GINA: First Federal Civil Rights Law of the 21^st Century

By Chuck Pautsch

"Although genes are facially neutral markers, many genetic conditions and disorders are associated with particular racial and ethnic groups and gender. Because some genetic traits are most prevalent in particular groups, members of a particular group may be stigmatized or discriminated against as a result of that genetic information. ...Congress has been informed of examples of genetic discrimination in the workplace. ...Congress clearly has a compelling public interest in relieving the fear of discrimination and in prohibiting its actual practice in employment and health insurance." Congressional Findings Section 2 of the Genetic Information Non-Discrimination Act of 2008.

The Nineties saw the passage of the Americans with Disabilities Act (ADA) in 1991 and the federal Family and Medical Leave Act (FMLA) in 1993. Congress has not enacted a major piece of employment legislation since then. However, Congress passed, and the President has signed into law, the Genetic Information Non-Discrimination Act (GINA) in May 2008. GINA prohibits discrimination against individuals in 1) employment, and 2) health care coverage (including group health plans, individual health insurance coverage and Medicare supplemental insurance policies). The employment provisions (Title II) become effective in November 2009, while the health care coverage provisions (Title I) become effective in May 2009.

TITLE II- EMPLOYMENT PROVISIONS UNDER GINA

The provisions of Title II will result in close scrutiny of the use of genetic information in American workplaces. In addressing employers' obligations, GINA states, subject to narrow exceptions, that it is an unlawful employment practice to discriminate on the basis of genetic information or to request, require or purchase genetic information. Furthermore, GINA requires confidentiality protections for genetic information obtained by an employer. Genetic information includes:

1) an individual's own genetic tests;

2) the genetic tests of "family members" of an individual (where family member is defined as

an individual's spouse, dependent child, or parent, grandparent or great-grandparent); and

3) the manifestation of a disease or disorder in "family members."

As a result of the third prong of this definition, the "family history" questions long used on health plan questionnaires would be prohibited as an unlawful collection of "genetic information."

Discrimination Based on Genetic Information: Discrimination by employers on the basis of genetic information extends to "hiring, firing, compensation, terms, conditions or privileges of employment." Furthermore, employers are prohibited from using genetic information to limit or classify an employee that would deprive or tend to deprive him or her of employment opportunities or affect employee status with an employer.

Acquisition of Genetic Information: GINA is an expansion of the provision contained in the ADA prohibiting discrimination based on association with an "individual with a disability." This legal theory has been receiving increasing attention from litigators. The trend should be accelerated now that the associated group giving rise to protection includes not just an "individual with disabilities," but also relatives with genetic predispositions towards diseases and illnesses that have not yet resulted in actual disabilit(ies). GINA proactively attempts to prevent this sort of discrimination by forbidding employers from requesting, requiring, or purchasing "genetic information" about employees or their "family members." The only exceptions are:

1) when an employer inadvertently requests or requires the information;

2) for genetic services offered by the employer (including wellness programs);

3) for purposes of complying with the FMLA;

4) when an employer purchases documents that are commercially available;

5) when the information involved is to be used for genetic monitoring of the

biological effects of toxic substances in the workplace; and

6) when an employer conducts DNA analysis for law enforcement purposes.

Confidentiality Requirement under GINA: Additional duties imposed by GINA on employers include confidentiality stipulations in the event an employer does possess genetic information. An employer will be considered compliant with the confidentially of genetic information it possesses if the information is maintained and treated as a confidential medical record under section 102(d)(3)(B) of the Americans with Disabilities Act.

Remedies and enforcement of Title II (Employment Discrimination) under GINA are the same as those under Title VII of the 1964 Civil Rights Act, with the exception of "disparate impact" claims, which are not allowed under GINA.

(*While similar requirements as set forth above apply to labor organizations and employment agencies, this article is designed to focus on the obligations GINA outlines for employers. Therefore, important differences not addressed may apply to labor organizations and/or employment agencies.)

TITLE I- HEALTH CARE COVERAGE UNDER GINA:

The health care coverage protections set forth in Title I of GINA generally prohibit a group health plan from adjusting premium or contribution rates under a plan on the basis of genetic information, and cannot require or request an individual or family member of an individual to undergo a genetic test. Genetic test is defined as an analysis of human DNA, RNA, chromosomes, proteins or metabolites that detects genotypes, mutations or chromosomal changes (perfectly clear, right?). GINA allows for a limited exception to request (but not require) an individual to undergo a genetic test for certain research projects. Furthermore, a group health plan cannot request, require or purchase genetic information for underwriting purposes.

Personal liability for plan administrators for discriminating in coverage decisions and substantial monetary penalties are set forth in GINA's provisions affecting health care plans. Injunctive relief, including retroactive reinstatement of health care coverage, is provided for as well.

Finally, confidentiality of genetic information is required by including it under the definition of protected health information under HIPAA, and GINA sets up substantial penalties and even prison terms up to 10 years for the improper disclosure of such information in violation of its terms.

(*This article is designed to focus on the obligations GINA outlines for group health insurance plans. Therefore, important differences not addressed in this article may apply to insurers in the individual and Medicare supplemental markets.)

Questions? For more information about The Genetic Information Non-Discrimination Act of 2008, contact Chuck Pautsch in our Milwaukee office at (414) 291-0600.