Health Care

In health care, genetic testing presents several ethical challenges. Legislation is in place or is being developed to limit access to genetic information, so that employers or insurers cannot discriminate against individuals because of their genotypes. Testing for a genetic disease presents a complication not seen in other types of illnesses, because the diagnosis of one individual immediately reveals the risk that other family members may be affected, based on the rules of inheritance. For example, a young woman learned that she is a carrier of Wiskott-Aldrich syndrome, which causes severe immune deficiency that is lethal in childhood. Because the mutant gene is carried on the X chromosome, each of her sons faces a 50 percent chance of inheriting the illness. Knowing that the same would be true for other carriers in her family, the young woman chose to inform all of her relatives who might also carry the gene. The decision of whether or not to be tested rests with the individuals.

Another ethical dilemma in health care that arises from biotechnology is cost and access to new treatments. Such drugs as tissue plasminogen activator, used to break up clots that cause heart attacks and strokes, and ery-thropoietin and colony-stimulating factors, used to restore blood supplies in cancer patients being treated with chemotherapy, are extremely expensive. Although insurers often cover the costs in the United States, people in many other nations cannot take advantage of these drugs.

Because biotechnology is a rapidly evolving field, experiments and clinical trials are ongoing. Participation in a clinical trial of a recombinant DNA-derived drug, or of a gene therapy, requires informed consent. A case in 1999 provoked reevaluation of the care with which such participants are screened, and of the adequacy of informed consent protocols. Jesse Gelsinger was 19 when he received experimental gene therapy to treat ornithine tran-scarbamylase deficiency. In this disorder, lack of an enzyme that metabolizes protein leads to buildup of ammonia, which damages the brain. Most affected individuals die within days of birth, but survivors can usually control symptoms with diet and drugs, as Jesse had been doing. This is why his death five days after receiving the gene therapy was especially tragic. An underlying and undetected medical condition may have contributed to his death.

Medication usually controlled Gelsinger's condition, but he chose to join the clinical trial so that he might help babies who died of a more severe form of the illness. Although Gelsinger clearly stated that he realized he might die, questions arose about the extent of his knowledge, largely because he had been healthy. This issue does not arise in the more common situation in which a participant in a gene therapy trial has exhausted conventional treatments, because he or she has little to lose at that point. Clinical trials of gene therapy are now conducted with much greater care.

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