Picture Perfect: Prenatal Genetics and the Human Genome Project
In a 1993 First Things article, Elizabeth Kristol wrote of the coming problems regarding prenatal genetics.1 Her foresight was confirmed last fall when Dr. Dan Brock of the National Institutes of Health suggested that blind and severely disabled children should be aborted for the good of society. Kristol's concerns have also been expressed more recently by Sir Paul Nurse in the United Kingdom.2 His view is that people are at great risk for genetic discrimination as a result of the coming technological changes regarding genetic testing.
The field of prenatal genetics has changed little over the past 25 years. Only three non-invasive tools have been available to assess the developing, pre-born infant. These are ultrasonography, maternal triple hormone screening, and family histories. Even when used in combination, these methods lack specificity and sensitivity to the point of being almost worthless clinically. Attempts to clarify the results of these measures through invasive means have caused severe suffering, unneeded anxiety, and the destruction of untold numbers of normal children.
One promise of the Human Genome Project has been to advance the ability to assess the unborn child. Obstetricians have been limited in this ability in that a "smorgasbord approach" to accessing potential genetic defects has been unavailable. Without specific knowledge of the defect one wishes to diagnose, general screening for multiple potential abnormalities has been impossible. (Genetic testing has been limited by the inability to test for multiple defects at the same time. Only when you know exactly which abnormality, i.e. which gene to assess, can testing be done.) That, however, is changing.
Spectral Genomics of Houston, Texas recently announced a new technique (as of yet not FDA-approved) for molecular karyotyping using what is known as a genomic microarray. Instead of looking at chromosomes grossly, this technique can divide the chromosomes at over 1400 locations within an individual's genetic sequence This allows for the evaluation of additions and deletions of genetic material within relatively small segments of DNA. This information, when compared to the existing genomic data base, may potentially identify multiple possible genetic disorders with a single test.1
The implications of this technology are likely to be profoundly troubling. Since Roe v. Wade, the (always tragic) decision to have an abortion has most often been driven by the personal desire of one or both parents to end the pregnancy, with no serious regard for the potential of the child. The expanded ability to identify multiple variations within an individual's genetic makeup reverses this concept. That is to say, the decision to carry or abort a pregnancy will increasingly be based on an infant's ability to rise to a predetermined standard of acceptability, a standard that is determined either by the parents or society. The new view of abortion will be characterized as "prenatal euthanasia," carried out for the good of the parents, child, and society.
In his book Dispatches from the Front, Dr. Stanley Hauerwas gives us a better idea of how to look at the disabled.2 He points out that to be "fearfully and wonderfully made" (Ps.139:14) is not to be perfectly made. Dr. Hauerwas suggests that those who are born with genetic defects are reflections of God's imagination. As finite beings, we cannot understand the breadth of God's creative abilities. Could it be that in His accounting, the character and gifts that are a part of the (for example) Down Syndrome persona are especially precious to Him? It is easy to characterize those with obvious disabilities as less than normal. But in these characterizations, do we not promote elitism while carrying our own defects hidden from all but the Almighty? It is often argued that we should prize these individuals for what they can teach us. More importantly, however, they are precious if only for the reason that they represent another aspect of the Infinite Creator who formed us all. May we hold fast to this truth--and pray that others will be guided by it--as technology presents us with new temptations to destroy fellow human beings.
2 Hauerwas, Stanley, "The Church and the Mentally Handicapped," Dispatches From the Front, Duke University Press, p. 177-tf., 1994.