Genetic Information

The Genetic Information Nondiscrimination Act (GINA) was signed into law on May 21, 2008.  GINA protects individuals against discrimination based on their genetic information in health coverage and in employment.  GINA is divided into two sections, or Titles.  Title I of GINA prohibits discrimination based on genetic information in health coverage.  Title II of GINA prohibits discrimination based on genetic information in employment.

In the proposed rule issued on October 1, 2009 OCR proposes to modify the Privacy Rule to clarify that genetic information is health information and to prohibit the use and disclosure of genetic information by covered health plans for underwriting purposes, which include eligibility determinations, premium computations, applications of any pre-existing condition exclusions, and any other activities related to the creation, renewal, or replacement of a contract of health insurance or health benefits.  OCR is publishing this proposed rule with a 60 day period for public comments.

OCR developed this proposed rule after coordinating with the Department of Labor (DOL), the Centers for Medicare and Medicaid Services (CMS), and the Department of the Treasury (Treasury), which have responsibility for issuing regulations under GINA Title I to prohibit discrimination based on genetic information by group health plans and health insurance issuers, and with the Equal Employment Opportunity Commission (EEOC), which has responsibility for issuing regulations under GINA Title II to prohibit discrimination based on genetic information by employers.  Additionally, HHS sought guidance from the National Institutes of Health on the definitions and on other issues. 

View the OCR Final Rule.

View the OCR Proposed Rule.

View the DOL/CMS/Treasury Interim Final Rule.

View the Press Release.

View the EEOC Final Rule.