Ilina Singh: Anticipating, identifying, and responding to ethical controversy and uncertainty

The following is an edited version of Ilina Singh’s remarks at a UK Pandemic Ethics Accelerator event on 23rd May 2022, discussing the place of values in public policy during a pandemic

Professor Ilina Singh is the Principal Investigator of the UK Pandemic Ethics Accelerator. She is a Professor of Neuroscience & Society in the Department of Psychiatry and has been Co-Director of the Wellcome Centre for Ethics & Humanities at the University of Oxford since 2017. Her research focuses on the social and ethical dimensions of research and innovation in biomedicine, neuroscience and psychiatry.

The UK Pandemic Ethics Accelerator is a collaborative of different institutions across the UK. It’s an ongoing project and I’ll be reflecting on what we set out to do, what we’ve achieved and where we’ve struggled, and what we think needs to happen next.

Aspirations for the Accelerator

When we established the Ethics Accelerator (EA), one of our inspirations was that the UK is an ethics powerhouse. One the functions we envisaged for the project was to harness and mobilise that expertise. I use the term “expertise” broadly, because in our group we have social scientists, bioethicists, people from a medical background and others – all of whom work on ethical issues. We saw our work as a national endeavour and an opportunity to build a platform. In the same way that we had a COVID-19 economics observatory, we wanted to create something for ethics – but we called it an accelerator, because we wanted to accelerate the ethics input to the pandemic, not just observe it.

We also saw a role in enabling a systematic public deliberation around key ethical issues. We recognised that this was something the public wanted and around which we could organise. The role of the Nuffield Council on Bioethics was critical in this aspect, and we are pleased they were willing to join this collaborative.

We also wanted to think about strategies to embed ethics into the future pandemic preparedness. We talk about “pandemic recovery,” but I like to talk about “pandemic resilience” because it suggests we are contributing something sustainable for the future.

Challenges for accelerating ethics

One early signal that ethics wasn’t being seen as equally important as other matters was that UKRI’s COVID-19 Research and Innovation Fund, which initially promised a response within 10 days, ultimately was not able to respond to all requests in that timeframe. Instead it undertook a kind of prioritisation across different areas, and ethics was not at the forefront. This is something I am aware of because I sat on the strategy committee for the fund.  Perhaps this approach was fair enough in a pandemic. However there was a lot of dialogue through the Medical Research Council with researchers in medical fields, to identify the strategic needs and to prioritise them, but the Arts and Humanities Research Council (AHRC), which is where ethics fits, was not taking a similar approach to discussing needs. The awareness of the lack of ethics in the portfolio did not come until later.

We applied for funding in May and had a project ready to go and people in place, but we didn’t hear until six months later. By that time we were already behind in the game. We started in January 2021, and we expect to finish at the end of July 2022.

Early on we thought this should be a four nations project. If we’d have known it would have taken six months for a response, we’d have worked harder to build representation right across the four nations, but as it is we have the Universities of Oxford, Edinburgh and Bristol, University College London and the Nuffield Council on Bioethics. We also have an important policy and communications role held across the Nuffield Council on Bioethics and Oxford University.

The approach

We took a ground-up approach to come up with our priority areas. Each area was led by an expert and together we built a picture of what were the priority areas for work in this pandemic. As we went along, the different areas of work came together, and we have worked as a collaborative. This is something I’m pleased and proud of. We didn’t go off into our own silos. One way we did that was through our early career researchers who are the core engine of this project.

As well as our priority areas we also established cross-cutting areas of interest – mental health, children and resilience – which we see as priority areas for the future.

We realised we couldn’t come up with full-bodied ethical frameworks. That wasn’t what was needed. Instead, we needed an agile system of response. Looking at what the other national observatories were doing, there was a lot of responsive advice, rapid reviews, and people churning out work, but that had the academic imprint of rigour and systematicity. That rigour was important – we weren’t just turning stuff out without a system. We spent a lot of time thinking about our methods to ensure there was rigour and justification. This is something I think we have to offer.

We provided responsive advice, rapid reviews and created summaries for policy-makers and lay audiences.  We also had significant funding available for commissioned ethics research – as part of our strategy was to mobilise UK ethics excellence. We also wanted to engage the public – as we don’t believe ethics is the exclusive domain of experts; we wanted to support stakeholder engagement.

The UK Pandemic Ethics Accelerator had a very broad specification and has produced a wide range of outputs across different areas of focus. By last autumn we were still providing rapid ethics responses, but we were also talking to the media. Some colleagues became go-to people for ethics debate and input.

I think the other positive thing about the EA is that we agreed at the start that we didn’t need to speak with a unified voice. There were differences of ethical opinion and ethical approach, among the co-investigators. We were able constructively to use that as a way of demonstrating that there is no one right answer to most of the questions that arise, but there are ways of thinking about these questions, and approaching the answers from different ethical angles. These approaches may lead us to different positions on what the right thing is to do, but the key thing is that the reasoning that led to these different positions is transparent. This transparency makes it easier for someone to understand how one gets from A to B; and also makes it easier to take issue with a reasoning pathway. Transparency in reasoning and decision-making is an area that was important for the EA to model, as it is definitely an area of improvement for this Government in their handling of the pandemic.

Reflections

In the spirit of reflection, I wanted to point out where we’ve struggled. I think what is clear and becoming increasingly so the more we do this kind of collective reflection, is that there were a lot of networks who were trying to engage ethics, to think about public trust, and to generate dialogues. These networks exist at all levels of society and have proliferated as a function of the pandemic. I don’t think we’ve established a good enough connection between this on-the-ground work, and our work, in committees and in the kind of normative ethical analysis that we are able to do. That’s something on which we need to make progress.

We have struggled to make policy impact and to engage policy-makers. We were at the House of Commons in May 2022 and had a good session, but this was the first time I felt that people wanted to engage in dialogue and to listen. Perhaps that is simply a reflection of how the pandemic has moved and that people now have the headspace to do this. However, I think we’ve struggled not just to penetrate, but also to understand what the needs are and how to make strategic decisions on how to help direct ethics analysis. Again, we don’t come in thinking we have the right answers, but we wanted to bring tools and processes to the table.

Another challenge is that we have had an ambiguous, or lack of, relationship with pandemic science leadership. We have had trouble identifying where the leadership was. It wasn’t just Chris Whitty and Patrick Vallance, there was leadership all the way down. That’s an important lesson for us to do more to understand those layers of leadership and who is creating scientific strategic direction and where it is coming from. I think that the AHRC within UKRI has not been as proactive in helping us make these relationships and perhaps they need to think more about that.

Finally we have not been able to mobilise the UK ethics community in the way we hoped. We struggled with commissioning, despite trying in a number of ways. We don’t know why that is. I think there has been a splintering of the ethics community in different valuable and important activities. However, the EA was not seen as a platform for ethics community mobilisation in the way we had hoped, unfortunately.

Lessons for the future

What we’re learning is that ethics is part of everyday pandemic life and that during a pandemic decision-making is essentially ethical across multiple societal levels. It’s not the realm of expertise, it is all of us, including in our lives as citizens.  The fact that we all played multiple roles – we weren’t just academics but were also citizens – is something we can think much more about as we go forward.

We can think about what the opportunities are to help people understand how important ethics is in everyday decision-making.  Because, whether or not ethics was recognised in policy, I’m not sure this happened in public. As a result we missed opportunities to do basic things that we as academics would do. For example when we talked about duties, or rights or sacrifices, we could have supported a conversation around what those terms mean. At the moment we clearly don’t have shared understandings and it would be better if we had transparency around what was meant by these terms. We have dismissed the fact that there are different underlying values, and that people don’t agree on the sense of the right thing to do. As a result, we did not have an opportunity to explore those different underlying values with respect for our differences.

Institutionalising ethics

We have the tools, frameworks, processes and ways of thinking that can support these debates and the decision making, that can help get, not necessarily to the right place, but to more balanced arguments and more transparency and arguments that are better justified. I know some people will worry that this takes time, and it probably does take time to do it well, but we have the opportunity in this period of recovery and resilience-building to try to institutionalise ethics in in public debates and in societal everyday life.

And so our final quarter priority is around the institutionalisation of ethics, in public and policy landscapes. I think that this idea of capacity-building within institutions across society is important. We want to build resilience, through ethics, so that ethics becomes really embedded in the core of decision-making and public dialogue going forward.

Ethics in plain sight

We think that part of the core ways we can build ethics into decision-making is grappling with ethical questions in plain sight, through the full range of policy and public mechanisms. We are only just glimpsing what the full range is – but clearly committee work and advice is important, but also the public work. Where are the public levers that we could access to help bring ethics into plain sight? What are the frameworks and expertise that we have that are considered useful and agile enough? I think utility and agility have to go together in a situation like that. How can we build plans to engage publics more in developing strategy and guidelines? We’ve been behind in that process. And critically important, perhaps most important, is listening to the voices that tend to get missed, or dropped off, or are ignored or excluded, as we try in this period of recovery and resilience to make the next phase of the pandemic as good as it can be for people.