Q Are there any specific privacy law requirements to protect genetic data from a consumer? A Genetic information connected to personal identifiers is generated and used in a variety of contexts that may or may not be health-related such as clinical genetics, direct- to-consumer (DTC) testing, and forensics. A variety of laws govern the collection, use, and sharing of this highly sensitive type of data. Genetic data is covered by HIPAA, which prohibits use or disclosure of non-deidentified genetic data. The Genetic Information and Nondiscrimination Act of 2008 (GINA) protects the genetic privacy of the public, including research participants, and prohibits health insurers or employers from requesting or requiring genetic information of an individual or of a family member and further prohibits the discriminatory use of such information. The collection and use of genetic data for government- funded biomedical research containing human subjects in the U.S. is governed by the Common Rule, which sets forth disclosure and informed consent requirements for genomic research. Additionally, there are various state laws governing genetic data, such as Florida’s DNA Privacy Law and California’s Genetic Information Privacy Act (GIPA) that govern the use of an individual’s genetic data collected by direct-to-consumer genetic testing companies.
IP ESSENTIALS: DATA PRIVACY
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