Chosen Families

This visiting post by my friend and former colleague, Dr. C. Ben Mitchell.

Earlier this month a team of researchers at the University of Washington reported it was able to map the entire genetic blueprint of an unborn baby using only a blood sample from the mother—who was just18 weeks into her pregnancy—and saliva from the father. They believe that this technique will enable them, with 98% accuracy, to screen a fetus for more than 3,000 genetically linked conditions, including cystic fibrosis, muscular dystrophy, and Marfan syndrome. The reality is that for most of these conditions there is no current treatment or cure. The only way to avoid a baby being born with these traits is to avoid bringing the baby to term. In other words, unborn children with physical, cognitive, or other disabilities, will either be aborted or die in a petri dish in the fertility clinic.

To be sure, there is no legal reason these children may not be born, but the painful lesson of genetic screening for Down Syndrome is that decreasing numbers of children with disabilities are brought to term, not because the disabilities have been cured, but because the screening test effectively paints a bulls-eye on their chest.  Today, because of the pervasiveness of testing, 90% of children with Down Syndrome are never born. Why would we expect this new test to be used any differently?

Among other things, genetic testing raises the specter of so-called liberal eugenics. That is, unlike the American eugenics movement in the 1920s and 1930s that led to massive numbers of women being legally sterilized against their wills, and unlike Hitler’s eugenic laws in Germany, the new eugenics is softer, less formal, but just as lethal. With contemporary eugenics, unborn children are screened for unwanted genetics and parents typically hear only two options: choose not to bring the child to term or deliver a baby with a lifetime full of suffering, pain, and hopelessness.  Subtly, either through lack of options or social pressure, parents are shamed into not having those children.  British philosophy professor and advocate of liberal eugenics, John Harris, said about these tests: “We would be negligent and reckless if we paid no attention to the health care of future generations and future people. The ability to protect future generations from terrible conditions that will blight their lives seems to me to be an absolute moral responsibility and a duty that we should not shirk.” Yet the logic of genetic screening is perverse:  should we prevent children from being born with disabilities by preventing them from being born at all?

Eugenics works the other way around too. There is no reason in principle why these tests could not be used for selecting for certain traits. These tests could be used eventually, for instance, to test for hair color, eye color, height, or any number of cognitive or physical traits. We are a step closer to Designer Children.

There are valiant exceptions to our culture of narcissism, of course. Some courageous parents choose to bring their children into the world, lovingly caring for them, despite the diagnosis of a genetically-linked disorder. Society should applaud their self-sacrifice and love, rather than pity them for their supposed naivete. There may come a time when the ethical means to treat and cure disabilities are available to us. But in this case, the end of not bearing a child with a disability, does not justify the means of ending the life of the child before birth. “One always hopes, vainly, that in utero testing will be for the benefit of the unborn child” said Josephine Quintavalle, the founder of Britain’s Pro-Life Alliance, “But, whilst this new test may not itself be invasive, given our past track record, it is difficult to imagine that this new test will not lead to more abortions.” In other words, when one
counts the cost of this new genetic screening method, the moral arithmetic does not add up.

C. Ben Mitchell, Ph.D., is Graves Professor of Moral Philosophy at Union University and editor of Ethics & Medicine: An International Journal of Bioethics. His most recent volume is Biotechnology and the Human Good published by Georgetown University Press.