To safeguard individual privacy of genetic information from the misuse of records maintained by agencies or their contractors or grantees for the purpose of research, diagnosis, treatment, or identification of genetic disorders, and to provide to individuals access to records concerning their genome which are maintained by agencies for any purpose.
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.
Introduced in House
Introduced in House
Referred to the House Committee on Government Operations.
Referred to the Subcommittee on Government Information, Justice and Agriculture.
Referred to the Subcommittee on Legislation and National Security.
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