What are the ethics around research during a global pandemic?
By Elizabeth Kiely and Ciara Heavin, UCC
Yet another survey has just arrived into our email inbox to explore how we were coping with our new normal. We coined the term “covidata” to describe the insatiable need and demand for data currently being driven by the pandemic and likely to continue for some time.
Social research ethics committees are reviewing Covid-19 related studies and considering a range of research questions exploring the effect of the global pandemic on different groups’ knowledge, attitudes and practices. These include university students, academics working in their new virtual environments and employees working in small and large business and not-for-profit organisations. Against the current backdrop, these studies are asking questions about how we work and live, what we are buying, our experiences of homeschooling and how we are coping with the stress/pressure/anxiety as we deal with all of our new, albeit temporary, reality.
There is no doubt that the coronavirus has created new opportunities for big research ideas that could potentially directly inform local, national, and international practice, policy and research during and after the pandemic. However, ethical, mindful and responsible researchers need to give careful consideration to the timing and the manner by which research is conducted. For example, a recent article published in the Lancet Psychiatry noted that some studies in the area of self-harm and suicide have been paused for a number of reasons. These include the unknown unnecessary burden they may be putting on participants who may not have the same access to the services and supports they used pre-pandemic.
Certainly, Covid-19 is presenting researchers and students with new challenges in the research field, which can cause stress and anxiety. We are now required to reorient our inquiries, adopt new methodologies or modes of engagement and develop revised ethical protocols as required. Our research may be moving online posing new ethical challenges that require careful consideration. Timelines and budgets for research projects commenced pre Covid-19 have to be reconsidered.
In times of stress such as this one, speedy solutions are sought and there is the risk that extraordinary measures introduced during extraordinary times continue to be used in ordinary times and can be re-purposed in ways that were not foreseen. For example, various technological solutions such as digital contact tracing apps have been adopted or proposed by governments in different countries to prevent virus transmission. Their use at the time of a pandemic does not remove or downplay human rights, privacy or cost concerns. They must be rigorous questioning as to the risks these solutions pose and the limits of what they promise.
It seems more important than ever that ethical standards required for the conduct of research are not slackened. Rather, the current situation provides opportunity for everyday ethical engagement. Writing in Nature, Gemma Derrick speculated that this new era may prompt us to examine our research motivations.
We could use the momentum of Covid-19 to firmly embed kindness into research practice
“A once narrow, competitive drive to collect data for our individual research ambitions has been replaced by dialogue about whether now, with everyone’s mind otherwise occupied, is really the best time to be collecting data?”, Derrick wrote. “This goes beyond concerns about data reliability and reproducibility, towards a type of empathy and foresight that is the bedrock of research kindness. We could use the momentum of Covid-19 to firmly embed kindness into research practice, extending greater goodwill beyond this, temporary, situation.”
As we pause our “normal” lives, is it also time to pause for thought to critically reflect on our motivation to conduct particular types of research? While pausing, we might consider what naturally occurring or already existing data is available that can be successfully mined to answer new questions. For instance, how can data gathered during previous pandemics / epidemics be of benefit to us during this one?
We can turn to secondary data collection or identify further potential in previously collected primary datasets. We can conduct systematic reviews, rapid reviews, meta-analyses or advance new inquiries using already existing datasets held in digital repositories. Undoubtedly, reflective diaries, lockdown journals, oral histories, and other creative outputs produced during Covid-19 will provide rich resources for research.
We can do our utmost to ensure that the data we are gathering is adding value
As the demand for “covidata” intensifies, we need to be mindful not to cause research fatigue. We need to consider how vulnerable individuals and constituencies can be real beneficiaries of our research while taking care not to over-research them or to compound their vulnerability. We can direct our research gaze upwards so that the activities of corporate elites, key decision makers, and powerful actors during Covid-19 do not evade the research spotlight.
We can take account of who is benefitting from our research findings and in what ways. We can guard against ourselves or others over-claiming the significance of our research findings, which may require considered analysis and interpretation as to their relevance for ‘normal’ times. We need to assess how and why our research findings may find their way into policy and practice or if not, why not.
If we produce careful data management plans at the outset of our research projects, we can better ensure the preservation of the data we gather for future use by ourselves and others facilitating opportunity for re-analysis and new interpretation. We can do our utmost to ensure that the data we are gathering is adding value and that our research outputs are FAIR (Findable, Accessible, Interoperable, and Reusable) and timely.
Dr Elizabeth Kiely is a Senior Lecturer in the School of Applied Social Studies at UCC. She is a former Irish Research Council awardee. Dr Ciara Heavin is a Senior Lecturer in Business Information Systems in the Cork University Business School at UCC. She is a former Irish Research Council awardee
Source: rte.ie