‘Trust but verify’ is a translation of a Russian proverb made famous by former US President Ronald Reagan. In their paper, Grahamet alappear to take an alternate view that might be summarised astrust or verify. The contrast highlights a general question: how do we come to trust in authorities? More specifically, Grahamet alclaim: (1) that UK Trusted Research Environments (TREs) are misnamed as future custodians for big health data because their promised verification systems actually negate the uncertainty that trust requires; (...) (2) the public is mistaken if it believes such verification enhances trust; (3) the notion of building public trust in TREs is unclear or misconceived. In response, I propose a more relational, perhaps less reductionist account. I argue (1) that verification is itself a source of uncertainty, so it can’t extinguish the uncertainty needed for trust; (2) it’s nevertheless possible for verification to enhance feelings of trust thereby reducing our needs for the same; (3) trust is also social, even political, meaning institutions like TREs may become too big to fail—and end up shielding their ‘trusted’ brand by being less candid about inevitable flaws in their verification systems. (shrink)

In our recent paper ‘Trust and the Goldacre Review: Why TREs are not about trust’1 we argue that trusted research environments (TREs) reduce the need for trust in the use and sharing of health data, and that referring to these data storage systems as ‘trusted’ raises a number of concerns. Recent replies to our paper have raised several objections to this argument. In this reply, we seek to build on the arguments presented in our original paper, address some of the (...) misunderstanding of our position expressed in these replies, and sketch out where further research is needed. One of the central arguments of our original paper was that the language we use to describe data-sharing initiatives matters, because the way things like TREs are presented and framed makes a difference to what people can, and should, expect from them. However, there is a more basic and obvious problem with referring to these institutions as ‘trusted’: it begs the question about whether these institutions are, in fact, trusted. We cannot know in advance of these initiatives being implemented, established, and appropriate assessments completed, whether they are actually trusted. Further questions abound: whom might TREs eventually be trusted by? If some people end up trusting them, but not others, is it appropriate to call them ‘trusted’? At best, this is simply a case of wishful thinking (and a more accurate name would be ‘hopefully-TREs’). More problematically, this may be an instance of ‘trustworthiness-signalling’: an attempt to convince others to trust, without meeting the requirements for genuine trustworthiness. By calling TREs ‘trusted’, the implication seems to be that placing our trust in them is perfectly fine: they are the kinds of things that are trusted by others and can safely be trusted by us. But not only does simply calling something ‘trusted’ …. (shrink)

The UK government has recently committed to adopting a new policy—dubbed ‘Martha’s Rule’—which has been characterised as providing patients the right to rapidly access a second clinical opinion in urgent or contested cases. Support for the rule emerged following the death of Martha Mills in 2021, after doctors failed to admit her to intensive care despite concerns raised by her parents. We argue that framing this issue in terms of patient rights is not productive, and should be avoided. Insofar as (...) the ultimate goal of Martha’s Rule is the provision of a clinical service that protects patient safety, an approach that focuses on the obligations of the health system—rather than the individual rights of patients—will better serve this goal. We outline an alternative approach that situates rapid clinical review as part of a suite of services aimed at enhancing and protecting patient care. This approach would make greater progress towards addressing the difficult systemic issues that Martha’s Rule does not, while also better engaging with the constraints of clinical practice. (shrink)

Arguably one of the strengths of the discipline of medical ethics is its close attention to the context in which ethical dilemmas, questions and issues play out. As a discipline that is concerned with helping and supporting practitioners, policy-makers and the public to address the ethical aspects of healthcare provision and practice in the best way they can, context is crucially important. As McMillian puts it, ‘ethics should be grounded’ in the practical realities of the situation.1 What, where and who (...) are important questions that set the parameters of the debate and, to some extent, frame the subsequent solution or decision. What is happening in a particular case, what is the source of controversy, is it a conflict of values, regulations or professional viewpoints? Where does it take place, under which rules, jurisdiction or in which professional setting? And who does it involve? Whose rights, interests or decision-making capacity do we prioritise? All these contextual questions need to be carefully articulated before it is possible to draw any normative conclusions. The importance of context is clear in this issue’s ‘Engagement without entanglement: a framework for non-sexual patient–physician boundaries’ by Appel.2 What might be seen as entirely appropriate behaviour in one context, for example, when I help out a friend and let them stay in my house for a few weeks while they recover from an operation, is entirely inappropriate in another—in …. (shrink)

Developments in medical big data analytics may bring societal benefits but are also challenging privacy and other ethical values. At the same time, an overly restrictive data protection regime can form a serious threat to valuable observational studies. Discussions about whether data privacy or data solidarity should be the foundational value of research policies, have remained unresolved. We add to this debate with an empirically informed ethical analysis. First, experiences with the implementation of the General Data Protection Regulation (GDPR) within (...) a European research consortium demonstrate a gap between the aims of the regulation and its effects in practice. Namely, strictly formalised data protection requirements may cause routinisation among researchers instead of substantive ethical reflection, and may crowd out trust between actors in the health data research ecosystem; while harmonisation across Europe and data sharing between countries is hampered by different interpretations of the law, which partly stem from different views about ethical values. Then, building on these observations, we use theory to argue that the concept of trust provides an escape from the privacy-solidarity debate. Lastly, the paper details three aspects of trust that can help to create a responsible research environment and to mitigate the encountered challenges: trust as multi-agent concept; trust as a rational and democratic value; and trust as method for priority setting. Mutual cooperation in research—among researchers and with data subjects—is grounded in trust, which should be more explicitly recognised in the governance of health data research. (shrink)

In their highly topical paper, Grahamet alargued that Trusted Research Environments (TREs) are not actually about trust because they reduce or remove ‘…the need for trust in the use and sharing of patient health data’. We believe this is fundamentally mistaken. TREs mitigate or remove some risks, but they do not address all public concerns. In this regard, TREs provide evidence for people to decide whether the bodies holding and using their data can be trusted. TREs may make it easier (...) for people to trust but there is still a need for that trust. (shrink)