Genetic discrimination legislation on the table

Act bogged down in the House

New legislation aimed at protecting workers against genetic discrimination has passed the Senate unanimously but is currently bogged down in the House of Representatives, according to an expert in workers’ rights.

"We’re not quite sure what will happen this year," says Jeremy Gruber, an attorney who serves as the legal director for the National Workrights Institute in Princeton, NJ. "The president is on record as saying he would support and sign a genetic nondiscrimination law, but he has not gotten involved in the congressional debate."

The Genetic Information Nondiscrimination Act covers two major areas — health insurance and employment rights. "These are really the two prime areas where abuse of genetic information can occur," Gruber says. "What it would do in an employment context is prevent the acquisition of genetic information and prevent the use of genetic information. In the health insurance context, it’s a bit more complicated; it would prevent acquisition in certain circumstances, but it would certainly prevent the use in all circumstances."

Abuses already occurring

The need for such legislation is pressing, says Gruber, because "there are abuses going on now."

Two noteworthy workplace cases have resulted in legal action, he notes. "One was the Burlington Northern Railroad case," he relates. "They were collecting genetic information from employees who had filed workers’ comp [carpal tunnel] claims, with the alleged intent to use the information for purposes of claiming there was a pre-existing condition, and that they therefore would not be liable." This case was settled a couple years ago, says Gruber.

The other case, which is several years older, involves Berkeley Laboratories, a state-funded laboratory loosely affiliated with the University of California-Berkeley campus. "They were testing employees for certain specific conditions, including sickle-cell anemia," he says. This case also was settled out of court.

"Both were cases where genetic information was improperly acquired. We believe the employers were called to task before they actually used it," Gruber asserts.

There are a number of individual anecdotal cases also alleging such discrimination, and, almost more important, he notes, "is the chilling effect the lack of legislation is having on individuals’ willingness to get tested or to commit to any type of scientific research program for fear the information acquired will be used against them absent a law to the contrary." Another fear, he adds, is that since we are talking about genetic information, it is not necessarily isolated to a single individual, but could in fact be used against family members, and even future generations.

But what about existing laws, such as the Health Insurance Portability and Accountability Act (HIPAA)? Don’t the confidentiality clauses provide protection for employees in this area?

"HIPAA obviously was a first step toward this type of legislation, but this [new act] goes leaps and bounds past it," says Gruber.

One of the reasons such strong legislation is needed, he asserts, is that "the employer has a built-in incentive to discriminate against an employee who has a family member with a genetic predisposition."

Gruber notes that costs are understandably a major concern for employers, "especially with an employee who is currently healthy but [has a genetic predisposition] for which the potential cost of treatment could be quite high."

Pre-employment screenings are another opportunity for abuse, he continues. "Employers spend a lot of time and money investing in a new employee," he explains. "Under the ADA [Americans with Disabilities Act], you can ask for any type of information in a condition of employment medical exam. It’s quite easy for an employer to access that type of information right now."

The bottom line, says Gruber, is while there are a number of state laws addressing these issues — some better than others — "there is no federal law protecting against discrimination for a genetic predisposition."

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