title: Data registers in respiratory medicine: a pilot project evaluating compliance with privacy laws and the National Statement on Ethical Conduct in Research Involving Humans.
abstract: This article reports on data from a small pilot survey evaluating the compliance of voluntary databases in respiratory medicine with privacy laws and the National Health and Medical Research Council's National Statement on Ethical Conduct in Research Involving Humans. The increasing complexity of privacy law, including the recent private sector amendments, creates many challenges for database administrators. The impact of privacy laws upon voluntary or non-statutory databases, and upon doctors reporting patient data to such databases, is far from straightforward. The article suggests way in which the law might be adapted in order to better facilitate the role of voluntary data registers in health research and public health surveillance, while still protecting the privacy of patient information. The article also briefly considers how database administrators might "future-proof" their existing data holdings to ensure compliance with legal and ethical standards.
authors.affiliation: Concord Hospital, Sydney, Australia.
authors.forename: Christopher
authors.initials: C
authors.lastname: Clarke
authors.forename: Roger S
authors.initials: RS
authors.lastname: Magnusson
mesh_terms: D001315:Australia; D003219:Confidentiality / Q000331:legislation & jurisprudence*; D016208:Databases, Factual / Q000331:legislation & jurisprudence*; D030881:Disclosure; D004992:Ethics, Medical; D019983:Guideline Adherence / Q000331:legislation & jurisprudence*; D006805:Human Experimentation / Q000331:legislation & jurisprudence*; D006801:Humans; D010865:Pilot Projects; D012042:Registries; D012106:Research; D012120:Respiration Disorders / Q000453:epidemiology*