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DISCOVERY OF A CANCER GENE COULD LEAD TO DISCRIMINATION

The announcement of the discovery of the gene responsible for inherited breast and ovarian cancer poses broad questions: Will the discovery be used to benefit society, or could it have adverse and unpredictable consequences?

The past few years have seen the isolation of genes responsible for common hereditary diseases such as cystic fibrosis, Huntington's disease and fragile X syndrome, a form of mental retardation.With each new discovery, the potential uses and abuses of these genetic tests have become clearer.

It will now be possible to tell a woman whose mother and grandmother had breast cancer whether she is carrying the same genetic abnormality, enabling her to make a more informed decision about preventive options.

This same information, given to an insurance company, could mean the loss of medical coverage since it would constitute evidence of a pre-existing condition.

Discrimination based on a hereditary cancer risk is not a theoretical concern. Right now there are no guidelines to protect the privacy of individuals who decide to get a genetic test to determine their cancer risk.

A 1993 survey by a medical ethicist of insurance commissioners from 32 states showed that 44 percent felt that a family history of breast cancer would be an acceptable reason to deny coverage.

Montana outlawed such discrimination by life insurance companies in 1991, and other states are considering similar legislation. What is clearly needed are federal regulations to protect anyone who could be unfairly denied medical coverage because her genes made her a high risk.

Such regulations - part of the original Clinton health-care plan - should be included in any scaled-down health-care legislation that Congress considers.

Even informing a woman that she has an 85 percent chance of developing breast cancer may not necessarily have a clear medical benefit.

A 1992 study by Memorial Sloan-Kettering and the Strang Cancer Prevention Center showed that because of anxiety over their risk of developing cancer, many women were less willing to perform breast self-examinations.