Overview: New rules governing the handling of genetic information affect communication practices among employees, employers, medical providers and other parties.

Final rules for enforcement of Title II of the Genetic Information Non-discrimination Act (GINA) went into effect Jan. 10, 2011.

Title II prohibits employment discrimination based on genetic information. It is the first legislative expansion of the Equal Employment Opportunity Commission’s (EEOC) jurisdiction since the Americans with Disabilities Act of 1990 (ADA) was enacted.

GINA prohibits employers from requesting genetic information about an employee, job applicant or family member. A request is broadly defined as asking for information about an individual’s health status in a way that is likely to result in obtaining genetic information, conducting an internet search, actively listening to third-party conversations, and searching an individual’s personal effects to obtain genetic information.

Attorneys say providers will need to be cautious when responding to requests for medical information from employers who are trying to manage family or medical leave and job accommodation situations.

Safe Harbor Provisions

Prior to issuing the final rules, the EEOC received a significant number of comments from employers who cited concerns about not having control over the information they receive from medical providers. Consequently, the final regulations include provisions protecting employers from liability and recommended language for standard medical request forms:

“(GINA) prohibits employers and other entities covered by GINA Title II from requesting or requiring genetic information of an individual or family member of the individual, except as specifically allowed by this law. To comply with this law, we are asking that you not provide any genetic information when responding to this request for medical information. ‘Genetic information’ as defined by GINA, includes an individual’s family medical history, the results of an individual’s or family member’s genetic tests, the fact that an individual or an individual’s family member sought or received genetic services, and genetic information of a fetus carried by an individual or an individual’s family member or an embryo lawfully held by an individual or family member receiving reproductive services.”

Wellness Programs

In other provisions relevant to occupational medicine practice, the EEOC rules interpret the law with regard to voluntary workplace wellness programs (75 Fed. Reg. 68912). GINA allows employers to obtain genetic information in connection with a wellness program under the following circumstances:

  • The provision of genetic information must be voluntary.
  • The employee must sign a written authorization containing a description of the type of genetic information that will be obtained, the general purpose for which it will be used, and legal restrictions on disclosing genetic information.
  • The information may be shared only with a licensed health care professional or board-certified genetic counselor who is providing services and not with others in the workplace.
  • Individually identifiable genetic information may only be disclosed in aggregate terms. An employer does not violate GINA simply by receiving aggregate data from a wellness provider that makes an individual readily identifiable for reasons outside the employer’s control.
  • An “inducement” for completing a health risk assessment that includes questions about genetic information may be used, but only if related questions are clearly identified and individuals are not required to answer them to qualify for the incentive. Employers also may offer a financial inducement to participate in a disease management program as long as the reward and program are available to at-risk individuals who could benefit from interventions, not just to those who provide genetic information.

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