The Genetic Information Nondiscrimination Act ("GINA") was signed by President Bush on May 21, 2008. Title I of GINA, which takes effect 12 months after enactment (or on May 21, 2009), applies to health insurers and group health insurance plans. Title II of GINA, which takes effect 18 months after enactment (or on November 21, 2009), applies to employers. This new law creates protections for individuals based on genetic information. One of GINA's primary purposes is to overcome the public's perceived widespread reluctance to participate in genetic studies based on fear that disclosing such information will have negative consequences on employment and insurability. GINA also gives rise to legal exposure for employers.
Under GINA, insurers are prohibited from basing insurance eligibility or setting premiums based on an individual's genetic information. Furthermore, insurance companies may not require genetic tests, nor may they disclose any genetic information of which they become aware. Employers of 15 or more employees may not refuse to hire, fire or otherwise discriminate against applicants or employees based on their or a family member's genetic information. In addition, employers must treat any such information as confidential in the same manner that medical information must be treated as confidential under the Americans with Disabilities Act. Employers also may not request or require applicants or employees to provide such information, and they may not retaliate against them based on the applicant's or employee's disclosing or refusing to disclose such information.
The definition of "genetic information" covers information included in genetic tests of the employee and the employee's family members, as well as the manifestation of a disease or disorder in a family member. It does not include information about sex or age.
Certain exceptions to the disclosure prohibitions under GINA are provided, including where the employee provides written consent, where the information is learned as part of an employer wellness program, where such information is required for the employer to comply with the Family and Medical Leave Act, and where the employer obtains genetic information "inadvertently." Employers may also disclose genetic information pursuant to a court order.
GINA will be enforced by the Equal Employment Opportunity Commission ("EEOC"), which is charged with proposing regulations to implement its requirements. The same remedies available under Title VII of the Civil Rights Act of 1964 are available GINA, including back pay, compensatory and punitive damages (up to $300,000, subject to the number of a company's employees) and attorneys' fees.
State Laws Mirror, Expand GINA
At present, 34 states have enacted genetic privacy laws similar to GINA. GINA does not preempt those state laws imposing more stringent obligations on employers, such as the Illinois' Genetic Information Privacy Act ("GIPA"). The Illinois General Assembly recently passed an amendment to GIPA, prohibiting Illinois employers, labor unions and employment agencies from seeking or using genetic information for personnel-related reasons. The amendment brings GIPA into line with GINA and incorporates into GIPA the same definitions found in GINA, except that GIPA covers employers with even one employee. GIPA also goes beyond GINA, in that GINA prohibits the use of genetic information in employer wellness programs. GIPA contains different and potentially more costly monetary penalties ($2,500 per occurrence for negligent mishandling and $15,000 for intentional mishandling). GIPA also gives employees the right to file a lawsuit, and it does not require the individual to file an administrative charge with any governmental agency before filing suit.
The GIPA amendment was sent to Governor Blagojevich on June 27, 2008, and he will have 60 days in which to sign. The bill does not contain any specific effective date. While bills signed by the Governor after the end of the legislative session generally become effective on January 1 of the following year, it is unclear when GIPA will take effect.
Employer "Take Away"
GINA and state laws like GIPA create a new source of potential legal liability for employers. Several thorny issues are likely to arise as claims are asserted under these new laws. For example, it is unclear whether employers may face liability if they request or receive medical information (arguably including genetic information) as part of the interactive accommodation process required under the Americans with Disabilities Act. In addition, although GINA permits employers to ask employees to disclose genetic information in order to complete FMLA certification forms or as part of an employee wellness program, these exceptions do not apply under Illinois law. Further, the circumstances under which an employer would be deemed to have "inadvertently" obtained genetic information—an exception permitted under GINA—are unclear. Is it inadvertent, for example, if a supervisor visits an employee in the hospital and there learns of the employee's genetically-related condition?
The EEOC's eventual regulations implementing GINA ultimately may clarify some of these issues. However, the EEOC's regulations are unlikely to address employer obligations under GIPA or the relationship between GINA and GIPA. Moreover, the EEOC regulations are not apt to be issued until long after the effective date of the amendments to GIPA (i.e., as early as January 1, 2009).