No good deed goes unpunished: Open knowledge and the publication of sensitive research
This post will discuss sensitive issues such as suicide, self-harm and eating disorders.
When I use the term “open knowledge”, this refers to data that is accessible, meaningful, useful, and usable by anyone.
The Good Deed
As a PhD student researching suicide and self-harm, I had dutifully nodded along to seminars and workshops that highlighted the importance of sharing research, publishing in an open-access journal, and presenting your work to peers and the public.
It was a conference talk presented by a researcher from another university that forced me to question what openness means in the field of suicidology (yes, that’s the term), and what it means to hold and distribute what could be considered “dangerous” knowledge. Her presentation discussed methods of suicide. Prior to the talk, she requested the audience to keep the finer details to themselves, without tweeting, posting or otherwise sharing any specific information to the general public. Until that point, I had not given much thought about the concept of openness and its intricate relationship to the phenomenon I was researching.
After the talk, my mind drifted to the “Last draft final FINAL7” of the first publication for my thesis, signed off by my supervisors and ready to be submitted to an open-access journal.
What would a suicidologist take away from this article, if it was published? Hopefully, knowledge on how culture and gender can influence suicide prevention. And then I had to consider the more uncomfortable question: What kind of information would a person who was suicidal gain from my paper? Information that could, if used in a certain way, be dangerous for them, I had to admit.
The Punishment
Studies have examined the ethical issues raised by the relationship between open knowledge and mental health. It is concerning that there are a number of websites that encourage self-harm and eating disorders. Fortunately, preventative information about suicide is more prevalent online compared to harmful content. However, search engine results can still provide accessible material that pose a threat to vulnerable individuals. Openly available information about suicide may influence suicide rates. Some of this “pro-suicide” information may have come from well-intentioned academic research such as mine; a worrying interpretation of the R’s of revise, remix and reuse.
Although this elevated my concerns regarding openly accessible knowledge, I did end up publishing the paper in an open-access journal. I made this decision for three reasons.
Reason 1
My PhD is funded by a government body. All the research I produce has been funded by taxpayers, and therefore I agreed with the point that Kate Holmes raised in their blog; research of this kind should be publicly available. Although not a practical requirement, it was an ethical obligation.
Reason 2
My dilemma about open-access publication made me question my own biases regarding information privilege. Why did I think only a certain group of people should have this information? The logic was that the prohibitive costs required to buy online articles would guarantee that the people who were able to access this paper would almost certainly have an institutional affiliation. This would ensure that only “students” and “professionals” could read this sensitive content for the purpose of academic research. This line of reasoning highlighted an elitist belief — the idea that those with an institutional licence or purchasing power would use this knowledge for public benefit, and those without would use it for personal harm.
This belief is at best naive, and at worst, harmful. It was shortsighted to assume that only those affiliated to a university or an NHS trust could contribute to the field of suicide prevention. Survivors and the bereaved do some of the most important campaigning and actively contribute to suicide prevention. Conversely, many researchers and students have lived experience of suicide, and many live with the burden of suicidal thoughts. Therefore, not publishing my article in an open-access journal would not necessarily benefit anyone. Rather, it might exclude those who might find it more useful, and those who might not have the means to pay for articles.
Reason 3
My paper, despite its potential to cause harm, was intended to prevent harm. I did not want any individual or organisation who was working in the field of suicide prevention to miss out on relevant information because they did not have an institutional subscription or the money required to purchase a copy, as is often the case for mental health charities. Most importantly, my research was focused on suicide in India, my home country. When I was a student in an Indian university — one that subscribed to a relatively high number of journals — I had spent weeks emailing friends in the Global North to retrieve papers, and had often refreshed ResearchGate to see if an author had responded to my request for their paper. This cycle of restricting knowledge was one I did not want to perpetuate.
Concluding Thoughts
Although there are guidelines on safe suicide prevention messaging, I could not find much guidance on best practice for publishing sensitive research, especially in the field of suicide. Applied to my practice, this has been a journey of trial and error, a careful balancing act between conveying the realities of what leads to suicide, and offering hope and evidence-based strategies to prevent it. In contrast, my second study included interviewing individuals. Universities have published clear guidance on how qualitative data can be made open, and there is literature on how participants engage with this process. In short, I was greeted with a wealth of information surrounding open knowledge as it relates to sharing qualitative data.
Ideally, similar guidelines should be provided to researchers, especially early career researchers, who work with similar, sensitive information. It was difficult to find relevant material when writing this blog post, which provided the motivation to be open about my own experience.
Or perhaps the guidelines are available, but not open enough to be accessed so easily.
