From Laboratories to Legislatures...

• Author: Calvo, Cheye
• Position: Laws on genetic testing

Legislating in the genomic age is harder than policymakers ever thought.

State lawmakers have been working for a decade to prevent misuse of genetic tests by health insurers and employers. Policymakers feared that businesses, trying to guard against rising health care costs, might screen out workers at higher risk of future illness. And that's what lawmakers in 28 states, beginning with Wisconsin in 1992, were trying to prevent. Forty-four states passed laws that restrict the use of genetic information by health insurers.

But the first possible misuse of genetic testing is, instead, something for which lawmakers were unprepared, even as they tried to envision all possibilities.

A recent court case involving an employer using genetic tests on employees to limit its liability for workplace injury has nothing to do with health insurance. The genetic tests were used to identify reasons for current injuries, not to predict debilitating and expensive future illnesses.

This case has recharged the genetics policy debate by re-opening questions that policymakers thought they had answered and raising new ones, revealing that legislating for the genomic age isn't as easy as they thought.

For instance, how do genetics laws interact with federal and state disability protections? What are the differences--if any--between genetic tests and other medical exams in the workplace? Where does workers' compensation fit into the picture? And can--or should--genetic testing be used to promote worker safety? Most important of all: Should job-related genetic testing be permitted or is genetic testing by employers never appropriate?

The one thing we know is that there are no easy answers--and state legislatures will be laboratories of genetics policy for many years to come.

WORKING ON THE RAILROAD

Gary Avary works for the Burlington Northern Santa Fe Railroad--federally regulated, exempt from state workers' compensation laws, operating 33,500 miles of track with more than 40,000 employees in 28 states.

When Avary filed a carpal tunnel claim as work-related, the railroad ordered him to take blood tests. Curious, his wife Janice, a nurse, asked what kind of tests. The response? Genetic tests.

Avary was one of 35 workers who turned in carpal tunnel claims and were ordered to give blood samples. The railroad told employees that laboratory testing was to determine whether the injuries were work-related. Railroad doctors drew several vials of blood from workers, but never informed them of the genetic tests.

Only Avary learned in advance and refused. Burlington Northern threatened to fire him.

What the railroad wanted was to screen for a rare genetic disorder--hereditary neuropathy with liability to pressure palsy (HNPP)--for which carpal tunnel is a symptom.

Carpal tunnel is a disorder caused by pressure on the middle nerve at the wrist and linked to repetitive motion activities, such as typing or--in Avary's case-operating heavy machinery. Under a rule issued by President Clinton, such conditions were the burden of employers and workers were guaranteed wage replacements for lost work. Hence, it would benefit the railroad to show it was genetic and not work-related.

But Congress overrode the regulation in February, so the debate over who is financially responsible persists.

In Avary's case, the Equal...