Protecting human research from an invasion of privacy: the unintended results of the Commonwealth Privacy Act 1988.
In accordance with the Privacy Act 1988 (Cth), interium guidelines for the protection of privacy in the conduct of medical research have been issued by the National Health and Medical Research Council (NHMRC) with the approval of the Privacy Commissioner. The guidelines are intended to ensure that the privacy of the individual is not interfered with when a researcher seeks the release of personal information held by a Commonwealth agency, or when a Commonwealth agency conducts medical research, and to ensure that the conduct of medical research is not inhibited by the privacy legislation. However, the procedures established by the guidelines and the responsibilities placed upon researchers and institutional ethics committees could themselves have the effect of inhibiting research. In considering amendment, NHMRC and the Privacy Commissioner are urged to produce final guidelines which do not act as the straw to break the back of the current system of institutional ethics committees, which seeks to ensure proper ethical scrutiny and the facilitation of human research.
Department of Law, University of Newcastle, NSW.
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Bentley-Cooper
D026683:Advisory Committees; D035843:Biomedical Research; D002961:Civil Rights / Q000331:legislation & jurisprudence*; D003219:Confidentiality / Q000331:legislation & jurisprudence; D026724:Ethical Review; D017041:Ethics Committees / Q000331:legislation & jurisprudence* / Q000592:standards; D028744:Ethics Committees, Research; D033161:Government Regulation; D006805:Human Experimentation; D006801:Humans; D009517:New South Wales; D012106:Research / Q000331:legislation & jurisprudence* / Q000592:standards; D012108:Research Personnel / Q000331:legislation & jurisprudence / Q000592:standards; D035842:Research Subjects; D012941:Social Responsibility; D013997:Time Factors