The American Congress of Obstetricians and Gynecologists now recommends that doctors offer all pregnant women prenatal testing, which can detect chromosomal conditions like Down syndrome before their babies are born. As a result, they all face a decision, or a series of decisions, on what to do.
Although there is no one right answer for how women should approach these tests, they can inform themselves and consider the test's limitations and possibilities before making a final decision in a doctor's office. Prenatal tests were designed to provide women with the option of selective abortion, but not all women choose testing with abortion in mind. Taking the time to think through the ethical and practical questions these tests raise will not only prepare women for a conversation about testing but also for receiving whatever child they have been given.
Until recently, the only definitive way to identify Down syndrome or other trisomies (the presence of a third copy of a chromosome instead of the typical pair) came via amniocentesis or corionic villus sampling, called CVS. Both tests require invasive procedures and carry a small risk of miscarriage. Many women didn't choose these tests unless a second trimester screening indicated an elevated risk of a chromosomal condition. As a result, a diagnosis often came in the mid or late second trimester, making abortion both physically and legally more complicated than if discovered earlier.
Still, both amniocentesis and CVS were designed to offer the option of abortion. In Testing Women, Testing the Fetus, New York University anthropologist Rayna Rapp, who had an abortion after a prenatal diagnosis of Down syndrome and then went on to study the ways amniocentesis has changed our society, writes, "The technology of prenatal diagnosis was developed explicitly to allow the selective abortion of fetuses facing serious disabilities because of atypical chromosomes and genes."
In the past 18 months, new prenatal tests have come on the market that provide a definitive diagnosis of Down syndrome and other trisomies as early as the eighth to tenth week of pregnancy. They do so using a simple blood draw, with no risk of miscarriage and no health implications for the mother or child.
In Biopolitical Times, George Estreich describes how the marketing of these new tests demonstrates the cultural assumptions they carry, including that women want information about their unborn children in order to potentially abort those children if they are diagnosed with a chromosomal condition in utero. He describes an ad for one: "Though it speaks with the bland rhetoric of health and choice, and though it's subtly done, at root it works the way most advertisements work: it engages our fears, then seeks to allay them. Down syndrome, in the world of the ad, is an abstract world of randomness and risk; MaterniT21plus is the answer."
In light of the relationship between prenatal testing and selective abortion, many pro-life women decide to forgo the tests altogether. As I have written elsewhere, after our first daughter was born and diagnosed with Down syndrome, I chose fewer and fewer prenatal tests with my subsequent two pregnancies even though I had a higher chance of giving birth to a child with Down syndrome. I believed that fetal ultrasounds would offer any medical information we might need to prepare for my children's births.
It is not irresponsible to decline prenatal genetic testing. As Dr. John Thorpe, director of women's healthcare at the University of North Carolina, wrote to me in a personal correspondence surrounding these questions, "Contemporary ultrasound exams should identify almost all birth defects that would need urgent or emergent intervention in the first days after a baby's birth. Thus invasive tests are not needed to improve the outcome of a pregnancy nor to direct mothers whose babies might require intensive care to perinatal centers. A normal ultrasound should suffice to forego those concerns."
The vast majority of women who receive a prenatal diagnosis of Down syndrome and other chromosomal conditions do choose to abort, but the percentage of women choosing abortion in this scenario seems to have decreased in recent years. Studies are few and far between in providing this type of information, and yet Jamie Natali and other researchers writing for the Journal of Prenatal Diagnosis have concluded that about 70 percent of women with a prenatal diagnosis of Down syndrome choose abortion. Older studies had suggested an 85-90 percent abortion rate.
Still, women also use these tests for purposes other than selective abortion. Prenatal testing can be a means of prenatal care, in which the diagnosis of a chromosomal condition offers time for both the mother and a wider circle of friends and family to prepare to welcome a baby into the world. A prenatal diagnosis might lead to the decision to give birth in a different hospital or with more doctors present in case complications arise upon delivery. A prenatal diagnosis also offers women time to learn about the chromosomal condition both medically and culturally, to find support groups, and to take practical measures to be prepared with health insurance and early intervention services. Furthermore, many women who receive a prenatal or postnatal diagnosis experience a time of grief for the child they thought they were going to have. Experiencing this grief prenatally can allow a greater sense of celebration when the child is born.
Again, there is no right answer for women who approach prenatal testing from a pro-life perspective. Some will choose to forgo testing, and they can do so without concern for their baby's health and wellbeing. Others will opt to pursue testing with the knowledge that the tests will help them prepare for the child to come. Either way, perhaps the most pro-life stance women can take is to prepare their hearts to welcome whatever child is given.
Amy Julia Becker recently released an ebook, What Every Woman Needs to Know About Prenatal Testing: Insights from a Mom Who Has Been There (Patheos, 2013).