The very personal ethics of prenatal testing

(Bigstock photo/ ) Every pregnant woman has decisions to make about prenatal genetic testing, and it’s not as simple as … Continued

(Bigstock photo/ )

Every pregnant woman has decisions to make about prenatal genetic testing, and it’s not as simple as sticking out your arm for a blood draw.

According to the American Congress of Obstetricians and Gynecologists (ACOG), doctors should offer prenatal screening for some genetic conditions to all pregnant women, regardless of age or other risk factors. In the past year, blood tests have come on the market that promise to identify Down syndrome and other trisomies (the presence of a third copy of what is typically a pair of chromosomes) as early as eight to ten weeks within a pregnancy and technological advances now hold out the possibility of screening a fetus’ full genome for atypical genes at a relatively low cost.

Doctors can offer the medical information necessary to put the results of these tests in context, but these tests are much more than conduits of medical information. They require expectant parents to contemplate their values and cultural assumptions about health, relationships, independence and the role of people with intellectual and physical disabilities within our families and within our society. Most doctors are not (and need not be) prepared to offer counsel for the ethical, spiritual, and emotional questions raised by prenatal screening tests. Women need to consider their own position towards these tests and the information they provide before they agree to testing. Moreover, churches and other faith-based institutions need to begin conversations engaging the ethical questions parents face as they consider the role of prenatal testing in pregnancies. With that said, it can be hard for individuals and groups to find resources for guidance through these issues. I wrote “
What Every Woman Needs to Know About Prenatal Testing: Insight From a Mom Who Has Been There
in hopes of offering a nonjudgmental guide for women through the questions that come up about prenatal testing in pregnancy.

When I was pregnant with our first child, at age 28, I didn’t give much thought to the screening tests my doctor offered. They were noninvasive and posed no risk to me or my baby. I thought they would allow us to cross a number of worries off the list and think no more about words like “disability” and “abnormality” and “birth defect.” But then the hormone levels in my blood indicated a 1 in 316 chance that our baby would have Down syndrome, so we opted for a Level Two ultrasound. Although the technician felt confident that our baby had typical chromosomes, several months later our daughter was born, and a neonatologist and pediatrician with stern faces gave us the news that the technician had been wrong. Our daughter had Down syndrome, a third copy of chromosome 21 in every cell of her body.

Even though I was an active member of our local church, it hadn’t crossed my mind to discuss the prospect of testing with anyone there. I saw prenatal testing as a routine medical aspect of pregnancy rather than a series of decisions that require wisdom and humility and bring up questions about suffering and goodness and meaning. Thankfully, one of our pastors came to the hospital as soon as he heard the news of Penny’s birth. He prayed with us. In the months that followed, the congregation continued their prayers. They also baked chickens and called to check in. In time, they began a discussion of how to better include children with disabilities in Sunday School. They created a place for Penny and for other families like ours. We learned and grew together, and their support was equally if not more important than the expert care we received from Penny’s doctors.

Penny is seven years old now, and her life has given me a picture of “disability” that goes far beyond medical challenges. She has tubes in her ears and glasses perched on her nose and she works hard every day to control her hands in the cafeteria when she is tempted to sneak a bite of her friends’ food. She struggles to learn her math facts and she wears braces on her ankles. She prays when she feels scared or wants to give thanks. Her favorite birthday present was a portable dance floor upon which she can practice her ballet moves. We have a piece of paper affixed to the refrigerator that she wrote at the end of kindergarten: “I am a star because I can read.” Her medical challenges and developmental delays do not define her any more than the color of her hair or the brightness of her crooked smile.

Penny’s birth led me to think about prenatal testing for disabilities very differently than I did when I first sat in my doctor’s office in my sixteenth week of pregnancy. In fact, over the course of two subsequent pregnancies, even though I had a heightened chance of having another child with Down syndrome, I chose less testing. As I understood more and more about the purpose of the tests, the information they offered, and the options I wanted, I realized that routine ultrasounds would provide all the information I needed to prepare to welcome the child growing in my womb.

I would not have chosen termination even if I knew ahead of time that Penny had Down syndrome. And even the most well-informed expectant parents will sometimes choose to end a pregnancy. But given the gravity of the decision about whether or not to terminate, it is vital for women to understand both the potential and limits of prenatal tests as well as the medical, social, emotional and ethical factors associated with various diagnoses. And it is vital for our religious leaders to provide compassionate guidance and practical support for families grappling with these questions.

Many doctors are unprepared to offer resources for women to acquaint themselves with the social and emotional realities of life with a child with Down syndrome (the most common chromosomal condition), other trisomies, or neural tube defects. Women can, however, consider their posture toward raising a child with an intellectual or physical disability or a life-threatening medical condition as a starting point for making choices about prenatal testing. Instead of deferring to the medical establishment, women need to empower themselves with resources that put life with Down syndrome and other similar conditions in a fuller context that includes family and community supports, educational opportunities, and images and stories of people with these conditions who are working, learning, playing and contributing to our society every day.

Amy Julia Becker is the author of
What Every Woman Needs to Know About Prenatal Testing: Insight from a Mom Who Has Been There
(Patheos Press, 2013).

Amy Julia Becker
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  • roselew

    Thank you for this beautiful exposition of your experience. My own experience ended differently. Although I was urged, as a woman over 40, to have amniocentesis early in my pregnancy, I declined when told that its only purpose was to facilitate a decision to destroy the child growing within. The doctor in question went so far as to tell me that I “didn’t need this child!” since I had several others. My next step was to find an ob/gyn who would support my decision to have my child and I have never regretted that decision. She is, today, a healthy 38-year-old wife and mother. Medical science does NOT have all the answers and women are wise to reach within and find the answers they can live with in peace. I’m glad you found the support you and your family needed and that your child was given the gift of life to share with all of us and teach us more and more about life’s values. Peace to you and your family.

  • K215

    When I was pregnant with our daughter at 26, the OB/GYN discussed some prenatal testing at our first appointment at 8 weeks. I really appreciated the recommendation he gave, which was that if the knowledge of any sort of issue would not change our decision to carry to term, he wouldn’t bother with the extra testing. Granted, he might have given different advice if I’d be older at the time, but it really did help us to make that decision by having his input.

  • nkri401

    Let’s make sure personal part stays personal.

  • itsthedax

    So, you were able to make a very personal decision for yourself and your family, based on the prenatal testing.

    The question is, should the government prevent other women from making the same decision?