By Jeremy Gruber

The Equal Employment Opportunity Commission recently issued its Final Rule implementing the Genetic Information Nondiscrimination Act after being granted broad authority to interpret it by the United States Congress. In it, the EEOC laid out in detail strong protections against genetic discrimination and employer access to genetic information for every American worker.

The Council for Responsible Genetics played the lead role in advocating for a strong Final Rule implementing GINA. We met multiple times with the EEOC Commissioners and formally testified before them. CRG was the lead drafter of multiple sets of written comments in conjunction with the Genetics and Public Policy Center-comments that were adopted by civil rights and patient's groups, including the Leadership Conference on Civil Rights, American Civil Liberties Union, Genetic Alliance and the Coalition for Genetic Fairness. This was a significant victory for the Council for Responsible Genetics, as virtually all our recommendations for reform were incorporated by the EEOC into the Final Rule.

As a result, the EEOC's Final Rule now includes:

  • strong and unambiguous definitions of key terms
  • narrowly crafted exceptions to the rule against acquisition of genetic information
  • clarification of the relationship between GINA and other civil rights and consumer laws in a manner that benefits the employee/consumer.

With regards to definitions, we were able to persuade the EEOC to include in the Final Rule an expanded and clarified definition of "genetic test" to ensure carrier screening for adults, newborn screening, ancestry and paternity testing etc. were formally acknowledged in the definitions.

We were also able to persuade them to clarify the definition of "manifested disease" so that individuals whose diagnosis was principally based on genetic information would remain protected by the law and that individuals who had manifested a genetically based disease continued to have their genetic information protected.

With regards to the prohibitions on "requesting, requiring, or purchasing" genetic information, the EEOC formally acknowledged our interpretation that GINA does not require that "intent" be present for a violation of GINA to occur.

The EEOC also adopted our interpretation that the exceptions to this rule should be narrowly construed. For example, they agreed that employers who might start with an innocent question, such as "How are you?," could not then follow up with more probing questions that might elicit genetic information. They further adopted our suggestion that employers who request medical information generally, under any circumstance, must indicate to whomever they ask that they do not want genetic information (a formal safe haven) to limit the opportunities for receiving genetic information as part of the normal course of business.

Wellness programs that include health risk assessments or require "qualification" to participate in a specific program are ripe for access to genetic information. Our adopted comments now ensure that provision of such information must be completely voluntary and that no financial incentives can be offered. Furthermore, individuals who do not wish to provide their genetic information must be allowed alternative ways to qualify for participation in tailored programs.

GINA makes an exception for the acquisition of genetic information from commercially and publicly available sources, such as picking up the newspaper and reading in the obituaries that an employee's parent died of a hereditary condition. The exception specifically exempts medical databases and court records. We argued that this provision was not meant to protect someone who was either intentionally looking for genetic information (even in open sources such as periodicals) or someone who was looking in any source that provided a heightened risk of obtaining genetic information. The EEOC agreed and included these distinctions in the Final Rule, as well as extending them to online sources.

Many additional interpretations of ours were included in the Final Rule, including a clarification of the interaction between the health insurance and employment sections of GINA in a manner that benefits the employee/consumer and ensures they are implemented and enforced with consistency and clarity.

Finally, our comments suggested that the Commission include specific examples throughout the Rule to illustrate its breadth. The Commission went to great pains to do so, and included several of our sample scenarios.

GINA now provides strong new protections for all Americans against discrimination and access to genetic information. As a result, Americans can finally take advantage of the tremendous potential of genetic research without the fear that their own genetic information will be used against them. While there is still much to do to ensure that genetic privacy in this country is respected, we are one step closer to our goal.                       

The Final Rule implementing GINA may be accessed in the Federal Register here:


Jeremy Gruber, JD, is President and Executive Director of CRG.

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