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Another case involving research data confidentiality hits the courts

This second case in the past year, also involving a Quebec court, resolved in favour of a Western University professor.

By DIANE PETERS | APR 24 2017

Courts in Canada seldom demand raw research data from academics. But, over the last year, two separate legal cases have led to academics being asked to open their files in the name of justice.

The earlier of these two cases, a civil case involving Université du Québec à Montréal adjunct professor Marie-Ève Maillé, has not yet been resolved. The other, more recent case, involving a Western University researcher and the Superior Court of Quebec, has been decided and may influence the direction of future cases, said those involved.

Dr. Greta Bauer. Photo courtesy of Western University.

The most recent case dealt with quantitative data, which may be harder to keep out of court than qualitative data because it’s considered unidentifiable. But, “it’s not,” said Greta Bauer, whose research on transgender Canadians was the subject of the case. Dr. Bauer, an associate professor and graduate chair in epidemiology and biostatistics with the Schulich School of Medicine and Dentistry at Western, said information such as postal codes and ages could be pulled from her research and used to identify respondents.

Western was fully supportive of her case, said Dr. Bauer, providing legal help and submitting an affidavit. This immediate support differed from previous cases in Canada, where universities supported the researchers only later in the process, usually after other parties got involved and urged them to act, said Ted Palys, a professor in the school of criminology at Simon Fraser University and co-author of the book Protecting Research Confidentiality.

Thanks perhaps to decisive action on the part of Dr. Bauer and her supporters, the case was resolved quickly. And while the judge’s decision has only been officially published in French, the case “could serve as a precedent for other cases,” said lawyer Audrey Boctor, who was involved in the case. “Though it is decided under Quebec law, it applies the common-law Wigmore case-by-case privilege which applies across Canada.” (The so-called Wigmore criteria is a common law directive that balances the value of a confidence against the injury caused by keeping the information private.)

Dr. Bauer’s battle for data privacy began when the Centre for Gender Advocacy in Montreal began a Superior Court challenge of Quebec’s rules regarding how and when transgender people can legally change their gender on government documents. Since Dr. Bauer runs the Trans PULSE Project, which works with community partners to collect physical and mental health data on the trans population in Canada, she was asked to serve as an expert witness and submitted an expert report in February 2015. Of central interest to the case was Dr. Bauer’s 2014 study that connected a lower suicide risk with having official documents changed to reflect a person’s lived gender. “It’s a dignity issue,” said Dr. Bauer.

A year later, in early 2016, the Attorney General of Quebec, the plaintiff and its team of experts asked to see Dr. Bauer’s research. She refused, offering to show them the outputs from her data but not the data itself. The plaintiff filed a motion in May 2016 demanding access to survey questionnaires and respondents’ answers, promising to preserve confidentiality and security. Dr. Bauer then went to the research and ethics office at Western for help.

From there, Mark Daley, the associate vice-president of research, Western’s legal team and Ms. Boctor, a partner with Irving Mitchell Kalichman LLP who is representing the Montreal centre at the heart of this case, took over. They submitted affidavits to the court, including a letter written by Dr. Daley explaining that opening up research data to the courts would put a chill on academic projects, particularly those involving vulnerable populations. “We have to protect our research subjects,” said Dr. Daley. “If we fail to do that, research on these groups won’t get done. If this becomes the standard operating mode of courts, entire areas of research are going to dry up.”

The hearing last fall resulted in an October 2016 decision in Dr. Bauer’s favour. Superior Court Judge Marie-Anne Paquette decided access to data outputs and the peer review process, plus the plaintiff’s ability to cross-examine Dr. Bauer in court, would ensure the research could be assessed for its validity. Also, protecting research participants mattered more than seeing the raw data.

“It is in the interest of the public that the relationship of trust and confidence between scientific researchers and the human subjects that participate in their research be valorized, respected and protected … weakening this trust relationship could limit and harm the quantity, the quality, and the scientific value of the information that is put at the disposal of researchers,” she wrote in an unofficial translation provided by the lawyers.

After “not a great six months,” Dr. Bauer said she is relieved that this aspect of the case is resolved and said she is still willing to testify at the ongoing trial. At one point, prior to the ruling, “I thought I’d have to leave the field,” she said. It had taken years to build up trust with her research subjects, and if they feared their responses might be used in court, she worried that they’d offer up less-than-honest replies, if they participated at all. For her next project involving trans youth, she said she’s being extra diligent about clarifying confidentiality on all documents and being precise about who can access the data and who cannot.

While this research data request is now resolved, the case involving UQAM’s Dr. Maillé has not. Her research materials, collected for her PhD thesis on a community’s reaction to a local wind farm, have been compelled for use in a civil case. Dr. Maillé said she struggled at first to get university support but now has it, as well as the backing of several organizations. A hearing scheduled for May 17 will consider the issue.

Dr. Maillé’s case, and those in the future, may benefit from Judge Paquette’s detailed judgment. Those involved in these cases, and those who work with human research respondents and the research community at large, stand firm on their belief that confidential research data does not belong in trials. “I understand the world is almost always shades of grey,” said Western’s Dr. Daley. “But this is getting close to a black-and-white argument for me.”

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