EUGENIC DANGER OR GENETIC PROMISE: A REVOLUTION FOR THE MILLENNIUM
by David A. Ames
DAVID A. AMES is the Episcopal Chaplain at Brown University and Clinical Assistant Professor of Community Health, Brown Medical School. He is a member of the Cross Currents Board of Directors, and former executive director. He is also a member of the Episcopal Church Executive Council Task Force on Ethics and the New Genetics.
How does loving one's neighbor and
respecting the dignity of every person speak to the new
It was Hippocrates who said, "Declare the Past, Diagnose the Present, Foretell the Future." That is in a sense what I intend to do in sharing with you some observations about my interest in human genetics. In declaring the past I shall summarize my involvement in the field of biomedical ethics and the present excitement as well as anxiety about the Human Genome Project. In diagnosing the present I shall outline some of the key issues as we consider what some ethicists perceive as eugenic dangers and also promises for genetic therapies. In foretelling the future I shall merely confirm what we already know: we are at the dawn of a revolution in medicine and genetic therapies that will dramatically alter how we understand the meaning of health and disease. What can we expect from research efforts in the next several years, and how should communities of faith and the larger society respond to these new discoveries?
Declaring the Past
My interest in medical ethics began in the early 1970s when I became a member of the Institutional Review Board at Women and Infants Hospital in Providence, Rhode Island. As a community representative I was to help apply newly approved federal regulations governing research involving human subjects. The areas of informed consent and research in neonatology commanded a significant portion of time and energy. I was also serving on a committee in the newly established Brown University Medical School to discuss the feasibility of beginning a program in human values and ethics in medical education. In 1980 I was asked by the Episcopal Bishop of Massachusetts to serve on a biotechnology study group to address issues that the Church should be aware of in the emerging field of medical ethics and new developments in biology. The new biology was upon us. Scientists, ethicists and theologians had to learn to communicate with each other. A new language was needed, and adult education programs were in demand.
After eighteen months of meetings with the biotechnology study group and three years of formal study and writing, my colleague the Rev. Colin Gracey, D. Min. and I published in 1984 a group study guide. We titled it, "Good Genes?: Emerging Values for Science, Religion and Society." The study guide was a case-study approach to the cutting edge issues of the new biology. We included a context for ethical decisions, a review of recent history, and some directions for using the material. The sections of the guide were headed: "Cells on the Move," "Surgery before Birth," "Fertility Problems and Birth Defects: Opportunities and Dilemmas," "The Business of Biology," and "Theological Viewpoints."
In a section about a perspective on life and knowledge I wrote: "Science and religion perhaps have more in common than many practitioners in either area realize. They are separate realities with separate languages and separate methodologies. Yet, they need each other for they are both engaged in the quest for knowledge and truth, and the quest for meaning and purpose." I then quoted the microbiologist Charles Birch and the theologian John Cobb: "Life is purposeful. Indeed, it is defined by its purpose. . . Life aims at the realisation of value, that is rich experience or aliveness. . . Life is not only purposeful in itself, but it is the source of all the derivative purposes in living things. Purpose involves a distinction between what is and what might be and an appetition for some form of what might be. It is Life that introduces into the. . . physical world the attractive vision of unrealized possibility" (The Liberation of Life, Cambridge University Press, 1981, 197).
I concluded: "In this sense we need to understand science and religion in their proper relationship to each other; and how each may or may not contribute to the richness of experience, the realization of value, and the purpose of Life."
The clash between science and religion may be a result of the ideas of the Enlightenment of the eighteenth century, which continue to dominate the scientific and academic worlds, and which led us toward an objectification of life. The Enlightenment was a "philosophical movement characterized by a belief in the power of human reason, and by innovations in political, religious, and educational doctrine" (The Random House College Dictionary, 1984, 439). It was a period of serious division between religion and science, one that eventually drove a wedge between rational discourse and observation of reality, and the interpretation of the meaning of human life in philosophical and faith traditions. Some philosophers of science believed that they could prove the origin of life and therefore articulate its meaning and purpose without recourse to any theology or ethical consideration. (I admit this may be an exaggeration, but I make it to drive home a point.) However, through the insights of many scientists, both natural and physical, we learned that scientific experiments and technological discoveries did not provide answers to the deepest human questions about meaning. Questions about identity, purpose and meaning are questions of worldview and thus of philosophy and faith. We are in an era of greater collaboration and a common quest by philosophers of science and religious ethicists about both the potential and the limits of human identity and understanding. This is profoundly a renewed exploration of human nature and destiny. Science, through the advances being made in human genetics and genetic manipulation, is challenging Christian ethicists to clarify the value of human life at every stage of existence from conception and embryonic cell division to old age compromised by chronic or debilitating disease. Scientists and ethicists now need to be in constant dialogue to assure that discoveries and applications of new knowledge and technology will be used for ethical purposes in furthering human well-being and ecological sustainablilty.
Diagnosing the Present
Dr. Francis Collins, the Director of the US Human Genome Project, an initiative to map the entire genetic make-up of human beings, begins a chapter in a book titled Genetic Ethics (Grand Rapids: Wm. B. Eerdmans, 1997, 95) with a quotation from the Gospel of Matthew: "Jesus went through all the town and villages, teaching in their synagogues, preaching the good news of the kingdom, and healing every disease and sickness." Collins then asserts: "If healing is something which Jesus Christ in his short time on this earth spent so much time on, it is something that those who would follow him should also consider especially important. Such is the theological justification for the Human Genome Project. This initiative is a natural extension of our commitment to heal the sick."
On June 27, 2000, the New York Times announced that the "Genetic Code of Human Life Is Cracked by Scientists. . . Today we are learning the language in which God created life." In an achievement that represents a pinnacle of human self-knowledge, two rival groups of scientists said that they had deciphered the hereditary script, the set of instructions that defines the human organism:
The human genome, the ancient script that has now been deciphered, consists of two sets of 23 giant DNA molecules, or chromosomes, with each set -- one inherited from each parent -- containing more than three billion chemical units.
The successful deciphering of this vast genetic archive attests to the extraordinary pace of biology's advance since 1953, when the structure of DNA was first discovered and presages an era of even brisker progress.
The Human Genome Project is almost completed. It will have a profound impact on our understanding of health and disease, on research designed to eradicate certain undesirable genetic conditions, on what it is to be human. I want to summarize briefly what we know as of now, what we might fear, some implications for people of faith, and some of the ethical issues are raised in proposed human embryonic stem cell research.
What We Know
Sharon Begley writes in Newsweek magazine on April 10, 2000: "Science will know the blueprint of human life, the code of codes, the holy grail, the source code of Homo sapiens. It will know,. . . 'what it is to be human.'
Doctors will drip droplets of our genes onto a biochip to figure out if we have the kind of prostate cancer that will kill or not, or to figure out if ours is the kind of leukemia that responds to this drug rather than that one. They will analyze our children's genes to rank their chances of succumbing to heart disease or Alzheimer's. Scientists will learn which genes turn on when a wound heals, when a baby's fingers grow, when a scalp becomes bald or a brow wrinkled, when a song is learned or a memory formed, when hormones surge or stress overwhelms us -- they will learn how to manipulate those genes. (52)
Each cell in the human body contains a copy of the same DNA. DNA, or deoxyribonucleic acid, is the genetic material found in all living organisms. Every inherited characteristic has its origin somewhere in the code of each individual's complement of DNA. A gene is the hereditary unit such as a segment of DNA coding for a specific protein. Human beings have about 80,000 genes, and we are more than ninety-nine percent identical in our genetic makeup.
Eric Lander of the Whitehead Institute for Biomedical Research at M.I.T., compares knowledge of the human genome to the
discovery of the periodic table of the elements in the late 1800s. "Genomics is now providing biology's periodic table, Scientists will know that every phenomenon must be explainable in terms of this measly list. . ." Already researchers are extracting DNA from patients, attaching fluorescent molecules and sprinkling the sample on a glass chip whose surface is speckled with 10,000 known genes. A laser reads the fluorescence, which indicates which of the known genes on the chip are in the mystery sample from the patient. . . (Newsweek, 54-55)
What We Might Fear
Those who are mindful of developments during the late nineteenth century and the first half of the twentieth century have warned about the possible dangers of eugenics. Although a literal translation of this term is "good genes," the word eugenics has become associated with the atrocities of application by the Nazis as well as others in Europe and the United States. Arthur Dyck, Professor of Ethics at Harvard University, enumerates several historical abuses as well as contemporary examples.
Policies within the eugenics movements in the early decades of the 20th century included positive eugenics, which sought to foster more breeding among those deemed to be socially meritorious; and negative eugenics, which sought to discourage breeding among those deemed to be socially disadvantageous. . . In 1907, Indiana passed the first laws allowing sterilization of the mentally ill and criminally insane; by the late 1920s, similar laws had been passed in 28 states. As a result, 15,000 individuals were sterilized before 1930, many of them against their will and most while incarcerated in prisons or homes for the mentally ill. (Genetic Ethics, 27)
From 1934 to 1937, an estimated 400,000 sterilizations were performed in Germany, and by 1939, 30,000 people had been sterilized on eugenic grounds in the United States. In October 1939, Hitler began a euthanasia program as part of "the duty to be healthy" (pp. 27-28). We know about the genetics research conducted in the concentration camps which later was judged as criminal acts at the Nuremberg trials. Then the United States had its own moral and ethical abuses with experimental syphilis studies on prisoners in Tuskegee during the 1930s, and with experiments on mentally retarded children in the 1960s at Willowbrook, an institution for severely retarded children. It was as a result of these abuses that the government instituted regulations to govern research involving human subjects and established institutional review boards to approve and oversee clinical studies. We had to assure that the benefits of research outweighed the risks and that human subjects were protected through a process of informed consent.
It is because of this history of experiments on human subjects without their consent and the practice of sterilization and euthanasia that Arthur Dyck and others worry about the current and future practice of eugenics. For example, a test can determine one's predisposition to Huntington's disease, in which "afflicted individuals experience a gradual loss of control over their muscles, body, and mind." Because one can find out whether he or she is a carrier of this gene, should one have that knowledge? It can work both ways -- as preparation for the inevitable, or as frightening and psychologically devastating information that could lead to despair and hopelessness.
Implications for People of Faith
Philip Boyle, editor of the Park Ridge Center Bulletin (January-February 2000), asks whether religious traditions will "simply ignore, react, or be prepared when health care professionals and other faithful find themselves in the morass of genetics decision making?" He suggests: "Faith traditions can sit on their theologies and let genetic progress define what is most valuable in health and healing, or they can embrace and transform the opportunities brought by nanomedicine."
We should not "sit on our theologies," but become involved in a proactive way. What will happen, indeed what is already happening, with genetic screening, testing, therapy, and engineering, has a profound effect on our understanding of what it means to be human and on our understanding of a Creator God who creates human kind in God's own image, and gives us the opportunity not only to procreate but to "till the earth and keep it." Are we "playing God" in our genetic research and transforming actions? Is this a taboo, or is it something we have done throughout our human history? Where do we say, "Yes, let's move forward" or, "OK, proceed with caution" or, "Stop, we dare not go there"?
The new genetics is having profound implications for many families. Hereditary conditions like cystic fibrosis, Huntington's disease, galactosemia, hemophilia, just to name a few, already cause tremendous anguish for patients and families who are so afflicted. As Ronald Cole-Turner, professor of Theology and Ethics at Pittsburgh Theological Seminary, writes: "The quandary is not new, but it is experienced today with brutal clarity when a believer needs to trust God in a circumstance where it seems the Creator has failed and we have discovered the molecular mechanisms of the failure. It is no exaggeration to say that on top of everything else, an adverse genetic report is a crisis of faith, shaking the believer's confidence in a trustworthy God" (Park Ridge Center Bulletin, 7). For clergy and counselors to be capable of responding to families with these kinds of issues, we need adequate education, effective communication, and heavy doses of compassionate caring.
Rabbi Byron Sherwin, Vice President and Distinguished Service Professor at Chicago's Spertus Institute for Jewish Studies, claims that:
Gene therapy and genetic repair of cloned organs will change the face of clinical medicine. Genes will be used not only to repair damaged tissue and organs but to generate new ones. . . Developments in genetics will stimulate us to rethink ourselves as human beings, and this is an issue that falls squarely within the parameters of theology and philosophy. . . Genetics. . . challenges us to reconsider fundamental issues such as who are we, what makes us human, what distinguishes us as a species, why do we do what we do, should we do what we can do scientifically and technologically, do we have moral volition?" (Bulletin, 4, 8)
Rabbi Sherwin writes: "From the perspective of Jewish moral theology, three insights may serve as a rudder as we try to navigate the unknown currents of developing genetic research and clinical practice." The first insight has to do with "medicine as a religious endeavor aimed at saving life when it is threatened, preventing illness when health is present, and restoring health when it is absent. . . Insofar as genetics furthers these goals of medical practice, it is not only praiseworthy, but is a moral imperative." His second insight is that "like God, humans have the power to create. . . In working toward the completion of the process of creation begun by God, human beings thereby articulate their nature as beings created in the 'image and likeness of God.' " The third insight comes from some medical Jewish biblical commentators on the moral lesson of the story of the tower of Babel: "technological achievement untempered by humility leads to dehumanization and disaster" (8).
Genetics, like the splitting of the atom, can be used for good or horrible ends. It is up to all of us to make certain the uses of genetics serve human well being and protect genetic diversity and ecological balance. The morality of the geneticist (i.e., the reasons given for what she/he is doing) and the ethics (i.e., why the stated reasons are the right ones in furthering the desired ends) of genetic intervention are important criteria for public policy.
Stem Cell Research
Human embryonic stem cells (hES) have the potential to allow the repair of any failing organ by the injection of healthy youthful cells, and this breakthrough of isolating primordial stem cells may ultimately impact health care more broadly than the discovery of anesthesia or the development of antibiotics.
In August 2000 (New York Times, August 24, 2000, "New Rules on Use of Human Embryos in Cell Research," by Nicholas Wade) the National Institutes of Health issued long-awaited rules that would permit federally financed researchers to work on human embryonic stem cells (hES). Scientists believe these cells hold great promise in treating many diseases, particularly the degenerative maladies of age. The rules would permit federally financed researchers to use cell lines that were derived from frozen human embryos due to be discarded by fertility clinics, usually because the owners no longer wanted them.
The decision was welcomed by scientific groups like the Federation of American Societies for Experimental Biology. President Clinton referred to the "potentially staggering benefits of this research. . . I think we cannot walk away from the potential to save lives and improve lives, to help people literally get up and walk, to do all kinds of things we could never have imagined, as long as we meet rigorous, ethical standards."
Opposition was voiced by Senator Sam Brownback, Republican of Kansas, the Senate's leading critic of the agency's policy. He claims that human embryonic stem cell research is "illegal, immoral and unnecessary." Mr. Brownback said the research was prohibited by a Congressional ban on financing research that led to the destruction of human embryos, that sought to benefit by taking human life, and that would lead to treatments that can be developed by other means: the use of adult stem cells.
The initial draft of the agency's guidelines, issued last December, drew criticism as morally inconsistent from anti-abortion groups and even the National Bioethics Advisory Commission. In their final form, the guidelines have been made more stringent, by addition of a new level of review. Biologists seeking federal money to work on human embryonic stem cells will have to win approval from four separate bodies -- their university's in-house review group and three panels within the N.I.H. -- before receiving their money.
The guidelines include several provisions designed to discourage anyone from donating embryos for profit or the medical benefit of relatives. The new version also allows the donor of the embryonic cells to be identified, since the immunological make-up of the cells may be important if they are transplanted into patients.
The opponents of financing embryonic stem cells have argued that the promised health benefits could be obtained just as well as from a patient's own adult stem cells. The argument is not without substance. Most organs seem to have a small reservoir of stem cells that generate new cells, such as the bone marrow stem cells that daily replenish the red and white blood cells. They might also be coaxed to make muscle cells or nerve cells. However, adult stem cells are less versatile than embryonic stem cells. Embryonic stem cells have the potential to differentiate into any cell type in the body.
The Geron Corporation, a private company engaged in stem cell research, has begun to address ethical concerns (The Hastings Center Report 29, no. 2 [March-April 1999]). It has created an Ethics Advisory Board to function as an independent group to consult and give advice to the corporation on the ethical aspects of the work it sponsors. The Ethics Advisory Board has suggested six conditions that they feel must pertain for hES research to be conducted ethically:
1. The blastocyst must be treated with respect appropriate to early human embryonic tissue.
2. Women/couples donating blastocysts produced in the process of in vitro fertilization must give full and informed consent for the use of the blastocysts in research and in the development of cell lines from that tissue.
3. The research will not involve any cloning for purposes of human reproduction, any transfer to a uterus, or any creation of chimeras (i.e., grotesque life forms).
4. Acquisition and development of the feeder layer necessary for the growth of hES cell lines in vitro must not violate accepted norms for human or animal research.
5. All such research must be done in a context of concern for global justice.
6. All such research should be approved by an independent Ethics Advisory Board in addition to an Institutional Review Board.
In response to these conditions, two bioethicists question: "What's in the dish?" (The Hastings Center Report 29, no. 2 [March-April 1999]: 36-38) The problem of "what's in the petrie dish?" is twofold. First, it is becoming possible to isolate and separate human germ cells and embryonic/fetal tissues from their ordinary environments. Once outside these environments, these cells take on different meanings, depending on the institutional context. Frozen sperm become property in divorce settlements; frozen embryos are made available for adoption. In this same spirit, one's skin cells may become embryos through Dolly-style cloning. Second, the notion of clinical viability in obstetrical and neonatal medicine plays an increasingly important but fuzzy role in determining the moral status of an embryo or fetus. These ethicists conclude that we must think carefully and at a fundamental level about the changing definition of reproductive material and the changing meaning of reproductive activity.
Lori Knowles, an associate for law at the Hastings Center, focuses on the issue of property, progeny, and patents. She asks: Who profits financially from lucrative patents on hES cell lines;? Who profits from the potential medical benefits? She articulates three options to consider: (1) "We can disallow commercial patents on human tissues;" (2) "We can allow all parties to profit from this research;" or (3) "We can both promote altruism and encourage medically beneficial research if we applaud couples who donate embryos and reward companies whose research advances science while also insisting that the therapeutic benefits of the research are available to those who need them" (The Hastings center Report 29, no. 2 [March-April 1999]: 38-40).
Couples should be encouraged to donate embryos for hES research that are products from in vitro fertilization and are not going to be implanted into the uterus for reproductive purposes. While an embryo may be deserving of a certain amount of respect, it has not developed to a stage in which it can be considered an individual entity or have the moral status of a person. This view is shared by many theologians and ethicists in Catholic, Protestant, Jewish, and Islamic religious traditions. What many scientists and ethicists feel is needed is the establishment of federal guidelines that will support both human tissue and embryo stem cell research, and an administrative oversight committee that can monitor investigators and protocols for this research. It is important that research be designed to benefit human need, that the therapies resulting from it be made available to those in need, and that clinical trials follow existing established procedures.
There are those who claim that human life begins at conception and once that occurs, that life should be protected in every way. It should be protected from being destroyed by abortion, or from being exploited for medical experimentation (Dona LeBoeuf, "Embroyic Stem-Cell Research Immoral," Providence Journal, Op-Ed, July 15, 2001). I agree that human life begins at conception, but I firmly believe that that living entity only has the potential for becoming human if it is implanted in the womb of a woman and develops until it can survive independently by being born.
David J. Anderson, a biologist at the California Institute of Technology reports (New York Times, Op-Ed, July 15, 2001), "embryonic stem cells are primitive cells with a broad potential to differentiate into any specialized cell type in the body." They differ from adult stem cells by that fact of "potential to differentiate." This means that they are pluripotent cells. And, as the Times editorial in the same edition reports, these stem cells "are only a tiny clump of cells, no bigger than the period at the end of this sentence. . . At this primitive blastocyst stage, they have no identifiable organs or parts, no awareness, none of the attributes we think of as human."
It is important to separate the issue of embryonic stem cells from the issue of abortion. They are not the same. We need to distinguish the moral status of a blastocyst or embryo from that of an implanted fetus. The stem cells that would be used for research are taken from frozen cells resulting from in vitro fertilization that would otherwise be discarded. They do not have the potential to develop into a nascent human being. It is only prudent to use them in an effort to find a cure for or to repair damage resulting from any number of life-threatening conditions. We as a society owe more respect to people who are suffering because of these diseases than we owe to stem cells derived from embryos that would be destroyed.
On August 31, 2000, a press release was issued by the Board of Directors of the Religious Coalition for Reproductive Choice endorsing the use of embryonic stem cell tissue and fetal tissue for vital medical research as morally sound. "As people of faith, we are called to be partners with God in healing and in the alleviation of human pain and suffering." While honoring various moral claims and diverse religious views, the Board concluded that research using stem cells and fetal tissue offers enormous hope for all of humankind. "Indications are that human embryonic stem cell research has the potential to lead to life-saving breakthroughs in major diseases" such as Parkinson's, Alzheimer's, spinal cord injuries, stroke, burns, heart disease and diabetes, and could reduce the dependency on organ donation and transplantation. Currently, this knowledge cannot readily be obtained from other sources such as adult stem cells and fetal tissue.
Foretelling the Future
Given all of this, what do we have to look forward to in the future? In an address to the Harvard Health Caucus on February 20, 2001 (http://web.med.harvard.edu/healthcaucus/mainframe.html) Francis Collins forecast that by the year 2010, we will have predictive genetic tests available for a dozen conditions. Interventions will be possible to reduce the risk of several of these. Many primary care physicians will begin practicing genetic medicine. Pre-implantation diagnosis will be widely available, the limits of which will be highly debated. There will be reasonable effective federal legislative restrictions to genetic discrimination and privacy. Access will remain inequitable, especially in the developing countries.
By the year 2020, we might see gene-based designed drugs for diabetes, hypertension, and other diseases. Cancer therapy will be precisely targeted to the molecular fingerprint of the tumor. There will be a pharmacogenomic approach that is standard practice for many drugs. Mental illness diagnosis will be transformed, new therapies under study, and societal views will shift. We may be able to eliminate things like sickle cell anemia, Huntington's Disease, and other conditions. Germ-line therapy is now unethical, and is an area in which we cannot tolerate mistakes.
Finally, by the year 2030, comprehensive genomics-based health care will be the norm. It will include such things as individualized preventive medicine; environmental factors and their interaction with genotypes will be better understood; illnesses will be detected early by molecular surveillance; and gene therapy and gene-based drug therapy will be available for many diseases. There will be a full computer model of human cells replacing many laboratory experiments. The average life span will reach ninety years of age, and will add stress to socio-economic resources. A major anti-technology movement will probably be active in the United States and elsewhere. And, there will be a serious debate underway about humans possibly "taking charge" of their own evolution.
Another initiative reported in the press last year (London, August 16, 2000) was that a panel of experts in Britain has urged the government to allow the cloning of human embryonic stem cells for scientific study of transplants. The expected benefit of therapeutic cloning is that the cells taken from a fertilized egg could be induced to form any desired tissue of the body and could then be used to repair the damaged tissue in a patient.
The promised outcome is that one day it will be possible to grow neurons to replace nerve cells in a brain killed by Parkinson's disease, skin to repair burns, and pancreatic cells to produce insulin for diabetics. Transplants often fail because the body recognizes the donated organ as foreign and uses the immune system to fight it as if it were an invader. To avoid the problems of immune rejection, scientists might establish a bank of human embryonic stem cells that would match almost anyone in the population.
Another possibility is to take the nucleus of one of a patient's skin cells and insert it into a human embryonic stem cell whose own nucleus has been removed. The clone of cells formed from this hybrid entity would be almost identical with the patient's own and should be immunologically acceptable. Since human stem cells were isolated in a lab at the University of Wisconsin-Madison for the first time in 1998, advances in the field have come rapidly. Scientists have been able to extract stem cells from embryos and grow the cells until they have developed into specialized forms such as muscle cells and neurons. They have also been able to make bone marrow cells turn into liver cells, offering hope that cells from adults can be made to form different types of cells without the need to create an embryo.
As a way to guide our thinking and action in response to this genetic revolution, The Council for Responsible Genetics, a national organization based in Cambridge, Massachusetts, dedicated to fostering "public debate about the social, ethical and environmental implications of the new genetic technologies," has adopted a "Genetic Bill of Rights" to "protect our human rights and integrity and the biological integrity of the earth." There are ten statements in this Bill of Rights:
1. All people have the right to preservation of the earth's biological and genetic diversity.
2. All people have the right to a world in which living organisms cannot be patented, including human beings, animals, plants, microorganisms and all their parts.
3. All people have the right to a food supply that has not been genetically engineered.
4. All indigenous peoples have the right to manage their own biological resources, to preserve their traditional knowledge, and to protect these from exportation and biopiracy by scientific, corporate or government interests.
5. All people have the right to protection from toxins, other contaminants, or actions that can harm their genetic makeup and that of their offspring.
6. All people have the right to protection against eugenic measures such as forced sterilization or mandatory screening aimed at aborting or manipulating selected embryos or fetuses.
7. All people have the right to genetic privacy including the right to prevent the taking or storing of bodily samples for genetic information without their voluntary informed consent.
8. All people have the right to be free from genetic discrimination.
9. All people have the right to DNA tests to defend themselves in criminal proceedings.
10. All people have the right to have been conceived, gestated, and born without genetic manipulation.
While the "Genetic Bill of Rights" is important for discussion, as a Christian I question what Christian ethics offers to help us face this challenging future. The norm in Christian ethics is love of neighbor. This norm includes the proximate norms of justice, equality, freedom, mutuality, thankfulness, and respect for the dignity of every human person. Within the realm of medical ethics, the basic principle is to do no harm, and to treat everyone alike with respect to available medical therapy. In medical research involving human subjects, the issues always involve those of risk assessment and the benefits to be derived from particular studies. Who benefits, and who bears the cost? If, as Dr. Collins forecasts, that by the year 2010 we do happen to have genetic tests available for a dozen conditions, will these tests be available to everyone in need of them? Will there be freedom to refrain from being tested? And, if the test undertaken is positive, i.e., if the person has the genetic condition as the test will prove, is there adequate treatment or therapy available to correct the condition? Does everyone have access to the treatment? Loving one's neighbor and respecting the dignity of each person demands no less. The same can be said for germ-line gene therapy and for molecular surveillance to detect illnesses.
As in every situation, the major ethical dilemmas occur when it is not clear about what course of action to take. In these cases, we need to rely on precedent, what we have learned from the past; on our best judgment about the best course of action to pursue given all available information; and on the expected or anticipated outcomes of decisions we make. Will the common good be served? Will individual freedom, dignity, and health be advanced? Will justice prevail so that no one is discriminated against?
We are indeed at the beginning of a revolution for this new millennium. I have tried to outline some of the exciting promises for our human future while also acknowledging some of the possible dangers and threats to human freedom. The issues are scientific, but they are also theological, moral, ethical, legal, and social. It remains to be seen how we will develop the kind of infrastructure and public involvement to assure that our concerns for human goodness and well-being will be advanced. Going back to one of the ongoing themes of my career, I hope that collaborative, interdisciplinary, interactive groups will grapple with these issues. There is no turning back, the genes have been unleashed; we are learning to understand them and to create a "brave new world" for all humanity.
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