The federal Genetic Information Non-Discrimination Act (GINA) was enacted in 2008 to prevent discrimination in the workplace on the basis of genetic information. However, the effective date of the law was delayed. The workplace discrimination provisions will be effective November 21, 2009. The key provisions of the law that employers need to know as the deadline approaches are outlined below.


GINA prohibits employment discrimination on the basis of genetic information, prohibits employers from requiring, requesting or purchasing genetic information and prohibits retaliation against employees who oppose acts that violate GINA. It also imposes confidentiality requirements on employers with respect to genetic information it may obtain.

Violation of these prohibitions, which apply to employers with 15 or more employees, may subject employers to the same liability imposed on employers who violate federal sex and race anti-discrimination laws. Employees can in some cases obtain back pay, compensatory and punitive damages, attorneys’ fees and sometimes even reinstatement.

Aside from the employment anti-discrimination provisions, GINA also affects health plans. In particular, recent federal regulations addressing GINA will affect how almost all employers, even those with fewer than 15 employees, structure any wellness program they may offer their employees.


The prohibitions of GINA relate to the “genetic information” of employees and their “family members.” Those terms are defined as follows:

Family member includes:

  • an employee’s spouse;
  • an employee’s dependent child, including a child who is born to or placed for adoption with the employee; and
  • all other individuals related by blood to the employee or to the employee’s spouse or child.

Genetic information includes:

  • an employee’s genetic tests;
  • the genetic tests of an employee’s family members; or
  • the occurrence of a disease or disorder in an employee’s family member.

The term “genetic information” does not include information about sex or age.

Anti-Discrimination Provisions

Under GINA, it is unlawful for an employer to:

  1. Refuse to hire, discharge or otherwise discriminate against an employee because of the employee’s genetic information or information about an employee or family members’ request for genetic service; or
  2. Limit, segregate or classify employees to deprive an employee of opportunities or adversely affect employment status because of the employee’s genetic information or information about an employee or family member’s request for genetic service.

Employers considering their obligations under GINA must keep in mind that the definition of genetic information is extremely broad. For example, the anti-discrimination protections of the statute are triggered even if you simply learn that an employee’s family member has a specific disease at a company picnic. Once an employer has that information–even if the information was not requested–the employer may be vulnerable to a charge of discrimination on the basis of genetic information if the employee is later disciplined or discharged.

Prohibition on Requests for Genetic Information

GINA also makes it unlawful to request, require, or purchase employee or family member genetic information or information about an employee or family member’s request for genetic service. There are however, several exceptions to this rule.

First, the rule does not apply when an employer inadvertently requests or requires family medical history of the employee or family members.

Second, the rule does not apply when health or genetic services are offered by the employer, for example as part of a wellness program that gives employees the opportunity to participate in a health risk assessment, if the employee voluntarily consents in writing and if the genetic information is subject to certain restrictions.

Third, the rule does not apply if genetic information is obtained as part of the medical certification process that is part of determining if an employee is entitled to state or federal family or medical leave.

Fourth, the rule does not apply if the employer purchases commercially and publicly available documents that include family medical history, or if the information is to be used to monitor the effects of toxic substance in the workplace. Special rules apply to workplace monitoring.

These exceptions apply only with respect to purposefully obtaining genetic information. Even if the information is lawfully obtained, employers still are prohibited from any kind of workplace discrimination (see paragraphs 1 and 2 in the Anti-Discrimination section, above) based on that information.

Confidentiality Obligations and Disclosure

All genetic information must be treated as confidential medical records. The genetic information need not be maintained separately from other confidential medical records, but does need to be separate from all non-medical records and must be properly secured.

Employers cannot disclose genetic information except as follows:

  1. It can be disclosed to the employee or family member;
  2. It can be disclosed to an occupational or heath researcher for research conducted in compliance with federal law;
  3. It can be disclosed in response to a court order, but only as much as expressly authorized by the order and only if the employee is given adequate notice to challenge the court order;
  4. It can be disclosed to government officials investigating compliance with GINA;
  5. It can be disclosed in connection with the provision of medical certification an employer requires pursuant to state or federal family and medical leave laws.


As is true under other anti-discrimination laws, it is unlawful for employers to retaliate against an employee for opposing an act that violates GINA.

Health Plans and Wellness Programs

GINA also includes provisions that govern how group health plans and insurers can use genetic information. Federal regulations issued in October of this year fleshed out the statutory provisions. The provisions are applicable to plan years beginning on or after May 21, 2009. For most employers with calendar year plans, that means the provisions go into effect January 1, 2010.

Under GINA, plans and insurers generally cannot:

  • request or require genetic testing based on genetic information unless needed for the payment of benefit claims or for research that meets federally specified guidelines;
  • adjust premiums or contributions for a group based on genetic information;
  • request, require or purchase genetic information prior to or in connection with enrollment or at any time for underwriting.

Plans and insurers are, however, permitted to obtain and use genetic test results in making a determination of benefit payments and medical appropriateness of the benefit sought, as well as for use in research that meets federally specified guidelines.

Wellness programs offered by employers may have to be adjusted in light of the new federal regulations. A key part of most wellness programs is the health risk assessment questionnaire–HRA. An HRA usually obtains medical histories from employees and can be used to help better manage employees’ health and health care. Under the new regulations, employees may not be given an HRA that seeks or would reveal genetic information prior to or at enrollment in a health plan. Moreover, even after enrollment, plans that offer employees any incentive to complete HRAs that seek or would reveal genetic information will violate GINA.

Next Steps?

To timely comply with GINA, employers should take the following steps:

  • Review existing procedures and policies to make sure they do not run afoul of obligations under GINA;
  • Review health plans and/or talk to all applicable insurers to ensure that plans comply with GINA;
  • Post along with your other employment law postings a description of employee’s rights under GINA. You may want to use either the EEOC’s poster, found here, or a poster from a commercial provider to ensure that your poster contains all the appropriate language;
  • With respect to any wellness programs in particular, make sure that HRAs which seek or may reveal genetic information are being offered, if at all, only after the employee has enrolled in a health plan and without any incentives to the employee for completing them.

For more information on compliance with GINA, please contact attorney Meg Vergeront.

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