Final GINA Regulations Now in Effect

By Sarah H. Lamar, published on February 16, 2011, in Business in Savannah.

According to the Genetic Information Nondiscrimination Act of 2008 (GINA), “experts predict that the twenty-first century will see tremendous strides in the new field of genomic medicine, bringing it into mainstream medical practice.”

As the number of genetic tests have increased, specifically for individuals testing to see if they are at risk for developing a specific disease or disorder, so do concerns of the general public about whether they may be at risk of losing access to health coverage or employment if both insurers and employers have their genetic information.

On May 21, 2008, President Bush signed into law GINA as part of a long awaited push for legislation to prohibit discrimination on the basis of genetic information with regard to health insurance and employment. The bill passed the Senate unanimously and the House by a vote of 414 to 1, with the late Senator Ted Kennedy acting as one of the largest proponents of the legislation.

In short, Title II of GINA prohibits employers with 15 or more employees from discriminating against applicants or employees based on their genetic information or the genetic information of their family members. Employers may not request, require or purchase genetic information from employees or their family members, and the law strictly limits employers from disclosing genetic information. (Title I of the Act prohibits group health plans from discriminating in premiums based on genetic information and places limitations on genetic testing).

“Genetic information” means genetic tests of an individual or family member, family medical history, participation in clinical research that includes genetic services, and genetic information of a fetus. The definition of “family member” is equally broad and includes dependents who are or become related to an individual through marriage, birth, adoption or placement for adoption and persons related to the individual from the first degree (parents, siblings, children) to the fourth degree (great-great grandparents, first cousins once removed).

In theory, the legislation is meant to protect citizens from having their genetic information misused by employers and health insurance organizations. However, concerns have been raised over whether the language of the legislation has resulted in another cause of action for disgruntled employees to take against their employers.

For example, if an employee references a family member’s diabetes around the water cooler, they could potentially assert that any adverse action taken against them by their employer after that discussion was based on the broadcast of this genetic information.

There were conflicting views on the impact of “water cooler” disclosures while awaiting the announcement of the final regulations promulgated by the Equal Employment Opportunity Commission (EEOC). These regulations were issued on November 9, 2010 and clarify many questions that employers have had about the language of the original legislation enacted in 2008, including the extent to which employers can make inquiries into an employee’s medical condition and the extent to which employers can implement wellness programs that use genetic information, among other things.

Although a general health inquiry or casual conversation about the general well-being of a parent or child (“How does your son feel today?”) would not violate GINA, follow up questions that are probing in nature (“Does anyone else have the condition in your family?”) may violate the Act.

The final GINA regulations provide model language employers may use when requesting medical information from employees to avoid inadvertently acquiring genetic information. It is strongly recommended that employers use this model language when asking for any medical information from employees, whether the request is made under the Family and Medical Leave Act or for some other legitimate reason.

Further, the regulations provide that genetic information obtained through wellness programs may be prohibited acquisition unless the employee voluntarily disclosed the information without penalty or financial inducement, after signing a written authorization, and the information is disclosed only to licensed health care professionals/counselors. Such information can only be shared with the employer in aggregate terms that do not disclose the identity of specific individuals.

GINA is similar to Title VII of the Civil Rights Act and the Americans with Disabilities Act in that an employer could be liable for actual, compensatory and punitive damages for failure to comply with the Act.

Links to the regulations and more information on GINA are posted on the EEOC’s website at http://eeoc.gov/laws/types/genetic.cfm . For further guidance, please contact a health care or employment law specialist.
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Sarah H. Lamar is a partner at HunterMaclean who practices employment law. She can be reached at slamar@huntermaclean.com or 912-236-0261.