New models of data governance for health data are a focus of growing interest in an era of challenge to the social licence. In this article, we reflect on what the data trust model, which is founded on principles of participatory governance, can learn from experiences of involving and engagement of members of the public and participants in the governance of large-scale biobanks. We distinguish between upstream and ongoing governance models, showing how they require careful design and operation if they (...) are to deliver on aspirations for deliberation and participation. Drawing on this learning, we identify a set of considerations important to future design for data trusts as they seek to ensure just, proportionate and fair governance. These considerations relate to the timing of involvement of participants, patterns of inclusion and exclusion, and responsiveness to stakeholder involvement and engagement. We emphasise that the evolution of governance models for data should be matched by a commitment to evaluation. (shrink)

I outline a number of parallels between trust and distrust, emphasising the significance of situations in which both trust and distrust would be an imposition upon the (dis)trustee. I develop an account of both trust and distrust in terms of commitment, and argue that this enables us to understand the nature of trustworthiness. Note that this article is available open access on the journal website.

Beyond philosophy, discussions of trust and trustworthiness often concern collective entities such as corporations, states, and social groups. But much philosophical work takes trust in an individual person as paradigmatic, distinguishing such trust from mere reliance. This chapter explores the distinction between trustworthiness and mere reliability as it applies to collectives, arguing that the distinction does not have the same significance as it has in the individual case.

Calls are increasing for American health care to be organized as a learning health care system, defined by the Institute of Medicine as a health care system “in which knowledge generation is so embedded into the core of the practice of medicine that it is a natural outgrowth and product of the healthcare delivery process and leads to continual improvement in care.” We applaud this conception, and in this paper, we put forward a new ethics framework for it. No such (...) framework has previously been articulated. The goals of our framework are twofold: to support the transformation to a learning health care system and to help ensure that learning activities carried out within such a system are conducted in an ethically acceptable fashion. (shrink)

Trust enters into the making of a virtuous person in at least two ways. First, unless a child has a sufficiently trusting relationship with at least one adult, it is doubtful that she will be able to become the kind of person who can form ethically responsible relationships with others. Infant trust, as Annette Baier has reminded us, is the foundation on which future trust relationships will be built; and when such trust is irreparably shaken, the adult into whom the (...) child grows may be forever cut off from intimacy. Second, a moral beginner must trust other people's moral judgment while she learns to be good. A child does not learn how to be good on her own. She follows the precepts and examples of others, absorbs the moral values of the community into which she has been born, and relies on others who, with luck, will not lead her astray but will turn out to be trustworthy in offering her guidance and correction. While there is some empirical evidence that children learn about morality better when given reasons in support of what they are being taught, part of what a child is being taught is what counts as a good reason. Thus, no moral beginner could be in a position to assess adequately the cogency of the reasons she given until she has progressed some distance in her education. Until that time, the beginner must rely on other people's judgment. That thrust enters into the making of a morally good person should thus be uncontroversial. I want to defend a much more controversial thesis: needing to trust other people's moral judgment is not just a stage we go through on the way to becoming morally virtuous. If the world of value is complex, and if our access to it is shaped by our experiences, then even among the morally mature there will continue to be a significant role for moral testimony and thus for trust. (shrink)

The first of two commentaries on "Respecting Donors to Biobank Research," from the January-February 2013 issue. © 2013 by The Hasti.

When it comes to using patient data from the National Health Service for research, we are often told that it is a matter of trust: we need to trust, we need to build trust, we need to restore trust. Various policy papers and reports articulate and develop these ideas and make very important contributions to public dialogue on the trustworthiness of our research institutions. But these documents and policies are apparently constructed with little sustained reflection on the nature of trust (...) and trustworthiness, and therefore are missing important features that matter for how we manage concerns related to trust. We suggest that what we mean by ‘trust’ and ‘trustworthiness’ matters and should affect the policies and guidance that govern data sharing in the NHS. We offer a number of initial, general reflections on the way in which some of these features might affect our approach to principles, policies and strategies that are related to sharing patient data for research. This paper is the outcome of a ‘public ethics’ coproduction activity which involved members of the public and two academic ethicists. Our task was to consider collectively the accounts of trust developed by philosophers as they applied in the context of the NHS and to coproduce an argumentative position relevant to this context. (shrink)

Background In the UK, the solidaristic character of the NHS makes it one of the most trusted public institutions. In recent years, the introduction of data-driven technologies in healthcare has opened up the space for collaborations with private digital companies seeking access to patient data. However, these collaborations appear to challenge the public’s trust in the. Main text In this paper we explore how the opening of the healthcare sector to private digital companies challenges the existing social contract and the (...) NHS’s solidaristic character, and impacts on public trust. We start by critically discussing different examples of partnerships between the NHS and private companies that collect and use data. We then analyse the relationship between trust and solidarity, and investigate how this relationship changes in the context of digital companies entering the healthcare system. Finally, we show ways for the NHS to maintain public trust by putting in place a solidarity grounded partnership model with companies seeking to access patient data. Such a model would need to serve collective interests through, for example, securing preferential access to goods and services, providing health benefits, and monitoring data access. Conclusion A solidarity grounded partnership model will help establish a social contract or licence that responds to the public’s expectations and to principles of a solidaristic healthcare system. (shrink)

In biobanks, a broader model of consent is often used and justified by a range of different strategies that make reference to the potential benefits brought by the research it will facilitate combined with the low level of risk involved (provided adequate measures are in place to protect privacy and confidentiality) or a questioning of the centrality of the notion of informed consent. Against this, it has been suggested that the lack of specific information about particular uses of the samples (...) means that such consent cannot be fully autonomous and so is unethical. My answer to the title question is a definite ‘yes’. Broad consent can be informed consent and is justified by appeal to the principle of respect for autonomy. Indeed, I will suggest that the distinction between the various kinds of consent is not a distinction between kinds of consent but between the kinds of choice a person makes. When an individual makes a choice (of any kind) it is important that they do so according to the standards of informed consent and consistent with the choice that they are making. (shrink)