United States · Regulation
78 FR 5566
HIPAA Privacy Rule treatment of genetic information
- Status
- Approved
- Effective date
- March 26, 2013
- Last reviewed
- September 2, 2026
- Source review
- Primary source reviewed
Summary
The 2013 HIPAA final rule made clear that genetic information is health information under the HIPAA Privacy Rule. It also prohibited most health plans covered by HIPAA from using or disclosing protected health information that is genetic information for underwriting.
Topics: Genetic data storage/privacy/sharing (medicine) · Health Insurance Nondiscrimination
What it requires or prohibits
The rule revised HIPAA definitions and barred most HIPAA-covered health plans from using or disclosing genetic information for underwriting. It took effect on March 26, 2013, with a September 23, 2013 compliance date.
In plain language
Identifiable genetic information held by a health plan, health care provider, or clearinghouse covered by HIPAA can be protected health information. The rule also limits how most covered health plans may use it for underwriting.
Primary sources
- Modifications to the HIPAA Privacy, Security, Enforcement, and Breach Notification Rules. Office of the Federal Register. Accessed September 2, 2026.
Record details
Record metadata
Record history
- January 25, 2013: Final rule published in the Federal Register. Source: 78 FR 5566.
- August 31, 2026: Record created from the final rule.
- September 2, 2026: Project-authored analysis revised after primary-source review.
Technical metadata
Record ID: federal-hipaa-genetic-information-2013
Topics: genetic-data-storage-privacy-sharing-medicine, health-insurance-nondiscrimination
Record data file: data/federal/federal-hipaa-genetic-information-2013.yaml
Help improve this record
If an official source, legal status, date, or summary needs attention, submit the record and supporting primary source for review.
Cite this record
Who Owns Your DNA? 78 FR 5566: HIPAA Privacy Rule treatment of genetic information. U.S. Genetics & Genomics Law and Policy Tracker. Record version 1.1. Accessed [date]. https://whoownsyourdna.org/records/federal-hipaa-genetic-information-2013/