The HITECH Act Final Rule’s GINA-Related Modifications to HIPAA

The Genetic Information Nondiscrimination Act of 2008 (GINA) prohibits health insurers and health plans from discriminating against beneficiaries on the basis of genetic information.  The HITECH Act Final Rule makes some important GINA-related changes to HIPAA.

In general, the changes related to genetic information are solely of interest to health insurers and health plans.  With that said, the Final Rule’s amendment to the definition of “health information” to include genetic information is relevant to all covered entities.  Under this new definition, all HIPAA covered entities must ensure that the following information is protected and secured under the HIPAA Privacy and Security Rules:

1. Any information related to genetic tests of an individual.

2. The genetic tests of family members of an individual.

3. The manifestation of a disease or disorder in family members of an individual. “Manifestation” means a disease, disorder, or pathological condition that an individual has been or could reasonably be diagnosed with by a health care professional with appropriate training and expertise in the field of medicine involved.

4. Any request for, or receipt of, genetic services, or participation in clinical research which includes genetic services, by an individual or any family member of the individual.

Additional GINA-related changes to HIPAA under the Final Rule include an explicit prohibition on the use or disclosure of genetic information for a health insurer’s or health plan’s underwriting purposes. There is an exception for underwriting performed by issuers of long-term care policies.

The Final Rule also requires a health plan or health insurer to include a statement in its notice of privacy practices that it will not use or disclose genetic information of an individual for underwriting purposes. Again, there is an exception for issuers of long-term care policies.

If you would like more information about the Final Rule’s GINA-related modifications to HIPAA, please contact Casey Moriarty.

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