Profound Rights Questions Presented by Genetic Testing


The debate over genetic testing will involve profound questions about the boundaries between the rights of individuals and the rights of employers and insurers. The manner in which society answers these questions, experts say, will rival in significance earlier challenges in the civil rights and workers’ rights arenas.

The parallel is apt. Some of the earliest documented cases of discriminatory genetic screening relate to sickle-cell anemia, an inherited blood disease that affects blacks almost exclusively.

This potentially fatal disease results from a single gene defect that causes a deformation of oxygen-carrying red blood cells. It became the object of widespread screening in the United States in the early 1970s, partly in response to demands by the black community for better health care.


Almost immediately, however, observers recognized in the programs a double-edged sword, with evidence that some employers might be using test results to discriminate against blacks. Even “carriers” of the disease--those whose chromosomes contain only one of two possible genes for the disease and who generally show no ill effects--were sometimes denied jobs as airline pilots, deferred from some branches of the armed forces and saddled with higher insurance premiums.

Several states have since passed laws against the misuse of sickle-cell screening. But those early cases put minorities on notice that genetic testing has more than therapeutic possibilities. And now, with the genes for other diseases and medical predispositions coming into focus, every individual becomes, in a sense, a minority member with particular odds of suffering a particular medical fate.