A Brief Legal Overview of the Genetic Information Nondiscrimination Act

Enacted in 2008 in response to concerns about potential abuses of the human genome full sequence (completed in 2003), the Genetic Information Nondiscrimination Act (GINA) may the least generally known federal civil rights legislation. This comment provides a brief and incomplete educational overview of GINA. Always contact an experienced attorney in all specific discrimination situations.

GINA (42 U.S.C. Sec. 2000ff) was entitled "An Act to prohibit discrimination on the basis of genetic information with respect to health insurance and employment." However, the legislation prohibits acquiring genetic information as well as utilizing it to discriminate. A 1998 Ninth Circuit federal court decision had found employment discrimination, and a potential privacy violation, when an employer engaged in non-consensual genetic testing based upon the employees' gender and race (Bloodsaw v. Lawrence Berkeley Laboratory). The Equal Employment Opportunity Commission (EEOC) first sued and reached a settlement in 2002 when an employer, Burlington Northern Santa Fe Railroad, without employee consent, engaged in genetic testing for a rare genetic condition that produces carpal tunnel syndrome as well as screening for diabetes and alcoholism. What was legally uncertain after these cases was whether or not employee consent would validate genetic testing.

GINA became effective in November 2009. The EEOC, in general overview, issued implementing regulations applicable in 2011 and amended record keeping standards in 2012. In the neighborhood of 1,200 GINA claims have been administratively resolved by the EEOC, the majority favorably for the employer. The EEOC has a significant amount of guidance information on its Website.

The overall GINA coverage and exclusions reads much like that related to the federal Civil Rights Act of 1964: 15 or more employees, etc. Health care employers who treat their employees internally must prevent the employee's medical information from being viewed by employment supervisors. Additionally, an employer designating outside providers for physicals or employee medical matters is responsible for their GINA violations. However, a number of court decisions indicate that liability for GINA violations does not extend to individual employees since the statute references employers.

GINA specifically defines what constitutes "genetic" information and a "genetic test." Broadly, GINA protections extend beyond the individual employee to her or his family members, up to a fourth-degree relative according to EEOC regulations. Rather technical distinctions are made between genetic and non-genetic information. Litigation is beginning to occur with somewhat conflicting court decisions concerning what information is or is not covered by GINA.

Typically to the extent that an employer has been appropriately complying with the Americans with Disabilities Act (ADA) record-keeping and confidentiality provisions, the employer will also be in GINA compliance. Allowable HIPPA actions are still lawful, even with the GINA regulations. Of course, consult an experienced attorney concerning all GINA issues. Require a written request, even from the employee, prior to releasing GINA information. It is noteworthy that the ADA considers manifested (currently operative) disabling conditions while GINA considers genetic information that may not have resulted in any manifest conditions.

Much like Title VII of the Civil Rights Act of 1964, GINA addresses adverse treatment in hiring, discharging, or otherwise discriminating in employment matters based upon genetic information. However, disparate impact claims, seemingly neutral practices that have a disproportionate impact on a protected group, are not included in GINA. Retaliation against an employee who asserts GINA rights is prohibited. Consequently, it is possible that even an ultimately dismissed employee GINA claim could nevertheless give rise to a retaliation action. As is true in all retaliation situations, one must undertake a cautious response to the initial employee assertion.

GINA states that an employer cannot "request, require, or purchase genetic information with respect to an employee or a family member of the employee." A "willful" state of mind to acquire the information is not required under EEOC regulations. Note that family medical history is "genetic information" and the request by an outsourced provider may trigger an employer's liability. Specified "inadvertent" acquisitions of information are not penalized. Nevertheless, even this information cannot be used as the basis of an adverse employment action.

An employee asserting a GINA violation must timely notify the EEOC with a specific reference to GINA, apart from an ADA notice. The time limit to file a charge is 180 days after the discriminatory event; however, state law may allow a longer time. Potential monetary damages for GINA violations are those established by Section 1981a of the Civil Rights Act (42 U.S.C. Sec. 2000ff-6). These are compensatory damages and punitive damages on a sliding scale based upon the size of the employer. Other relief, such as reinstatement that may be with or without back pay, is available. Costs and fees of the legal action are recoverable but not if a lawsuit is unreasonable or frivolous.

A controversial and unsettled GINA issue involves employers' wellness programs that offer a financial incentive or penalty. Is the wellness program essentially mandatory, given the financial considerations associated with participation? If the program is mandatory, requesting assessment information triggers ADA and GINA protections. The EEOC in late 2015 proposed some regulations concerning this issue. Congressional action to clarify the question is possible. Another developing issue involves forensic testing in the workplace to determine the identity of employee wrongdoers. Likewise, Congress should clarify what investigative behaviors are permissible.

GINA does not apply to several important insurance activities: disability, extended care, or life insurance. There is a mixture of state statutes concerning the use of genetic information in these situations. California includes genetic information as a protected category (like race) in its state civil rights act. Federal action in the foreseeable future seems unlikely. Open legal questions involve the potential for fraud by an applicant for insurance who fails to disclose known material (significant) genetic information and the ability of an insurance carrier to cancel a policy based upon after-acquired genetic information.

While a recent LexisNexis search listed approximately 150 judicial decisions containing the phrase "Genetic Information Nondiscrimination Act," the specific situational applications of GINA are still unfolding. Consequently, an employer might appropriately error on the side of caution.

This comment provides a brief and incomplete educational overview of a complex topic and is not intended to provide legal advice. Always consult an experienced attorney in all specific discrimination situations.