Ban genetic discrimination: National standard is needed

Knowledge is power, so the saying goes. But in the case of genetic testing, many people fear that the opposite is true.

As genetic testing moved from the stuff of science fiction to reality, it opened the promise of early diagnosis, prevention and even therapy to countless patients at risk of developing various diseases and conditions. But rather than feeling empowered, patients all too often feel vulnerable.

They worry that their genetic test results could be used against them by health insurers and employers. That they could be denied insurance or charged higher rates. That they could be fired from their jobs or never get hired in the first place, based on the contents of their DNA.

These patients often turn to their physicians for advice about whether it's safe to get a genetic test. But doctors are at a disadvantage, because the patchwork of state and federal laws designed to protect people from genetic discrimination is practically impossible to figure out.

A bipartisan bill that just passed unanimously in the Senate aims to solve the problem. It would set a national standard banning genetic discrimination in the workplace and in health insurance.

The measure, sponsored by Sen. Olympia Snowe (R, Maine), has the backing of President Bush, who pointed out that misuse of genetic information "raises serious moral and legal issues."

The American Medical Association, which has long-standing policy against genetic discrimination, also supports the legislation. The bill would enable and encourage patients to take advantage of genetic counseling, testing and new therapies without worrying that such information could be used against them, the AMA stated in a letter to senators.

Already, more than 1,000 genetic tests are available. And the science is continually advancing. Just last month, the National Human Genome Research Institute announced development of a new test for babies born with inherited forms of severe immune deficiency that, if undetected, typically lead to death before the child's first birthday. The test, which still must be validated before it can be broadly used, eventually could be added to the panel of tests that already screens newborns for a variety of disorders.

But without the assurances provided by the legislation, patients' fears will prevent genetic tests such as this one from reaching their full potential. How useful can a test be if many of the patients who would benefit from it are too afraid to take it?

Health insurers and businesses who oppose the legislation argue that existing state and federal laws are sufficient to protect patients. Lawmakers should not legislate based on consumer fear alone, they say.

But real people have faced real discrimination. A brochure published last year on behalf of the Coalition for Genetic Fairness, an alliance of groups that support legislation banning genetic discrimination, includes such examples. One case involves a woman whose children were denied health insurance because they carried the gene for alpha-1-antitrypsin deficiency. The company's ruling came even after medical professionals said the children would never develop the disease themselves.

The current state and federal protections that opponents of legislation point to aren't enough. The state laws vary widely. Some, for example, cover insurance discrimination but not employment discrimination. Federal laws, such as the Health Insurance Portability and Accountability Act, contain loopholes. For instance, HIPAA insurance protections don't apply to people with individual coverage.

That's why the Senate bill's uniform protections are so needed.

But the Senate's passage of the legislation is only the first step. Now the House must act. That body has a poor track record on the issue. After the Senate passed a genetic nondiscrimination measure in 2003, the House effort fizzled and the bill died. The new legislative effort must not suffer the same fate.

Patients deserve to benefit -- without fear -- from the powerful knowledge that genetic tests offer.