United States · regulation

78 FR 5566

HIPAA Privacy Rule treatment of genetic information

Approved
Jurisdiction
United States
Record type
regulation
Regulatory citation
45 C.F.R. Parts 160 and 164
Effective
March 26, 2013
Last reviewed
August 31, 2026
Record version
1.0
Verification
verified primary
Permanent URL
https://whoownsyourdna.org/records/federal-hipaa-genetic-information-2013/

Topics: Genetic privacy · Health insurance

Summary

The 2013 HIPAA final rule implemented GINA-related changes by treating genetic information as health information and restricting covered health plans from using or disclosing genetic information for underwriting.

What the law or policy does

The final rule revised HIPAA definitions and privacy provisions so genetic information is treated as health information and covered health plans may not use or disclose it for underwriting purposes.

What this means

Genetic information held by a HIPAA-covered entity can be protected health information. HIPAA does not cover every company or every consumer genetic testing service.

Primary sources

Record details

Record history
  1. January 25, 2013: Final rule published in the Federal Register. Source: 78 FR 5566.
  2. August 31, 2026: Record created from the final rule. Source: Project review.
Technical metadata

Record ID: federal-hipaa-genetic-information-2013

Topics: genetic-privacy, health-insurance

Canonical source file: data/federal/federal-hipaa-genetic-information-2013.yaml

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 1.0. Accessed [date].

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