Age, Race, Religion, Sex, Disability…and DNA
New Rules to Prevent Genetic Discrimination in the Workplace
It’s one thing for Congress to pass legislation to protect the public. It’s quite another for the various implementing agencies to hammer out regulatory language that effectively puts that legislation to work. Now, nine months after Congress passed the Genetic Information Non-Discrimination Act, known as GINA, the deadline is looming for federal agencies to release rules spelling out how they will interpret and enforce that historic legislation, which makes it illegal for insurers and employers to discriminate on the basis of people’s genetic information.
In part, at least, this process is moving apace. Today, the U.S. Equal Employment Opportunity Commission released a Proposed Rule that describes how that agency intends to implement GINA’s so-called Title II provisions, which deal with genetic discrimination in the workplace. (Title I of the Act deals with the insurance provisions—more about that in a moment.) The public will now have 60 days to offer comments on the employment rules, which EEOC will then consider before crafting final language. By statute, the process must be completed by May 21 and the law will go into effect in November.
You don’t have to be a total wonk to appreciate the groundbreaking nature of this accomplishment: We’re talking about the first significant expansion of workplace discrimination protections since 1990, when the Americans with Disabilities Act added “disability” to the list of factors—age, race, religion, and sex—that cannot be considered in hiring decisions.
Gratifyingly, not only is the EEOC’s work on track to be completed on time but the content appears to reflect virtually all of the elements that progressives had called for in their decade-long battle to get GINA passed. A major goal of the legislation was to ensure that people can take full advantage of the ever-growing power of genetic testing for predictive, diagnostic, and genealogical purposes without having to worry that the information revealed would jeopardize their ability to get or keep a job. Another incentive was that without such protections, people were likely to balk at requests to participate in genetic research, which depends on large-scale participation by diverse populations to make new biomedical discoveries about propensities to diseases and other aspects of inheritance.
CAP Senior Fellow Rick Weiss covered science and medicine for The Washington Post for 15 years, and now he brings his investigative eye to science policy. From cloning and stem cells to agricultural biotechnology and nanotechnology, Weiss examines the issues at the intersection of cutting edge research and public policy.
“We know that in the past, patients have passed up genetic testing that could benefit their health, and have gone to great lengths to keep genetic information secret—even from their own doctors,” said Susannah Baruch, who directs the law and policy program of the Genetics and Public Policy Center at Johns Hopkins University, speaking last week at an EEOC meeting. “There are many factors an individual may consider in deciding whether to take a genetic test, but the fear of discrimination must not be one of them.”
Under the language proposed by EEOC (shorter summary here), GINA would absolutely, and with no exceptions, prohibit the use of genetic information—including family medical history—in employment decisions. It would create protections for people whose genetic information falls into an employer’s hands by accident. And it would make victims of discrimination by private or government employers eligible for potentially robust remedies, including reinstatement, promotion, back pay, injunctive relief, compensatory damages and, in some cases, additional punitive damages.
Unfortunately, progress toward implementing regulatory language is not as far along for Title I of GINA—the part that aims to prevent gene-based discrimination by health insurance companies. That reflects in part the fact that oversight of this provision cuts across agency lines, so language must be agreed upon by a coalition of regulators representing the departments of Health and Human Services, Labor, and Treasury. It also reflects the reality that anything having to do with the lucrative health insurance industry—which for more than a decade argued that GINA was not needed and should not pass—is politically treacherous. And honestly, there are some tricky issues in this part of the Act.
Consider, for example, that the law generally prohibits insurers from even asking a person to reveal genetic information, including whether any diseases run in a person’s family. But what to do about the growing number of employer-sponsored “wellness programs” that try to prevent the onset of diseases by using health risk assessments? These programs typically include questions about family history and other genetic information to help design personalized plans for staying healthy. Indeed, that is pretty much the basis of how they work. It will take some elegant crafting to implement GINA without undercutting the potential value of wellness programs and other emerging aspects of personalized medicine.
The agencies working on language for Title I need to wrap up their work soon if they are going to make the May 21 deadline. They must resist the temptation to punt—by, say, implementing an interim or temporary rule, as some have quietly begun to talk about. That would only delay final implementation of GINA’s valuable protections.
GINA is an unusually forward-looking package of protections in that it prohibits a class of discrimination that has not yet become widespread. But hundreds of gene tests are now widely available for various purposes and more are being developed every month—including some that are being marketed directly to consumers with only vaguely defined firewalls to keep insurers and other interlopers at bay. If we wait much longer, GINA could go down in history not as a pioneering piece of legislation but as an important but embarrassingly late corrective akin to the Civil Rights Act, righting a wrong that was allowed to go on for too long.
Rick Weiss is a Senior Fellow at the Center for American Progress and Science Progress.
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