Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

Patient and public involvement (PPI) has gained widespread support in health research and health policy circles, but there is little consensus on the precise meaning or justifications of PPI. We argue that an important step towards clarifying the meaning and justification for PPI is to split apart the familiar acronym and draw a distinction between patient and public involvement. Specifically, we argue that patient involvement should refer to the practice of involving individuals in health research or policy on the basis (...) of their experience with a particular condition, while public involvement should refer to the practice of involving individuals in health policy or research based on their status as members of a relevant population. Analyzing cases from the UK, Australia, and the USA, we show how our proposed distinction can deliver much needed clarity to conversations on PPI, while guiding the development and evaluation of future PPI‐based policies. (shrink)

Paul Appelbaum and colleagues propose four models of informed consent to research that deploys whole genome sequencing and may generate incidental findings. They base their analysis on empirical data that suggests that research participants want to be offered incidental findings and on a normative consensus that researchers incur a duty to offer them. Their models will contribute to the heated policy debate about return of incidental findings. But in my view, they do not ask the foundational question, In the context (...) of genome sequencing, how much work can consent be asked to do? (shrink)

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.

This paper investigates the dynamic and performative construction of publics in public engagement exercises. In this investigation, we, on the one hand, analyse how public engagement settings as political machineries frame particular kinds of roles and identities for the participating publics in relation to ‘the public at large’. On the other hand, we study how the participating citizens appropriate, resist and transform these roles and identities, and how they construct themselves and the participating group in relation to wider publics. The (...) empirical basis of our argument is a discussion of four different kinds of participation events in Austria. Building on these observations we develop conclusions about the public up-take of public participation in technoscience and the role of public engagement in current techno-political cultures. (shrink)

The authors articulate a global public standard for the normative legitimacy of global governance institutions. This standard can provide the basis for principled criticism of global governance institutions and guide reform efforts in circumstances in which people disagree deeply about the demands of global justice and the role that global governance institutions should play in meeting them.