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Federal Agencies Release New Genetic Information Privacy Rules

02 October 2009

Several federal agencies released new rules yesterday implementing the Genetic Information Nondiscrimination Act of 2008 (GINA). GINA prohibits discrimination based on genetic information in health coverage and employment. The Departments of Labor, Treasury, and Health and Human Services (HHS) issued Interim Final Rules, and HHS separately, through the Office of Civil Rights (OCR), issued a Proposed Rule.

The interim final rules prohibit group health plans and issuers in the group health insurance market from: (1) increasing premiums for the group based on genetic information, (2) requesting or requiring individuals to undergo a genetic test, and (3) requesting requiring or purchasing genetic information prior to or in connection with enrollment, or at anytime for underwriting. In general, individual health insurers are subject to the same or similar prohibitions, with certain exceptions. Comments are due on these interim final rules within 90 days of each rule’s publication in the Federal Register.

The OCR proposed rule seeks to amend the Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy Rule by including genetic information within the definition of health information and prohibiting covered health plans from using or disclosing genetic information for underwriting purposes (i.e., eligibility determinations, premium and contribution computations, applications of pre-existing condition exclusions and other activities relating to creation, renewal or replacement of health insurance). Comments are due 60 days from publication of the proposed rule in the Federal Register. 

 

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