It is an obligation of those of us who work in research to protect the safety and confidentiality of the personal information that our participants share with us. This safety is critical to promote the trust required for people to participate, and to allow them to respond honestly to the sometimes very personal questions that are needed to do research on important issues. Those of us who have worked on Trans PULSE are deeply grateful to all of our participants for being willing to share their experiences, so that we could describe community experiences and analyse potential strategies to improve health and well-being. The work we have done has had a major impact on policy and practice in Canada and beyond.
Some of you may be aware that the security of these data was recently threatened, and that we have successfully defended the confidentiality of Trans PULSE data in court. I want to provide a bit more information and also to share the court’s decision, as it provides a helpful precedent if similar threats occur to other research projects in the future.
First, let me say that the confidentiality of Trans PULSE data were never really at risk. The Trans PULSE team, the lawyers and administration at Western University where I work, and the lawyer in the court case were all in firm agreement that the data must not be shared beyond the research team, as promised to our participants. If the decision had come out against me, we were all committed to appealing it.
Here is what happened. I am serving as a pro bono expert witness in the Quebec court case regarding the ability to change sex designations in civil records. During the course of this case, the other side (Quebec) filed a motion to force me to provide surveys and participants’ answers (raw data) to their expert witnesses so that they could do their own analyses. They were challenging our published findings that having legal ID that matches one’s gender may reduce risk of suicidal thoughts and attempts. I refused, and immediately sought help from Western. Western provided legal help (thank you Paul Eluchok). Paul helped me develop my affidavit to respond to the motion and worked on legal strategies. Western’s Associate Vice President for Research provided an affidavit from an institutional perspective, supporting my argument that this was a much broader issue for research (thank you Mark Daley). The lawyer in the sex designation court case and her law firm, IMK in Montreal, were fully supportive and brilliantly argued the motion, despite also working pro bono on this case (thank you Audrey Boctor). As I look back, I don’t think it could have been handled more perfectly. These people are all heroes. As a result, we won this motion, and set a precedent for protecting research data against future challenges.
While I believe that the other experts were unlikely to actually identify and attempt to harm any of our participants, the sharing of these data would violate the promises we made to participants when they agreed to complete our survey, and would violate the trust we worked hard to establish from the beginning of this project when the concerns of trans community members were clearly heard: “who are you and what are you planning to do with this information?” Sharing data in this context had the potential to damage not only our future ability to do research with trans communities, but to damage research more broadly in Canada. The kinds of research we need to inform current policy debates – changes to drug laws, sex work, HIV non-disclosure, mental health, assisted death – all require that research participants be willing to share highly personal information on their health and their experiences (including some that may be against current law). Moreover, if such court challenges are allowed to continue, they could be used to bully expert witnesses off of court cases. This would deprive the courts of the information they need to make informed legal decisions, while disproportionately excluding research involving communities that experience the most stigma and social marginalization, and that most need the protections of research confidentiality.
This case is only the fourth legal challenge to research data confidentiality in Canada. The first two were in criminal cases, the first involving assisted death early in the HIV epidemic, and the second the Luka Magnotta murder trial. In these cases, courts established that researcher-participant confidentiality exists, but must be evaluated on a case-by-case basis. The other two more recent cases were ours and an ongoing civil case involving access to data on residents near wind farms. Hopefully, the decision in our case will aid in resolving that ongoing case and prevent more similar cases in the future.
It is important that researchers be aware of these new developments in legal challenges to confidentiality outside of criminal cases. You can read more about our case in University Affairs. The court’s decision in our case can be accessed in the original French on CanLII, and the IMK lawyers have provided an unofficial English translation that they have given permission to share.
While our outcome was positive, we can do better. The security of individual participants’ personal information, including health data, should not depend on a specific researcher’s willingness to push back and risk the consequences. It shouldn’t depend on having legal data ownership within an institution that can and will provide strong legal support and additional affidavits of support. It shouldn’t depend on the pro bono contributions of lawyers in a case to argue additional motions and be willing to appeal. Going forward, we need a policy solution to make clear that personal research information has no place in the courts.