Written Evidence Submitted by the UK Pandemic Ethics Accelerator
(CLL0124)
The UK Pandemic Ethics Accelerator harnesses and mobilises the UK’s internationally renowned expertise in ethics research. Four major UK universities and the Nuffield Council on Bioethics form the collaborative which has received £1.4M funding from the Arts and Humanities Research Council (AHRC) as part of the UK Research and Innovation rapid response to covid. The Principal Investigator for the initiative is Professor Ilina Singh of the University of Oxford. Professor Ilina Singh is the Principal Investigator. The project’s Co-Investigators are:
The Accelerator provides rapid evidence, guidance, and critical analysis to inform policy and help improve decision-making. It also supports, informs and promotes public debate around key ethical challenges, and ensures that ethical thinking is embedded at the core of future pandemic preparedness. Several workstreams in the Ethics Accelerator have collectively submitted evidence to this inquiry. These submissions do not represent a consensus view, nor do they reflect the entirety of the UK Pandemic Ethics Accelerator project.
The two Select Committees are examining the impact and effectiveness of action taken by government and the advice it has received. They are considering a range of issues and we are responding to the consultation under the headings listed, contributing to those where we have expertise and have recently published reports or evidence. These are:
Under the Accelerator’s Public health and health inequalities workstream, John Coggon has produced an analysis of the complex ethical trade-offs involved in balancing government policies designed to control the pandemic.
The prominence of health protection rationales to justify regulatory and policy measures during the covid-19 pandemic has logically drawn attention to health harms, including collateral harms, that have also been created. ‘Health/health trade-offs’ present complex ethical challenges that apply across sectors, and which cannot be well resolved through a single measure or standard of evaluation. Public debate is needed to evaluate health impacts across government policy, with attention to the sources, natures, and distribution of health costs across society.
This analysis was presented by John Coggon at the recent Accelerator media launch event.
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Jamie Webb, from the Accelerator’s Public values, transparency, and governance workstream presents data showing that the public has been largely supportive of lockdown measures in the past, often in advance of government decisions (most notably in the run up to Christmas).
Some UK-based deliberative work has been conducted by: Ipsos Mori on engaging citizens in how government should prepare for future lockdowns; and from the Scottish government on the effects of lockdown measures and what changes would help citizens abide by rules.
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Jonathan Pugh, Dominic Wilkinson, and Julian Savulescu, from the Accelerator’s Prioritisation workstream have produced two pieces outlining ethical aspects of the government’s quarantine arrangements for international travellers. One is featured in The Conversation and the other is featured on the University of Oxford Practical Ethics blog.
The Prioritisation team also analysed the complex ethical tensions that arise when attempting to balance three priorities: reducing covid mortality; protecting liberty; and ensuring equality.
The UK is currently aiming to suppress the virus to acceptable levels, rather than to eliminate it completely. The suppression strategy means that we must make a societal decision about the harms we are and are not willing to accept to suppress the virus. This decision means that we will have to make trade-offs between the three priorities listed above: reducing covid mortality, liberty, and equality. This is a trilemma. To make a decision about what is acceptable in suppressing the virus, we cannot simply appeal to comparisons between covid-19 and harms caused by other infectious diseases – we have to confront the fundamental conflict between values in the covid trilemma.
This analysis was presented by Dominic Wilkinson at the recent Accelerator media launch event.
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Some social groups are at greater risk of harm and death from covid-19 than others because of biological or social factors, and there have been different opinions about the most ethical order in which to prioritise their access to the vaccines that have been developed.
Near-universal vaccination is key to defeating the covid-19 pandemic. Decisions have had to be made about how vaccines should be allocated and distributed to achieve this goal as quickly, successfully, and fairly as possible.
In addition, some social groups are reluctant to be vaccinated and their views must be understood and respected, while also trying to minimise harms. Equality and equity in allocation, and the mitigation of inequalities across society, are vital for the ethical acceptability of any vaccination strategy.
In a review produced for the Accelerator’s Public health and health inequalities workstream, Alex McKeown examines these interlocking considerations in understanding the values at stake in attempting to decide the best possible approach for a vaccination strategy, particularly as it relates to the social groups most at risk of harm from covid-19.
Reference:
https://ukpandemicethics.org/wp-content/uploads/2021/05/Ethical-Considerations-in-Unfairness.pdf
Also under the Accelerator’s Public health and health inequalities workstream, John Coggon has written in The Conversation about the importance of ensuring social justice in measures to control the pandemic, along with ensuring that they control transmission. This is to say that the success or failure of coronavirus regulations is often assessed on whether they affect the rate of transmission in the community, and whether or not people comply with them. But what about the ethics behind the measures?
There are broad societal issues that challenge the moral authority of pandemic responses and must be taken seriously. Questions of equality under the law sit alongside structural inequalities within society. The disproportionate impact of COVID-19 on different communities – for example the ethnic inequalities we have seen in morbidity and mortality – has invigorated debates on social justice, shedding sharp light on pre-existing, systematic disadvantage.
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Sarah Chan from the Foresight workstream has carried out an analysis of the ethical considerations that come to bear on attempting to understand how the values of diverse publics influence how people judge and take risks.
The covid-19 pandemic has been tracked largely in terms of numbers of deaths, but death is not the only harm we should take into account: other negative consequences such as non-covid health impacts and social costs need to be considered. We also need to explore the ethical values that underlie judgments about these harms, both of different sorts of deaths, and of the other consequences of the pandemic. Effective pandemic policy-making requires us to understand the values of the various publics involved.
This analysis was presented by Sarah Chan at the recent Accelerator media launch event.
Reference:
https://ukpandemicethics.org/living-and-dying-with-covid-not-all-deaths-are-equal/
Mass lateral flow antigen testing has played a significant role in the government’s pandemic response. However, although they are relatively cheap and able to provide results quickly, the use of these tests has been criticised due to concerns about their accuracy. In late 2020, A pilot trial of these tests in asymptomatic individuals suggested that they had a high false negative rate; they failed to identify half of the positive cases in the trial population.
Academics from the Accelerator’s Prioritisation workstream have provided an ethical analysis of the government’s approach to using these tests in some recent outputs as highlighted below.
In their paper published in the Journal of Medical Ethics, Sense and Sensitivity: Can An Inaccurate Test Be Better Than No Test At All, Jonathan Pugh, Dominic Wilkinson and Julian Savulescu suggest that the use of these tests can be ethical if (i) they are used predominantly to identify positive cases (ii) it is a cost-effective method of achieving that goal and (iii) if other public health tools can effectively prevent widespread false reassurance following false negative results. They suggest that the government’s early strategy for the use of these tests did not necessarily meet all of these criteria.
In a blog published in the Journal of Medical Ethics, Lateral flow tests and schools: Why the government’s approach is ethically flawed, Pugh, Wilkinson and Savulescu consider the use of these tests in the government’s approach to re-opening schools in March 2021. They criticise the government’s strategy of not allowing a negative PCR test to overrule a positive lateral flow antigen test. They also argue that there are there are strong moral reasons decrease the number of false positives by using PCR testing confirmation given the significant costs to unnecessarily restricting the liberty of individuals with false positive results.
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Counts of covid-19 deaths will continue to influence government responses for some time to come. As we adapt to living with covid-19, data that report how people die and in what numbers should be augmented by information on how they lived and what they valued.
Colleagues from the Accelerator’s Data Use workstream, Cian O’Donovan, Melanie Smallman and James Wilson have considered a critical question for decision makers and society, namely: what does a sustainable approach to the collection and use of data on covid deaths for public health purposes look like?
Infrastructures for counting deaths must be adapted to fit evolving circumstances. Immunity certification schemes such as vaccine passports are being advanced by firms and governments around the world. But to date, commentary on the impact on people and groups tends to overlook the effects of technologies across scales. This matters because impact at scale is what makes vaccine passports so alluring – promising society-wide benefits at what looks like low financial and political cost. Understood this way, the passport per se is not the issue. What is at stake is the creation of a set of infrastructures.
This analysis was provided by the Accelerator’s Data use workstream team, Cian O’Donovan, Melanie Smallman, and James Wilson, at the recent Accelerator media event.
A review by the same team set out values at play in the way immunity certification infrastructures might work. The main contribution of this review was to identify the range of scales at which these infrastructures will work, and a set of questions by which to evaluate ethical and policy issues at these scales.
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In this section, academics from the Accelerator’s Public values, transparency and governance workstream provide an ethical analysis of the UK and other governments’ approach to highlight complexities in public engagement around public health during the covid-19 pandemic.
UK public engagement during the pandemic so far has focused on measurement: of the public’s beliefs, intentions and opinions.
Navigating our covid future will require making difficult, value-laden policy choices that affect us all. The public should be involved in these decisions. Future UK public engagement needs to place deliberative democracy – engaging ordinary citizens in making policy recommendations – at the heart of the covid recovery.
Politicians may be reluctant to cede even a degree of their power to members of the public. But engaging ordinary citizens in the difficult value tradeoffs, and integrating their recommendations into government decision making, will give much needed democratic legitimacy to the difficult policy choices to come.
This analysis was published in a piece produced by Jamie Webb and Hugh Whittall for the recent Accelerator media event.
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In a recently published blog, Jamie Webb from the Accelerator’s Public values, transparency and governance workstream highlights the shortcomings in the UK’s prior preparedness, concluding that, aside from lack of application of the principles of public health which has been widely criticised by UK-based practitioners, lessons from public health emergencies in less economically developed countries (LEDCs) – notably the 2014–16 Ebola outbreak – were also not sufficiently learned in the government’s initial pandemic response.
Addressing public trust, stemming the spread of misinformation, and the need to mobilise community resources in stemming the tide of disease are all lessons to be learned in how these challenges we face today have been met in the past. Those concerned with the public response to covid-19, or planning for pandemics of the future, would do well to look to successful examples of public engagement from previous public health crises.
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Under the Accelerator’s Prioritisation theme, Jonathan Pugh and Julian Savulescu produced a piece for The Conversation which broadly supported the government’s decision not to suspend the Oxford / AstraZeneca vaccine over concerns about effectiveness and safety, respectively.
It is only ethical to approve a vaccine if it is safe and effective. Crucially, the reluctance in France, Germany, Sweden, Austria, Poland, and Italy to approve the AstraZeneca vaccine in the elderly has been grounded only in concerns about its efficacy. The concern is not that there is data showing the vaccine to be ineffective in the elderly, it’s that there is not enough evidence to show that it is effective in this age group. The challenge is in how we manage the degree of uncertainty in the efficacy of the vaccine, given the available evidence.
Pugh and Savulescu also produced two articles outlining ethical considerations informing decisions about how to prioritise vaccination - one in the BMJ, the other in the University of Oxford Practical Ethics blog.
As the first phase of vaccine distribution nears completion, a heated debate has arisen about the second phase of vaccine prioritisation, particularly with respect to the question of whether certain occupations, such as teachers and police officers amongst others, should be prioritised in the second phase.
Similarly, in both phases of vaccination, the Joint Committee on Vaccination and Immunisation (JCVI) state that their priority groups represent 99% of preventable mortality from covid-19. The downside of this strategy, however, is that people in each lower tier will predictably and avoidably die as they wait for the tier above to be vaccinated. The authors discuss moral and scientific reasons for and against different prioritisation strategies in these two articles.
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The UK has been first to establish human challenge trials of covid-19 which are now being run by teams at Imperial College London and the University of Oxford. In a recent article, Shaun Griffin and Hugh Whittall from the Public values, transparency, and governance workstream note that ethical guidance to inform such trials was issued by the World Health Organisation a matter of weeks after covid-19 was declared a pandemic. That guidance informed the ethical review of challenge trials by the UK’s research ethics body, the Health Research Authority. In that piece they argue that now is the time to take stock and consider how we approach public involvement in research ethics policy-making.
Understanding the values that motivate and concern the public is critical as we move from reactive research in the context of the current pandemic towards living with covid-19 in the coming months or years, and towards preparedness for the a future pandemic. If we are to build a robust and trustworthy research effort, this should involve extensive and continuous engagement with, and the involvement of, the public in trial design; in regulation and ethical review; and, in the case of challenge trials, policy development and implementation.
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In this submission from Cian O’Donovan, Melanie Smallman, and James Wilson from the Accelerator’s Data use workstream focuses on how data has been used to inform decisions about UK care homes.
In the UK today, the government does not understand who is in care homes, where they are and for what duration of time. Critical details about the population of people in care homes is missing or is not accurate.
While covid-19 has accelerated the pace and broadened the scope of data gathering in the UK care sector homes, comprehensive data on the case mix and needs of residents is still missing.
One major issue is what health system experts call a denominator problem, after the bottom number in a fraction. This is the number that represents the population of people in care homes. When decision makers don’t know the denominator, they quickly end up with errors in assessment, in the evaluation of services, and in the evidence base for policy. These errors cost lives.
Because of this, the denominator problem is a critical ethical issue in care homes today.
A Rapid Ethics Review produced by O’Donovan, Smallman, and Wilson endorses a set of seven priority interventions that aim to get the basics right for gathering quality data on care homes, and makes further proposals on how to overcome structural, institutional and policy barriers. It also highlights further measures needed to build and maintain resilient, sustainable data infrastructure in the sector.
Reference:
Making-older-people-visible-in-care-home-data-by-solving-the-denominator-problem.pdf
About this evidence submission
This submission was supported by the UK Pandemic Ethics Accelerator, grant number AH/V013947/1. It was compiled by Dr Alex McKeown, University of Oxford; Dr Shaun Griffin, Nuffield Council on Bioethics; Dr Jonathan Pugh, University of Oxford; Dr Cian O’Donovan, University College London; and Mr Jamie Webb, University of Edinburgh.
The submission has been peer reviewed within the UK Pandemic Ethics Accelerator.
(10 June 2021)