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ResourcesHuman Research Ethics(Australia) Medicare data used to recruit people with bipolar for research – Sydney Morning Herald (Kate Aubusson | July 2019)

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

(Australia) Medicare data used to recruit people with bipolar for research – Sydney Morning Herald (Kate Aubusson | July 2019)

Published/Released on July 29, 2019 | Posted by Admin on July 29, 2019 / , , , ,
 


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A letter sent to almost 50,000 patients prescribed lithium inviting them to take part in a bipolar study has raised questions about how Medicare stores and uses private healthcare information.

Shocking cases like this highlight the need for caution when recruiting using data held by a third party.  Even if a strategy is legal, did the potential participants understand their information was being held in an identified form and consent to being contacted about participating in future research projects (even if, as in this case their information won’t be shared)?

UNSW psychiatrist Professor Gordon Parker first became aware of a study investigating the genetics of bipolar when a former patient sent him an angry email accusing him of breaching her privacy.
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“She was furious with me, believing that she was contacted by Medicare because I had blown her confidentiality,” he said.
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But the letter had been sent by the Department of Health Services (DHS) on behalf of a research team at QIMR Berghofer Medical Research Institute inviting recipients to participate in a study exploring potential biomarkers for bipolar disorder.
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