The Bermuda Principles for DNA sequence data sharing are an enduring legacy of the Human Genome Project. They were adopted by the HGP at a strategy meeting in Bermuda in February of 1996 and implemented in formal policies by early 1998, mandating daily release of HGP-funded DNA sequences into the public domain. The idea of daily sharing, we argue, emanated directly from strategies for large, goal-directed molecular biology projects first tested within the “community” of C. elegans researchers, and were introduced (...) and defended for the HGP by the nematode biologists John Sulston and Robert Waterston. In the C. elegans community, and subsequently in the HGP, daily sharing served the pragmatic goals of quality control and project coordination. Yet in the HGP human genome, we also argue, the Bermuda Principles addressed concerns about gene patents impeding scientific advancement, and were aspirational and flexible in implementation and justification. They endured as an archetype for how rapid data sharing could be realized and rationalized, and permitted adaptation to the needs of various scientific communities. Yet in addition to the support of Sulston and Waterston, their adoption also depended on the clout of administrators at the US National Institutes of Health and the UK nonprofit charity the Wellcome Trust, which together funded 90% of the HGP human sequencing effort. The other nations wishing to remain in the HGP consortium had to accommodate to the Bermuda Principles, requiring exceptions from incompatible existing or pending data access policies for publicly funded research in Germany, Japan, and France. We begin this story in 1963, with the biologist Sydney Brenner’s proposal for a nematode research program at the Laboratory of Molecular Biology at the University of Cambridge. We continue through 2003, with the completion of the HGP human reference genome, and conclude with observations about policy and the historiography of molecular biology. (shrink)

Patient organizations are increasingly involved in national and international bioethical debates and health policy deliberations. In order to examine how and to what extent cultural factors and organizational contexts influence the positions of patient organizations, this study compares the positions of German and Israeli patient organizations (POs) on issues related to end-of-life medical care. We draw on a qualitative pilot study of thirteen POs, using as a unit of analysis pairs comprised of one German PO and one Israeli PO that (...) were matched on the basis of organizational category. Bioethical positions that emanated from the interviews concerned advance directives—general views, recent legal framework, and formalization; as well as active and passive euthanasia, withholding and withdrawing of treatment, and physician-assisted suicide. In addition to the unifying, within-country impact of cultural factors, we found that constituency-based organizations and partner organizations in both countries often share common views, whereas disease-based support organizations have very heterogeneous positions. We conclude by discussing how organizational contexts provide a source of uniformity as well as diversity in the positions of POs. (shrink)

Focusing on the interactions between people suffering from neuromuscular diseases and their wheelchairs, the author raises the question of action: how is action made possible for people suffering from neuromuscular diseases? Starting with actor-network theory, the author shows that action not only results from distribution and delegation to heterogeneous entities but emerges from hard and lengthy work that makes the relation between them possible and transforms the entities involved. The author describes this work, called the process of adjustment, as work (...) on the links making a person, his or her body, and his or her world. Through this work, new possibilities of action emerge for the person, but also new abilities; the person’s identity is transformed and shaped. This analysis leads to a particular conception of the person as made up through his or her relations to other entities. (shrink)

This paper explores how scientists perceive public engagement initiatives. By drawing on interviews with nanoscientists, it analyzes how researchers imagine science–society interactions in an early phase of technological development. More specifically, the paper inquires into the implicit framings of citizens, of scientists, and of the public in scientists’ discourses. It identifies four different models of how nanoscientists understand public engagement which are described as educational, paternalistic, elitist, and economistic. These models are contrasted with the dialog model of public engagement promoted (...) by social scientists and policymakers. The paper asks if and in what ways participatory discourses and practices feed back into scientists’ understandings, thus co-producing public discourses and science. (shrink)