Magazine article The Christian Century

In Search of the Perfect Child: Genetic Testing and Selective Abortion

Magazine article The Christian Century

In Search of the Perfect Child: Genetic Testing and Selective Abortion

Article excerpt

The triumphs of genetic research include the discovery of disease-related genes. The gene for cystic fibrosis, for example, has been found on chromosome 7. Huntington's chorea was discovered lurking on the end of chromosome 4. Inherited breast cancer was traced to chromosome 17, early-onset Alzheimer's disease to chromosome 14 and colon cancer to chromosome 2. Disposition to muscular dystrophy, sicklecell anemia and 5,000 or more other diseases is being tracked to genetic origins. The search goes on as well for the DNA sv,,itches that turn such genes on and off, and for genetic therapies that will turn the bad genes off and keep the good genes on. Such discoveries could improve medical diagnosis, prevention and therapy, thus advancing the quality of health for everyone.

Yet this apparent good news comes as bad news to those born with genetic susceptibilities to disease, because medical care is funded bv private insurance companies and medical insurance is tied to employment. An identifiable genetic predisposition to disease counts as an existing condition, and insurance companies are beginning to deny coverage to people with existing conditions. As new techniques for prevention and therapy become available, the very people who could benefit may be denied access to them.

Paul Billings, a genetics researcher and ethicist at Stanford University Medical School, has collected anecdotal evidence of genetic discrimination. Testifying before Congress, Billings told of a woman who, during a routine physical, spoke to her physician about the possibility of her mother having Huntington's disease. Later, when the woman applied for life insurance, her medical records were reviewed and she lost all her insurance.

In another case, a 14-month-old girl was diagnosed mith phenylketonuria through a newborn screening program. A low phenvlalanine diet was prescribed, and her parents followed the diet rules. The child has grown up to be a normal and he,althx. person. Her health care at birth was covered by a group insurance policy associated with her fathers employment, but when he changed jobs the new carrier declared her ineligible for coverage. Once a genetic predisposition for an expensive disease becomes part of ones medical record, insurance carriers and employers connected to them find it in their best financial interest to minimize or deny health coverage.

In a report by the Committee on Government Operations, U.S. Representative John Conyers (D., Mich.) responded to Billings and others: "Like discrimination based on race, genetic discrimination is wrong because it is based on hereditary characteristics we are powerless to change. The fear in the minds of many people is that genetic information will be used to identify those with `weak' or `inferior' genes, who will then be treated as a `biological underclass.'"

Until recently, the federal government has been slow to respond to testimonies made on behalf of the next generation. In an effort to draw attention to the issue, researchers in the Working Group on Ethical, Legal, and Social Implications of the Human Genome Project at the National Institutes of Health and the Department of Energy created a task force that included geneticists, ethicists and representatives from the insurance industry. The central message of their 1993 report is that information about past, present or future health status - specially health status due to genetic predispositions - should not be used to deny health care coverage or services to anyone.

Some officials are listening. The Kassebaum-Kennedy health insurance reform bill passed in August prohibits categorizing a genetic predisposition as a disqualifying precondition.

Another change occurred when U.S. Marines John Mayfield and Joseph Vlacovsky refused to allow their DNA to be deposited in a Pentagon data bank. The two men were court-martialed, but later the Pentagon dropped its original plan to keep DNA information for 75S years. …

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