Temptations in Prenatal Testing

August 2006. Each year, more and more prenatal technologies become available to pregnant women that allow them to test 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. 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 in 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:

  1. 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, and, if they were Catholics, they would need to bring the matter to confession. The intention to commit a serious evil, even if not ultimately acted upon because of circumstances, constitutes grave sin.
     
  2. Prenatal testing is permissible, indeed desirable, when done with the intention of providing early medical intervention to the child. For example, the life-threatening disease known as Krabbe's leukodystrophy can be successfully treated by a bone marrow transplant shortly after birth. If a diagnosis of the disease is made by prenatal testing, the family can initiate the search for a matched bone marrow sample even before the child is born. That way, valuable time can be saved, and the early intervention improves the likelihood of a good outcome. Certain other diseases like spina bifida can be treated by doing microsurgery on the baby while still inside the womb. 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.
     
  3. Prenatal testing to 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, provided the testing itself would pose 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. There are various resources and websites devoted to offering 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 (www.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. She organized a network of compassionate, nurturing parents and medical professionals who offer emotional and practical support to parents who have learned that their child will have special needs. Such resources can be of great comfort and assistance to parents who receive an adverse diagnosis from prenatal testing.
Prenatal technologies are indeed powerful tools that must be used with great discernment and circumspection. When used appropriately, these technologies can be a real source of assistance to growing families. Those families that manifest an openness and receptivity to every child God sends them, regardless of their imperfections and ailments, provide a compelling and vitally important witness in our troubled times. Children with special needs certainly bring difficulties and challenges, but they also bring great graces, opening our eyes to deep and important truths about life and the meaning of unconditional love.
 
Rev. Tadeusz Pacholczyk, Ph.D. earned his doctorate in neuroscience from Yale and did post-doctoral work at Harvard. He is a priest of the diocese of Fall River, MA, and serves as the Director of Education at The National Catholic Bioethics Center in Philadelphia. See www.ncbcenter.org