Why Has UCSD Failed to Notify HIV Patients of Data Breach?

Data breaches are already upsetting enough, especially when your highly-sensitive personally identifiable information is put at risk. But when it comes to data breaches and fraud, perhaps there’s no greater intrusion than to suffer a data breach of your medical information; somehow though, even that kind of intrusion pales in comparison to being victimized in a breach then victimized again by the company who failed to inform you about it.

Now imagine that the medical information that was breached is of the most private nature, one that could have serious consequences for the victims should it get out.

University of California-San Diego partnered with a health services industry organization known as Christie’s Place to recruit participants for a vital, worthwhile study. The study’s subjects were all HIV-positive women who were examined on their commitment to treatment based on experiences with domestic violence, trauma, mental illness, and substance abuse. Unfortunately, the entire case file for all of the study’s participants was left visible in the computer—accessible to literally anyone who worked or volunteered with Christie’s Place.

Somehow, this data breach has taken yet another upsetting turn: UCSD decided not to inform the patients that their information has been exposed. The details on who was behind that decision have not been very clear, but as of recent reports, the patients are still unaware.

There are some very unclear details emerging from this, including allegations of misconduct and even possible attempts to inflate the numbers of patients receiving support. However, none of those accusations has been proven. More information on those matters can be found here.

In the meantime, the very least that can be argued about this breach and the failure to notify is that patients have not been given an opportunity to take action to secure their information. Some of the participants also may have not shared news of their diagnoses with others, and a violation of this kind could have serious consequences for them. The university has stated that it will notify patients very soon, but there is no specific timeline for that to take place.


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