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Genetic testing in spotlight

Lawmakers may revive privacy bill

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Legislation that would limit who could find out what illnesses might be lurking in your genes is being considered again.

The Legislature's Health and Human Services Interim Committee hasn't taken any action, but lawmakers on the panel are requesting testimony and information from genetics and health care experts.

A bill that would protect the privacy of people undergoing genetic tests failed during the 1999 Legislature. Under that bill, information that indicates someone is predisposed to breast or other cancers, for example, would be available to physicians and medical researchers but would not be accessible to insurance companies that might cite the cancer risk as a reason to refuse, reduce or cancel coverage.

The bill's sponsor, former Rep. Nora N. Stephens, R-Sunset, said a bill is needed that would prohibit, except in certain situations, insurance companies from even asking individuals if they have been tested or have obtained the test results.

A law is necessary now, she said, because scientists are rapidly creating tests that disclose whether healthy people have genetic mutations that signal they are at increased risk of developing cancer or other illnesses.

Such tests are becoming routine, she added, and laboratories around the country are testing hundreds of patients. The question is how private the test results are kept and whether insurance companies or employers can force people to get tested and use the results against them.

At least 16 states have already passed genetic privacy acts, and at least 68 such bills have been introduced in 28 state legislatures.

Christine Miller, certified genetic counselor at the Huntsman Cancer Institute at the University of Utah, said the 30,000 genes in each cell reveal a lot of personal information about a person. The fear is out there and probably justified, she said, citing a 1996 survey by Genetic Alliance, which represents more than 300 support groups for individuals and families with known genetic conditions. The survey determined that 13 percent of its members or their relatives had been denied jobs or dismissed because of genetic conditions in their families.

A 1998 study by the National Center for Genome Resources found 63 percent of those who responded would be inclined to forgo genetic tests if results were accessible to employers or insurers.

Just because a person is shown to have a predisposition does not necessarily mean they will get a disease, Miller said. A lot of other factors come into play, but some employers may discriminate against workers "even in cases in which workers are healthy and unlikely to develop disease or where the genetic condition has no effect on the ability to perform work."

Insurers can still require individuals to take genetic tests, but Chris Purcell, State Farm Insurance, told interim committee members that his company neither asks for them nor bars applicants from coverage if they have been tested.

"People can volunteer medical records for our review, and if (genetic information) is in there, we want to use it," he said.

Rep. Becky Lockhart, R-Provo, said the privacy issue raises a larger debate over whether medical insurance is a right. "That is a philosophical question we have to answer."

E-mail: jthalman@desnews.com