$1M study at U of M paused after personal health info of 420 participants is breached
Study was led by Peter Jones, who was suspended by the university last year
A $1-million study once led by Peter Jones — a professor under investigation by the University of Manitoba — is on pause and its research is in jeopardy after an audit revealed the personal health information of more than 400 participants was breached.
Letters went out on Tuesday to 420 participants of The Manitoba Personalized Lifestyle Research Program (TMPLR) — a study that looked at how genetics and lifestyle influence chronic diseases — informing them of the breach under The Personal Health Information Act.
It informed them their health information was "not handled, stored or secured properly." According to the letter from the university's access and privacy office, an audit of the program found data was being stored off-site, without encryption, allowing the potential for it to be accessed by a third-party company.
The study was announced in 2016 and was led by Jones, who was suspended as the director of the Richardson Centre for Functional Foods and Nutraceuticals in December 2018 after allegations of bullying and misconduct were made public.
It was funded through a $1-million grant from Research Manitoba — a provincial funding agency which receives the lion's share of its funding from the provincial government. CBC's request for comment was not returned by the agency.
It was supposed to be a four-year study that would recruit 1,200 participants to look at the correlation between lifestyle — including diet, activity and sleep — and chronic diseases such as diabetes. Participants would undergo scans to measure body composition and physical activity testing. They would also wear activity monitors for a week to access their activities and sleep patterns.
The announcement of the PHIA breach means all the tests and data from the 420 participants will be destroyed and will no longer be used in the study.
"Therefore, your data will not be further analyzed, no test results will be available to you in the future, and your data will be securely destroyed. We apologize again for any concern, inconvenience or disappointment this may cause you," read the letter sent to the participants on Tuesday.
The study will be paused pending internal review
Manitoba's ombudsman was informed of the breach on Jan. 15.
John Danakas, a spokesperson for the university, said there is "no evidence" to indicate there was any unauthorized access to the data.
"Therefore the likelihood that personal information was accessed or viewed inappropriately is very low," he said in an email statement.
Danakas did not address whether the audit or the breach had any relation to the investigation on Jones, saying "we cannot discuss personnel matters. The university accepts responsibility for the breach."
No publications have been made using the data, he said.
The study was supposed to wind down at the end of December, but the use of all personal data collected for the study is on hold and all data is being stored at a protected site within the university.
"The study will be going through further internal reviews prior to restarting," Danakas said.
The CBC has attempted to contact Peter Jones for comment.