Toward an Ethics
of the Human Genome Project
Department of Biology
Wheaton, IL 60187
From Perspectives on Science and Christian Faith 50
(September 1998): 164-175.
© 1998 Americian Scientific Affiliation
The application of genetic engineering culminates in the Human Genome Project (HGP) which is an attempt to understand our genetic makeup with the hope of developing cures for genetic diseases. This new genetics also brings with it ethical issues, such as accessibility to and controls of human genetic information. In this paper, several ethical principles and a theological model of a perfect human being within the Christian worldview are discussed. The ethical issue of genetic confidentiality and nondiscrimination is addressed in light of some of these motifs.
Genetic Diseases and the Human Genome Project
On March 24, 1993, most leading newspapers in the country published a story which they labeled as "the longest and most frustrating search in the annals of molecular biology." The genetic defect of a late onset neuromuscular disorder, Huntington's disease (HD), was finally located at about 3.5 million base pairs from the tip of chromosome 4. The normal gene contains the nucleotide triplet CAG which encodes the amino acid glutamine. Normal people have about twenty copies of this triplet. Individuals with HD, however, have more than 37 copies of it.1 This discovery was the culmination of over 120 years of research since the disease was first described by physician George Huntington2 and 24 years since Milton Wexler established the Hereditary Disease Foundation in the attempt to find its cure.3
In 1968, Wexler, a Los Angeles psychoanalyst, discovered that his ex-wife, Lenore, suffered from HD and his two daughters, Nancy and Alice, had a 50-50 chance of inheriting the fatal disease. His and Nancy's crusade to find a cure led to the discovery in 1983 of a diagnostic test for the disease. The identification of the gene simplified the presymptomatic testing by probing for the gene itself instead of probing for a complicated set of markers in its vicinity. It also eliminated the need to get blood from many family members. This simplified process of testing is far less expensive and is readily available to people who want to take it.
The knowledge that one has a genetic disease which has no cure may help in decisions about child bearing. Yet, it also affects the psychological well being and the social status of a potential carrier. It was probably for these reasons that the Wexlers have elected not to subject themselves to the genetic test for HD.4 In 1989, Nancy, a molecular biologist, was named head of the advisory board to the Human Genome Project, which deals specifically with the ethical, legal, and social issues arising from the use or abuse of human genetic information. She was instrumental in cautioning the scientific community about the ethical concerns for genetic testing.5 Can genetic testing be a tool for discrimination by social institutions, such as the insurance industry? The commercialization of genetic testing will inevitably lead to a race to collect as much patient genetic data as possible. Insurance companies also have to decide on the applications and the accessibility of the genetic information they gather. Genetic testing will complicate the issues in the health care reform debate in market economies.
Michael Crichton, a molecular biologist-turned science-fiction novelist, uses his character, the abrasive chaos theorist Ian Malcolm, to accuse the current scientific mindset of using technology, such as genetic testing, for personal gains:
Scientific power is like inherited wealth-attained without discipline. You read what others have done, and you take the next step. You can do it very young. You can make progress very fast. There is no discipline lasting many decades. There is no mastery; old scientists are ignored. There is only a get-rich-quick, make-a-name-for-yourself-fast philosophy. Cheat, lie, falsify - it doesn't matter. Not to you, or to your colleagues. No one will criticize you. No one has any standards. They are all trying to do the same thing: to do something big, and do it fast.6
While his blockbuster book and movie, Jurassic Park, seem to drive home the point that the misuse of genetic technology can bring disastrous consequences, a real life drama is being unfolded in the scientific world as it is gearing up to face the challenges of the ethical, social, and legal implications (ELSI) of the Human Genome Project (HGP). (ELSI is an acronym of a committee established for the HGP.) While alleviating human suffering by understanding the nature of genetic diseases was the primary motivating force behind the HGP, there may be scientists who pursue this project out of self interest, desiring fame and profit. What is the limitation of genetic technologies? By what criteria can we evaluate the use or misuse of human genetic information? How far should one pursue the improvement of human conditions by genetic manipulation? Fifty years after the liberation of the Nazi death camps, the gruesome pictures of human experimentation and the eugenic movement practiced in the Holocaust are still fresh in our minds. How can we prevent the abuse of human genetic information? This article attempts to give a brief synopsis of the HGP, delineate some ethical principles, and offer possible solutions to the ethical concerns for privacy raised by the HGP.
Brief Historical Perspectives and Future Prospect of the HGP
Ever since the historic publication of the Double Helix Model of DNA by Watson and Crick in 1953,7 molecular biology has emerged as the dominating approach in life sciences. In 1973 Herbert Boyer and Stanley Cohen successfully created the first recombinant DNA molecule using the restriction endonuclease EcoRI and the plasmid pSC101. Their experiment unveiled the era of genetic engineering and biotechnology.
In 1983 Kary Mullis invented the polymerase chain reaction which can amplify a single DNA molecule more than a million fold in a matter of hours.8 This invention tremendously enhanced the power of these newly developed genetic tools.9 The most far-reaching application of these powerful techniques is the Human Genome Project, officially launched on October 1, 1990 with James D. Watson as its first director. Congress allocated approximately three billion dollars and set a tentative time table of 15 years for the complete sequencing of the entire human genome.10
National laboratories and various research institutions established genome centers. Rapid advances in robotics and computer, as well as molecular, technologies have facilitated and economized the project. By the end of 1993, researchers at the Centre d'Etude du Polymorphism Humaine in Paris, France successfully completed the physical map of the 24 human chromosomes (22 homologous pairs plus X and Y chromosomes).11 In late 1994, a full year ahead of the original schedule, an international collaborative team published the first linkage map of human genome.12 Although genetics may be only one of many factors contributing to diseases (many polygenic as well as environmental factors should also be considered), the search for them has been fruitful. Besides HD, quite a few of the estimated 2,000 incurable genetic diseases have been located in the genome, including diabetes, cystic fibrosis, sickle cell anemia, muscular dystrophy, Alzheimer's disease, breast cancer, severe combined immunodeficiency syndrome (SCID), Gaucher's disease, dwarfism, baldness, colon cancer, and amyotrophic lateral sclerosis.
One of the most direct applications of the genetic information is gene therapy. If a copy of the normal gene is introduced into the patient's body and replaces the defective gene, the inherited disease is cured. Doctors performed the first successful gene therapy experiment on a 4-year-old SCID patient. SCID is caused by a single genetic defect which deprives the patient of adenosine deaminase (ADA). In the early 90s, genetically engineered T lymphocytes carrying the normal ADA gene were injected into the patient. Preliminary results indicate that the patient's immune system has been restored.13 Although technical improvements using embryos and rapidly differentiating stem cells instead of lymphocytes are still needed to enhance the survival of the transplanted cells and to reduce the side effects of the procedure, gene therapy has been successfully applied to other treatments, such as targeting tumors. The medical establishment has increasingly accepted gene therapy. Since 1990 over one hundred gene therapy procedures have been carried out throughout the world. In 1996, more than fifty medical facilities were performing gene therapy on some 450 patients.
While the development of genetic technologies has been promising, potential ethical concerns are being raised by the HGP. During a 1991 meeting sponsored by the University of Houston, the director of the Health, Law, Policy Institute, Dr. Mark L. Rothstein, pointed out that the HGP will usher in a new era with unprecedented legal implications.14 It is very likely that credit-card-like codes will be used to carry the genetic information necessary for individuals to evaluate their medical risk and social liability. Will this genetic information be used as a weapon of discrimination? After Alice Wexler describes the discovery of the HD gene in her book, Mapping Fate, she concludes:
Will we ensure that the ability to test not be translated into the imperative to test? Will the decision not to take the test be respected as a legitimate choice and not represented as a failure of courage or a desire to "remain ignorant"?15
Some issues raised by the HD scenario are: Does the presence of the genetic defect doom a child's future? Do parents have a right not to be subject to genetic testing to alleviate anxiety? Are medical professionals obligated to counsel patients in making these decisions? Should employers or insurance companies be given free access to the genetic information of potential employees or clients to determine their employability or set the insurance rates? What professional standards should be set for a physician about the amounts and varieties of genetic testing required for patients by whom malpractice litigation can be measured? Does a person have a right not to know about his or her genetic makeup? Will genetics become a weapon for social discrimination?
The Broadway show, The Twilight of the Golds, dramatized some of these issues.16 When Suzanne Golds discovered by genetic testing that the child she was carrying had a 90% chance of growing up to be a homosexual person, the Golds' elation suddenly turned into gloom. In the conversation between Rob Golds and Suzanne's brother, David, a practicing homosexual, the threat which genetic testing imposes on human society was vividly portrayed. "Nature fails," Rob told David. "We have the technology, and we're going to have more and more information. There's no going back. Let's give people the choice. Let each family do what's right. It's nobody's business, not the government's, not some religious crackpot's, not even the doctor's." David responded negatively to Suzanne's query about aborting the imperfect fetus, "Because we'll lose too much...All the things you love about me are tied to the one element that makes you queasy. Every human being is a tapestry. You pull one thread, one undesirable color, and the art unravels. You end up staring at the walls."
While Rob and Suzanne envisioned a world without genetic diseases, David saw a blatant Nazi philosophy of eugenics. Underlining this discussion was the issue of what constitutes a perfect human being. Biologists have long known that human beings carry certain mutations in an enormous number of genes. Yet because they are recessive and usually invisible, they are not manifested as genetic diseases. Therefore, there are no perfect people per se. The play ended in the divorce of the Golds and the abortion of the fetus. It portrayed a family tragedy, but also asked a more important question: Can a person transcend his genetic predisposition?
Behind all the discussions of nature vs. nurture looms the shadow of the ghostly philosophy of eugenics. During World War II, the Nazi's advocated the supremacy of the Germanic race. They systematically annihilated the inferior Jewish race to avoid contamination of the superior stock of the Germans. This racist attitude is also reflected in the claims that Europeans have superior intelligence because of their genetic stock, while Africans are lacking it. ELSI, however, developed a statement decrying the premature and exaggerated claims that IQ is largely genetically determined.17 Nonetheless, the availability of sperm banks of Nobel laureates and certain "superior" men, for artificial insemination in infertile couples and even in single women who want to conceive out of wedlock, fuels the controversy. Is there such a thing as a superior race? The question itself connotes racism. The Declaration of Independence reminds us not to be self-centered and to respect the rights of others: "We hold these truths to be self-evident, that all men are created equal." Genetic engineering, just as any other intellectual product of modern civilization, is subject to the worldviews of its users.
The Christian worldview should incorporate at least the motifs of natural moral law, stewardship, and virtue when dealing with the ethical problems raised by the new genetics for the twenty-first century. These motifs for the most part can be applied universally despite the cultural or religious milieu. Besides the technical difficulties encountered in altering the genetic makeup of a person, we must also consider the theological limitations of the finiteness of human existence. From a Christian perspective, the concept of a perfect human being connotes a mature or complete understanding of our nature in relationship to God the Father (Matt. 5:48 NIV). This understanding should be one of the standards by which we measure the limitation of the genetic technologies. The following are some thoughts on what constitutes a perfect human being based on these ethical principles.
Toward a Christian Model of Ethics
The Natural Moral Law
Various ancient systems of civilization have promulgated the moral law inherent in nature. The Chinese called it "The Heavenly Way," "The Force of Righteousness," or simply "Morality." Cicero (106-43 BC), the famous Roman philosopher, once said: "Law is the highest reason, implanted in nature, which commands what ought to be done and forbids the opposite. This reason, when firmly fixed and fully developed in the human mind, is the Law."18
Thomas Aquinas (1225-1270) was the first thinker who systematically developed the system of divine law.19 The Creator has designed purposes and directions for his creation which can be discovered in nature by all rational beings. This divine law finds its origin ultimately in the omnipotence and omniscience of God. Because of humanity's sinful nature, humans are unable and unwilling to perceive God's law. Thus, God must reveal it through the Scripture and the church so that humans can have a guide to live by. Aquinas extrapolated Aristotelian teleology: There is a cause of the being and doing of everything. God has given humans the rational faculty to discern the meaning of existence. The divine law is consonant with human nature. A person's survival instinct also depends on the survival of others. We have the obligation to follow the moral standards of society and to maintain the stability of its institutions, such as marriage and the legal system, for they are established to facilitate human survival. They are also ordained by God and can be applied universally.
The Ethics of Stewardship
Humans, created in the image of God, are God's stewards for his creation. The imago Dei concept defines humans as the culmination of God's creation. There are at least four interpretations of imago Dei: (1) human spirituality, the desire to communicate with God; (2) human dominance over all creation; (3) human original righteousness; and (4) human interpersonal relationships.20 The most relevant meaning of imago Dei in the discussion of the interaction between science and theology is the concept of stewardship. After God completed his creation, he called it "good." He entrusted all creation to the stewardship of humans. Humans can use all the resources on earth for survival and for developing civilization. However, humans have to maintain two attitudes: to be grateful toward their Creator, and to be prudent toward managing the creation. Humans are both imago Dei (the image of God), representing God to the creation, and imago mundi (the image of the world), representing all other creatures to God. The enduring meaning of human existence lies in participating with all the creation in praising the eternal, inexhaustible God.21
Since the Renaissance and the scientific revolution which brought about the emphasis on human achievement, a new trend of thought has emerged. Arthur R. Peacocke, a distinguished British theologian and biochemist, championed the term synergism to describe the fact that although humans are creatures, they are also co-creators with their Creator.22 The responsibility of a steward, then, is to supervise, manage, and exercise dominion over the creation. In addition, humans are God's vice regents who are co-creators, co-workers, and co-explorers with God. Because God's providence for his creation involves genetic and ecological changes in the biosphere, humans should use their God-given creativity, together with God, to direct biological changes. However, humankind's biological creation is nothing more than the "remodeling" of what God has originally created. Only the transcendent Creator can create ex nihilo. The cloning of genes and the creation of transgenic organisms only enhance the expression of the potentials endowed by the Creator. Moreover, as vice regents for God's creation, humans can also abuse their God-given power to wreak havoc in creation by creating monsters such as those depicted in Jurassic Park. Human participation in creation demands respect for nature, not exploitation. Thus, the traditional concept of prudent stewardship is still the best ethical system to describe the relationship between humankind and the creation.
The Ethics of Virtue
Virtuous people are driven to do good deeds not by the mores of social institutions, but by their own virtuous dispositions. What constitutes a virtuous disposition is a growing area for debate in ethical theories. Egoists and utilitarians relativize the standards for virtue. Deontologists, on the other hand, champion the virtue of rational self discipline.23 Augustine, who sees loving God as the culmination of all virtues, reinterpreted Plato's four virtues. Wisdom is the love to discern what facilitates or inhibits one's love for God. Self-control is the love to discipline oneself because of one's love for God. Courage is the love to face persecution for God. Justice is the love to serve God alone and rule all else accordingly. Aquinas added the biblical virtues of faith, hope, and love to the list of seven God-given virtues.24 The Scripture emphasizes human virtues as the fruit of the Spirit: love, joy, peace, long-suffering, kindness, goodness, faithfulness, gentleness, and self-control (Gal. 5:22-23 NIV). Virtuous actions are also described in the scriptural injunction "to act justly and to love mercy and to walk humbly with your God" (Micah 6:8). All ethical systems agree that humans need to foster and develop their virtues. The Chinese proverb defines it as: "[The ethics of a virtuous man starts with] disciplining himself, caring for his own family, ruling his nation, and then finally achieving peace in the world." Aristotle treats virtue as the product of human reason which can be cultivated externally by social institutions and internally by self-control.
After the Renaissance, optimistic humanists posit that virtuous behavior depends solely on the complete realization of human reason. However, David Hume attributes human behavior not to the confines of reason, but to human volition and emotion. Augustine has emphasized the motivation of love in guiding one's action and behavior. Eastern mysticism, such as the Buddhist nirvana (emptiness) and the Hindu's Atman is Brahman (self-realization of the divine within), stresses self-control to purify one's sinful desires. It is the human effort in quest of the liberation from the sinful self.25 Virtuous disposition, then, is the internal desire to be good and to do good. The ethical and theological issue is the quest for the origin of such disposition: is it from education, self discipline and cultivation, or is it divinely endowed? The Bible teaches the importance of education and discipline: "Train a child in the way he should go, and when he is old he will not turn from it" (Prov. 22:6 NIV). However, the theme of the Gospels is the grace of God. Christ calls sinners to repent, turn from their wicked ways, and return to God. "God presented (Christ) as a sacrifice of atonement, through faith of his blood" (Rom. 3:25 NIV). Those who repent and have faith in Jesus are no longer condemned, because Athrough Christ Jesus the law of the Spirit of life set (us) free from the law of sin and death" (Rom. 8:2 NIV). Virtuous disposition, then, is only possible when Christians are liberated from the bondage of their sinful natures which are revealed through the Law. It is actually the fruit of the Spirit who indwells Christians (Eph. 1:13 NIV). Experience will confirm the futility of attaining virtuous disposition without God's help.
What Constitutes a Perfect Human Being?
In light of these motifs, I will define a perfect human being as follows:
A Perfect Human Being Is a Creature of God, Confined by Finitude
Since death entered the world through the sin of one man (Rom. 5:12), it is reasonable to assume that humans were created immortal before the Fall. Although Paul was emphasizing the spiritual aspect of death in relationship to humankind's separation from God (Rom. 3:23), the physical bodies of humans must have undergone some changes after the Fall to cause their eventual death. The fact that even before the Fall humans had to eat (Gen. 1:29) seems to suggest that the body needed the nourishment derived from the digested food. It is possible that humans were maintained physically immortal by a special providence of God symbolized by the fruits of the tree of life, which humans were allowed to eat before the Fall (Gen. 2:17). One reason why the fallen couple were expelled from the garden of Eden was to prevent them from eating of the tree of life and living forever (Gen. 3:22). It will not be until the time of the new heaven and new earth that death is eliminated and the fruits of the tree of life will again be freely accessible to the heavenly citizens (Rev. 22: 1, 2).
In this context, all medical procedures that attempt to maintain life are part of the provisions from God. However, there is a limit within which human intervention can operate. The spiritual death precipitated by the Fall can only be remedied by the new life in Christ through regeneration by the Holy Spirit (Rom. 8:1-2). The elimination of congenital diseases may be a primary objective for the Human Genome Project. Advancement in medical and genetic technologies can ultimately be the instruments that God chooses to manifest his work in ameliorating some effects of sin and decay. The prolonging of human life is in accord with the will of God for he is patient toward humankind, not wishing for any to perish but for all to come to repentance (II Peter 3:9).
A Perfect Human Being Was Created to Glorify God and to Enjoy Him Forever, not to Have Self-fulfillment
This proclamation of the Westminster catechism is in some sense contrary to the Declaration of Independence. The chief end of humankind is not to pursue liberty, property, and happiness. The popular notion of health is defined by the World Health Organization: "Health is a state of complete physical, mental and social well-being, not merely the absence of sickness and handicaps." This idealistic definition is largely based on the individual's aspiration for total fulfillment. Measured against this ideal, there are no healthy societies which can guarantee their members total well-being. The result is an unfulfilled expectation of what medicine and the advancements of medical sciences can provide. If we accept the inevitability of death, health can be redefined as "the ability to cope with pain, sickness and death autonomously."26 "Health is not the absence of malfunctioning. Health is the strength to live with them."27 In other words, health is not a state of well-being, but rather, "the strength to be human."28
The paradox of the evils in the world under the benevolence of the Creator can only be solved in the death and resurrection of Jesus Christ. Suffering brings salvation is a theme which permeates the whole Bible. God uses the evil of humankind to achieve his eternal purpose (Gen. 50:20). Christ suffers the most undeserved and violent death. Yet by his wounds, we are healed (Is. 53:5). The salvific purpose of God is achieved and God is glorified through Christ's accomplishment on the cross (John 17:4). While the HGP is motivated by the attempt to alleviate human suffering, the availability of genetic information does not mean a cure for the congenital disease. The ability to label a person with a defective gene may be less empowering than entrapping. For example, a woman who based on genetic testing has been determined to be 50% at risk to contract HD is denied the privilege of adopting a child.29 Knowledge of such an incurable disease may also hurt her psychologically even though she may end up not having the disease at all. Therefore, genetic testing is not necessarily a blessing for the people who are most affected by it. Individuals should have a right not to have their DNA tested and/or not to know its results. While eliminating human suffering is a noble cause, there may be a higher purpose for some incurable diseases after all human efforts are exhausted, as Paul experienced from the thorn in his flesh (II Cor. 12:7-9). Jesus did not confront the origins of congenital diseases. Yet he clearly said that the ultimate purpose of the healing of the man blind from birth was so that "the works of God might be displayed in him" (John 9:3).
A Perfect Human Being Became a Living Being by the Direct Involvement of God
Although its literal meaning is a subject of controversy, the act of breathing into the nostrils of man the breath of life to make him a living being (Gen. 2:7) strongly suggests a direct involvement of God in a person's life. After the creation of the first couple, God endowed the capability for procreation, that is, the potentials of the human gene pool that generated the entire human race (Gen. 1:28; 2:24). While the technology of gene therapy has been successfully applied to correct certain congenital defects in somatic cells, genetic engineering of germ cells should not be actively pursued. Besides the technical difficulties encountered, the philosophical implication of germ line gene therapy is more serious: are we changing the essence of a human being which can only be endowed by the Creator? If we define health as the strength to be human (see above), are we depriving our offspring yet to be born of the freedom to choose the direction of his or her life? Dr. W. French Anderson, the pioneering medical scientist who successfully treated SCID with genetic engineering (see above), believed that the human germ line belongs to the whole human race instead of individuals. Mistakes that may occur in germ line gene therapy can bring irrevocable damage to the human gene pool. Therefore, he also had strong reservations on germ line gene therapy.30
A Perfect Human Being Was Created in the Image of God: The Divine Law in Human Nature
One connotation of the image of God in humans is that humans were created as originally righteous beings who communicate with God (Gen. 1:17-30; 2:16-17). God called all of his creation "very good" (Gen. 1:31). Though there are disagreements on how much of the image of God has been affected by the Fall, all human beings have the remnant of this divine image regardless of whether or not they are Christians (James 3:9) and it is written in their hearts (Rom. 2:15). The Fall has depraved humans' divine conscience. It is up to the church and the social institutions to uphold the divine moral laws. God's moral standards are meant to bring welfare to individuals and to societies (Deut. 6:1-3). The divine law includes humans' responsibility toward God and their neighbors (Luke 10:27). What God wants from his people is "to act justly, to love mercy and walk humbly with your God" (Micah 6:8). The Golden Rule (Matt. 7:12) was meant to maintain the survival and the stability of human society. Humans were created to have the freedom to choose to follow God (Gen. 2:16). By the same token, members of each society should be allowed to choose their individual destiny. Because an individual's genetic information impinges on each person's social status and privileges, it should be respected as one's private property and guarded against unjustified intrusion. The proposed Genetic Confidentiality Act is an attempt to protect the individual's right to control his or her genetic information (see below).
A Perfect Human Being Is to Have Dominion over God's Creation: Stewardship of Life
Opposing the efforts that have already been dedicated for the HGP is unethical for any Christian, since we are stewards of God's creation (Gen. 1:28). Dr. Francis Collins, Director of the National Center of Human Genome Research, himself an outspoken evangelical, recently lamented on the misguided protest to the patenting of genetically-engineered organisms signed by 18 prominent church leaders and the outspoken critic of technology, nonbeliever Jeremy Rifkin.31 The HGP, an outgrowth of the genetic revolution, was motivated by the desire to search for cures for congenital diseases. Humans are admonished to subdue the earth, which includes conquering diseases. The scientific world agrees on the efficacy of the HGP. What scientists need are ethical guidelines on how to use the information obtained from the HGP. Christians should be the salt and the light of the world and actively provide leadership in establishing ethical principles for the HGP, instead of being the obscurantists who oppose technological advance for the sake of tradition.
A Perfect Human Being Is a Creature of God, Representing the Creation to God in Need of Reconciliation
Human beings were the last being to be created. Adam was created from 'adama, the motherly earth. When Adam died, he returned to the earth (dust) (Gen. 2:7; 3:19). God waited until all the rest of the creation had been finished before he created humans, because humans are dependent on the rest of the creation to live. Humans became living beings just like the other creatures. (In Gen. 1:21-24; 2:7, the same word nephesh, living being, is used to describe all of them). Human beings depend on food to sustain their lives, just as the other beasts do (Gen. 1:20, 30; 2:19). They find their living space as do the other creatures on earth. They were commanded "to be fruitful and multiply" (Gen. 1:28), as were the animals (Gen. 1:22).
In the order of creation, the creation of heaven and earth is at the beginning and the creation of humans is at the end. However, in the order of redemption, the new human is at the beginning, with the new heaven and new earth at the end. The new creation starts with the incarnation, crucifixion, and resurrection of Jesus Christ, the Son of God. It was passed from him to all believers, who are made equal to their firstborn brother (Rom. 8:29). In Christ, they become a new creation through the Holy Spirit (II Cor. 5:17; John 3:5). The creation eagerly awaits its liberation from the bondage of decay and frustration into the glorious freedom of the children of God in the final resurrection of the body (Rom. 8:19, 21; I Cor. 15:22-24). The creation of humans is the culmination of all creation made by the same divine Designer.
As imago Dei, a human is the representative of God in creation. As imago mundi, a human is the representative of creation before God.21 In this context, the Fall brought about the threefold alienation of humankind: (1) from the Creator, (2) from fellow creatures, and finally (3) from the creation, resulting in the loss of spiritual, social, and physical health respectively. Reconciliation in each level is necessary in the healing process to bring humans into harmony with God and the rest of creation.32 Medical advances such as the HGP can deal only with physical health. Without the covenantal relationship of reconciliation at each of these three levels, holistic health in terms of reconciliation and wholeness in our crooked and perverted world can never be achieved (Phil. 3:12-15).
A Perfect Human Being Is Conformed to the Image of the Incarnate Word, Living through the New Creation and Leading All Creation into Consummation
Only the Incarnate Word, God the One and Only, has made him known (John 1:18), because he is the image of the invisible God. All things were created by him and for him (Col. 1:15-16). God justified sinners by sending his own Son in the likeness of sinful humankind to be a sin offering so that all who trust in him are proclaimed righteous (Rom. 8:4). Believers whom God foreknew are predestined to be conformed to the likeness of his Son (Rom. 8:29). Christ is before all things, and in him all things hold together (Col. 1:17). God indwells Christ with his fullness (Col. 1:19). As God's perfect image, Christ is the Mediator in creation, the Reconciler of the world, and the Ruler and Sustainer of all things. It is through Christ that the new creation begins (II Cor. 5:17). Believers unite with Christ by trusting in him and being identified with him in his death so that they no longer live, but Christ lives through them (Gal. 2:20; Rom. 6:8). Therefore, to be a perfect human being is to be conformed to the image of Christ.
Humans are justified and will be glorified when their lowly bodies are transformed to be like his glorious resurrection body (Phil. 3:21). Virtue comes as a result of God's grace through faith in Jesus Christ, not by works, for believers are God's workmanship, created in Christ Jesus to do good works (Eph. 2:8-10). It is also through the resurrected Christ that believers will reign with him in the consummation of creation (Matt. 28:18; Rev. 20:6). When Christ appears, we shall be like him (I John 3:2). The redemption of our bodies at his second coming is the consummation of all creation. Therefore, it is wrong to look for the domination of creation, including the elimination of human suffering, in earthly powers, such as those of the state and of science and technology. The domination of creation is found only in the lordship of Christ.
In summary, the limitations of the genetic technologies are confined theologically by the finitude of humans, their divine purpose for existence, their stewardship responsibilities, their moral conscience, their relationship to the creation, and their dependence on God. To conclude, I will examine a legislative approach to deal with the one of the ethical issues raised by the HGP based on some of these considerations.
The Genetics Confidentiality and Nondiscrimination Act of 199633
Various attempts have been made to address the issue of the confidentiality of genetic information. ELSI presented the Genetic Privacy Act to the joint DOE-NIH working group in Dec. 1994.34 The overarching premise of the act is that no strangers should have or control identifiable DNA samples or genetic information about an individual without the person's authorization and control of their dissemination. The World Health Organization has also published preliminary ethical guidelines on medical genetics which include access to banked DNA.35 A similar bill (S 1898) was introduced on June 24, 1996 by Senator Domenici to the 104th Congress of the United States and was referred to the Committee on Labor and Human Resources. Section 2, Findings and Purposes, of the proposed Act states:
The DNA molecule contains an individual's genetic information that is uniguely private and inseparable from one's identity. Genetic information is being rapidly sequenced and understood. Genetic information carries special significance. It provides information about one's family, and more importantly, provides information about one's self and one's self-perception. Genetic information has been misused, harming individuals through stigmatization and discrimination. The potential for misuse is tremendous, as genetics transcends medicine and has the potential to penetrate many aspects of life including enployment, insurance, finance, and education. Genetic information should not be collected, stored, analyzed, nor disclosed without the individual's authorization. Current legal protections for genetic information are inadequate. Uniform rules for collection, storage and use of DNA samples and genetic information are needed to protect individual privacy and prevent discrimination, such as in inployment and insurance, while permitting legitimate medical research.
This legislation will (1) define circumstances under which genetic information may be created, stored, analyzed, or disclosed; (2) define rights of individuals and persons with respect to genetic information; (3) define responsibilities of others with respect to genetic information; (4) protect individuals from genetic discrimination; (5) establish uniform rules that protect individual genetic privacy and allow the advancement of genetic research; and (6) establish effective mechanisms to enforce the rights and responsibilities defined in this Act.
Evaluation of Three Aspects of this Act
The Individual Ownership of his or her Genetic Information (Purposes #1 and #2):
The Act requires written authorization from the owner of a DNA sample for collection, storage, analysis, and disclosure of genetic information. Since genetic information is very much associated with one's self-identity and self-perception, it is imperative that the individual is the ultimate authority of the gathering and dissemination of this information. God's divine law as laid down in the human heart demands that society protect the individual's right to his or her own genetic information. The proposed Act details the conditions under which DNA samples are to be collected, stored, analyzed, and disclosed. Before a DNA sample is collected, individuals are given a detailed explanation about the nature and uses of the genetic information to be obtained, their rights to revoke the authorization prior to the genetic analysis, their rights to destroy their samples, and the availability of optional genetic and psychological counseling. The only exception to the living individual's ownership of his or her genetic information is by court-ordered analysis. Even collecting, storing, or marking of human DNA samples by law enforcement agencies is limited only to authorized probable causes of DNA matching in criminal investigations.
Since genetic traits can be passed on only through heredity, genetic information is not an issue of public health. If an individual's genetic information is helpful to social policies and governmental actions, it can be obtained through the Act's provisions on medical research (see Point 3 below). The court then can be consulted in terms of the appropriateness of whether the government has a right to this information. This Act will probably ameliorate the situations portrayed in The Twilight of the Golds by insuring the rights of someone like Suzanne Golds to choose whether she would undergo genetic testing for her pregnancy and whether she would share this information with her husband and brother (see above).
2. Prohibition on Genetic Discrimination in Employment and Insurance (Purposes #3 and #4)
This provision seems to be the most far-reaching implication of the Act. It prohibits employers, potential employers, and/or insurance companies from using genetic analysis or a genetic precondition as a criterion in employment, benefits, insurability, insurance premiums and/or coverage. Since genetic heritage is endowed to an individual independently of his or her own volition or behaviors, it should not be among the criteria of personal qualification for employment. For health insurance, many of the genetic conditions will always remain only potentials for diseases, for example, couples who both are carriers of the cystic fibrosis gene have only a one in four chance that their offspring will have the disease. Advances in the HGP have made it possible for such couples to conceive healthy children by in vitro fertilization.36 The justice motifs of the ethics of divine law and virtue would support the provision of this Act to prohibit discrimination against a genetic precondition which is beyond the individual's control.
From the perspective of stewardship of resources, however, employers and the insurance industry operate from minimum costs and maximum profits under the purview of just distribution. The productivity of a company and the coverage and premiums of insurance policies are contingent upon what is deemed to be the risk factors for certain individuals, i.e., smokers pay a higher premium than nonsmokers because of their higher health risks. To solve this dilemma, the scientists involved in the HGP should gather more data for the potentiality of medical ailments based on DNA sequences and other nongenetic risk factors. While employers and insurance companies can be given access to genetic data with informed consent of the affected individuals, they should be required to use demonstrable medical risks rather than the potential risks of a genetic defect as criteria for their decisions on employment, insurance coverage, or premiums. At the same time, some kind of national health care plan similar to Medicaid should be developed to cover those patients and their families with genetic diseases that incur medical expenses beyond the available coverage of their health insurance.
3. Establishment of Uniform Rule to Protect Genetic Privacy while Advancing Genetic Research (Purpose #5):
The results of fruitful genetic research can bring much blessing to a well-informed society. For example, thalassemia, a genetic defect causing a deficiency of beta globin (a component of hemoglobin), is endemic to the Greek and Cypriot populations. The country of Cyprus has three characteristics that contribute to the success of preventing genetic diseases: (1) the population is relatively small and homogeneous, (2) the living standards are quite high, and (3) its citizens have a high level of general education. The Cypriot government and the official church (Greek Orthodox) have teamed up to educate, counsel, and treat the people who have thalassemia or are carriers of the disease. They require a diagnostic genetic test for thalassemia before couples can be married in the church. The church provides medical facilities for the testing and treatment of thalassemia. In 1986 over two decades since the beginning of the national campaign, the frequency of thalassemia was reduced from 0.1% to negligible. Thalassemia has effectively been wiped out from Cyprus' medical records since 1992.37 Other successful cases of prevention of genetic diseases include Tay-Sachs, endemic among Eastern European Jews.
Genetic testing also impacts other areas of human societies besides marital relationships. For the first time, we can predict the occurrence of diseases based on the genetic makeup of a person. The stewardship motif should motivate us to do more genetic research. The Act stipulates that any genetic research using individual DNA samples should have potential benefits which outweigh potential risks. A comprehensive international research effort on a Human Genome Diversity Project (HGDP) is underway.38 The goals of these pilot studies are twofold: (1) to improve the technical aspects of DNA collecting, amplification, and analysis; (2) to address the ethical and legal issues of DNA sampling in a cross-cultural setting. The questions proposed for the full-scale HGDP deal with topics such as population history, relatedness among populations, mechanisms of evolution, and disease resistance and susceptibility. Detailed guidelines concerning ethical issues such as informed consent, privacy and confidentiality, ownership and control, and education and racism have been drafted. While less comprehensive, the Act also defines some of these guidelines as well as making provisions for the parental authorization for genetic testing involving minors.
The Genetics Confidentiality and Nondiscrimination Act of 1996, with the suggested modification, is well worth the support of the Christian community as an attempt to address one of the dilemmas raised by the HGP. All ethical problems posed by the new genetics are pressing issues which need to be resolved. The new genetic tool is just like the genie in Aladdin's lamp which has been released from captivity and is awaiting the commands of its master. We must work to prevent the misuse of genetic engineering. If the ethical principles suggested in this paper can be practiced, I think that genetic engineering will become a benevolent force that will positively impact the world for the twenty-first century.
The critical reading and rereading of the final revisions of this paper by Dr. Albert Smith of the Biology Department are much appreciated.
1Huntington's Disease Collaborative Research Group, "A Novel Gene Containing a Trinucleotide Repeat That is Expanded and Unstable in Hungtington's Disease Chromosome," Cell (March 25, 1993): 1-20.
2G. Huntington, "On Chorea," Medical and Surgical Reporter 26 (1872): 317-21.
3J.E. Bishop and M. Waldholz, "Genome," (New York: Simon and Schuster, 1990), Chapter 1.
4A. Wexler, "Mapping Fate," (New York: Random House, 1995), Chapters 12 & 14.
5National Center for Human Genome Research, "NIH Report of the Working Group on Ethical Legal and Social Issues Relating to the Mapping and Sequencing the Human Genome" (Bethesda, MD: 1989).
6M. Crichton, Jurassic Park (New York: Ballantine Books, 1990), 306.
7J.D. Watson and F.H.C. Crick, "Molecular Structure of Nucleic Acids," Nature 171 (1953): 737-8.
8J.D. Watson and J. Tooze, The DNA Story (San Francisco: Freeman, 1981).
9K. Mullis, "The Unusual Origin of Polymerase Chain Reaction," Scientific American, 262 (1990): 56-65.
10U.S. Dept. of Health and Human Services and U.S. Dept. of Energy, "Understanding Our Genetic Inheritance: The U.S. Human Genome Project: The First Five Years, FY 1991-1995."
11R. Lewis, "French Team Completes Physical Map of Human Genome," Genetic Engineering News (Jan. 1, 1994): 1.
12University Gene Beat, "International Research Team Creates First Linkage Map of Human Genome," Genetic Engineering News (Oct. 15, 1994): 26.
13J.R. Nelson, On the Frontiers of Genetics and Religion (Grand Rapids, MI: Eerdmans, 1994), 60.
14G. Taylor, "Houston Conference Explores Human Genome Project's Legal and Ethical Considerations," Genetic Engineering News (May 1991): 1.
15A. Wexler, op cit., 261.
16C.M. Fraser, J.C. Venter, "Twilight of the Golds Explores Question on the Ethics of Human Genetics Research," Genetic Engineering News (Oct. 1, 1993): 4.
17"ELSI Working Group Responds to the Bell Curve," Human Genome News 7, no. 5 (JanBMarch, 1996).
18Quoted in R. Munson, Intervention and Reflection: Basic Issues in Medical Ethics, 4th ed. (Belmont: Wadsworth, 1992), 25.
20H. Blocher, In The Beginning: The Opening Chapters of Genesis, trans. D.G. Preston (Downers Grove, IL: InterVarsity Press, 1984), 79.
21J. Moltmann, God in Creation, A New Theology of Creation and the Spirit of God, transl. M. Kohl (San Francisco: Harper & Row, 1985), Chap. VIII.
22J.R. Nelson, op cit., 111B2.
23A.F. Holmes, Ethics: Approaching Moral Decisions (Downers Grove, IL: InterVarsity Press, 1984), Chapter 13.
24Holmes, Ethics, 116.
25J.M. Kitagawa, Religions of the East (Philadelphia: Westminster, 1968), Chapters 3 & 4.
26I. Illich, Medical Nemesis: The Expropriation of Health (New York: Bentam Books, 1976), 169.
27D. Rossler, Der Arzt zwischen Technik und Humanitat (Munich, 1977), 119, cited in Moltmann, 354.
28K. Barth, Church Dogmatics III, no. 4: 356, cited in Moltmann, op cit., 354.
29S.J. Alpers and M.R. Natowicz. "Genetic Discrimination and the Public Entities and Public Accommodation Titles of the American with Disabilities Act" American Joural of Human Genetics 53 (1993): 26-32.
30W.F. Anderson, "Prospects for Human Gene Therapy in the Born and Unborn Patient," Clinical Obstetrics and Gynecology 29, no. 3 (1986): 586-94. Also remarks given at the 1992 national conference on "Genetics, Religion and Ethics" held at Houston under the auspices of US Department of Energy and the National Center for Human Genome Research and the 1993 Annual Meeting of the American Society for Microbiology, held in Atlanta.
31Dr. Francis Collins, Director of National Center for Human Genome Research, National Institute of Health: remarks made in a plenary session in "Christian Stake in Genetics," a conference on genetics and bioethics, Trinity Evangelical Divinity School, Deerfield, IL, July 19, 1996.
32J. F. Jekel, "Biblical Foundation for Health and Healing," Perspectives on Science and Christian Faith 48, no. 3 (1995): 150-8.
33A slightly modified bill, S. 422, was introduced into the 105th Congress on March 11, 1997 by Senator Domenici. It was cosponsored by eight other senators, one of whom later withdrew his endorsement. The substance of the bill is essentially the same as its 1996 version. At press time, the bill is referred to the Committtee on Labor and Human resources. A similar bill, H.R. 2198 was also introduced in the house on July 17, 1997 and has been referred to the Subcommittee on Health.
34"Human Genome Management Information System, Oak Ridge National Laboratory," Human Genome News 6, no. 6 (March/April 1995): 4.
35D.C. Wertz, J.C. Fletcher, K. Berg, and V. Boulyjenkov, "Guidelines on Ethical Issues in Medical Genetics and the Provision of Genetic Services," World Health Organization, Hereditary Diseases Programme, Geneva (1995): 76.
36A.H. Handyside, M.R. Hughes, et al., "Birth of a normal girl after invitro fertilization and pre-implantation diagnostic testing for cystic fibrosis" The New England Joural of Medicine 327, no. 13 (Sept. 24, 1992): 905-9.
37J.R. Nelson, op cit., 55.
38Human Genome Diversity Project (NSF 96-112), National Science Foundation, 1996.
(printed in Dec. 1998, p. 304)
According to Dr. Francis Collins, director of the National Human Genome Research Center, the Genetics confidentiality and Discrimination Act of 1996 and 1997 was withdrawn by its original proponent Senator Domenici. It was well intentioned but the technical wordings may be interpreted to restrict scientific research on the Human Genome Project.