Towards an ethics of the Human Genome Project(HGP)

Pattle Pun,

Department of Biology,

Wheaton College,

Wheaton, IL 60187

Abstract

I. Introduction: Genetic Diseases and the HGP

II. The Historical Perspective and Future Prospect of the HGP

III. Towards a Christian Model of Ethics: What Constitute a Perfect Human Being?

A. Various Ethical Principles within the Christian Worldview:

1. Divine Law of Aquinas and Augustine

2. God's Steward in His Creation:

3. The Ethics of Virtue

B. A Perfect Human Being:

Creature of God: Confined by Finitude

Created to Enjoy and Glorify God

Made Alive by the Direct Involvement of God

Created to be God's Steward

Created in His Image: Divine Moral Law

Creature Representing Creation to God

Conformed to the Image of the Incarnate Word.

IV. Conclusion: An Attempt to Solve a Dilemma: Genetic Confidentiality and Nondiscrimination Act of 1996

V. References

Abstract

The application of genetic engineering culminates in the Human Genome Project(HGP), an attempt to understand our genetic makeup with the hope to cure genetic diseases. The new genetics also brought with it ethical issues such as accessibility and controls of human genetic information. 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 non discrimination was addressed in light of some of these motifs.

I. Introduction:

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. The triplet is repeated around 20 times in normal people. Individuals with the disease, however, have more than 37 copies of this triplet.(1) It was the culmination of an effort of over 120 years since the disease was first described by the physician George Huntington (2) 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 Huntington's disease and his two daughters, Nancy and Alice, had a 50-50 chance of inheriting the fatal disease gene. 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 a complicated set of markers in its vicinity. It will no longer be necessary to get blood from numerous family members. The simplified process of testing is far less expensive and will be readily available to people who want to take it.

The knowledge of the genetic disease without a cure may help in the decision of child bearing. Yet, it also affects the psychological well being and the social status of a potential carrier. It was probably for this reason the Wexler's have elected not to subject themselves to the genetic test for HD (4). Nancy, a molecular biologist herself, was named in 1989 to head the advisory board to the Human Genome Project, to deal specifically with the expected 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 genetic data from patients as possible. The insurance companies also have to decide on the applications and the accessibilities of the genetic information they gathered. Genetic testing will complicate the issues in the Health Care Reform debate in the 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,

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 geared up to face the challenges of the Ethical, Social, and Legal Implications (ELSI) of the Human Genome Project (HGP) (ELSI is acronym of a committee established for the HGP). While to alleviate 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 of 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 to improve the 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 of privacy raised by the HGP.

II. 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.(8) The invention of the Polymerase Chain Reaction (9) which can amplify a single DNA molecule over a million fold in a matter of hours by Kary Mullis in 1983 tremendously enhances the power of these newly developed genetic tools. 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 has allocated approximately 3 billion dollars and set a tentative time table of 15 years for the complete sequencing of the entire human genome.(10) Genome centers were established in national laboratories and various research institutions. Rapid advances in robotics, computer as well as molecular technologies have facilitated and economized the project. The Centre d'Etude du Polymorphism Humaine in Paris, France has successfully completed the physical map of the 24 human chromosomes (22 homologous pairs plus X and Y chromosomes) by the end of 1993. (11) The First Linkage Map of Human Genome was published in late 1994 by an international collaborative team, a full year ahead of the original schedule. (12) Although genetics maybe only one of the many factors contributing to diseases and many polygenic as well as environmental factors should also be considered, the search for the genetic factors in diseases 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 application 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. The first successful gene therapy experiment was performed on SCID. SCID is caused by the a single genetic defect which deprives the patient of adenosine deaminase (ADA). In the early 90's, genetically engineered T lymphocytes carrying the normal ADA gene were reinjected into a 4-year-old SCID patient. Preliminary results indicated 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 also been successfully applied to other treatments such as targeting tumor and it has become increasingly accepted by the medical establishment. There has been over one hundred gene therapy protocols being carried out throughout the world since 1990. More than fifty medical facilities are performing gene therapy on some 450 patients.

While much promising development of genetic technologies has been made, there are also potential ethical concerns 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 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 an individual and society to evaluate his(her) medical risk as well as social liabilities. Will 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 with the following remarks:

Among some of issues raised by the HD scenario are: Does the presence of the genetic defect doom the future of a child's life? 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 in regards to the amounts and varieties of genetic testing required for his patients by which malpractice litigation can be measured? Does a person have a right not to know about his genetic makeup? Will genetics become a weapon for social discrimination? Some of these issues were dramatized in a recent Broadway show The Twilight of the Golds.(16). When Suzanne Golds discovered by genetic testing her pregnancy may have a 90% chance of a baby growing up to be a homosexual person, the Golds' elation suddenly turned into gloom. The threat that genetic testing has imposed on human society is vividly portrayed by the director of the play in the conversation between Rob Golds and Suzanne's brother David, who was a practicing homosexual. "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 else's business, not the government's, not some religious crackpot's, not even the doctor." 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." When 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 every human being carries certain mutations in an enormous number of genes. But because they are recessive and in most cases 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 does not only portray family tragedies. The more important message is whether a person can 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 so as 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 that is lacking or missing among Africans. 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. We hold these truths to be self-evident, that all men are created equal. The Declaration of Independence reminds us not to be self centered and try to respect the rights of others. Genetic engineering, just as any other intellectual products 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 in dealing with the ethical problems raised by the new genetics for the 21st Century! These motifs are for the most part universalizable regardless of the cultural or religious milieu. In addition to the technical difficulties encountered in altering the genetic makeup of a person, there are also theological limitations implicated in 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 relation to God the Father. (Mt. 5:48 NIV). It should be one of the standards by which the limitation of the genetic technologies can be measured. The following are some thoughts on what constitute a perfect human being based on these ethical principles.

III. Towards a Christian model of ethics: What Constitute a Perfect Human Being?

(1) Ethical Motifs:

1. The Natural Moral Law:

The Moral Law inherent in Nature has been promulgated in various ancient systems of civilization. The Chinese called it "The Heavenly Way", "The Force of Righteousness", or simply "Morality". The famous Roman philosopher Cicero (106 - 43 BC) has 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. This Divine Law can be discovered in Nature by all rational beings. It finds its origin ultimately in the omnipotence and omniscience of God. Because of man's sinful nature, he is unable and unwilling to perceive God's law. Therefore God has to reveal to man the Divine Law through the Scripture and the Church so that it can be a guide to his life. Aquinas extrapolated Aristotelian teleology: There is a cause of the being and doing of everything. God has given man the rational faculty to discern the meaning of his existence. The Divine Law is consonant with human nature. Man's survival instinct also depends on the survival of others. One has the obligation to follow the moral standards of his 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 universally applied.

2. Man is created in the Image of God. He is God's steward for His creation.

The imago Deo concept defines man as the culmination of God's creation. There are at least four interpretations of imago Deo: man's spirituality in his desire to communicate with God, man's dominance over all creation, man's original righteousness, and man's interpersonal relationship.(20) The most relevant meaning of imago Deo in the discussion of the interaction between science and theology is the concept of stewardship. After God completed His creation, He called them good. He entrusted all creation to the stewardship of man. Man can utilize all the resources on earth for survival and for developing his civilization. However, he has to maintain two attitudes: to be grateful towards his Creator, and to be prudent towards managing the creation. Human being is both imago Deo (Image of God), representing God to the creation, and imago mundi (image of the world), representing all other creatures to God. The enduring meaning of human existence lies in his participation in the praises of creation to the eternal, inexhaustible God (21). A new trend of thought has emerged after the Renaissance and the Scientific Revolution brought about the emphasis on human achievement. The distinguished British theologian and biochemist Arthur R. Peacocke championed the term synergism to describe the fact that albeit being a creature man is also a co-creator with his Creator(22). The responsibility of a steward, then, is to supervise, manage and exercise dominion over the creation. In addition, men 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, man should utilize his God given creativity, together with God, to direct biological changes. However, man's biological creation is nothing more than "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' Creation, man can also abuse his God given power to wreak havoc in creation by creating monsters such as those depicted in Jurassic Park. Human participation in creation demands his respect for nature, not his exploitation.Therefore, the traditional concept of prudent stewardship is still the best ethical system to describe the relationship between man and the creation..

(3) The Ethics of Virtue.

A virtuous person is driven to do good deeds not by the mores of his social institutions, but by his own virtuous disposition. What constitutes virtuous disposition is a growing area for debate in ethical theories. The egoists and the utilitarian would relativize the standards for virtue. The deontologists, on the other hand, champion the virtue of rational self discipline.(23) Plato's four virtues have been reinterpreted by Augustine who sees loving God as the culmination of all 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 his 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 fruits of the Spirit: love, joy, peace, long-suffering, kindness, goodness, faithfulness, gentleness, and self-control. (Galatians 5:22- 23 NIV) Virtuous actions also involve "to act justly and to love mercy and to walk humbly with your God"(Micah 6:8). All ethical systems agree to the need to foster and develop one's 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, the 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"(Proverbs 22:6 NIV). However, the theme of the gospel is the grace of God. Christ calls sinners to repent and turn from their wicked ways and return to God. "God presented (Christ) as a sacrifice of atonement, through faith of His blood"(Romans 3:25 NIV) Those who repent and have faith in Jesus are no longer condemned, because "through Christ Jesus the law of the Spirit of life set (us) free from the law of sin and death". (Romans 8:2 NIV) Virtuous disposition, then, is only possible when Christians are liberated from the bondage of his sinful nature which is revealed through the Law. It is actually the fruits of the Spirit who indwells Christians (Ephesians 1:13 NIV). Experience will confirm the futility of attaining virtuous disposition without the help of God.

I will attempt to define a Perfect Human Being in light of some of these motifs 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 (Rm. 5:12), it is reasonable to assume that man was created immortal before the Fall. Although Paul was emphasizing the spiritual aspect of death in relation to man's separation from God (Rm. 3:23), the physical body of man must have undergone some changes after the Fall to cause his eventual death. The fact that even before the Fall man had to eat (Gen. 1:29) seems to suggest that his body needs the nourishment derived from the digested food. He may have to suffer eventual physical death if he is not maintained by a special sustenance of God. It is possible that man was maintained physically immortal by a special providence of God symbolized by the fruits of the tree of life, which man was allowed to eat before the Fall.(Gen. 2:17). One of the reasons why the fallen couple was 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 Tree of life will again be freely accessible to the heavenly citizens (Rev. 22: 1,2). In this context, all of the medical procedures in the attempt to maintain life is 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 (Rm. 8:1-2). The elimination of congenital diseases may be one of the primary objectives 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 of the effects of sin and decay. The prolonging of human life is in accord with the will of God for He is patient toward men, 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 for Self Fulfillment.

This proclamation of the Westminster Catechism is in some sense contrary to the Declaration of Independence. The chief end of man 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 the individual's aspiration for total fulfillment. Measured against this ideal, there are no healthy societies which can guarantee their members of total well-being. The result is an unfulfilled expectation on 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 man 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. (Jn. 17:4) The HGP is motivated by our attempt to alleviate human suffering, The availability of genetic information does not mean a cure for the congenital disease. The knowledge of labeling a person with a defective gene may be less empowering than entrapping for her. For example, a woman who had been determined to be 50% at risk based on genetic testing of contracting 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. The individual should have a right not to have his DNA tested and/or not to know about 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 has experienced from the thorn in his flesh. (II Cor. 12:7-9) Jesus did not confront the origins of congenital diseases. Yet He made it clear that the ultimate purpose of the healing of the man blind from birth was that "the works of God might be displayed in him" (Jn. 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 the 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 man's life. After the creation of the first couple, the capability for procreation or the potentials of the human gene pool that generated the entire human race is also divinely endowed. (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. In addition to 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 defined 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/her life? Dr. W. French Anderson, the pioneering medical scientist who successfully treated SCID with genetic engineering (see Section II) believed the human germ line belongs to the whole of human race instead of individuals. Mistakes that may occur in germline gene therapy can bring irrevocable damage to the human gene pool. Therefore he also had strong reservation on germ line gene therapy (30).

A Perfect Human Being was Created in The Image of God: The Divine Law in Human Nature

One of the connotations of the Image of God in Man was that he was created as an originally righteous being who communicates with God. (Gen. 1: 17 - 30, 2: 16 - 17). God called all of His creation "very good". (Gen. 1:31) Although 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 he is a Christian (Jas. 3:9) and it is written in his heart (Rm. 2:15). The Fall has depraved man's 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 man's responsibility towards God as well as to his neighbors.(Lk. 10:27) What God wants from His people is "to act justly, to love mercy and walk humbly with your God" (Mic. 6:8). The Golden Rule(Mt.7:12)was meant to maintain the survival and the stability of human society. Man was created to have freedom to choose to follow God.(Gen. 2:16) By the same token, members of each society should be allowed to choose their individual destinies. The genetic information of individuals impinges on each person's social status and privileges It should be respected as one's private property and is to be guarded against unjustified intrusion. The proposed Genetic Confidentiality Act is an attempt to protect the individual's right to control his/her genetic information (See below).

A Perfect Human Being is to have Dominion over God's Creation: Stewardship of Life

As stewards of God's creation (Gen. 1:28), it is unethical for any Christians to oppose the efforts that have already been dedicated for the Human Genome Project. Dr. Francis Collins, Director of the National Center of Human Genome Research, himself an outspoken evangelical, recently lamented on the misguided protest to patenting genetically engineered organisms signed by 18 prominent church leaders and the outspoken critic of technology Jeremy Rifkin, a non-believer(31). The Human Genome Project, an outgrowth of the Genetic Revolution in recent years, was motivated by the desire to search for cures for congenital diseases. Man is admonished to subdue the earth , which includes conquering diseases. There is a consensus in the scientific world 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 he dies, he returns to the earth (dust) (Gen. 2:7. 3:19). God waited till all of the other creations have been made before he created man, because man is dependent on all of the other creations to live. Human beings become living beings just as the other creatures. (Gen. 1: 21- 24, 2:7, the same word nephesh, living being, was used to describe all of them). The human beings depend on food to sustain their lives, just like the other beasts. (Gen.. 1:20, 30, 2:19). They find their living space as the other creatures on earth. They were commanded "to be fruitful and multiply" (Gen. 1:28), so were the animals (Gen. 1:22). In the order of creation, heaven and earth are at the beginning, ending with the creation of humans. However, in the order of redemption, the new human being 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 first-born brother. (Rm. 8:29) In Christ, they become a new creation through the Holy Spirit. (II Cor. 5:17, Jn. 3: 5) The creation waits in eager expectation for the liberation of the bondage of decay and frustration by being brought into the glorious freedom of the children of God in the final resurrection of the body (Rm. 8:19, I Cor. 15:22-24)). Human beings are the culmination of all creation, made by the same divine designer. As Imago Deo, man is the representative of God in creation. As imago mundi, man is the representative of creation in front of God (21). In this context, the Fall brought about the three fold alienation of man: (1) with the Creator , (2) with fellow creatures, and finally (3) with the creation, resulting in the loss of spiritual, social, and physical health respectively. Reconciliation in each of these 3 levels is necessary to bring man into harmony with God and the creation in the healing process(32). Medical advances such as the HGP can only deal with physical health. Without the covenantal relationship of reconciliation at each of these 3 levels, holistic health in terms of reconciliation and wholeness in the crooked and perverted world could 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. (Jn. 1:18) Because He is the image of the invisible God. All things were created by Him and for Him. (Col. 3:15-16). God justified sinners by sending his own Son in the likeness of sinful man to be a sin offering so that all who trusts in Him are proclaimed righteous (Rm. 8:4). Believers whom God foreknew are predestined to be conformed to the likeness of His Son. (Rm. 8:29). Christ is before all things, and in Him all things hold together. (Col. 3:17) God indwells Christ with His fulness. (Col. 3:19) 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) A believer unites with Christ by trusting in Him and being identified with him in His death so that he no longer lives, but Christ lives through Him (Gal. 2:20; Rm. 6:8). Therefore, a perfect human being is being conformed to the image of Christ. He is justified and will be glorified when his lowly body is 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. (Mt. 28:18; Rev.20:6). When Christ appears, we shall be like Him (I Jn. 3:2). The redemption of our bodies at His second coming is the consummation of all creation, which eagerly awaits its liberation from its bondage to decay and deliverance into the glorious freedom of the children of God (Rm. 8:21). It is therefore wrong to look for the domination of creation including the elimination of human suffering outside the lordship of Christ in other earthly powers such as those of the state and of science and technology.

In summary, the limitations of the genetic technologies are confined theologically by man's finitude, his divine purpose for existence, his stewardship responsibilities, his moral conscience, his relationship to the creation, and his dependence on God. In conclusion, I will attempt to examine a legislative approach to deal with one of the ethical issues derived from the HGP based on some of these considerations.

IV. Conclusion: an attempt to solve a dilemma: The Genetics Confidentiality and Nondiscrimination Act of 1996.

Various attempts have been made to address the issue of confidentiality of genetic information. ELSI presented the Genetic Privacy Act to the joint DOE-NIH working group in Dec. 1994 (33). The overarching premise of the act is that no strangers should have or control identifiable DNA sample or genetic information about an individual without his 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 (34). A similar bill (S 1898) has been introduced on June 24, 1996 by Senator Domenici to the 104th Congress of the United States and referred to the Committee on Labor and Human Resources. The following are quoted from Section 2, Findings and Purposes, of the proposed Act (38):

The DNA molecule contains an individual's genetic information that is uniquely 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 employment, 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 employment 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.

I will attempt to evaluate 3 aspects of this Act in light of the aforementioned ethical model:

(1) The Individual Ownership of his/her Genetic Information (Purposes 1 and 2)

The Act requires written authorization from the owner of 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/her own genetic information. The proposed Act details the conditions under which DNA samples are to be collected, stored, analyzed and genetic information disclosed. Before DNA sample is collected, the individuals are given detailed explanation about the nature and uses of the genetic information to be obtained, his rights to revoke the authorization prior to the genetic analysis and to destroy his samples, and the availability of optional genetic and psychological counseling. The only exceptions to the living individual's ownership of his genetic information is by court ordered analysis. Even collecting , storing or marking of human DNA samples by law enforcement agencies are only limited to authorized probable causes of DNA matching in criminal investigations. Since genetic traits can only be passed on through heredity, genetic information is not an issue of public health. If 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 these information. This Act will probably ameliorate the situations portrayed in The Twilight of the Golds by insuring the rights of Suzanne Golds to choose whether she would undergo genetic testing for her pregnancy and whether she would share this information with her husband and her 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 implications of the Act. It prohibits employers, potential employers, and/or insurance companies to use genetic analysis or 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/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, i.e. couples both being carriers of the cystic fibrosis gene only has a 1/4 chance that their offspring will have the disease. Advances in the HGP have made it possible for such couples to conceive healthy children by invitro fertilization.(35) The Justice motifs of the ethics of Divine Law, and Virtue would support the provision of this Act to prohibit discrimination against genetic precondition which is beyond the individual's control. However, from the perspective of Stewardship of Resources, the employers and the insurance industry operate on the basis of minimum costs and maximum profits under the purview of just distribution. The productivity of a company and the coverage and premium of insurance policies are contingent upon what were deemed to be the risks factor for certain individuals, i.e. smokers pay higher premium than non smokers 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 non genetic risk factors. While employers and insurance companies can be given access of genetic data with informed consent of the affected individuals, they should be required to use demonstrable medical risks rather than the potential risks of genetic defect as criteria for their decisions on employment, insurance coverage or premium. At the same time, some sort of National Health Care Plan similar to Medicaid should be developed to cover those patients and 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 lend itself to the success of preventing genetic diseases: (1) The population is relatively small and homogeneous. (2) The living standards are quite high. (3) Its citizens have high level of general education. The Cypriot government and the Official Church (Greek Orthodox) teamed up to educate, counsel and treat the people who have thalassemia or are carriers of the disease. The diagnostic genetic test for thalassemia is a prerequisite for church officiating of marriages. The church also provides medical facilities for testing for and treating thalassemia. In over two decades of national campaign, the frequency of thalassemia has been reduced from 0.1% to negligible in 1986. Thalassemia has effectively been wiped out from the medical records of Cyprus since 1992 (36). 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 in addition to marital relationship. 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 (37). The goals of these pilot studies are two fold: (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 are 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.

I submit that the Genetics Confidentiality and Nondiscrimination Act of 1996, with the suggested modification, is well worth the support by the Christian community as an attempt to address one of the dilemmas raised by the HGP.

The ethical problems posed by the new genetics are pressing issues to be resolved. The misuse of genetic engineering should be prevented. However, 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 the master of the lamp. I submit that if the ethical principles suggested in this paper can be practiced, genetic engineering will become a benevolent force that will positively impact the world for the 21st Century.

VI. References:

(1) Huntington's Disease Collaborative Research Group, "A Novel Gene Containing a Trinucleotide Repeat That is Expanded and Unstable in Hungtington's Disease Chromosome. Cell, p. 1-20, 3-25-1993

(2) G. Huntington, "On Chorea", Medical and Surgical Reporter", 26: 317-321, 1872

(3) J.E. Bishop and M. Waldholz, "Genome", Simon and Schuster, NY, Chap. 1, 1990.

(4) A. Wexler, "Mapping Fate", Random House, NY, Chap. 12, 14, 1995

(5) "National 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.

(6) M. Crichton, Jurassic Park, Ballantine Books, N.Y., p. 306, 1990

(7) J.D. Watson and F.H.C. Crick, "Molecular Structure of Nucleic Acids", Nature, 171: 737- 738, 1953.

(8) J.D. Watson and J. Tooze, The DNA Story, San Francisco, Freeman, 1981.

(9) K. Mullis, "The Unusual Origin of Polymerase Chain Reaction", Scientific American, 262:56-65, 1990.

(10) "Understanding Our Genetic Inheritance: the U.S. Human Genome Project: The First Five Years, FY 1991-1995" U.S. Dept. of Health and Human Services and U.S. Dept. of Energy.

(11) Genetic Engineering News, Mary Ann Liebert, Inc., NY, p. 1, 1/1/1994.

(12) Genetic Engineering News, Mary Ann Liebert, Inc., NY, p. 26, 10/15/1994.

(13) J.R. Nelson, On the Frontiers of Genetics and Religion, Eerdmans, Grand Rapids, p. 60, 1994

(14) Genetic Engineering News, Mary Ann Liebert, Inc., NY, p. 1, 5/1991.

(15). A. Wexler, op. cit., p. 261

(16) Genetic Engineering News, Mary Ann Liebert, Inc., NY, p. 4, 10/1/1993.

(17) "ELSI Working Group Responds to the Bell Curve", Human Genome News,7(5). Jan-March, 1996.

(18) Quoted in R. Munson, Intervention and Reflection: Basic Issues in Medical Ethics, 4th ed. Wadsworth, Belmont, p. 25, 1992.

(19) ibid. p. 26.

(20) H. Blocher, In The Beginning: The Opening Chapters of Genesis, (D.G. Preston transl.) Intervarsity Press, Downers Grove, p. 79, 1984.

(21) J. Moltmann, God in Creation, A New Theology of Creation and the Spirit of God, (M. Kohl, transl.) Harper & Row, San Francisco, 1985, Chap. VIII.

(22) J.R. Nelson, op. cit. p. 111-112.

(23) A.F. Holmes, Ethics: Approaching Moral Decisions, Intervarsity Press, Downers Grove, Chap. 13, 1984.

(24) Holmes, op. cit.., p. 116.

(25) J.M. Kitagawa, Religions of the East, Westminster, Philadelphia, Chapters 3 & 4, 1968.

(26) I. Illich, Medical Nemesis. The Expropriation of Health, New York, 1976, p. 169.

(27) D. Rossler, Der Arzt zwischen Technik und Humanitat, Munich, 1977, p. 119, cited in Moltmann, p. 354.

(28) K. Barth, Church Dogmatics III/4, p. 356, cited in Moltmann, p. 354.

(29) S.J. Alpers and M.R. Natowicz. "Genetic Discrimination and the Public Entities and Public Accommodation Titles of the American with Disabilities Act" Amer. Jour. Hum. Gen. 53: 26-32, 1993.

(30) W.F. Anderson, "Prospects for Human Gene Therapy in the Born and Unborn Patient." Clinical Obstetrics and Gynecology, Vol. 29, #3, p. 586-594, 1986. 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.

(31) Dr. 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, 7-19-96.

(32) J.F. Jekel, Biblical Foundation for Health and Healing, Perspect. Sci.& Christian Faith, Vol. 48, p. 150-158, 9/1995.

(33) Human Genome News, Human Genome Management Information System, Oak Ridge National Laboratory, Vol. 6, #6, p. 4, March/April 1995.

(34) D.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, p. 76, 1995.

(35) A.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 Jour. Med. 327:13, 905-909. Sep. 24, 1992.

(36) J.R. Nelson, op. cit. p. 55.

(37) Human Genome Diversity Project (NSF 96-112),National Science Foundation, 1996.

(38) A slightly modified bill, S. 422, was introduced into the 105^th Congress on March 11, 1997 senator Domenicic. 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. 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. According to Dr. Francis Collin, director of National Center for Human Genome Research at the ASA/Cis conference at Cambridge University, August 3, 1998, the bill was withdraw due to its technical language which may be misconstrued as anti-science despite its good intention.

Acknowledgement:

The critical reading and rereading of the final revisions of this paper by Dr. Albert Smith of the Biology Department are much appreciated.

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