The draft map of the human genetic code promises great progress in medicine and science. But it also could create consumer nightmares as people are denied jobs, credit and insurance.
America's pitifully weak privacy laws permit widespread dissemination of the most intimate details about a person, possibly including, in the future, any risk of genetic disease.
The law is behind science terribly. The answer is not to shut down research. It's for Congress and state legislatures, including Colorado's, to enact meaningful privacy laws.
Already, genetic science has brought tremendous medical progress, and could offer more, as genetic markers for serious illnesses are identified and treatments developed.
But the discoveries could cause headaches. No federal law bars employers from refusing to hire or deciding to fire employees with genetic risks. No national law prevents employers from snooping into employees' genetic profiles. In the future, people's most personal information may be used against them without their consent or knowledge.
Health insurers also will covet customers' genetic data. Thirty-two states have laws barring discrimination based on genetic information in individual health insurance policies, including Colorado. But 28 states do not, and no federal law fills in the gap.
Moreover, Congress recently let banks merge with other financial companies, and enabled different arms of the same companies to share customer information. The alarming invasion expanded the industry's marketing power - that is, to bury you in more junk mail and e-mail spam.
But it also means that your health insurance company could share your medical records with your bank. That's right. In America, a bank officer might look at your most personal medical information when deciding whether to issue a credit card or home loan. Now think what those same financial conglomerates would do with a customer's genetic profile.
Future genetic medical treatments also could worsen the chasm in the quality of health care between rich and poor. Today, cancer patients sometimes can't get the latest, most effective treatment programs, not because the medicines aren't available, but because their HMO won't pay for them.
So when gene therapies come on the market, they're likely to be marketed to the rich, and denied to the working and middle class.
These immediate policy worries are in addition to the many moral conundrums about humanity's new ability to tinker with our very genetic core. None of these concerns is a reason to stop genome research. The work being conducted, including the contributions of University of Colorado scientists to the genetic mapping technique, could prove as valuable to humanity as the discovery of antibiotics and surgery painkillers were in past generations.
But citizens should demand that Congress and their state legislatures protect the most fundamental of human rights: privacy.
Copyright 2000 The Denver Post
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