President's Commission for the Protection of Human Subjects of Biomedical and Behavioral Research Act

Summary

President's Commission for the Protection of Human Subjects of Biomedical and Behavioral Research Act - Amends the Public Health Service Act to establish the President's Commission for the Protection of Human Subjects of Biomedical and Behavorial Research. Directs the Commission to issue a report every two years on the protection of human subjects of biomedical and behavioral research. Directs the Commission to complete any of the duties, and to periodically issue reports on this work of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, which remain unfinished on the date of enactment of this Act. Directs the Commission to study the ethical, social, and legal implications of: (1) advances in biomedical and behavioral research technology; and (2) resource allocation decisions concerning health care research and delivery. Directs the Commission to issue a report on such studies every three years. Directs the Commission to undertake studies: (1) to identify the requirements for informed consent by patients before they receive any medical treatment regardless of the setting of such treatment; (2) to investigate and study the matter of defining death including the advisability of developing a uniform definition of death; (3) to investigate and study the ethical, moral, social and legal implications of voluntary testing, counseling, and information and education programs with respect to genetic diseases and conditions; (4) to access and evaluate current procedures and mechanisms designed to safeguard the privacy of research subjects to ensure confidentiality of patient records, and to ensure appropriate access to information contained in such records by such patients; and (5) to investigate or study any other appropriate matter consistent with the purposes of this Act on its own initiative, at the request of the head of a department or agency, or at the request of a committee of the Congress. Directs the Commission to issue reports on such studies upon their completion. States that personal data collected by the Commission pursuant to this Act may not be disclosed to any person other than the individual who is the subject of the data. Authorizes each head of an executive or military department to establish an ethics advisory board to advise him or her on ethical and moral issues involving activities of the department.

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Documents

2 official files

• Passed Senate amended

  summary · EN · 26 June 1978

  Open at official source

• Introduced in Senate

  summary · EN · 23 February 1978

  Open at official source

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