Carrie Bernard

Making research data readily accessible during a public health emergency can have profound effects on our response capabilities. The moral milieu of this data sharing has not yet been adequately explored. This article explores the foundation and nature of a duty, if any, that researchers have to share data, specifically in the context of public health emergencies. There are three notable reasons that stand in opposition to a duty to share one’s data, relating to: (i) data property and ownership, (ii) just distribution of benefits and burdens and (iii) the contemporary ethos of science. We argue each reason can be successfully met with corresponding rationale in favour of data sharing. Further support for data sharing has been echoed in policies of health agencies, funding bodies and academic institutions; in documents on the ethical conduct of biomedical research; and in discussions on the nature of public health. From this, we ascertain that sharing data is the morally sound default position. This article then highlights the key roles reciprocity and solidarity play in supporting the practice of data sharing. We conclude with recommendations to regard public health research data as a common-pool resource in order to build a framework for stable data sharing management

It is clear that in the eyes of a growing number of humanitarian fieldworkers and decision-makers, palliative care is something humanitarian organizations should strive to provide as they address the needs of populations affected by crises. What remains less clear are the moral justifications underlying the push to do so. This chapter dives beneath surface prescriptions of what “ought to be” the place of palliative care within humanitarian response. It presents and analyses a series of evocative statements made by 24 humanitarian healthcare actors about why, on what bases, and with what caveats, care for the dying deserves more attention within humanitarian healthcare response. Embedded in these statements are sometimes explicit, sometimes implicit ideas about what it means be a human and a humanitarian, and what humans need and deserve. Clarifying the experiences, practical considerations, understandings of care and responsibility, and norms and values underlying these feelings renders these available for more thorough reflection, discussion, and debate.