Genes and Financial Fears


When scientists unraveled the chemical sequences in human DNA four years ago, there was great excitement about the prospect of being able to treat people based on their genetic predisposition to disease. Today, that potential is being squandered by fear. Several recent studies have shown that Americans shun genetic testing because they fear it could be used against them by employers or insurers.

They have reason to worry. Insurers already set their rates based on such factors as a person’s sex, ethnicity and health risks. Armed with data suggesting a person is at risk of contracting a genetic disease, they could charge higher premiums, or simply refuse to insure the person. And employers could decide not to hire someone whose genetic profile showed that he or she might end up with a productivity-destroying illness.

To help avoid that, the Senate last month passed without opposition a bill by Sen. Olympia J. Snowe (R-Maine) that would prevent employment decisions or health premiums from being based on genetic testing, such as finding that a woman has the BRCA1 gene mutation that can increase her breast cancer risk. Supported by President Bush and Senate Majority Leader Bill Frist (R-Tenn.), a physician, the legislation might seem a shoo-in. Except that it isn’t.


House GOP leaders have barred their members from debating, much less voting on, the House version of the bill, even though it is cosponsored by a whopping 242 of the chamber’s 435 members.

Some insurers and employer trade groups contended that the Senate and House bills overreached. For instance, they would have exposed employers to lawsuits for simply possessing information about employees’ DNA. But both bills were revised to shield employers, making them liable only if they acted on that knowledge in discriminatory ways. They have also been narrowed, at insurers’ and employers’ requests, to only ban discrimination based on speculation about a future ailment. Neither bill would protect people who already had a genetic disease.

One purely technical problem with using genetic information for risk adjustment is that it isn’t yet reliable. As any geneticist will attest, everyone has gene segments predisposing him or her to disease. A few have been discovered, but tens of thousands have not. Society should not punish people for being unlucky enough to have the genetic risks we’ve discovered first. Of course, that unfairness will probably diminish as genes are more precisely and thoroughly mapped. That raises a deeper moral issue.

Health insurance is based on the concept of shared risk -- spreading the widely varying costs of individual healthcare across a large population. That principle would be increasingly threatened as genetic prediction improved. The unlucky would end up uninsurable and unemployable.

The House version of the anti-discrimination bill is too important to die in committee. House leaders, from Speaker J. Dennis Hastert (R-Ill.) on down, should let their members take it up.