As the nature and scale of the COVID-19 pandemic became clear, THIS Institute – which enjoys a highly productive partnership with Homerton – sought to identify where its research could be most useful and relevant to the NHS.

It soon became clear that the pandemic was bringing complex ethical questions into the spotlight. Some of these directly affect NHS staff, but tend not to get the same attention as ethical issues affecting patients and the public. A new report published by the institute,  Testing Times: An ethical framework and practical recommendations for COVID-19 testing for NHS workers, shows that the COVID-19 swab testing programme for current infection in NHS workers benefits from ethical scrutiny too.

The project behind the report involved a 15-member multi-disciplinary expert group and a rapid online consultation to guide the development of an ethical framework and practical recommendations. The consultation, which involved teams across the institute, was highly innovative, making use of the online ‘Thiscovery’ platform it has developed. One of the key features of Thiscovery is that it can enable remote gathering of views from diverse stakeholders. We interviewed or received written responses from 93 stakeholders, many of them NHS staff and senior leaders, during just over two weeks in May and June 2020. The pace and level of engagement could not have been achieved, particularly during a pandemic, without this online facility.

The report’s recommendations focus on eight key areas: clarity about goals; ensuring access, effectiveness, and efficiency; recognising the limitations of the properties of the test; understanding how the test is used in practice and the implications of these uses; choices about testing; data protection and confidentiality; trustworthiness and legitimacy; and information and communication about testing.

The report recognises that COVID-19 does not affect all population groups equally, making it an important ethical responsibility to consider how features of the testing programme may particularly affect groups facing disadvantage or disempowerment. It emphasises the need for sensitivity to the distinctive issues that may arise in relation to staff currently described as Black, Asian and Minority Ethnic (while it also recognises the problematic nature of the ”BAME” terminology).

Progress has already been made on some of the issues identified in the report, which offers several examples of good practice from the participants (many of them NHS staff). For instance, access to testing has greatly improved since the outset of the pandemic. Communication in relation to several aspects of staff testing was also seen to have got better over time, especially within NHS organisations.

But ongoing concerns were also reported about the problem of false negatives, given that a sensitivity of 70% for the test may be a reasonable estimate. A perception that the false negative problem had not always been acknowledged nationally or locally was seen to have damaged trust. Practically, participants worried about decisions being made about staff fitness for work or allocation to particular clinical areas based on negative tests. The report recommends national guidance to provide clarity, and suggests that locally organisations should be transparent and communicate effectively about how the test is being used, for what purpose, and on what basis. Organisations should also be careful to assess any potential for inequities or unfairness associated with these decisions.

The extent to which staff had choice over whether to be tested, particularly as it becomes more frequent, was also identified as an area of ethical complexity. Though many in the consultation agreed that having a test should be a matter of personal choice, they also acknowledged that it may not be one where everyone can exercise the same degree of choice (some may be much more easily able to decline than others). And they recognised that duty of care to patients, colleagues and the wider public meant that the entitlement to choice was not necessarily straightforward. Recommendations include ensuring clarity about the degree and nature of requirements for staff to undergo testing, developing criteria to guide frequency of testing, assessing potential for discrimination through over or under-testing of particular groups, and being clear about HR procedures or other responses to choices about testing.

Issues concerning confidentiality and data protection in relation to test results (or whether individuals had undergone testing) were a focus of concern in the consultation. Though national guidance has been issued, information flows on the ground were not clear to people. Anxieties about access to data, sharing of information across government agencies and beyond, and what gets recorded in staff personnel files might be addressed by the recommendations to improve clarity about how, when and to whom disclosures can be made, possibly through templates on data flows that can be customised locally.

Few ethical issues lend themselves to easy resolution, whether they relate to ventilators, CPR, masks, or anything else. But the report suggests that many in relation to the NHS worker testing programme could be mitigated further through transparency, trustworthiness and clear communication. Trustworthiness is likely to be enhanced if staff are confident that any concerns will be heard and addressed.

The pandemic situation is changing fast, and the testing programme is under constant review. As well as informing our thinking today, considering the ethical issues affecting staff is of enduring relevance for responding to pandemics and other public health emergencies in the future.

Download the full report here: https://www.thisinstitute.cam.ac.uk/research-projects/ethical-framework-for-covid-19-testing-nhs/

A version of this blog post appeared on the BMJ website.