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The human Genome Initiative, begun modestly in 1988, will expand to a $200 million-a-year project by 1993 and continue into the next century. To the scientific-minded, this effort to understand the human genetic package is exploding with excitement. To the cautious naysayers, however, it entangles us in a net of unsolvable ethical and legal conundrums. One thing is clear: this research should be monitored by informed nonscientists as well as scientists for its theological, ethical, social and legal implications. Knowledge of human genes might not only rid future generations of intolerable diseases, but enable us to reshape human nature. Theologians may have to rethink the relationship between our creator God and the history of the human race.
HGI is a U.S. government-funded project that aspires to identify and map every gene on our 24 chromosomes. All the genes of a species put together constitute its genome, and the human genome includes perhaps 100,000 genes found in 3 billion base pairs. The sequence of these base pairs as found in DNA molecules provides the genetic information. The four bases -- adenine, cytosine, guanine and thymine, usually abbreviated A, C, G and T -- constitute the alphabet of the genetic language. We find them in pairs such as A-T or C-G strung out on strands of deoxyribose (sugar) and phosphate. The order of sequence in which these bases are arranged determines the way the genes name each species. HGI hopes to parse DNA’s grammar down into its component words and letters to create a giant dictionary of life.
Funds come primarily from the Department of Energy and the National Institutes of Health. The NIH project is headed by James Dewey Watson of Watson and Crick fame. James Watson and Francis Crick demonstrated nearly four decades ago that DNA constitutes our hereditary material, a scientific adventure described in the controversial book The Double Helix. Watson is in his early 60s now, an indefatigable researcher and Nobel Prize winner. Given the enormity of the task and the projected budget of $3 billion spread out over a 15-year period, the Human Genome Initiative is "big biology." Some call it "biology’s moon shot." Walter Gilbert of Harvard calls HGI the "Holy Grail" of genetics.
The primary motive behind HGI is the one that drives all pure science: the need to know. Yet what has convinced Congress and the public to support this megaproject is the potential medical benefit, namely, better treatment of hereditary diseases. Some 4,000 diseases are thought to be genetic in origin. Of these, sickle-cell. anemia and others result from a misplaced base letter in a single gene. In. other cases, such as hypertension or diabetes and some cancers, the problem stems from a discordant ensemble of genes. The ability to locate the individual gene or gene sequence responsible for each disease could revolutionize biomedicine in the 21st century. Scientists have already begun to pinpoint the genes involved in Huntington’s chorea and muscular dystrophy. It appears that the gene for cystic fibrosis is found in a narrow region on chromosome seven. Alzheimer’s disease is likely due to a defective gene on chromosome 21. Manic depression and schizophrenia may turn out to involve a genetic predisposition; alcoholism almost certainly does. Some believe we may inherit a susceptibility to heart attack, hypertension, arthritis, allergy and even certain learning disabilities.
Discovering the approximate location on the chromosome of the gene or genes responsible for a given disease will permit doctors to diagnose a genetic disease or predisposition before the onset of symptoms. The diagnosis may occur as early as a few weeks after conception. As research advances, scientists hope to determine the precise location of a given gene so they can test entire populations to identify carriers of the disease gene. They hope eventually to understand the actual biochemical defect in the gene. This knowledge will suggest directions for technological research aimed at correcting the defect. In time, this may lead to methods of intervention to treat many conditions before they appear.
In the short term, then, HGI will show us the genetic structure of humanity, much as we have known the human skeleton. In the long term, knowing this structure may allow us to find chemical and mechanical tools to change it -- fixing it where it has gone wrong in an individual and improving it where it puts whole populations at risk. In five years the genome "skeleton" will be visible and technological research will already be under way. We must be ready -- theologically, ethically and politically -- to understand this leap into our future as it begins.
The HGI project raises interesting theological questions. For example, how should we understand the image of God in us and in the evolution of the human race? In referring to evolution we do not mean to resurrect the fundamentalist-modernist controversy of the 1920s over the Genesis creation account. Rather, we refer to recent attempts in sociobiology to account for the rise of human culture and religious values such as altruism. Determinists suggest that we are driven by "selfish genes" which employ culture and religion as media for their own survival. Those of a less determinist mind look upon culture and religion as examples of the human ability to transcend our genes, to see ourselves as more than our inheritance. Whether one is a determinist or a believer in self-transcendence, HGI may provide information that makes it possible to influence human destiny through biological engineering. Instead of being driven by our genes, we may be able to reorder our genetic code to change the very nature of human nature.
This possibility challenges us to ask about the relationship between divine and human agency. If the future is open, who is responsible for the transformation of the human race? Is it a cooperative effort? Theologian Philip Hefner of the Lutheran School of Theology at Chicago describes the human being as a "created co-creator." If we view ourselves in this light, we are both utterly dependent upon God for our existence and at the same time unavoidably responsible for creating the course of cultural and technological history. To say that the image of God is at work in us suggests to some theologians that God is drawing the human race toward fulfillment and that this process may be accomplished through human creativity.
To make this claim is not to say, however, that the genius of human creativity is always identical with God’s hand at work. While we are not commanded to stand still, we must be self-critical whenever we undertake deliberately to help God continue the creation. Driven by haste or self-seeking, we frequently confuse the short-term advantage with the ultimate good. Ignorant about the full range of long-term consequences, we face moral choices whose resolution seems to require the benefit of a divine foreknowledge that we humans shall never -- despite computer simulations -- entirely possess. In short, we are by no means God’s equals, even if we are in some sense co-creators. As neo-orthodox theologians, in the era of Reinhold Niebuhr have reminded us, technological advances cannot vanquish original sin. In fact, the greater the technological power, the greater the potential for evil. HGI may provide us with the power of knowledge and the opportunity for attaining a new and unprecedented level of human health, but it may also provide us with opportunities to exercise our greed and shortsightedness so as to open up new depths of human injustice and misery.
Genetic intervention, therefore, also raises ethical questions: some dealing with the treatment of living individuals whose genetic code is known and others dealing with hereditary advance through reproductive regulation and intervention. In the area of living individuals and genetic intervention are questions of patient responsibility and the sharing of genetic information: If a doctor could know that you will contract Huntington’s disease at age 40 or Alzheimer’s disease at age 60, at what age would you want to be told? Would you want to know at all? Would it be morally permissible for you to remain ignorant and perhaps pass the genetic fate on to your offspring?
Then there are questions involving the insurance industry: Someday insurance companies may require knowledge of the genetic makeup of every client. They may want to charge higher premiums to those who have a higher risk of inherited disease. They may even deny coverage on the basis of this knowledge, leaving millions of people without benefits. Should we invoke a principle of privacy or confidentiality in order to prevent insurance companies from finding out? Would it be fair to deny information to companies that need it for their actuarial tables? The ability to map the genome may render insurance companies irrelevant and dictate a whole new system of medical security and death benefits.
Similar dilemmas may arise in the workplace: Should employers have access to our genetic codes? In preemployment genetic screening, an employer would understandably select those individuals with the greatest potential for productivity. Should the employer have the right to refuse to hire workers on the basis of genetic criteria? Should employees have the right to refuse genetic testing?
A second general area concerns the application of new genetics to the unborn. How far should an individual’s rights to privacy and reproductive choice be qualified by duties to relatives and future generations? The question has social and political implications. What are the limits of society’s right to demand that individuals or families avoid producing genetically defective offspring? And what will be counted as a "defect" to be avoided? Would a propensity for obesity, for example, be grounds to force a couple to limit reproduction? In all likelihood, abortion will be used as a means of selecting healthy offspring by deselecting the rest. If prenatal tests show a disposition for cystic fibrosis or schizophrenia, should we permit abortion? Should society demand abortion? What will appear on the computer list of acceptable and unacceptable genetic traits that determine the life or death of the fetus?
Also, we must consider the possible dilemmas of in vitro fertilization. Hereditary advance could proceed through the creation of "high-grade"embryos that are implanted and brought to term. Should these embryos be bought and sold? If we put a price tag on physical stature, intelligence, race, or eye or hair color, as well as relative freedom from disease, our unborn children will become commodities. What kind of society will emerge if we begin eyeing each other’s children as we do each other’s cars, clothing and houses, mentally calculating "what that one must cost"?
Family ethics will need to redefine lovability within the genetically altered family. Imagine a family in which each generation is less "defective" than the previous one. What will be the psychological impact on parents supporting "superior" children? Will the sense of blood tie be tangibly loosened by the frequency of technological intervention in reproduction? Will a child be desirable on account of acceptable genetic traits and undesirable without them? Will "defective" come to mean "disposable"? Will "superior" adult children seek to dispose early of their "defective" parents?
It is conceivable that genetic intervention will move us in the direction of Aldous Huxley’s Brave New World. We may begin innocently by trying to breed out hemophilia and end up breeding in genetic traits that fit the needs of social stratification, economic productivity or nationalist interests. Might the desire for improved human beings lead finally to a drive toward racial purity? Well in advance of any brave new world, we need to ask who will be making the decisions and according to what criteria. Who will be allowed to share in the benefits of genetic intervention and who will be compelled to submit to them?
Another major area of ethical concern is thus economic justice. Economic and social divisions may be reinforced by the unequal ability to buy genetic superiority. We are already guilty of gross inequalities in the delivery of health care nationally and globally. Because of the split between rich and poor, our society currently fails to give basic prenatal care in thousands of pregnancies each year. Health insurance is unattainable for many. For millions of people around the world even their basics of modern medicine are not yet available. If we succeed at genetic intervention during the prenatal period, who will benefit and who will be left out? Will there be one list of permitted procedures for the poor and another, much longer list for the rich?
Finally, we must face the possibility that we may endanger the whole human species by trying to alter part of it. The health of our long-term evolutionary development has depended in part upon the randomness of genetic recombination and mutation. Can we threaten this process of random selection? Does a short-term benefit warrant a long-term danger? On the other hand, perhaps by learning to avoid genetic deformities we may intervene just in time to keep from being wiped out by a tide of stress-induced or radiation-related mutations. Either to intervene or not to intervene in our genetic constitutions. then, could pose a danger for the future of humanity.
Should the existence of all of these pitfalls frighten us into pulling back and retarding the advance of scientific knowledge? Despite the dangers, we would argue that it is best to move forward on the assumption that more knowledge is better than less. Any ethicist who would have us value ignorance over knowledge is suspect. When we fear the outcome of research, we shirk our responsibility to the future by rooting ourselves in the status quo. But our present situation is by no means a moral utopia. It too is beset with problems. Our society is filled with those suffering from cancer and other incurable diseases as well as from mental disorders, child abuse and economic injustice. There is no good reason for making the present situation a barometer for measuring the alternatives. If we try to halt the advance toward new knowledge we may inadvertently give unwarranted blessing to our present state of ignorance. To defend present ignorance against future knowledge -- even if the consequences be unknown -- is to seek an illusionary moral haven. It would be better, we think, to use the new means at hand to reduce human suffering as much as we can while protecting human freedom and dignity.
We need ways to guard ourselves from ourselves. In particular, we need a reformulated commitment to human dignity. Such a commitment has been given a sound hearing before the international Human Genome Organization, HUGO. Two hundred scientists from 24 countries who attended a workshop on international cooperation at Valencia, Spain, in October 1988 proposed "respect for individual human dignity" to be the principle governing all genetic research and technology:
The, members of the workshop believe that knowledge gained from mapping and sequencing the human genome can have great benefit for human health and well being. Toward these ends, participating scientists acknowledge their responsibility to help insure that genetic information be used only to enhance the dignity of the individual. They also encourage public debate on ethical, social, legal and commercial implications of the use of genetic information.
Although the mere statement of such a principle is far from solving the ethical problems we have been examining, it is vitally important to keep the principle in mind. This or some similar moral safeguard will be essential to HGI and related biotechnology if human nature is not to be violated in the effort to improve it.
The responsibility of our generation, we believe, is to pursue this new knowledge, confront the ethical issues as they arise, and seek their resolution by negotiating humane policy. Because so many of the issues are interrelated, however, we cannot simply treat them singly. They need to be addressed in complex. clusters and studied in light of a broad vision for society, keeping in mind the caution born of experience. Our time calls for contributions from philosophers, theologians and ethicists in dialogue with scientists, economists and politicians. It calls for the combined work of at least two groups of contributors: visionaries who can project for us their pictures of the humanity we are called to become, and sober’ pragmatists who will remind us of our moral limits and our tendency to exploit others.
God’s promised fulfillment includes, among other things, the image of a New Jerusalem where "death shall be no more, neither shall there be mourning nor crying nor pain any more, for the former things have passed away" (Rev. 21:4) As we begin to engage in the business of genetic co-creation, how can we be sure that our path goes toward this fulfillment rather than toward some irreversible destruction? The wisest course is to admit that we cannot know with certainty whether our direction is compatible with God’s. The moral risks are genuine risks.
But as Christians we believe that the source of creation is also its ultimate hope. Human origins and destiny are linked together in God’s economy. Attempting to discern a moral way forward is essential at every stage of our journey, even though such discerning is never unambiguous. The goals and methods of genetic science must be considered in a continual, complex, many-sided con-versation among Christians and others who take the challenge seriously. We need to articulate and discuss conflicting visions as we attempt to project a just and generous use of the fruits of research. Participants in the conversation from all walks of life should seek to describe authentic human fulfillment and propose safeguards against the many opportunities for abuse, until a body of principles and a consensus about the best applications of genetic knowledge emerge. A common vision can evolve -- if indeed, the human creative process is related to God’s own.
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