Genetic Responsibility

In the coming decades, scientists will learn more about how genes function. They will become increasingly adept at turning genes “on” and “off.” They will become more sophisticated in the techniques of recombining genes and altering genetic codes. At every step of the way, conscious decisions will have to be made as to which kinds of permanent changes in the biological codes of life are worth pursuing and which are not. A global society steeped in “engineering” the gene pool of the planet cannot possibly hope to escape the kind of on-going eugenics decisions that go hand-in-hand with each new advance in biotechnology. There will be enormous social pressure to conform with the underlying logic of genetic engineering, especially when it comes to its human applications.

Parents in the biotech century will be increasingly forced to decide whether to take their chances with the traditional genetic lottery and use their own unaltered egg and sperm, knowing their children may inherit some “undesirable” traits, or undergo corrective gene changes on their sperm, egg, embryo, or fetus, or substitute egg or sperm from a donor through in vitro fertilization and surrogacy arrangements. If they choose to go with the traditional approach and let genetic fate determine their child’s biological destiny, they could find themselves culpable if something goes dreadfully wrong in the developing fetus, something they could have avoided had they made use of corrective genetic intervention at the sex cell or embryo stage.

In the biotech century, a parent’s failure to correct genetic defects in utero might well be regarded as a heinous crime. Society may conclude that every parent has a responsibility to provide as safe and secure an environment as humanly possible for their unborn child. Not to do so might be considered a breach of parental duty for which the parents could be held morally, if not legally, liable. Mothers have already been held liable for having given birth to cocaine-addicted babies and babies with fetal alcohol syndrome. Prosecutors have argued that mothers passing on these painful addictions to their unborn children are culpable under existing child abuse statutes and ought to be held liable for the effect of their life style on their babies.

Proponents of human genetic engineering argue that it would be cruel and irresponsible not to use this powerful new technology to eliminate serious “genetic disorders.” The problem with this argument, says the New York Times in an editorial entitled, “Whether to Make Perfect Humans,” is that “there is no discernible line to be drawn between making inheritable repair of genetic defects and improving the species.” The Times rightly points out that once scientists are able to repair genetic defects, “it will become much harder to argue against additional genes that confer desired qualities, like better health, looks, or brains.”

If diabetes, sickle cell anemia, and cancer are to be prevented by altering the genetic makeup of individuals, why not proceed to other less serious “defects”: myopia, color blindness, dyslexia, obesity, left-handedness? Indeed, what is to preclude the world from deciding that a certain skin color is a disorder? In the end, why would we ever say no to any alteration of the genetic code that might enhance the well-being of our offspring? It would be difficult to imagine parents rejecting genetic modifications that promised to improve, in some way, the opportunities for their progeny.

Despite the growing enthusiasm among some molecular biologists for engineering fundamental changes in the genetic code of human sex cells, it should be emphasized that treating genetic disorders by eliminating them at the germ line level is far different from treating genetic disorders by way of somatic gene surgery after birth. In the former instance, the genetic deletions can result, in the long run, in a dangerous narrowing of the human gene pool, which future generations rely on for making evolutionary adaptations to changing environments. On the other hand, if somatic gene surgery proves to be a safe, therapeutic way to treat serious diseases that cannot be effectively treated by more conventional approaches, it would appear to have potential value.

Perfecting the Code

While the notion of consumer choice would appear benign, the very idea of eliminating so-called genetic defects raises the troubling question of what is meant by the term “defective.” Ethicist Daniel Callahan of the Hastings Center penetrates to the core of the problem when he observes that “behind the human horror at genetic defectiveness lurks... an image of the perfect human being. The very language of ‘defect,’ ‘abnormality,’ ‘disease,’ and ‘risk’ presupposes such an image, a kind of proto-type of perfection.”

The very idea of engineering the human species—by making changes at the germ line level—is not too dissimilar from the idea of engineering a piece of machinery. An engineer is constantly in search of new ways to improve the performance of a machine. As soon as one set of defects is eliminated, the engineer immediately turns his attention to the next set of defects, always with the idea in mind of creating a more efficient machine. The very idea of setting arbitrary limits as to how much “improvement” is acceptable is alien to the entire conception of engineering.

The new language of the information sciences has transformed many molecular biologists from scientists to engineers, although they are, no doubt, scarcely aware of the metamorphosis. When molecular biologists speak of mutations and genetic diseases as errors in the code, the implicit, if not explicit, assumption is that they should never have existed in the first place, that they are “bugs,” or mistakes that need to be deprogrammed or corrected. The molecular biologist, in turn, becomes the computing engineer, the writer of codes, continually eliminating errors and reprogramming instructions to upgrade both the program and the performance. This is a dubious and dangerous role when we stop to consider that every human being brings with him or her a number of lethal recessive genes. Do we then come to see ourselves as miswired from the get-go, riddled with errors in our code? If that is the case, against what ideal norm of perfection are we to be measured? If every human being is made up of varying degrees of error, then we search in vain for the norm, the ideal. What makes the new language of molecular biology so subtly chilling is that it risks creating a new archetype, a flawless, errorless, perfect being to which to aspire—a new man and woman, like us, but without the warts, wrinkles, vulnerabilities, and frailties that have defined humanity’s essence from the very beginning of our existence.