Ethics Governance
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| Article - Abstract. To view full article click on the article title. | |
eMJA: Obtaining consent affects the value of the Western Australian autism register There is growing international awareness about the realities and difficulties of obtaining written informed consent from patients to compile and use data recorded in population-based registries. In some cases, such data could be of substantial benefit to the community, while posing relatively low risk of infringing patients’ privacy.1-3 The Canadian Stroke Registry achieved only a 39% participation rate from 4285 eligible patients when applying a policy of written informed consent to their data collection, resulting in significant representation bias.1 The issues and consequences are mirrored in our own endeavour, since 1999, to maintain a prospective register of people diagnosed with autism spectrum disorders in Western Australia.4 As protocol, diagnosing clinicians in Western Australia ask parents for written consent to allow their autistic child’s name, date of birth and postcode to be forwarded to the register. However, for many reasons, parents are not always asked and diagnostic information is not always forwarded. Missed cases are collected annually from the major diagnostic and service provision centres, but only the sex and year of birth are recorded for the child. Full Article: http://www.mja.com.au/public/issues/181_09_011104/letters_011104-2.html |
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2006 Ethics-Governance.com |
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