March 9, 2009

Genetic Nondiscrimination Regulations - Proposed

Last May, Congress passed, and President Bush signed, the Genetic Information Nondiscrimination Act of 2008(“GINA”) (See Benefit Beat, June, 2008 – “New Law Prohibits Genetic Discrimination”). On March 2, the Equal Employment Opportunity Commission (“EEOC”) issued proposed regulations defining this law. The comment period for these proposed regulations will be open for 60 days, after which, the EEOC will finalize the regulations, hopefully, on time for the law’s implementation dates.

These proposed regulations attempt to clarify how “genetic information” and “family medical history” must be protected. From a human resources perspective, this will have particular implications for ADA and FMLA compliance, as well as for wellness plan design. Generally speaking, the regulations would prohibit the collection of genetic information, including family medical history, with six very narrow exceptions, including an exception for voluntary disclosure of information.

The regulations, as proposed, make it clear that, to the extent genetic information or family medical history is permissively collected, it is subject to strict confidentiality requirements. In a nutshell, all such information would have to be retained separately from the general personnel file; for example, it could be retained with other ADA medical information. To the extent that such information is “protected health information” as defined by HIPAA, the HIPAA Privacy Rules would apply.

One of the significant areas for which the EEOC is seeking guidance, is how such information can be used in conjunction with a wellness program. In discussions relating to health care reform, wellness plays a preeminent role. The EEOC seems to be open to allowing the collection of genetic information, and family medical history, as long as it is strictly voluntary. The outstanding question is, “What does ‘voluntary’ mean?” The proposed regulations suggest that the voluntary standard might fail if eligibility or premium are affected by the results or refusal to participate in a wellness program, including a health risk assessment.

We will continue to watch the evolution of these regulations.


The information contained in this Benefit Beat is not intended to be legal, accounting, or other professional advice, nor are these comments directed to specific situations.

As required by U.S. Treasury rules, we inform you that, unless expressly stated otherwise, any U.S. federal tax advice contained in this Benefit Beat is not intended or written to be used, and cannot be used, by any person for the purpose of avoiding any penalties that may be imposed by the Internal Revenue Service.

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