Human Genome Privacy Act

Summary

Human Genome Privacy Act - Part A: Definitions - Sets forth definitions for purposes of this Act, including defining "genetic information" to mean any information that identifies all or any part of a genome identifiable to a specific individual. Part B: Rights of Inspection, Correction, Notice, and Authorized Disclosure - Requires a Government agency to permit an individual to inspect and have a copy of any genetic information the agency maintains about the individual. Sets forth procedures for correcting or supplementing genetic information held by an agency. Requires each agency to prepare, and on request provide a copy of, a written notice of genetic information practices. Prohibits an agency from disclosing genetic information except to the individual or the individual's representative, when the individual has authorized disclosure, or as otherwise authorized under the Act. Sets forth procedures for authorized disclosures. Requires an agency that provides by contract or grant for the maintenance, development, analysis, or identification of genetic information to cause the requirements of certain provisions of this Act to be applied to such information. Provides for the rights of incompetents and minors. Part C: Disclosure of Genetic Information Without Authorization - Allows unauthorized disclosure: (1) within an agency for official use; (2) to a medical professional for use in connection with care or treatment of the individual; (3) for specified health and safety reasons; and (4) as directed by a court. Part D: Law Enforcement Functions Access Procedures Challenge Rights, and Reporting - Allows unauthorized disclosures to a law enforcement agency for identification or location of a suspect or fugitive. Sets forth: (1) access procedures for law enforcement summonses, subpoena, warrants, and search warrants; and (2) challenge procedures for law enforcement summonses and subpoena. Part E: Enforcement - Establishes criminal penalties for requesting or obtaining genetic information or an authorization from an individual through false pretenses or theft. Authorizes a civil action by any individual whose rights have been knowingly or negligently violated. Sets forth criminal penalties for knowing improper disclosure of information, failure to meet notice requirements of this Act, and requesting or obtaining information under false pretenses.

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2 official files

• Introduced in House (text)

  Introduced in House · EN

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• Introduced in House

  summary · EN · 13 September 1990

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