testing has only increased in availability, prevalence and accuracy since I was pregnant with Penny. And while these tests can offer information about the chromosomal makeup of fetuses, prenatal tests cannot prepare parents for the hardships, fragility or wonder inherent within every human life. Testing rests on an assumption that desirable children conform to a norm of development, alongside a corresponding thought that undesirable children deviate from that norm cognitively or physically. You can see the result of these assumptions in the high abortion rates for fetuses with Down syndrome.

The assumptions behind our prenatal testing programs also condition parents — and society as a whole — to see our kids as valuable according to their physical strength, intellectual capacity and social acuity rather than setting us up to receive their lives as they are given.

We need to change our approach to prenatal testing by ensuring that pregnant women who receive prenatal diagnoses get accurate information about what it’s like to raise a child with a disability and expanding the awareness of our collective responsibility to welcome and support diverse lives.

Today, prenatal screening tests are up to 99 percent accurate in detecting fetuses with Down syndrome, and they are offered starting at nine weeks. The American College of Obstetricians and Gynecologists recommends presenting all pregnant women with the option of prenatal screening tests. Many choose to take them — in one study, 90 percent of pregnant women were offered these tests, and 78 percent of those chose to receive them.

The problem is, most physicians do not follow professional guidelines for how to offer the tests or discuss the results. This same 2016 study found that many physicians do not present these tests as a personal choice or talk about how the results might be used. The authors wrote that many women “report being unaware of what the test was for or what the results mean.”

The American College of Obstetricians and Gynecologists also recommends that doctors provide respectful, neutral counseling when discussing the options of continuing or terminating the pregnancy to every woman with a prenatal diagnosis of a genetic disorder or a major structural abnormality. According to the National Council on Disability, 86 percent of medical providers talked about termination of the pregnancy after a prenatal diagnosis, whereas only 37 percent discussed continuing the pregnancy. Furthermore, genetic counselors and doctors who offer information overwhelmingly relate biomedical concerns without describing the social supports available for families, or the self-reported happiness of most people with Down syndrome.

In 2008, Congress unanimously passed the Prenatally and Postnatally Diagnosed Conditions Awareness Act, intended to ensure women receive accurate and up-to-date information about Down syndrome. But Congress never appropriated the funds necessary to put this law into action. Such funding could be used to provide balanced information about children with chromosomal conditions to medical providers, train health care workers to deliver prenatal diagnoses, and establish a hotline and other methods of support for women who receive a prenatal diagnosis.

The medical establishment assumes women want the option of abortion in the face of a positive test result. Indeed, 56 percent of Americans polled by Gallup in 2018 support women’s right to choose abortion in the first trimester when the child would be born with a mental disability, compared with 29 percent who said abortion should be legal in all circumstances. And while population-based studies have not been conducted to provide firm data about the effect of these new prenatal tests on termination rates, a comprehensive review of studies published from 1995 to 2011 suggests that 67 percent of American women who received Down syndrome diagnoses on prenatal tests had abortions.

I understand the fear many women feel in facing a prenatal diagnosis. I wish more of them knew that countless families with children with Down syndrome have lives marked by love and joy, lives that have been changed for the better. While I see every abortion as a tragic loss of life, I am especially saddened for the families who have chosen abortion because they feel scared or alone at the thought of raising a child with a disability.

These decisions appear to be individual ones, and yet every decision about whether or not to bring a child with a disability into our world is made within a social context. Women who choose to continue or to terminate pregnancies after receiving a prenatal diagnosis are not making solely personal decisions. They are making decisions that reflect their communal and social reality. These decisions both create and advance a less diverse world, a world less tethered to the limitations and vulnerabilities that invite us into relationships of mutual care and concern for one another.

If having a child with a disability is seen only as an individual choice rather than a socially supported and valuable way of being, we can imagine a future in which governmental support could be denied to women and families who “choose” to bring children with Down syndrome or other genetic conditions into the world.

Penny’s relatively ordinary life is due in large part to our own social situation. We live in a town with ample funding for special education. Penny received multiple therapies each week in her early years. She also has been expected and able to contribute to the life of her community. Those contributions are as ordinary as her mornings: A word of encouragement. An inability to hold a grudge. A love for nachos and Olivia Rodrigo and the color orange.

Done right, prenatal testing could allow parents to prepare well for the birth of their children. But without broad social acceptance of people with disabilities, without a medical establishment that conveys the positive social situations of many people with disabilities, and without funding for accurate and up-to-date information in the face of a prenatal diagnosis, more and more women will face decisions about their pregnancies without the support they deserve.

And the more we assume that prenatal diagnoses of Down syndrome will result in abortion, the more we will send a message to all our children that their worth depends on their ability to achieve. Instead of reinforcing structures that welcome only homogeneous bodies and minds as units of production, we need a system that supports and welcomes a diverse range of humans with their particular limits and struggles and gifts.

Amy Julia Becker is the author of “A Good and Perfect Gift,” “White Picket Fences” and the forthcoming “To Be Made Well.”

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