Background: GINA prohibits discrimination based on an individual’s genetic information in both the employment and health coverage contexts. In 2009, HHS published a notice of proposed rulemaking to strengthen the privacy protection for genetic information by, among other things, explicitly stating in the Privacy Rule that genetic information is PHI and that health plans may not use or disclose genetic information for underwriting purposes.

Modifications: The Final Rule includes a specific prohibition against the use or disclosure of PHI that is genetic information by health plans (excluding issuers of long term care policies) for underwriting purposes. To help clarify for health plans the types of uses and disclosures that are prohibited by this new provision, the Final Rule makes several definitional additions and changes, including the addition of definitions for the terms “genetic information,” “genetic services,” “genetic test,” and “underwriting purposes.” Finally, as described above in the section discussing NPPs, health plans that perform underwriting (except for issuers of long term care policies) must include in their NPPs a statement that they are prohibited from using or disclosing genetic information for such purposes.