Protecting health information privacy in research: what's an ethics committee like yours doing in a job like this?
The Commonwealth and State legislation designed to protect the privacy of personal health information has attracted the criticism that the constraints imposed on the use of the information in research obstructs that research. A central and common feature of the legislation is the reliance upon the review by human research ethics committees of research that proposes to use personal health information for research without prior consent from those whose information it is. The origins of this reliance are explored and explained and it is suggested that this has proved to be an inappropriate policy choice. The extension of the reliance is then described and the conceptual, procedural, workload and structural consequences of requiring these voluntary committees to conform to legislative standards of review of issues of the public interest are critically examined. In recent reviews of the Commonwealth legislation, there is recognition of the underlying uncertainty as to the appropriate balance between protection of personal privacy and the promotion of beneficial research. In the further exploration of these matters that those reviews recommended, a close and critical examination of the wisdom of continuing to rely on ethics committees is needed.
Thomson
Colin
C
Faculty of Law, University of Wollongong. Colin.Thomson@health.gov.au
D001315:Australia; D003219:Confidentiality / Q000941:ethics* / Q000331:legislation & jurisprudence*; D028744:Ethics Committees, Research / Q000331:legislation & jurisprudence*; D032984:Ethics, Research; D019983:Guideline Adherence; D017408:Guidelines as Topic; D006801:Humans; D035842:Research Subjects / Q000331:legislation & jurisprudence*