This highly publicized genetic diagnosis of a common disease forced the realization that everybody may be a test away from having a preexisting condition. No longer is genetic testing limited to rare diseases that affect small populations (Huntington's chorea) or diseases that affect specific racial or ethnic groups (sickle cell anemia and Tay Sachs disease). The Human Genome Project (HGP) at the National Institutes of Health (NIH) has nearly completed mapping the human genome, and almost every week another mutation linked to a type of cancer, heart disease, or other condition is identified. Investigators indicate that soon the DNA base pairs that determine an independent personality, or possibly an addiction, will be identified (Orkin and Motulsky, 1995). This new frontier of scientific knowledge has grown to a point where everyone is vulnerable.

Not only do people wonder what predictions could be made from the personal genome, but they also wonder who else will have access to the information. In this age of computers, information is a commodity. Vital statistics, be they financial, academic or health related, seem to be little more than datum points that can be entered into any number of banks. Is any of it confidential? Should it be? Who owns it? Who has the right to access it?

At the same time, the Kassebaum-Kennedy bill, which addressed the portability of insurance coverage and exclusion from coverage on the basis of preexisting conditions, focused attention on the reality of insurance discrimination. The fact that the Kassebaum-Kennedy bill specifically disallowed exclusion from coverage on the basis of genetic information highlighted the concept that genetic information may be equivalent to a preexisting condition. The possibility of stigmatization or discrimination is now a concern for the entire population.

Lobbying activity for the Kassebaum-Kennedy bill also provided numerous opportunities for the public airing of the ever powerful anecdote (Billings, 1993; Hudson et al., 1995).

  • A woman who is pregnant with a child diagnosed with cystic fibrosis is told that if she carries her child to term, her insurance

The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement