Simple blood tests have been developed in recent years that use genetic markers to identify hereditary leanings toward certain diseases. The tests give valuable early warnings but also are a potential source of discrimination, providing reasons for denial of employment or insurance coverage. Proposed federal legislation would go far toward blocking that threat.
Though some diseases for which genetic markers are known can't yet be prevented or cured, the medical value of the testing is not at issue. For instance, individuals with known colon cancer genes can take medication to prevent polyps from forming, and women with breast cancer genes (a factor in an estimated 5% of such cancers) can have earlier, more frequent mammograms.
While new genetic tests are swiftly coming on the market, however, studies show that many Americans avoid them out of a justified fear of discrimination. Only one federal law explicitly prohibits health insurers from so-called genetic discrimination, and it is riddled with loopholes, offering limited protection to workers in group plans but none to individual buyers. California forbids using genetic information for insurance rate setting and policy exclusion, but the law doesn't cover a large proportion of the state's work force, employees at big companies that "self-insure," meaning they design their own health benefits under managed care plans. Federal law largely exempts such companies from state health insurance laws.
There are also too few protections for the overall privacy of medical records, and this has led to cases like the Maryland banker who obtained a list of local cancer patients, cross-referenced it with loan customers at his bank and then called in their loans.
Situations like this offer reason to welcome President Clinton's decision last week to back proposed legislation prohibiting health insurers from demanding genetic tests as a condition of coverage and from denying coverage based on genetic information. Clinton also requested an amendment to bar the unauthorized disclosure of a patient's genetic information to insurers, employers and others.
The bills do not cover every problem but they're a start. America's free-market approach to health care will not work unless genetic discrimination--like prejudice based on race, gender or ethnicity--is recognized as a civil rights violation.
After all, as Francis Collins, the director of the Human Genome Project, says, "Most of us didn't get to pick our genes."