Specifics of a federal law are still being finalized that would protect people from having genetic information used against them by health insurance companies and in the workplace.

The protections the law attempts to provide, however, are already in effect.

According to the Huntington's Disease Society of America, the Interim Final Rules of the health insurance portion of the Genetic Information Non-Discrimination Act (GINA) became effective on Dec. 7. Public comments on the rules were collected and will be reviewed, after which final rules will be issued. The rules are intended to protect people from insurers obtaining genetic information or using such information to determine eligibility or premiums.

Additionally, the Department of Health and Human Services proposed modifying the Health Insurance Portability

Act of 1996 (HIPAA) Privacy Rule to explicitly state that genetic information is health information that is protected by HIPAA. According to the HHS, genetic information had previously been covered by HIPAA, but GINA requires the protection be stated more explicitly.

What does all this mean? The HDSA says if you are considering getting tested and have the option of waiting, you may want to do so in order to see how insurance companies, employers, courts and government agencies interpret GINA.

Cheryl Erwin, JD, Ph.D., professor at the John P. McGovern Center for Health, Humanities and the Human Spirit at the University of Texas, explains that if someone were genetically discriminated against before GINA's rules and regulations were finalized, he or she would still have a legal claim. How the claim was handled would depend on the facts and the specifics of the final regulations.

GINA provides some protection against genetic discrimination, but it is not comprehensive, Erwin says. In an article published in Genetics in Medicine, Erwin writes GINA does not protect against discrimination relating to life insurance, disability insurance or long-term care insurance.¹ Additionally, insurance companies may determine it is more cost effective to violate GINA and pay the up to $500,000 fine rather than comply and pay for insurance costs, Erwin says.

On the employment side, there are still ways an employer can obtain an employee's genetic information, such as if the employee voluntarily provides information because of a wellness program or coercion. Once the information is known, Erwin says, some employers might use the information to discriminate. Furthermore, bringing a claim against an employer is expensive, time consuming and can be seen as disrupting the workplace or overreaching one's position.

"It's wonderful to have GINA," Erwin said. "But it's not a magic bullet that is going to cure all instances of genetic discrimination.

"I don't want to discourage people from getting tested or make them cynical about the law. The law is what it is and does the best it can do. It's a huge step forward, but it's not a cure-all."

When considering getting tested for Huntington disease, Erwin says individuals should deeply consider their own personal circumstances, not just the legal recourse available to them if they are discriminated against.

"Getting tested is not a legal decision," Erwin said. "It's a life decision and a medical decision. It's great that we now have some protection against genetic discrimination, but the decision to get tested needs to be based more on your personal needs and family needs."

¹ Erwin C. Legal update: living with the Genetic Information Nondiscrimination Act. Genet Med. Dec 2008;10(12):869-873.