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Byline: Robert S. Boyd Knight-Ridder Tribune News Wire

The extraordinary progress in human genetics research is turning out to have a dark side - the growing danger of employment and insurance discrimination against people with a flaw in their own or a relative's genes.

A new survey of 332 people in families at risk for a genetic disease, such as cystic fibrosis or sickle cell anemia, found that 43 percent of them believe they have been treated unfairly by insurance companies or employers.

For example, a woman with an inherited skeletal disorder said she was fired the day after she told her boss about her diagnosis. Her job was restored after she sought legal help.

A father of four said his family was denied life insurance after he told the salesman he and two of his children were afflicted with Marfan's syndrome, a rare genetic disease which sometimes leads to a rupture of the aorta.

``For many people with inherited disorders, health insurance may mean the difference between life and death,'' said Virginia Lapham of the Georgetown University Child Development Center, principal author of the study published in this week's Science magazine.

Although the survey was not a scientific sample, it appears to confirm long-held fears about the side effects of genetic research.

For a few years in the 1970s, for example, insurance companies denied coverage to people who carried the gene for sickle cell anemia, even though they were perfectly healthy and might never develop the disease.

``The fear of genetic discrimination in health insurance is a reality,'' said Karen Rothenberg, a law professor at the University of Maryland, who has studied the issue in several states.

The problem is bound to grow more serious as the pace of genetic research accelerates. This week, scientists published a rough map of 16,000 human genes, about one fifth of the entire set in each person's body. They expect to decipher the rest by 2005.

``New disease genes are discovered almost weekly,'' Dr. Francis Collins, director of the National Center for Human Genome Research, told a congressional hearing last month. ``Once a disease gene is identified, it is often only a matter of months before a diagnostic test can be made available.''

That's the good news. But Collins went on to say that ``predictive genetic testing of healthy individuals raises many questions about benefits and risks. A particular concern is the fear of losing jobs or health insurance because of a genetic predisposition to a particular disease.''

At the hearing, Rep. Cliff Stearns, R-Fla., told of a California father who couldn't get health insurance for his children because his wife died of an inherited heart defect.

In the Georgetown University survey, 25 percent of the respondents said they believed they or a family member had been refused life insurance; 22 percent believed they were refused health insurance, and 13 percent believed they were denied or let go from a job. Some said they suffered discrimination in more than one category.

Some people said they refuse to take genetic tests, or don't inform employers or insurers about the results for fear they will be ill-treated.

Lapham said the respondents were volunteers affiliated with genetic disease support organizations, and therefore the findings apply only to this group, not to the population at large.

Nevertheless, the results are likely to add to the pressure for government regulations forbidding genetic discrimination.

The Kassebaum-Kennedy health reform bill signed by President Clinton in August forbids health insurance companies from charging higher premiums or denying coverage to healthy individuals on the basis of genetic tests.

The law has weaknesses, however. It only covers employed people who belong to group health insurance plans. It does not prevent employers from asking job applicants about genetic tests.

``It's a good first step in the right direction,'' said Martha Volner, of the Alliance of Genetic Support Groups, which provided the volunteers for the survey.

In addition, a dozen states have passed laws aimed at preventing the abuse of genetic information by insurers.
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Publication:Daily News (Los Angeles, CA)
Date:Oct 25, 1996

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