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PAGE 8 — The Georgia Bulletin, Janaury 4, 1990 R ' •• ' By Father Kevin D. O’Rourke, OP Catholic News Service Who decides in the 1990s? Would you prefer a world in which very few people ever get angry or aggressive? What if the human per sonality could be altered at conception by eliminating the genes thought to be responsible for anger or aggression? Do we have the right to do it? And what about having people select the sex of their child in advance, so that couples who already have two girls can request a boy next, or vice versa? Will society be better off when genetic research allows us to manipulate human reproductive cells in such a way as to readily accommodate these wishes of couples? Gaze into the decade ahead and you will see that the worlds of science and medicine are developing some surpris ing new capabilities. Closely connected to these capabilities, however, are important questions — ethical questions. Genetic research is an intriguing area of current scientific investigation. Among other things, it offers hope for the treatment of inherited diseases. During a recent meeting of a study group whose members include scien tists and theologians, one scientist outlined new developments in this field. •Genetic research is identifying the gene^ responsible for inherited illnesses. •Mqre than 4,000 human diseases result’from the failure of human genes to function in a normal manner. •At'present, more than 164 of these diseases or abnormalities have been associated with a specific gene or chromosome. Gene-splicing therapy, enabling healthy genes to be substituted for defective or non-functioning genes, is under study. And while successful therapy for genetic defects seems to lie in the future, the ability to identify the gene associated with an inherited disease will allow for earlier diagnosis and better treatment. But in the process of developing genetic therapies for inherited diseases, ethical issues will arise. For example, who will “own” this therapy? Will the family whose child has cystic fibrosis be required to pay many thousands of dollars to seek a cure? Pharmaceutical companies demand high prices for drugs like AZT and pen- tamadine, which alleviate and delay the effects of AIDS. Will the same situa tion arise with genetic therapy? Another question concerns the research preceding the development of therapeutic procedures. The church has spoken in no uncertain terms against embryo research which does not benefit the tiny human person upon whom it is performed. Will embryos be used in research aimed at genetic engineering? Again, if children are the subjects of research, how will we define and decide upon the risks to which their parents may subject them? We must contend with these kinds of serious ethical issues. Still, genetic research is basically welcome because of the benefits it holds. Nonetheless, genetic research may lead to developments which are not so welcome, like choosing the sex of a baby or altering a human personality by eliminating certain genes at conception. Who will decide which direction to take? At present much of society seems to look to the government for decisions in matters like genetic research. The government passes the responsibility on to scientists, who may have vested interests in the research. Some scien tists may argue pragmatically that the future good resulting from the research will far outweigh the harm to individuals now. Experience demonstrates, however, that when pragmatic reasoning directs our ethical thinking, human suffering results and we are left on a slippery slope. The case of Nancy Beth Cruzan has served to highlight another medical- ethical issue we face today. She became the subject of a case recently brought before the U.S. Supreme Court. Suffering severe injury to her cerebral cortex in an automobile acci dent seven years ago, she no longer could chew and swallow in a normal manner. A surgically implanted feeding tube became her means of nourishment. Because doctors offered no hope that Ms. Cruzan ever would recover con sciousness, her parents asked that the feeding tube be withdrawn, believing it was not beneficial therapy for her. The Missouri Supreme Court had maintained that the tube could not be removed because to do so would directly cause death. There was also the Linares case in Chicago, in which a father held off hospital personnel with a 357 magnum revolver as he disconnected his brain damaged infant son’s life-support systems. Medical personnel said they would not remove the life support unless ordered to do so by a court. Is it possible to overtreat patients like Ms. Cruzan and Baby Linares? Or is the use of a feeding tube in such cases simply basic care? Those are significant ethical ques tions. But another question concerns the tendency to refer health-care questions to the legal forum. Catholic teaching on the stewardship of life implies that individuals, not courts, are responsible for health-care decisions. If the individual is incompe tent, then a loved one, a family member or friend, decides what the patient would have wanted, often in consulta tion with spiritual advisers and medical personnel. The question, in other words, is who decides, and how. How should life-and- death decisions be made for you or for someone in your family in the hospital rooms of the 1990s? It is a complex issue that you can expect to hear much more about in the new era that is just beginning. (Father O’Rourke is director of the Center for Health Care Ethics at St. Louis University Medical Center.) FAITH IN THE MARKETPLACE As you look into the world of the 1990s with its rapid changes, what difficult ethical decisions might you face? If How will we cover the cost of modern miracle medicine — like heart transplants, kidney trans plants or even long-term kidney dialysis — and make it available in a just way to those who need it?” — Ron Cueni, Willoughby, Ohio. If As a lawyer, I know there will be more cases where families are try ing to make health care decisions for patients who are terminally ill or brain injured.... As a mother, I’ll be trying to help our young daugh ter develop a sense of values that will enable her to tackle the com plex ethical issues of the future.” —Susan Kirk Ryan, Wilmington, Del. cr One particularly difficult problem is how parents should relate to adult children with different value systems.... Should parents con tinue to accept their adult child rens’ behavior no matter how far removed it becomes from the parents’ own moral positions?” — Carla Overbeck, Richardson, Texas. 1C I think we could face a situation that’s gruesome, where the state could even get involved, perhaps a committee of citizens, some disinterested party determining whether you are going to continue living after you reach the age of 70 or 75 or 80, and you are no longer a productive member of society.” —Margaret Gillett, Dallas, Texas. An upcoming edition asks: How does the Gospel message on money apply to people like you? If you’d like to respond for possible publication, write: Faith Alive! 3211 Fourth St. N.E., Washington, D.C. 20017-1100. CNS illustration by Mark Williams.
