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Genetic Testing Essay, Research Paper

Genetic Testing for Diseases

There is more than enough ethical mud in genetics of 1998 to keep physicians, lawyers, scientists and bioethicists on guard. A majority is unaware of the progress made in routine and exotic genetics, and most are caught off guard by each new technology. At the same time, in the United States most scientists receive no more than a few hours training in ethics, most physicians take no training in genetics, and it was revealed in 1997 that less than 16% of those who received a prominent genetic tests for susceptibility to cancer were counseled about the choice. The first time most families in the West learn about the practical issues in genetic testing is when a friend or relative needs a test urgently during pregnancy. To make matters worse, apart from bioethics conferences there is still virtually no common public or scientific international conversation about gene therapy, reproductive rights, or genetic patenting. You might think it is a bad time to look ahead to the next century. After all, there is more than enough work to do now: bioethics must be folded into the high school curriculum. Genetics education must be required for every physician, ethics training for every young scientist, and reproductive issues training should be given to every minister and politician. These are issues for today. With our attention focused on the technology of the month (in 1997 these included cloned sheep and monkeys, babies from frozen eggs, headless frog embryos, a 63 year-old mother, sperm from dead men, and septuplets) we seldom take the time to accomplish even these contemporary objectives. Bioethics is growing quickly but it is unlikely to catch up with science. In such a world it is difficult to spend time forecasting or critiquing future utopias.

However, if the problems of today and the need to remember historical atrocities in genetics are important, it is just as critical to plan ahead. The next 100 years will see changes more dramatic than the 20th century, which saw the creation of molecular genetics, the rise and fall of eugenics, and the creation of an U.S. and international human genome mapping effort. It is time, I believe, to use some imagination to think about what might come to be in the world of genetics in the next 100 years. Only by looking at the long-term outcomes of our current genetic research will we see the compelling need to confront the most basic questions posed by genetic medicine. And, in any event, it has not escaped the attention of this author that it is no more dangerous to exercise a little imagination about our future than it is dangerous to fail to be prescient about possible surprises, such as human cloning. One shape in the crystal ball is not difficult to discern. Some areas of genetic medicine, such as the effort to identify simple genetic etiology for complex diseases and traits, will plainly begin to fall away during the next few years. Genetic diagnosis and gene therapy will become more and more effective as partners to environmentally- and nutritionally based medicine and pharmacology. Costs of genetic services will fall precipitously just as evidence accumulates about the costs associated with having particular genes. Virtually every culture will have to cope with an unparalleled pressure to conserve social resources by applying pressure to individuals in an attempt to modify their reproductive behavior and other life choices. One very important role of bioethics is to think about how allocation of resources, crafting of laws and education of children and professionals should be used to prepare for such a future. Bioethics can be “institutional criticism,” examining how the establishment and maintenance of different institutions puts each society in a position to cope with issues in health and science. However, history is a very poor guide in this regard. Bioethics as a discipline is scarcely 40 years old, and American bioethics has grown out of reactions to big scandals, such as those chronicled at the trials in Nuremberg, Tuskegee, Henry Beecher’s study of abuses in research, Baby Doe, and xenotransplantation. Bioethics knows how to react to dolly the cloned sheep. It is not so great at predicting or laying the ground for new science or paradigm shifts in medicine. It is clear from the public reactions to Dolly and other recent scientific claims in the areas of developmental and molecular genetics, that bioethics has not done much to improve the potential for sustained conversation about genetics. The danger is that when scandals about Viagra or Prozac or cloning finally grow tiresome, the public’s uneducated fear is replaced by untutored acceptance of new technology. Without reconstruction of the institutions of society to meet new challenges, there is little chance we will be prepared for the innovations that are coming. In this essay I describe three kinds of change that seem to be approaching in the next 100 years. For each of the three waves of coming change in genetics, I have thus concentrated on the kind of institutional weakness–and thus the kind of opportunity for reform–that is present.

First, I think it is easy to imagine a world 100 years from now in which parents have much more control over the inheritance of children. Gene therapy and pre-implantation diagnosis for 6-8 cell embryos will be thoroughly assimilated into obstetrics technologies. Indeed all that remains for such technologies to be assimilated are a few technological advances. First scientists must improve the ability, and reduce the cost, of successful in vitro fertilization. Second, in vitro fertilization (IVF) must be made more intimate, more thoroughly integrated with sexual reproduction. Couples who are not infertile will be reluctant to use pre-implantation diagnosis until it is integrated, or at least not so disconsonant, with sexually initiated and

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