Women in HIV Research Study Were Not Told by UCSD of Data Breach Despite Pleas by Researchers

by on May 17, 2019 · 0 comments

in Health, San Diego

By Jill Castellano & Brad Racino / inewsource /  May 14, 2019

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.

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.”

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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Why This Matters:

When people volunteer to be human research subjects, they accept potential health risks in order to contribute to a growing bank of scientific and medical knowledge.

Their medical history, blood, organs, DNA or participation in drug trials can help improve the diagnosis and treatment of diseases, or develop new technologies to help people live longer, healthier lives.

The researchers are expected to follow ethical guidelines meant to protect their patients.


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