The past few decades have witnessed tremendous advances in the field of prenatal genetic screening. The new technologies that are being introduced promise to be game changers in the whole area of prenatal care. As Ignatia Van den Veyver explains:
More recently introduced technologies such as chromosomal microarray analysis and whole-exome sequencing can diagnose more genetic conditions on samples obtained through amniocentesis or chorionic villus sampling, including many disorders that cannot be screened for non-invasively.1
The Christian response to these developments in genetic technology is dependent on several considerations. Christians are not Luddites—they are not in principle opposed to science and technology. Much, however, depends on what prenatal genetic screening is for, and the purposes it is meant to serve.
Christians should have no fundamental objections if these tests are meant to prepare parents to care for their genetically compromised children and help society to put in place the support that makes such care possible. However, Christians cannot endorse these tests if they aim to enable parents to “select” healthy children by aborting their unborn children who are predisposed to debilitating diseases for which there is no cure. Christians also cannot endorse these tests if their broad acceptance and practice would result in the introduction of what bioethicists have described as “soft” (i.e. non-coercive and non-authoritarian) eugenics to society.
In the early 2000s, Iceland introduced prenatal screening for Down Syndrome. While these tests are not mandatory, the government ensures that all expectant mothers are informed about their availability and encourages them to get tested.
According to Landspitali University Hospital in Reykjavik, about 80 to 85 per cent of pregnant women choose to take the prenatal screening test. CBS News reports that “the vast majority of women—close to 100 per cent—who received a positive test for Down [S]yndrome terminated their pregnancy.”2
Iceland can achieve a record-low number of children born with Down Syndrome, with an average of just one or two a year for a population of around 330,000. This remarkable statistic, however, is not the result of some medical breakthrough in treating Down Syndrome, but the termination of the lives of unborn babies who are predisposed to the condition. Put bluntly: Iceland’s “solution” to Down Syndrome is to eliminate children with this condition, with the aid of prenatal screening.
Christians must categorically reject this approach, not only because they view abortion as the wilful termination of human life, but also because the approach itself is highly problematic: it perverts society’s attitude towards children with disabilities.
In 1977, theologian and ethicist Stanley Hauerwas wrote a moving and powerful article (whose title may sound offensive to some today) called Having and Learning to Care for Retarded Children.3 He argues that children must be seen as a gift precisely because “we do not determine their right to exist or not to exist”.4
Reflecting on the meaning of the gift, Hauerwas writes: “Insofar as gifts are independent they do not always bring joy and surprise, but they equally may bring pain and suffering … [G]enuine gifts create needs, that is, they teach us what wants we should have, as they must remind us how limited we are without them”.5
Applying this understanding to children, Hauerwas writes eloquently that:
children are basic and perhaps the most essential gifts we have because they teach us how to be. That is, they create in us the proper need to want to love and regard another … Children are gifts exactly because they draw our love to them while refusing to be as we wish them to be.6
What about children with disabilities or who are genetically compromised? Why should they be welcomed and loved?
They should be welcomed and loved not out of some twisted sense of heroism or even pity. They should be welcomed and loved simply because they are children. No matter how compromised they might be, they are gifts which must always be accepted with gratitude. They must never be seen as a ‘problem’ or a ‘burden’ to their parents and to society.
Hauerwas again puts this passionately:
What is important is not that we Christians have retarded children, but that we know why and to what end we have them. To have them in order to witness to what nice people we are is only another subtle way to use them. We have them because they are children—no special reason beyond that needs to be given—but as children they present special needs that we must know how to meet responsibly. For we must know how to care for them in ways that respect their independence from us as their existence, as well as our own, it is grounded in the fact that we are each called to service in God’s kingdom.7
When we see children in this way as gifts, we will never subject their lives and their right to exist to a utilitarian calculus. We will never see them as a disposable commodity that can simply be discarded when they fail to meet our quality control criteria.
1 Ignatia B. Van den Veyver, ‘Recent Advances in Prenatal Genetic Screening and Testing’, National Library of Medicine, Oct 28, 2016, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5089140/#:~:text=More%20recently%20introduced%20technologies%20such,be%20screened%20for%20non%2Dinvasively.
2 Julian Quinones and Arijeta Lajka, ‘ “What kind of society do you want to live in?”: Inside the country where Down syndrome is disappearing’, CBS News, August 15, 2017, https://www.cbsnews.com/news/down-syndrome-iceland/.
3 Stanley Hauerwas, ‘Having and Learning to Care for Retarded Children’, Journal of Religion, Disability & Health, 23 Sep, 2008, 149-159. Originally published in Truthfulness and Tragedy: Further Investigations into Christian Ethics (Notre Dame, In., 1977), 147-156.
4 Ibid., 155.
5 Ibid.
6 Ibid., 156.
7 Ibid., 157.