Thanks to a noninvasive prenatal testing procedure called NIPD, a test which can predict Down Syndrome with 99% accuracy, the number of children born with Down Syndrome worldwide has greatly been reduced. This is not because they can repair the defective condition, but because it fashions the DNA into a bullseye, systematically marking them for death. Between 2/3 and 4/5 of children with Down Syndrome are aborted, reducing the overall rate by 30%. In other countries such as Denmark and Sweden nearly 100% of the children are aborted. This, of course, is an example in which pre-natal testing has been used under nefarious circumstances, but not all of them are bad. In fact, as more and more data pours in from the work on the Human Genome Project we should expect the ability to make more accurate pre-natal diagnoses on any number of conditions to increase. With knowledge always comes power, but this power can be seductive unless we are guided by solid moral principles.
What makes navigating the moral waters upon which pre-natal testing floats particularly perilous is the fact that most of the tests themselves do not carry any moral weight. There are some, like amniocentesis, which present significant dangers for both mother and child. These tests should be avoided unless there are serious medical reasons for doing so. But tests like NIPD and ultrasounds are practically harmless to both mother and child and become part and parcel of the standard of care. The moral issue comes in with the intention of the parents of the unborn child. In other words, what are they going to do with the information?
Why You Want to Know Matters
If they desire to know so that they can abort the child then it becomes morally problematic, even if they don’t actually follow through with it. Knowing that this might be a real temptation, then they shouldn’t have the test. On the flip side, a couple may want to perform the test so that they are better prepared medically and emotionally for parenting a child with serious medical needs then the test can be safely (morally speaking) performed. There continue to be many advances made to in utero diagnosis and surgical interventions that these tests can often be life-saving. Just this week the Cleveland Clinic announced that they had performed successful in utero surgery to repair Spina Bifida. This obviously was made possible through pre-natal testing.
Summarizing, The Ethical and Religious Directives for Catholic Health Care Services (1994) presents these principles succinctly: “Prenatal diagnosis is permitted when the procedure does not threaten the life or physical integrity of the unborn child or the mother, and does not subject them to disproportionate risks; when the diagnosis can provide information to guide preventive care for the mother or pre- or postnatal care for the child; and when the parents, or at least the mother, give free and informed consent. Prenatal diagnosis is not permitted when undertaken with the intention of aborting an unborn child with a serious defect” (50).
With abortion off the table, what are the guidelines we can use if the unthinkable happens and a child is diagnosed with a medical problem. The Church speaks of avoiding “disproportionate risks”. This assumes a sort of calculus on the part of the parents by which they weigh the seriousness of the disease against the risk of surgery. This might include experimental procedures. Provided that there is an acceptable amount of risk involved and the surgery is done for therapeutic, rather than experimental reasons, then it would be morally permissible to do so. As the Instruction on Respect for Human Life in its Origin, Donum Vitae, puts it, “[N]o objective, even though noble in itself, such as a foreseeable advantage to science, to other human beings or to society, can in any way justify experimentation on living human embryos or fetuses, whether viable or not, either inside or outside the mother’s womb” (DV I, 4).
Not only is abortion not an option, but also those procedures which are not inherently therapeutic. Procedures designed to influence the genetic inheritance of a child, which are not therapeutic, are morally wrong. “Certain attempts to influence chromosomic or genetic inheritance are not therapeutic but are aimed at producing human beings selected according to sex or other predetermined qualities. These manipulations are contrary to the personal dignity of the human being and his or her integrity and identity. Therefore in no way can they be justified on the grounds of possible beneficial consequences for future humanity. Every person must be respected for himself: in this consists the dignity and right of every human being from his or her beginning” (DV, I, 6).
Genetic Counseling
Genetic counseling before a couple actually conceives is growing in use and popularity. The man and the woman each submit to genetic screening that gives a genetic profile enabling them to predict how likely it is that they have a child with a serious genetic defect. Like the pre-natal testing discussed previously there is nothing inherently wrong with doing it. What matters is what you are going to do with the information that is gleaned from it. For example, suppose a couple finds one or both of them are carriers for some genetic condition such as cystic fibrosis or Tay Sachs, both of which pose serious risks to viability and lifespan of the child. They may come to learn that there is a 50% chance that their child develops the condition. Is this a good enough reason to forego having children and adopt instead?
This is one of those cases where the Church does not say one way or the other, although we can certainly apply Catholic principles to come up with a set of guidelines. First, we must never forget that the goal of parenting is to raise children for heaven. The most severely mentally handicapped child will only be so temporarily if they are baptized. I say this not to over-spiritualize the issue, but to put it in perspective. As a father of a special needs child this thought has brought me much comfort and has stifled my fears. Having a child with something wrong with them is among the worst things a parent can deal with, but it is not the worst. Having your child go to hell would be the worst. Knowing that you raised your child and got them to heaven means that you have done all God asked of you. “Well done my good and faithful servant.”
This may not be a reason then to avoid having any children, but it might be counted as a so-called “serious” reason to postpone, even indefinitely, having more children. If a couple has a child with many medical needs and knowing that they are at an increased likelihood to have another like them, they may legitimately decide to not have any more children, provided the means they use to avoid pregnancy are morally licit.