New Federal Law Bans Genetic Discrimination

President Bush recently signed into law the Genetic Information Nondiscrimination Act (“GINA” or the “Act”), which prohibits discrimination on the basis of genetic information. In overwhelmingly passing the Act, Congress sought to encourage individuals to take advantage of advances in genetic testing to obtain information regarding a possible predisposition to develop certain diseases or disorders and then to take steps to reduce the likelihood of developing such conditions. Congress further noted that knowledge gained through genetic testing may also lead to the development of more effective   treatments for diseases, with fewer side effects.

GINA applies to employers with more than 15 employees, group health plans (“Plans”), and health insurance issuers offering health insurance coverage in connection with a group health plan (“Insurers”). It does not apply to life insurance or long-term care insurance.

Health Insurance Discrimination
The Act prohibits Plans and Insurers from adjusting group premiums or contribution amounts on the basis of genetic information. It does not limit Insurers’ ability to increase an employer’s premiums based on an individual’s manifestation of a disease or disorder, but such manifestation cannot be used as the basis for genetic information about other group members.

GINA also prohibits Plans and Insurers from requesting or requiring an individual to undergo genetic testing. A healthcare professional providing services to an individual, however, is permitted to request that the person undergo a genetic test. A Plan or Insurer may obtain or use the results of a genetic test in making a determination regarding payment so long as it requests only the minimum amount of information necessary for that purpose.

The Act permits Plans and Insurers to request that a participant or beneficiary undergo a genetic test pursuant to a research study if the request is made in writing and the participants are informed that:

  • compliance with the request is voluntary;
  • non-compliance will have no effect on enrollment status or premium or contribution amounts;
  • genetic information obtained through genetic testing will not be used for underwriting purposes; and
  • the Plan notifies the Secretary of Health and Human Services of the study.

Employment Discrimination
The Act also prohibits any form of employment discrimination on the basis of genetic information, including:

  • failure or refusal to hire;
  • discharge;
  • discrimination regarding compensation, terms, conditions, or privileges of employment;
  • limiting, segregating, or classifying employees to deprive them of employment opportunities or otherwise adversely affect their status; or
  • retaliating against an employee for opposing unlawful conduct under the Act or for making a charge or assisting or participating in an investigation under the Act.

The Act specifically excludes disparate impact claims on the basis of genetic information. The prohibitions against employment discrimination also apply to employment agencies in the context of employment referrals and to labor organizations in the context of membership.

Employers also may not request, require, or purchase employee genetic information unless:

  • the employer inadvertently requests or requires family medical history of the employee;
  • the employer provides health or genetic services (for example, as part of a wellness program), as long as certain conditions are met;
  • the employer requests or requires the employee’s family medical history to comply with certification provisions of the Family and Medical Leave Act or similar state laws;
  • the employer obtains commercially and publicly available materials (such as newspapers, magazines, and books, but not medical databases or court records) that include family medical history;
  • the information is to be used for genetic monitoring of biological effects of toxic substances in the workplace, but only if certain conditions are met; or
  • the employer conducts DNA analysis for law enforcement purposes.

Employers must treat employee genetic information as confidential medical records, maintained on separate forms and in separate medical files. The information may not be disclosed except under the following conditions:

  • to the employee (or family member if the family member is receiving the genetic services) upon the employee’s written request;
  • to an occupational or health researcher for research conducted in compliance with specified regulations;
  • in response to a court order, but only information authorized by the order may be disclosed, and the employer must inform the employee of the order and the genetic information that was disclosed;
  • to government officials investigating compliance with the Act;
  • in connection with the employer’s compliance with certification provisions of the Family and Medical Leave Act or similar state laws; or
  • to a federal, state, or local public health agency in connection with a contagious disease that presents an imminent hazard of death or life-threatening illness, and the employee is notified of the disclosure.

The impact of GINA will not be felt immediately. The Act calls for regulations to be adopted by May 2009.  The health insurance provisions take effect that month, and those relating to employers become effective in November 2009. Employers should nevertheless begin to review and make appropriate changes to their policies and procedures to ensure compliance with the law when it takes effect.

Shawn Young regularly practices in the areas of general business and corporate law, commercial litigation, and intellectual property. For more information on GINA, please feel free to contact Shawn at (513) 629-9440.