The COVID-19 pandemic brought with it some predictable consequences for research: labs and universities across the globe were forced to shut their doors; large-scale collaborations ground to a halt; and many clinical trials were stopped or significantly curtailed. Mental health science was not immune to these disruptions, but as Sally McManus and colleagues write in The Lancet Psychiatry, some of our stymied research might have less to do with lockdowns and more to do with paternalistic practices many institutions still engage in for mental health research. McManus and colleagues discuss the role that ethical review committees play in approving research, noting their importance in ensuring the safety of participants. But they also highlight the unintentional consequences some ethical review committees' decisions have had on our understanding of population mental health during the pandemic.
Large-scale population surveys provide crucial insights for our understanding of mental health and trends over time, allowing governments to set priorities and enact or change policies accordingly, as well as guiding future research and funding into specific areas. Certain topics in mental health, however, are considered inherently riskier to ask about than others, the prime example being suicidality. Is it ethical to ask about suicidal thoughts and behaviours when you cannot ask face-to-face and provide immediate suicide prevention resources? Likewise, is it ethical to ask about traumatising events, and potentially retraumatise participants in the process, knowing that usual services in the region have been cut back or shuttered? These are difficult questions ethical review committees, as well as researchers, have had to deal with owing to COVID-19. Unfortunately, the solution for many committees and researchers has been simply to stop asking about suicide, self-harm, and other potentially traumatising events. While this might seem like a practical step to help reduce risk, McManus and co-authors ask us to see this solution from a different perspective and to ask equally important questions: whose risk are we really concerned about, and who gets to decide?
While COVID-19 has changed many things in research, institutional bureaucracy and pressure on investigators to remain hyper-productive have remained largely untouched. Institutions want to limit their individual risk, both legal and ethical, and researchers just want to get on with their work. The path of least resistance, therefore, has been to remove questions about traumatising events in surveys, and change common tools like the Patient Health Questionnaire-9 (PHQ-9) into the PHQ-8 to avoid asking about suicidal thoughts. This reflexive, default decision causes important concerns. First, not asking about suicidal thoughts, self-harm, or traumatising events does not make them disappear for the individuals experiencing them; they simply go uncounted. Intentional or not, this absence of recording increases the risk for those who need help, and for whom research is supposedly done in the first place. As McManus and colleagues note, the risks associated with asking certain questions are real, but there are ways to manage those risks that do not require deleting the questions altogether. Another key point they raise is who serves on these ethics review committees and gets to make decisions about what is and is not too risky for research.
While the research community has voiced concerns about lack of sufficient diversity in authorship, peer review, and who receives funding, lack of diversity on ethical review committees has gone relatively unnoticed. Diversity on these committees in gender, race, and lived experience is crucial to ensuring that historically ignored communities do not go unaccounted for in approved research. As McManus and colleagues write, when participants are deemed too vulnerable—or too difficult—and are excluded on the basis of what others consider to be in their best interests, the wedge between research and the real world will continue to grow, leaving the field with biased outcomes and major gaps in the evidence base. More diversity in our ethical review committees can help ensure that decisions about risk and research are based on feedback, not assumptions, and that participants are more representative of the people whom we want to benefit from our work. For mental health research to be better in the wake of COVID-19, it will need to be more equitable, and equity, in any field, starts with what questions are asked.
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