March 1992 XIII/7
GENETICS, RELIGION AND ETHICS
This month in Houston a conference was held on "Genetics, Religion and Ethics." Sponsored by the Institute of Religion and the Baylor College of Medicine, the conference sought to discuss the theological and ethical implications of the Human Genome project for medicine and public policy. The goal of the Human Genome Project is "to locate and describe the activity of human genes, to dispose for new treatments and cures for diseases, as well as to develop a deeper understanding of all biological processes." (1) Because the Human Genome project will influence the way we understand ourselves and will shape the practice of medicine, this essay will offer a synopsis of issues discussed, utilizing the three-fold perspective of the conference in Houston.
1. Genetic Perspective: The Human Genome Project sponsored and funded by the National Institutes of Health and the Department of Energy is well underway. The cost of the project will exceed 15 billion dollars over a period of 5 years. To date, progress has been impressive. Genes related to or causing specific genetic diseases have been identified. For example, the genes responsible for cystic fibrosis and myotonic dystrophy have been located. Researchers have cloned a gene involved in Fragile X Syndrome, thus allowing for more intensive study of the most common form of inherited mental retardation. To date, much of the information garnered concerns identification of genes which may cause defects if they do not function properly. Hence, the main benefit of the Genome Project has been more accurate and faster diagnosis of disease caused by genetic factors. Cure for most genetic defects is not available. But encouraging information in this regard was provided. A research project seeking to introduce a healthy gene into the DNA of a child whose immune system was functioning poorly seems to have been successful. The genetic defect, adenosine deaminase deficiency (ADA) causes severe combined immunodeficiency (SCID). While ADA defect is found in only about 25 children each year, the scientists conducting this research hope that the knowledge and experience gained in treating this disease will prove useful for treatment of several genetic disabilities such as cystic fibrosis, muscular dystrophy or Down Syndrome. However, because the manner in which genetic defects occur and differ one from another applying technology which has been curative for one defect to another defect will be very difficult. (2)
2. Ethical Perspective: As might be expected, the application of knowledge derived from the Genome Project gives rise to several ethical issues. In private conversations, some participants questioned the wisdom of devoting so much money to the Genome Project when so many U.S. citizens lack access to adequate health care. The main ethical issues discussed publicly at the conference arise from distinctions between therapeutic and enhancement manipulation of genes and between somatic cell and germ cell manipulation. In regard to the first distinction, the following considerations are relevant. Therapeutic manipulation of genes seems to be acceptable and a natural outcome of the Genome Project. When defective genes are discovered, it is reasonable to seek methods to change the behavior of the genes in question, thus preventing or curing a serious handicap or pathology. On the other hand, the acceptance of enhancement manipulation is not so clear cut. Would it be beneficial if the human phenotype were altered through genetic manipulation so that a person were taller, slimmer, or more agile than she would be given her natural genetic makeup? Even more radical, would it benefit a person if her genes which control aggression could be modified or muted? In principle, it would seem that enhancement changes would be ethically acceptable for a human person; I) if they give support to human intelligence, and 2) if they did not suppress any of the fundamental human functions that integrate the human personality. Alteration in the human phenotype which would make it impossible for human beings to experience the basic emotions for example, would be detrimental because the emotional life is closely related to human intelligence and creativity. Again, alterations which would make human beings capable of reproduction only through in-vitro fertilization would be antihuman. Any type of genetic engineering that involves "enhancement" should be undertaken only with the greatest caution. To put the matter in simple terms, we have a very difficult time planning effective traffic patterns in our cities or the collection and disposition of waste materials, let alone planning something as complicated as our genetic future.
The distinction between somatic cell and germ cell manipulation gives rise to the following considerations. Should the knowledge and therapy which results from the Genome Project be applied only to somatic cells, thus affecting one person at a time? Or may genetic therapy and/or genetic enhancement be directed toward germ cells, thus affecting the progeny of the person whose germ cells are manipulated? Most participants seemed to reject germ cell therapy, mainly because it is so difficult to predict how introducing one genetic alteration will affect other genes and how it would effect people generated in the future.
One disturbing issue in regard to genetic research as applied to prenatal diagnosis was not discussed publicly during the meeting. Because the discovery of genetic defects far exceeds the ability to cure, if a serious birth defect is discovered in prenatal screening, then it seems to be assumed that abortion of the infant is the only alternative and is ethically acceptable. Of course, the interpretation concerning what constitutes defective genes is very subjective. Surveys were cited in which 12% of prospective parents stated they would abort a baby whose genes indicated a future problem with obesity. Moreover, abortion as a means of sex selection is common in our society, even though some ethicists will decry it as a form of gender discrimination. In sum, there seems to be a supposition that every couple has the right to a perfect baby. If prenatal screening indicates that the infant does not "fit" the subjective desires of the parents, then abortion is accepted as an ethical alternative. While abortion of the unborn is a serious ethical issue at the personal level, an even more serious ethical issue arises at the social level. People assume that they have a right to a problem free future and that human problems may be solved by eliminating human beings.
3. Religious Perspective: One of the speakers alluded to Dylan Thomas's poem, "A Child's Christmas in Wales" in which a young boy receives "books that told me everything about wasps, except why." Clearly, this sums up the Genome Project insofar as the religious or theological perspective is concerned. What will all this new information and the ability to eliminate many physical and mental defects teach us about being human; about the purpose of human life; about our ability to love God, ourselves, and other people? More specifically, what limits should we recognize as we acknowledge God's creative power?
While everyone at the conference was not happy with the term, the theological issues of genetic research and genetic manipulation seems to be summed up in the term "co-creator." As co-creators with God, what responsibilities and needs do we have to improve upon creation whether we are concerned with genetic manipulation of plants and animals or human beings. The following general norms seem to follow from the belief that human beings are created in the image and likeness of God and thus are responsible as co-creators for their own future.
a) God is a generous Creator, who in creating human beings also called them by the gift of intelligence to share in creative power. Consequently, God does not want human beings to leave fallow the talents that have been given them, but encourages them to improve on the universe.
b) Such improvement is possible because theology can accept the idea that God has made an evolutionary universe in which the human race has been created through an evolutionary process that is not yet complete. Thus God has called humankind to join in bringing the universe to its completion, and in doing this, God has not made them merely workers to execute orders or to add trifling original touches on their own. Rather, God has made them genuine co- workers and encourages them to exercise real creativity.
c) Human creativity depends on the human brain. Any alteration that would injure the brain and thus a person's creativity would indeed be a disastrous mutilation, especially if this were to be transmitted genetically, thus further polluting the gene pool with defects that might be hidden and incalculable.
Much of the information gained from the Genome Project will affect our bodies. But as often expressed during the conference, human beings are entities composed of body and spirit (soul). What affects our bodies will affect our spirit. Because we know our genetic makeup, we shall have a better notion of the factors which influence our behavior, but must we admit that genetic factors determine our behavior? As pointed out at the conference, the genetic difference between a chimpanzee and a human does not exceed 5%. But we know from faith and experience that humans are radically different from chimpanzees.
The ethical and theological issues arising from the Genome Project and the ability to manipulate somatic and germ cells will not go away. There is no "final solution." The importance of the information and technology resulting from the Genome Project and other genetic research cannot be overestimated. The changes in human life resulting from the Industrial Revolution will seem minor compared to the changes resulting from genetic research and technology. In order to avoid the misuse of genetic research and technology, constant vigilance and thoughtful reflection will be required.(3)
Kevin O'Rourke, OP
1) Louis Sullivan, MD. The Genome Project, Dept of HHS, 1991, p. 1.
2) Inder Verma, "Gene Therapy," Scientific American, (November 1990) p.68ff. (an excellent explanation of the means and methods of genetic manipulation).
3) cf. Gene Watch: A newsletter published by the Council for Responsible Genetics (CRG) seeking to alert the public to social and ethical issues raised by research and technology in human genetics.
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