Genetic screening: law to keep labels off genes

In mid-September 1990, Congressman John Conyers of Michigan introduced a bill which would protect the individual's right to privacy about his or her own genetic information. Much of the concern stems from the possibility that detection of an abnormality on a genetic test might result in discrimination against the individual. Such discrimination has already occurred in some cases. People carrying a single copy of the sickle-cell anemia gene have been refused employment based on the mistaken belief that they are susceptible to the disease. Similar discrimination has occurred against individuals carrying the gene for Gaucher disease, a disorder of lipid metabolism. There is a very real concern that the public, and the people who are making employment decisions, are not able to properly evaluate genetic information. Persons without medical training may fail to realize that some genetic defects are not particularly severe, and that if an individual has such an abnormality it has no real relevance to decisions about employment, insurance, or adoption. Debate on the bill introduced by Conyers will begin in the Spring of 1991. (Consumer Summary produced by Reliance Medical Information, Inc.)