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The legislation prohibits discrimination on the basis of genetic information in both employment and insurance.

"The addition of genetic information discrimination to the EEOC's mandate is historic and represents the first legislative expansion of the EEOC's jurisdiction since the Americans with Disabilities Act passed in 1990," said Stuart J. Ishimaru, acting chairman of the EEOC, at a hearing in late February that presented the proposed rules.

Burlington Northern argued that it was entitled to conduct the testing in order to prove that the injuries were not work-related. The EEOC disagreed and sued the railway for violations under the ADA. The EEOC argued that the workers' blood tests were a prohibited medical test under the act.

While the EEOC and Burlington Northern settled the suit, the lack of clarity regarding the scope of the ADA's prohibition on medical testing led to the passage of the GINA six years later.

Guidelines address exception. The regulations, which implement Title II of GINA, prohibit employment discrimination -- as defined under Title VII -- based on an employee's or job applicant's genetic information. Unlike Title VII, GINA does not permit claims for disparate impact. However, a commission will study the issue in 2014 and make recommendations.

The regulations also restrict employers from collecting certain types of medical information through genetic tests or family histories. The proposed guidelines also address situations when an employer inadvertently obtains prohibited information -- the so-called "water cooler" exception.

The regulations include GINA-specific definitions of family member, family medical histories, genetic information and tests, allowable medical (but not genetic) information, and "manifestation of a disease." All are important in deciding whether information being requested in a medical exam is prohibited under GINA.

The ADA permits employers to obtain medical information, including genetic information, from post-offer job applicants. However, as of Nov. 21, employers will no longer be permitted to obtain any genetic information, including medical history, from post-offer applicants. Employers also will be prohibited from obtaining this type of information through a fitness-for-duty medical exam.

Susannah Baruch, law and policy director of the Pew Genetics and Public Policy Center at Johns Hopkins University in Baltimore, said the fear of genetic bias has caused workers to act contrary to their best interests.

"We know that in the past, patients have passed up genetic testing that could benefit their health and have gone to great lengths to keep genetic information secret -- even from their own doctors," Baruch said at the hearing.

Rules provide exceptions. The rules provide six exceptions to the prohibition on collecting or using genetic information:

1. Involuntary acquisition of or request for the family medical history of the employee. Even this information, however, cannot be used to discriminate in employment decisions. In the preamble to the regulations, the EEOC recommends that covered employers take measures to avoid even the inadvertent acquisition of genetic information. If an employee must provide documentation about a disability to support a request for an accommodation, ask the doctor not to include family medical history or other genetic information.

2. In support of a Family and Medical Leave Act request. Employees requesting FMLA leave to care for a sick relative may disclose family medical history when completing the certification. This information should not violate GINA but still must be placed in a separate medical file and treated as a confidential record.

3. For use in voluntary wellness programs. For example, a doctor working at a hospital may ask for family medical history from an employee who requests a medical examination. This would constitute allowing the collection of genetic information, under specified conditions, when an employer offers health or genetic services as part of a voluntary wellness program. The EEOC requests comments on how "voluntary" should be defined.

4. Through documents that are publicly and commercially available.For example, newspaper articles.

5. Genetic monitoring of toxic substances.

6. DNA collection for law enforcement purposes or human remains identification. Noncompliance remedies and rights are basically the same as those available for Title II violations.

The EEOC will accept comments until May 1.

March 30, 2009

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