Amid genetic discoveries, a nod to privacy

It' s just a hunch, but a strong hunch.

Terri Seargent can think of no reason why she would suddenly be fired except that her employer found out about her genetic condition - and the $3,000 monthly treatment bill that went with it.

Her record as a manager for Hanover Excess and Surplus, a small insurance broker in Wilmington, N.C., was stellar. But just five days before Christmas the company' s president, with tears in his eyes, told her her job was being eliminated.

"I'm sure that the insurance company walked in with the bill for next year. They probably clipped him for double what I make, and he can't afford me," says Ms. Seargent, who began lifelong treatments for a gene-related disease last fall.

This mother of two, who says she feels fine now, has suddenly found herself in the twilight zone of the genetic age, where perceived benefits of DNA research, as well as its dangers, intertwine like a double helix.

The paradox of erosion of bedrock American values of privacy and equality as the flip side to the promise of the information age increasingly concerns lawmakers, and President Clinton.

As a preemptive strike in this area, Mr. Clinton on Tuesday signed an executive order prohibiting the federal government - the nation's largest employer - from using genetic information in hiring or promotion decisions for its 2.8 million civilian employees.

"First and foremost, we must protect our citizens' privacy - the bulwark of personal liberty, the safeguard of individual creativity," the president said.

Mr. Clinton said the order should serve as an example to private industry. He also used the occasion to support legislation sponsored by Democrats in Congress that would ban genetic discrimination in private industry, including health insurance.

What troubles these politicians is the potential for the misuse of a person's genetic details - information increasingly collected from newborns, and in tissue, cell, biopsy, and blood analysis.

While only a handful of tests for genetic diseases exists now, that number is sure to skyrocket once scientists finish deciphering the human genome - 90 percent of which will be done by this April.

In the medical community, the hope is that when the genome project (the mapping and deciphering of the genetic code) is finished, scientists will be able to identify more genes associated with diseases, and develop antidotes for them. Patients will be able to test for a much wider variety of genetic disorders, and presumably take preventive measures early on.

People might avoid tests

But the dark side to this whole development is what happens with the information about a person's genetic makeup. Will employers use this information to take someone off the long-term management track, for instance, or will life insurance companies use it to deny coverage?

Most important, in the view of scientists, will Americans - fearful of the consequences of testing - avoid genetic screening that could potentially help them?

Studies show some evidence of this already, though it' s mostly anecdotal.

A 1997 study by the National Center for Genome Resources found that 63 percent of people would not take genetic tests if employers could access the results.

"There's a lot of fear out there. When we tried to recruit people to be spokespersons (on this issue), we ran into it. They're fearful that their information will get into the hands of potential employers," says Cathy Yarbrough, spokesperson for the National Human Genome Research Institute, at the National Institutes of Health. Other research shows that some of these fears appear to be well-founded.

A 1996 study published in Science magazine, found that 15 percent of individuals believed to be at risk of developing a genetic condition said they had been asked questions about genetic diseases on job applications.

Thirteen percent said they or another family member had been denied a job or fired because of a genetic condition.

So far, however, most genetic discrimination surfaces in health insurance - with insurance either denied, or rates increased, says Paul Billings, a director of the Council For Responsible Genetics. Mr. Billings has completed the nation's largest study of genetic discrimination, examining a total of 500 cases.

Some states have laws

Dean Rosen, general counsel for the Health Insurance Association of America, says he sees no signs of genetic discrimination in his industry.

"It's not a problem in terms of anything I've ever seen, though it's clearly an issue in terms of people's fears," he says.

The concern has been widespread enough to prompt genetic-privacy laws relating to health insurance in 39 states, and similar laws on employment practices in 15 states. Five states - Massachusetts, Michigan, Mississippi, Utah, and Washington - have no laws relating to genetic privacy.

It's this patchwork of state laws, and concern for the avalanche of genetic testing ahead, that has Democrats in Congress trying to move federal legislation - so far, without success.

(c) Copyright 2000. The Christian Science Publishing Society