Ethics Governance
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| Article - Abstract. To view full article click on the article title. | |
eMJA: Privacy legislation and research To the Editor: The Victorian Health Records Act 2001 became operational on 1 July 2002. This legislation provides important protection for the individual against misuse of health information through the establishment of Health Privacy Principles. We support the spirit of this legislation, but would like to draw attention to its potential effects on multicentre research and disease surveillance. We recently began a study to estimate the burden of invasive group A streptococcal disease in Victoria. The study involves identification of patients through laboratory notifications, followed by collection of clinical data — a strategy similar to surveillance of notifiable diseases. The study is funded by the National Health and Medical Research Council. We have sought institutional ethics committee approval, and are obtaining individual informed consent from patients. Despite approval from the Human Research Ethics Committee of the Victorian Department of Human Services, concerns arising from the new privacy legislation led most Victorian healthcare institutions to also require approval by their own ethics committees. We have now applied to over 30 separate committees, and the process is not yet complete. This has been an enormous drain on resources, has necessitated our establishing complex administrative procedures, and delayed commencement of the project. Full Article: http://www.mja.com.au/public/issues/177_09_041102/carapetis_041102.html |
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2006 Ethics-Governance.com |
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