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Sam's father died of Huntington's disease. The degenerative nerve disease began in his late forties. Developing gradually, the disease causes uncontrollable body movements, mental deterioration, and eventually, death. After his father's death, Sam, unmarried, and in his middle twenties, decided to be sterilized. He was unwilling to risk passing on such a disease to a child, even though he did not know whether he carried the gene. His chance was fifty-fifty—odds he was not willing to gamble on. A few years later Sam became aware of a genetic test that could determine whether he carried the gene that would cause him to develop Huntington's chorea. Initially, the possibility that he might have to spend his healthy years knowing that Huntington's was in his future made him reluctant to be tested. He also feared that a positive test result would condemn him to medical uninsurability for life. Finally, Sam decided to discover his fate (though he was tested under a pseudonym). When the test results came back, he breathed a sigh of relief: Huntington's disease was not in his personal future.
As we near the tum of the century, the rapidly increasingly ability to identify genetic links to serious disease and to test individuals at risk will produce more and more stories like Sam's, together with a myriad of moral concerns about the use of this new knowledge and its related technology. A sampling of ethical issues discussed in the recent literature indicates yet another frontier for Christian assessment of the uses and ends of science and technology: Would a person be acting responsibly if a decision were made without the benefit of available genetic information about the risks of serious disease or disability in yet unborn children? To whom does genetic information about you belong? Is in vitro fertilization following preimplantation genetic diagnosis a morally legitimate means for trying to avoid having a child with a genetic disorder? Should medicine concentrate on curing statistically rare genetic disorders when resources could be devoted to expanding basic preventative health care? How does our fight against disease and disability influence our attitudes toward those who are born with these very same diseases and disabilities?
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