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ResourcesHuman Research Ethics(US) UCSD has not told women with HIV of data breach, despite researchers’ pleas – inewsource (Jill Castellano & Brad Racino | May 2019)

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

(US) UCSD has not told women with HIV of data breach, despite researchers’ pleas – inewsource (Jill Castellano & Brad Racino | May 2019)

 


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University of California San Diego officials stonewalled attempts to notify women in an HIV research study that their confidential data was breached more than seven months ago, an inewsource investigation has found.

The commentary sidebar on the inewsource website sums up well why this is a big deal. If the story is correct, the breach is serious enough, but the failure to warn the women was a complete betrayal of trust.

UCSD researchers conducting the EmPower Women study told university officials in October that participants’ names, audio-taped conversations and other sensitive materials were made accessible to everyone working at Christie’s Place, a San Diego nonprofit supporting women with HIV and AIDS. They called the situation “very serious” and said the women affected are “within one of the most vulnerable and marginalized populations.”
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But internal emails, reports and meeting minutes chronicle months of communication between lead researcher Jamila Stockman — who pushed for telling two dozen women enrolled in the project about the breach — and UCSD officials concerned about the consequences.
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