Making Sense of Bioethics: Column 014: Temptations in Prenatal Testing
Each year, more prenatal testing procedures are becoming available to pregnant women that allow them to determine whether their children will be affected by certain diseases. Approximately 450 conditions can currently be diagnosed in utero by testing fetal cells, often through chorionic villus sampling (early in the pregnancy) or through amniocentesis (later in the pregnancy). Based on some pending technologies, this number may soon skyrocket to nearly 6000 diseases, and may only require a drop of blood from the mother. Such powerful medical tools raise some serious concerns: are prenatal testing results rapidly becoming the equivalent of death sentences for children in the womb? Prenatal testing does have its valid uses and applications, but the temptation to misuse it is a serious one, so the decision to carry out such testing must be made very carefully, and within a limited set of circumstances.
Kaiser Permanente, a large managed health care organization, offered a disturbing statistic regarding prenatal testing in a 2004 New York Times article. When their members in northern California tested their unborn children for cystic fibrosis, some of them tested positive. Of those parents who received a positive test result, a full 95 percent terminated their pregnancies. When couples learn they have a child affected by Down’s Syndrome, the figure is comparable. One argument made in favor of testing for various genetic defects is that the couple can then mentally prepare themselves better for what lies ahead once their child is born. But these sobering statistics indicate that, at least for some diseases, few children can run the gauntlet successfully.
Thus, while prenatal screening may seem to give couples more power, it often actually takes choices away. Society's demand for physical perfection places enormous pressure on couples to “conform to the norm” by aborting less-than-perfect children. When medical professionals advocate prenatal testing, the profession subtly communicates a message that there may be certain lives that are not worth living. This quiet “conspiracy of eugenics” is beginning to reach to all levels of society, affecting even Catholics and others of a strongly pro-life persuasion. As Dr. John Larsen of the Department of Obstetrics and Gynecology at George Washington University Medical Center put it in the same Times article: "People will come into my office in tears and say they've been against abortion their whole lives, but they'll make an exception for themselves [when their baby is affected]."
Against the backdrop of this widespread and growing societal pressure, how can we decide whether we should have prenatal testing done or not? Some basic moral guidelines can be of assistance:
If prenatal testing is done with the intention of having an abortion when a defect is discovered, such prenatal testing itself would constitute a gravely immoral kind of action. Even if no anomalies were found, but a mother and father carried out prenatal testing with the firm intention of aborting a defective child, they would be culpable for a seriously sinful decision. The intention to commit a serious evil, even if not ultimately acted upon because of circumstances, constitutes grave sin.
Prenatal testing which aims to provide diagnostic information to assist in the treatment of an in utero patient represents a morally praiseworthy use of this powerful technology. For example, the life-threatening disease known as Krabbe’s leukodystrophy can be successfully treated by a bone marrow transplant right after a child’s birth. If a diagnosis of the disease is made by prenatal testing, the family can start looking for a matched bone marrow sample even before the child is born. Certain other diseases like spina bifida can be treated by doing microsurgery on the baby while still inside the womb.
Prenatal testing that would help parents come to a more serene acceptance of a child with a permanent disability would also represent a morally legitimate use of this technology, assuming that the testing procedure itself posed minimal risk to the unborn child. When a couple discovers they are pregnant, they should explicitly discuss the possibility that their child might have a disability. Such discussions, together with prenatal test results, can go a long way in helping them prepare for their child’s birth. Various resources and websites offer hope, encouragement, and support to parents of children with special needs — especially those whose children are diagnosed with genetic conditions before birth. A nonprofit organization called Prenatal Partners for Life (http://prenatalpartnersforlife.org) was founded as a result of one mother’s personal experience when she learned her child had a disability similar to Down's syndrome.
Those families that manifest an openness and receptivity to every child God sends them, regardless of their imperfections and ailments, provide a compelling witness in our troubled times. Children with special needs certainly bring challenges, but they also bring great graces, opening our eyes to deep and important truths about life and the meaning of unconditional love.
Copyright © 2020, The National Catholic Bioethics Center, Philadelphia, PA. All rights reserved.
