EEOC Issues Proposed Regulations To Enforce Law Banning "Genetic Information" Discrimination

The Equal Employment Opportunity Commission (EEOC) has proposed new rules to implement the employment law provisions of the Genetic Information Nondiscrimination Act (GINA). GINA, which passed with nearly unanimous support last year, prohibits discrimination on the basis of "genetic information" by insurers and employers.

The proposed regulations would implement Title II of GINA (Title II). Title II protects current and former employees, job applicants, apprentices and trainees, and labor union members from discrimination based on genetic information. Under Title II, employers are generally prohibited from acquiring or disclosing genetic information, and from making employment decisions based on such information.

THE PURPOSE OF GINA AND TITLE II

The proposed rules note that GINA was drafted in response to the increasing prevalence of genomic medicine and genetic tests, and that, when drafting GINA, Congress wanted to encourage the use of these new medical advancements and allay fears that genetic information could adversely affect health insurance coverage and employment. Title I was drafted to allay these concerns with respect to health insurance coverage, and Title II with respect to employment.

DEFINING TERMS

The proposed rules define and clarify ambiguities pertaining to the terms of Title II. They also simplify interpretation of Title II by importing language from other statutes into the proposed rules where provisions of Title II had defined terms by reference to other statutes.

The proposed rules also clarify the meaning of terms that are specific to GINA, and that are not used in any other EEOC-enforced discrimination statute. These include: (1) "family member," (2) "family medical history," (3) "genetic information," (4) "genetic monitoring," (5) "genetic services," (6) "genetic test" and (7) "manifestation or manifested."

The proposed rules maintain Title II's broad definition of the term "family member," but add necessary clarification. Under the statute, the term includes an individual's dependent and any other individual who is a first to fourth-degree relative. The proposed rules clarify that "fourth degree" includes an individual's "great-great grandparents, great-great grandchildren and first cousins once-removed," and that "dependents" are limited to those related through "marriage, birth, adoption or placement for adoption."

The term "family medical history," a term not defined in Title II, is defined as "information about the manifestation of a disease or disorder in family members of the individual," and the definition of "genetic test," although defined in Title II, was expanded to provide more examples of tests that are not covered. For example, such tests now exclude tests for the presence of a virus, and tests for the presence of alcohol or drugs. Further, certain "routine" tests would not be genetic tests under the rules, including "complete blood counts, cholesterol tests and liver-function tests." In addition, the proposed rules create a definition for "manifestation or manifested" - terms that mean, with respect to a particular disease, disorder or condition, that an individual "has been or could reasonably be diagnosed with the disease, disorder or pathological condition by a health care professional with appropriate training and expertise in the field of medicine involved."

IMPORTANT CLARIFICATIONS FOR EMPLOYERS REGARDING DISCRIMINATION

The proposed rules also include an analysis of discriminatory acts that would be prohibited under the statute. For example, the analysis clarifies that an employer could not "limit, segregate or classify" based on genetic information under the statute by "reassign[ing] someone whom it had learned had a family medical history from a job it believed would be too stressful and might eventually lead to heart-related problems for the employee." Similarly, under the proposed rules, an employer could not cause another covered entity to discriminate by, for example, directing an employment agency to ask applicants for their genetic information, even though the terms of Title II do not expressly preclude such discrimination. Significantly, the rules clarify that a "disparate impact" cause of action for discrimination is not available for discrimination suffered under Title II.

EXCEPTIONS

The rules analyze the following exceptions to the general prohibition in Title II against requesting, requiring or purchasing genetic information:

1. Inadvertently Requesting Or Requiring Genetic Information.
   
   This exception is referred to in the rules as "the water cooler exception" because it allows for an employer to avoid liability when overhearing medical information about an employee during a casual workplace conversation. It also applies in other similar circumstances where an employer receives such information without seeking it or soliciting it.
2. Obtaining Genetic Information Provided Voluntarily As Part Of A "Health Or Genetic Services" Program Offered By The Employer.
   
   This exception applies to exempt certain voluntary wellness programs from Title II requirements.
3. Medical Certifications Provided To The Employer Pursuant To The Family And Medical Leave Act (FMLA).
   
   This would occur where, for example, an employer requests to take medical leave under the FMLA to take care of a sick family member, and discloses information pertaining to a "family medical history" when filling out the required certification.
4. The Purchase Of Commercially And Publicly Available Information That May Include Family Medical Histories.
   
   This would be an exception to liability where, for example, an employer reads a newspaper article or sees a program on television profiling several women living with the knowledge that they have the gene for breast cancer, and then discovers that one of the women featured is an employee.
5. Genetic Monitoring Of The Biological Effects Of Toxic Substances In The Workplace.
   
   This exception allows for such monitoring as long as the employer provides notice of the monitoring, obtains voluntary authorization from employees, the monitoring complies with federal and state laws, the monitored individual receives the results of the monitoring and the employer receives the information obtained from the monitoring in a way that does not disclose the identity of specific individuals.
6. DNA Testing For Law Enforcement Purposes.
   
   This is a narrow exception that allows labs that engage in DNA testing for law enforcement purposes to detect "sample contamination."

With respect to Title II's "confidentiality" requirements, which generally require that genetic information be kept confidential and separate from the rest of the regular personnel file, the proposed rules make a few exceptions. These include: (1) genetic records may be kept in the same file as medical records – they do not need a separate "genetic information" file; (2) genetic information received orally does not need to be reduced to writing, although it cannot be disclosed; and (3) where a covered entity acquires a family medical history through publicly available sources, it does not need to keep this information confidential, although it cannot make employment decisions based on the information.

Additionally, the regulations provide exceptions to the prohibition on "disclosure" of an employee's genetic information, which include: (1) disclosure of the information to whom it relates, if the individual requests disclosure in writing; (2) disclosure to an occupational health researcher under certain circumstances; (3) disclosure in compliance with a court order; (4) disclosure to government officials investigating compliance with the statute; (5) disclosure consistent with the FMLA or a similar state or local law; and (6) disclosure to authorities in connection with a contagious disease that presents an "imminent hazard of death or life-threatening illness."

INVITATION TO COMMENT

The EEOC is seeking written comments from the public on these proposed regulations, and issues relevant to them, over the course of the next two months (60 days from March 2, 2009).

Of significance, the EEOC is inviting comments on two issues that are particularly relevant to employers. One issue is whether an employer should be prohibited from researching personal websites, blogs and other social networking sites that may contain genetic information about an individual. Under the proposed rules, an employer is currently prohibited from researching family medical histories contained in medical databases or court records. The EEOC also invites definitions of the term "voluntary" for the purpose of a GINA-compliant wellness program.

Although the EEOC has until May 21, 2009, to finalize these proposed regulations, employers should review employment policies, personnel files and wellness programs to ensure that they comply with these proposed rules. If a breach of an employee's confidential information is suspected, contact labor counsel immediately.

To obtain a copy of the proposed regulations, visit http://www.eeoc.gov/, click on "EEOC Regulations," and then click on "Proposed Rule: Regulations Under the Genetic Information Nondiscrimination Act of 2008, Federal Register Notice, March 2, 2009."

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