Seldom has legislation with more far-reaching implications been passed than the Genetic Information Nondiscrimination Act (GINA).
Before GINA, many of us didn't take advantage of genetic testing that could help diagnose disease and determine advance response to treatment -- and not because we didn't know it was an option or because our health insurance wouldn't cover the tests. Rather, we feared the very real danger of "health insurance discrimination" once the results were revealed.
Human genome research has implications for the health of every person on the planet. Each of us has dozens of genetic variations that may put us at risk for disease. GINA provides protection against the misuse of genetic information, and yet, since its enactment, has continued to cause confusion.
The U.S. Equal Employment Opportunity Commission (EEOC) issued final regulations recently which include clarifications and refinements to the Act. The final regulations "reflect the concerted effort by all Commissioners to ensure that workers, job applicants and employers will have clear guidance concerning the implementation of this new law," said EEOC Chair Jacqueline A. Berrien.
Here is what employers and their employees really need to know as they sort through the latest changes in GINA:
GINA continues to prohibit employers of 15 or more employees from discriminating against employees and applicants on the basis of genetic information about them, or their family members. Genetic information includes family medical history, the results of an individual or family member's genetic tests (fetuses and embryos apply as well), and even confirmation that genetic services have been sought or received.
After that, the regulations get a little more complicated. For example, it is acceptable for an employer to offer a financial incentive to participate in a wellness program with a genetic component as long as it is clearly stated that the questions about family medical history or other genetic information need not be answered in order to participate. The employees also must provide written authorization in advance.
For employers, a main cause for concern in complying with GINA, since it was originally passed in 2008, has been the risk of inadvertently receiving genetic information when an employee voluntarily or accidentally reveals it. A female employee requesting a leave of absence to be treated for breast cancer, for example, may mention that her family members also have struggled with the same cancer. In most instances, an employer should not be faulted if an employee discloses this information without being asked. However, employers can face liability for obtaining inadvertent knowledge in requests for medical information.
These requests occur when an employer needs medical certification for a leave of absence or to provide reasonable accommodations for disabled employees. Including a warning in these requests about not divulging genetic information, helps to protects employers, who also are protected from casual conversation among co-workers by the so-called the "water cooler" rule ("How are you?" or "Did they catch it early?" asked of an employee diagnosed with cancer). The company should not ask probing follow-up questions to these types of statements.
It's important that all of us be sensitized to the privacy issues surrounding medical conditions and genetic information. Written policies on display at work should reflect the current status of the law.
Related Stories from CNN Money