UK Pandemic Ethics Accelerator – Reflections from the Data Use workstream

The UK Pandemic Ethics Accelerator brought together ethics experts from across the UK during the Covid-19 pandemic to consider key ethical questions and to offer support to policy makers. In this blog, Melanie Smallman, James Wilson and Cian O’Donovan, who led the data use workstream, reflect on its work.

The Covid-19 pandemic raised the stakes for the translation of bioethics insights into policy. The novelty, range, and sheer quantity of the ethical problems that needed to be addressed urgently within public policy was unprecedented – many of these related to the generation and use of data.

Over recent decades there has been growing interest in the potential of data in health, but the Covid-19 pandemic saw data used in new and accelerated ways. The urgent need to find public health measures to reduce the spread of the disease and to develop new vaccines and new treatments was coupled with the promise that more data can help. Data was given a central role in the pandemic – its seeming objectivity giving it power in allowing politicians and other decision-makers to justify of a wide range of new measures, including restrictions on civil liberties, and mass centralisation of data. Data formed a part of the logic by which power was wielded over the public.

Data was used in daily briefings to justify the imposition of lockdowns, and new protocols for data collection and sharing were put in place at unprecedented speed and at unprecedented scale – with no clarity as to whether, when and on what basis these “emergency” data protocols might be reversed. More recently the Government’s decision to scale back data collection and dissemination around Covid-19 infections and deaths effectively “ended” the pandemic in the public eye, despite the significant levels of infection that remain. There were profound ethical issues at play in these decisions, but (open and transparent) ethical consideration of these issues was lacking.

Throughout the pandemic the data use priority area team sought to provide insights and analysis to inform decision-makers, producing papers, articles and responding to consultations. We also participated in formal and informal advisory roles, including the short-lived Ethics Advisory Board for the Covid-19 app. However, our experience demonstrated significant gaps in the structures and tools currently available to support data ethics and revealed a need for new tools and procedures for emergency situations.

While scientific advisers have sought to delineate a clear line between the provision of scientific advice and political decision making (and by implication ethical consideration), in reality political questions or questions of value cannot be separated from scientific ones. The quality and relevance of evidence and data that can be collated to form science advice to policymakers is influenced by prior political decisions about investment in research and data infrastructures. For example the rudimentary state of data infrastructure in care homes in the UK hampered the evidence available to policymakers during the pandemic, with significant implications.  

Many of the ethical questions which were faced in the pandemic had not been thought about systematically before, such as the use of contact tracing apps, or whether and when we should use vaccine passports. Ethical thinking about these problems needed to happen in real time. The emergency context made it impossible to create wholly new institutional structures. However, existing value frameworks and concepts of the public interest proved insufficient.

Policy makers could have taken a decision to open up the policy making processes – with a greater focus on transparency, honesty and willingness to learn from mistakes, and the ability to harness the collective intelligence of communities – but instead it chose a business-as-usual approach.

In practice this meant ethical input sometimes amounted to little more than “ethics washing”. Our experience around the Ethics Advisory Board for the NHS Covid-19 App in 2020, offers some lessons in this regard. The idea of using automated contact tracing via an app raised complex questions about privacy, surveillance, and inclusion. An Ethics Advisory Board (EAB) was convened in early April 2020 and worked rapidly to provide an ethical framework to support decision making around any App that might be developed. However, from the outset, committee members were concerned about the ethical implications of the overall strategy driving the App’s development, but which were outside the scope of its advice.

The EAB was dissolved by the government in July 2020, after a number of high-profile leaks and discomfort around public comments being made by members of the Board. By the time of its dissolution the strategy for the App had transformed and the App was completely redesigned by a different team, using a different model. Neither the redesigned App, nor the broader Test and Trace programme which oversaw it, had an independent ethics advisory board, despite the scale of the programme and the ethical issues it raised around the sharing of confidential information.

After the dissolution of the EAB the government’s approach to public deliberation about issues of significant ethical importance became more obviously tokenistic. Consultations on key ethical issues closed and were responded to without time for the responses received to have been read. Critical issues of data use, with significant ethical implications  – such as the approach to mandatory vaccination, the implications of how Covid deaths were recorded – were decided without proper processes for ethical input and scrutiny. While we sought to offer input to these discussions, the lack of formal structures to receive and respond to this advice meant that it was it was unclear whether and how our advice was used.

Preparing for future pandemics will mean addressing the gaps in our ethics infrastructures. Structures for emergency data ethics need to be developed, and means of ensuring they are followed, need to be created. To meet the challenges of future pandemics such structures need to take account of how the sense of objectivity and therefore the authority to act are coproduced by data and political arrangements; the effect of data gaps in creating vulnerabilities; and a mechanism for structuring ethics thinking to look at the timescale of the pandemic and to consider the conditions under which the emergency will have ended and when normal regulations should once again apply.

In our forthcoming paper considering the role of ethical advisers in pandemic contexts, we argue that we need longer term work to build an effective infrastructure for ethical advice, and that doing this will require us to resolve questions around the roles we want ethical advisors to play. However, we argue that the failures to meaningfully engage with ethical issues during this pandemic should not be taken as an indication that this work would never be possible – indeed open engagement with ethical complexities and work to balance different values are not only core to the standards set out in the Nolan Principles but also fundamental to the basic norms of democratic government. Our work suggests that there is much to be done to ensure that we are prepared for future pandemics.