What Now? Implications of the Human Genome Project
||Trevor Major, M.Sc., M.A.
The ultimate goal of the Human Genome Project is to understand what makes us tick genetically. As a scientific enterprise, it presents no more ethical difficulty than research on blood types or the workings of our liver. However, the applications of this new understanding raise important ethical concerns.
Several key issues have dominated the public arena thus far. Chief among these is the question of privacy. If it is true that “knowledge is power,” should anyone know so much about our genetic makeup? A second issue is one of ownership. Who owns my genetic code, or a particular gene found in all humans? Is it right to patent “wild genes”—genes that were discovered in nature and not “invented” or modified by man? A third issue concerns the engineering of DNA in germ cells. With this technique, known as “germline gene transfer,” parents could make selective changes on their own sperm and egg—a mutant gene fixed here, a gene for high IQ spliced in there. Will this possibly lead to eugenics? Will it discriminate against the poor? These kinds of questions excite the public imagination and express themselves in disturbing images of the future, such as those in the movie Gattaca.
A more pressing issue for Christians is genetic screening. This can take the form of prenatal testing where the DNA of prospective parents is scanned for genetic diseases. A woman with a family history of hemophilia, for instance, might want to know whether she carries a gene that causes a failure to produce “factor VIII”—a critical blood-clotting protein. The defective gene responsible for hemophilia is recessive and resides solely on the X chromosome. This means that a woman could carry the disease on one of her X chromosomes, while a functioning copy resides on her other X chromosome. Unfortunately, the 50/50 mix of damaged and functional genes translates into a 50/50 chance of her children inheriting the disease.
Sons are of particular concern in these cases. As males, they inherit an X chromosome from the mother and a Y chromosome from the father, but the Y chromosome does not bear copies of the coagulant-producing gene. Without an alternate source for factor VIII, the body’s natural response to bleeding breaks down and even minor injuries can become life threatening.
What are the options? If our prospective mother learns that she carries hemophilia, she and her husband could decide against having any children at all. Or, if the woman does become pregnant, she could undergo amniocentesis—a process that involves the extraction and testing of fetal cells. Often, whether stated or not, the assumption of such testing is that abortion will follow the discovery of genetic abnormalities. Dr. Norman Gant, while serving as chairman of obstetrics and gynecology at the Health Science Center of the University of Texas, once remarked in this regard: “We are able to give our parents information on which to base real choices about continuing or terminating a pregnancy, and it is very reassuring to them during the remainder of their pregnancies” (1980, 87:33; see also Rae, 1997, p. 138). If carried through, this most assuredly would contravene God’s laws against the taking of innocent human life (Proverbs 6:17).
New technology, however, could expand those options. Germ-line gene therapy, as we have seen already, could be used to repair the gene before conception. However, this probably would be followed by in vitro fertilization (IVF), which itself raises a host of ethical concerns (see Thompson, 1999, pp. 34ff.). Another possibility is gene therapy on someone already suffering from the disease. Recent studies have shown promise in treating hemophilia with viruses that can “infect” the host’s cells with a corrected version of the gene (Kay and High, 1999).
These mixed results typify the two-edged sword of modern technology. The fruits of the Human Genome Project could provide us with revolutionary new treatments or, at the very least, more information that we then could use to make critical decisions. At the same time, this newfound knowledge could lead indirectly to greater use of technologies, such as IVF and abortion, which present an immediate threat to the sanctity of human life. While certain scientific developments might make IVF more palatable (such as, for example, avoiding the production of “spare” embryos), abortion will remain inherently unethical. At present, women who decide to abort on the basis of their child’s health constitute a tiny fraction of all abortions (see Torres and Forrest, 1988; Bankole, et al., 1998). This could change, of course, if our ability to detect the disease outstrips our ability to treat the disease.
All of the issues discussed thus far center on potential applications of the information provided via the Human Genome Project. However, there are some deeper ethical concerns.
First, we have to watch our motivations as we use this new information. For instance, genetic prescreening, especially where there is a family history of genetic diseases, seems well within the bounds of Christian stewardship. A possible analogy is Paul’s advice that Christians remain celibate in the face of persecution (1 Corinthians 7:26-28). This is not the only reason to remain single, but it shows the Christian way of thinking through such problems. Likewise, there could be situations in which parents decide, after much study and prayer, to remain childless.
Yet, by opening up new vistas, technology tempts us with potential new rationalizations. Specifically, our reasons for having children could become contingent on technology. A child becomes, not an expression of unconditional love, but something merely tentative (Meilaender, 1996, pp. 53-56). The worthy ambition of not bringing further suffering into the world eases us gently into the conviction that the only child worth having is a healthy child. A couple enters into a pregnancy knowing full well that there is a 50/50 chance of having a child with something like, say, hemophilia, and yet plays a waiting game: “Let’s see what happens,” they reason, “and we’ll terminate the pregnancy if things don’t go our way.” What we lose in the end is our doctrine of imago Dei—of being created in God’s image. It is this doctrine, which gives intrinsic value to human life, that must motivate our decisions on life and death.
A second, closely related issue is the temptation to think that we are just our genes. Instead of blaming the devil, we choose to blame our genetic heritage—the old refrain, “My genes made me do it.”
A constant stream of far-fetched claims does nothing to help this crude form of genetic determinism. If the fabled accounts in newspapers are anything to go by, scientists have discovered “genes for” alcoholism and homosexuality. You might as well say that the Y chromosome must contain a “gene for” violence, given that being male is the best predictor of violent behavior.
Critics of genetic determinism point out that many traits involve multiple genes, some of which are influenced or triggered by external stimuli. When we are told that intelligence has a genetic component, these same critics are quick to assure us that various nurturing activities, such as breast-feeding and playing, can have a significant impact on a child’s IQ. And so the old “nature vs. nurture” debate rolls on. We are challenged to strike a balance between the “just so” stories of biology and the “just so” stories of psychology and sociology (Hull, 2000).
I am convinced that this is a false dichotomy. Certainly, we cannot deny that our genes and our environment have an effect on who and what we are. Yet one vital component—freedom of choice—is conspicuously missing from many of these discussions.
Determinists set themselves firmly against a deep-seated intuition that we do, indeed, have a genuine capacity to choose. To overturn this widely held conviction would require a massive body of evidence, not to mention some very powerful and convincing arguments. Instead, we are told that the chains of cause and effect are immensely complex and, besides, we never could know all the events from the beginning of time. Such expansive hand waving seems to suggest that to be a determinist means nothing more than to be an agnostic in regard to the matter of choice, which is an awfully long way from proving that choice is illusory.
Why do we have such a strong intuition that choice is real? It comes, at least in part, from the people in our lives who rise above mere circumstance. These are the people of whom doctors would say, “They won’t live past their tenth birthday.” These are the people that police expect to be murdered, or in jail for murder, by their 25th birthday.
Popular author Bryan Appleyard writes often about his beloved niece, Fiona. Here was a woman who suffered from a particularly virulent form of muscular dystrophy and yet, who, in her brief 30 years, shamed anyone who would dare wallow in self-pity. Appleyard made the following confession:
Whatever anguish, irritation and despair I might suffer, I knew that I was a pampered, spoiled fool in comparison to Fiona. Others felt the same. She changed lives. At her funeral I met a man who, after meeting Fiona, had decided not to kill himself following a painful divorce. I also talked to the priest about her courage—an absurdly weak word for the colossal force that kept her going—and the effect she had on people. He smiled. “So much for the vanities of wealth and power” (1999).
Nature and nurture are not enough to explain the Fionas of this world. Even if we find the “gene for” stubborn survival, we never would be able to predict the environment in which Fiona found herself. Would a thriving family life have aided the expression of those genes? What about a life of poverty and abuse? Moreover, we never would be able to predict the environment she created around herself, and the influence she had on those who came to know and love her. It seems that humans can, but need not, surrender to the “destiny” of biology and the circumstances of life.
Our discussion of choice would not be at all complete without mentioning the will of God. Although His works often are hidden from us, God acts constantly to bring about His ends. Thus, the apostle Paul could ponder whether God intended for Onesimus to flee his earthly master—in order to return as a brother in Christ (Philemon 15-16). We cannot say, specifically, how God will achieve His ultimate purpose through the circumstances of our lives, or the choices we make.
As is so frequently the case, the changes wrought by new advances in technology are evolutionary, rather than revolutionary. They nudge us further down the slope, rather than causing us to jump the tracks completely. This should give us some measure of comfort, knowing that we can apply familiar principles to fresh new challenges. However, scientific knowledge is growing, and technology is advancing—sometimes at breakneck speed. The combined juggernaut is in danger of threatening to overtake public discourse. Christians most definitely need to stay abreast of these developments, and to stay far above the political and legal quagmire. No matter what the courts or politicians decide, we need to search God’s Word diligently for His teaching on these critically important issues.
Appleyard, Bryan (1999), “The Most Extraordinary Person I Have Ever Known,” The Toronto Star, Sunday, January 10.
Bankole, Akinrinola, Susheela Singh, and Taylor Haas (1998), “Reasons Why Women Have Induced Abortions: Evidence from 27 Countries,” International Family Planning Perspectives, 1998, 24:117-127,152.
Gant, Norman (1980), “A Closer Look at Amniocentesis,” Science Digest, 87:33, March.
Hull, David (2000), “Genes, Free Will and Intracranial Musings,” Nature, 406:124-125, July 13.
Kay, Mark A., and Katherine High (1999), “Gene Therapy for Hemophiliacs,” Proceedings of the National Academy of Sciences, 96:9973-9975.
Meilaender, Gilbert (1996), Bioethics: A Primer for Christians (Grand Rapids, MI: Eerdmans).
Rae, Scott B. (1997), “Prenatal Genetic Testing, Abortion, and Beyond,” in Genetic Ethics: Do the Ends Justify the Genes?, ed. John F. Kilner, Rebecca D. Pentz, and Frank E. Young (Grand Rapids, MI: Eerdmans), pp. 136-145.
Thompson, Bert (1999), The Christian and Medical Ethics (Montgomery, AL: Apologetics Press).
Torres, Aida, and Jacqueline Darroch Forrest (1988), “Why do Women Have Abortions?,” Family Planning Perspectives, 20:169-176.