The Genetic Non-Discrimination Act (GINA) comes into full effect this Saturday, November 21st. Employers need to take note, and employees should be aware of their rights.
Congress passed GINA almost unanimously, and President Bush signed it on May 21, 2008. Described by the late Senator Ted Kennedy as "the first civil rights bill of the new century of the life sciences," GINA protects individuals from genetic information discrimination in health insurance and employment. A detailed description can be found here.
Even some well-informed commentators seem to have missed this landmark piece of legislation. So have some employers. The University of Akron (UA), for example, adopted a policy as recently as August that could require any candidate for employment to submit a DNA sample:
"Applicants will be asked to submit fingerprints and at the discretion of The University of Akron may be asked to submit a DNA sample for the purpose of a federal criminal background check."
In late October, alerted by a concerned employee, a CBS blog wrote about the case at length, and from there it made it to Andrew Sullivan's Daily Dish, Inside Higher Ed and even Nature, among others. Clearly the idea of employers testing for DNA hit a nerve, and that's part of what GINA addresses:
"It shall be an unlawful employment practice for an employer to request, require, or purchase genetic information with respect to an employee ..."
UA, however, seemed to think that GINA only applies to health insurers. Much of the legislation does focus on that, but the language is unequivocal, as Jeremy Gruber of the Council of Responsible Genetics stressed:
"It does not draw a distinction about how the DNA sample could be or should be used. There is no exception under GINA for employers in this context at all."
Regrettably, UA's first reaction was defensive:
"The only reason the university has included this in the criminal background check policy is because the university feels that in the future, that's the way technology is going. The university wants to be on the beating edge. It wants to be prepared."
Also:
"Nobody has to submit to [a background check]; you're always free to try to find other employment."
Fortunately, UA has rethought its language. Revised guidelines, expected to be approved on Friday, read:
"The candidate may be required by the law enforcement agency to provide additional information which is needed by the law enforcement agency for the purposes of conducting the criminal background check."
In a sense, that's passing the buck: The controversy over criminal DNA databases is heating up. But at least it brings UA in compliance with GINA.
Public policy on genetic privacy is just beginning to be defined legally, with appropriate limits. Civil rights activists, libertarians, and many others of all political persuasions are expressing concern about possible abuse of DNA data.
Some of these abuses have already happened. Back in 2000, for example, the Burlington Northern and Santa Fe Railway Company took DNA samples from employees without their permission; they wanted to screen out people who might develop carpal-tunnel syndrome. A lawsuit was settled for $2.2 million, though the company denies having broken the law as it then was.
In addition to privacy concerns, the value of genetic tests is a major issue. "The preponderance of carpal-tunnel symptoms actually does not have a genetic basis," commented one expert. In virtually every case, tests offer at best an indication that an individual might be at somewhat higher, or lower, risk for a particular disease. This can be useful information, medically, but it's a long way from predicting with certainty how a person's life will develop.
Meanwhile, the Federal government has taken a significant step in the direction of curbing abuse. That's a good start.
