Key ethical questions for research during the COVID-19 pandemic

In these times of rapid change, with high levels of uncertainty, anxiety, social isolation, and financial pressure, mental health worldwide is likely to be at risk. Researchers are rightly ensuring that mental health research is included in the response to the coronavirus disease 2019 (COVID-19) pandemic.¹ Here, we reflect on ethical issues to consider when conducting research on self-harm, suicide, and the broader impacts of COVID-19 in the midst of a global pandemic, and provide some recommendations to consider when researching these topics.

In non-pandemic times, research suggests that participating in self-harm and suicide studies is unlikely to cause substantial distress, even in the most vulnerable,² and that any detrimental effects are short lived and outweighed by altruism.³ However, we do not know whether this holds in the context of a global pandemic. Researchers around the globe have paused their work for several reasons. First, to avoid unnecessary burden on people who might be in distress during the pandemic. Second, because the context of the current research environment means that results will require cautious interpretation. Third, to ensure that continued recruitment of people to studies on self-harm and suicide when a global crisis is occurring is reasonable and safe; transferring face-to-face research online must be very carefully considered. Finally, because the supports and services that participants would be signposted to throughout a study might not able to provide support in the usual ways and formats.

Mental health research, including self-harm and suicide, is a vital part of the response to the pandemic, but we are concerned about the ethical robustness of some studies already recruiting. We have seen studies that do not provide sufficient information to enable fully informed consent, do not measure mood before or after participation, do not provide any signposting other than to potentially anxiety-provoking messages about COVID-19, and do not attempt any kind of mood mitigation or debrief to help to stabilise anyone that does become distressed after participation. We would recommend that researchers be mindful that general research into the impacts of COVID-19, even if this does not evaluate mental health, self-harm, or suicide, should be viewed as a highly sensitive topic, with similar attention to safeguards needed to protect the wellbeing of participants.

We recommend that all studies into COVID-19, self-harm, and suicide measure mood before and after participation; a simple visual analogue scale has been used to good effect in several studies.⁴ These mood measurements can also be used to decide whether a study can ethically continue, with a stop-study criterion set and applied if participants report very decreased mood after participation. Researchers should provide signposting and check that the services signposted to are operational and able to provide support (and in what format). Finally, providing mood mitigation to all participants is an important method to boost mood, particularly when participants have been asked to consider anxiety-provoking questions about COVID-19 and answer sensitive questions about self-harm or suicide. A number of methods including exam howlers,⁵ cute animal pictures,⁴ interactive websites,⁶ and so-called doodle pages⁷ have been shown to work for young people. The ethics of voucher lotteries and other incentives for participants in studies on suicide and self-harm have been questioned by lived experience authors.⁸ Valuing the time of participants who contribute to these studies and respecting the challenges of taking part in research on difficult topics is important at a time of financial difficulty for many, particularly when there is little access to supports.

For new work evaluating COVID-19 and mental health impacts, patient and public involvement must be central to prioritising and designing research studies. Indeed, the MQ COVID-19 and mental health initiative¹ includes people with lived experience in the 18 members of their leadership team. This would be strengthened if people with lived experience were among the core leadership team (currently comprised of six senior academics). More than ever, it is crucial that patient and public involvement is embedded into research and that lived experience advisors are supported effectively—both emotionally and financially. Sarah Knowles (University of York) has recently curated materials for researchers to facilitate effective co-creation and patient and public involvement in the digital world.⁹

For all research to be considered ethical, the benefits must be high and the risk minimised. The research community must be very clear about who will benefit from the research, how it can be implemented to inform policy and practice, and in what time frame. Clearly, ethics committees across the globe have a vital role to play in weighing these issues and in the context of a growing plethora of online studies. Given social distancing and lockdowns, an effective digital response is crucial. Clinical mental health services globally are having to mobilise staff digitally and remotely to meet current need. The research community also needs to respond effectively to the COVID-19 pandemic, but we must ensure that what we are doing is ethical.

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