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Intro  |  High court challenge  |  Who should know — and how much? |  
A societal question

Who should know — and how much?

POSSIBILITIES LIKE THIS, according to Pagnattaro, are a good reason for comprehensive, federal legislation for uniform, equal treatment of genetic information. Such legislation is pending before Congress. The Genetic Privacy and Nondiscrimination Act proposes to “establish limitations with respect to the disclosure and use of genetic information.”

At issue is how much information employers or insurers should have — and what they should be allowed to do with it.

“Employees and job applicants might be tested to detect genetic predisposition to diseases that might make them less productive and more costly for health insurance purposes,” Pagnattaro said. “If insurance companies had access to your genetic information, could they use that information to assess higher premiums by calculating your mortality based on some genetic condition?”

Not everyone is enthusiastic about laws to prevent genetic discrimination. For example, Pagnatarro notes that Michael Kinsley, formerly the voice of the “left” on CNN’s Crossfire, argues that “discrimination makes perfect sense.” He contends that health insurers, in an effort to protect against unpredictable costs, want to exclude the people who are more likely to get sick from their insurance pool.

Pagnattaro also quotes social commentator Andrew Sullivan, who argues that the “point of laws against racial bias is to outlaw irrational discrimination based on irrelevant characteristics. The point of laws against genetic discrimination is to outlaw rational bias based on relevant information.”

“It’s something that ultimately will be taken into consideration,” she said. “The question is to what degree it is appropriate. It almost becomes an ethical question more than a legal one.”

For years legal and ethics experts have been debating what would happen if companies started testing employees for genetically linked illnesses. The debate was fueled last year when the Equal Employment Opportunity Commission sued Burlington Northern Santa Fe Railway for doing just that.

The workers, who suffered from the swelling and numbness associated with carpal tunnel syndrome, filed on-the-job injury claims, prompting the railroad to conduct genetic tests to see if the workers were predisposed to the condition. If a genetic link were found, the railroad then could use the evidence to deny paying medical and lost-income benefits for what traditionally is considered an on-the-job injury.

In February 2001, the EEOC filed a federal lawsuit charging that the policy violated the ADA. Although the railroad quickly stopped the screening after the EEOC filed its lawsuit and the parties recently reached a $2.2 million settlement for the 36 railway workers involved, the case raised several ethical, privacy and legal questions. The most disturbing issue, Pagnattaro said, was that the employees weren’t told about the genetic screening during the medical exams.

“It would have been an interesting test case for the courts,” she said.

“It’s a bizarre thought, but it’s really not that far off,” Pagnattaro said. “You can be aware of things to make your own choices. It shouldn’t be an employer’s position to say you can’t take this job because it might cause you to have health problems.”

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