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Ethics and the genome: a future of promise, peril By Father Thomas Nairn, OFM Last month, in a press conference conducted on both sides of the Atlantic, President Clinton and Prime Minister Tony Blair, along with scientists from both governments and private industry, announced the mapping of the human genome, that sequence of four chemical bases comprising over three billion entries in our 46 chromosomes which provides the instructions for the genetic make up of a human being. President Clinton remarked that “without a doubt, this is the most important, most wondrous map ever produced by humankind.” Like any other map, the genome gives people knowledge and direction. Yet along with such important knowledge also come ethical questions regarding how such knowledge will be used and who will benefit from it. Resulting from this work of mapping the human genome have been attempts to patent fragments of human DNA strands, called “expressed sequence tags,” in the hope of benefiting if these fragments are later found to have commercial use. The U.S. Patent Office has already issued over 1,000 such patents. Patenting human DNA, however, raises several ethical concerns. In October 1999, for example, the Pontifical Academy of Life suggested that because of the dignity of the human being, our genetic code should simply never be patented. Other ethicists, while acknowledging the inevitability of such patenting, suggest that a too liberal patenting policy may prove detrimental to developing needed medicines by unnecessarily increasing the cost through payment of royalties to those who mapped a particular fragment but played no other role in developing the medicine. As the discussion of patenting suggests, knowledge arising from the mapping of the genome will have consequences for genetic testing and genetic medicine. Current methods of gene testing are costly, looking for only one gene mutation at a time. Usually such testing is done only if some other factor indicates a probability of such a mutation. As a result of the work on the genome, however, researchers are already developing the “gene chip,” a technology that will be able to yield data for thousands of genes in a single test. While such a test will give us vastly more knowledge of our genetic makeup at a relatively low cost, it again raises ethical questions regarding the ways we—as individuals and as a society—will handle such information. These questions range from those dealing with privacy and confidentiality to those regarding how one ought to use the knowledge that one has a predisposition to a serious genetic disease, especially if that disease currently has no cure. These issues also lead to a more philosophical question, that of genetic determinism. As we learn more and more about the genome, there can be a tendency to reduce diseases to their genetic bases: to have a particular gene become equivalent to having the disease itself rather than having a predisposition to the disease. Such thinking can affect how we understand sickness and determine who among us are seen as sick or healthy. This can become a problem, for example, when we try to determine the meaning of the term “pre-existing illness.” Such genetic reductionism, however, becomes even more problematic as our knowledge moves beyond genetic disease to areas of investigation such as intelligence or the propensity to violence. Genetic reductionism in these areas can have devastating social consequences. The mapping of the genome indeed has ushered in a new “genetic” age that will be beneficial to many people. Yet, such knowledge and its ability to affect lives on such a basic level also mean that such discoveries should constantly be reviewed with ethical scrutiny. Nairn, a Franciscan, is associate professor of Christian Ethics
at Catholic Theological Union.
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