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)

This paper draws on nearly two decades of research on health consumer and patients’ organizations in the United Kingdom. In particular, it addresses questions of representation and legitimacy in the health policy process. HCPOs claim to represent the collective interests of patients and others such as relatives and carers. At times they also make claims to represent the wider public interest. Employing Pitkin’s classic typology of formalistic, descriptive, symbolic, and substantive representation, the paper explores how and in what sense HCPOs (...) represent their constituencies. We found that policymakers themselves are less concerned with formal mechanisms adopted by groups and are more concerned with credibility, in particular whether HCPOs carry the confidence of their constituents. While some concerns about legitimacy remain, particularly in relation to funding from commercial interests, we argue that HCPOs bring a unique perspective to the policy process and to focus purely on formalistic representation provides only a partial understanding of their representative role and a constrained view of their collective moral claims. (shrink)

Contains over thirty essays which explore the complex contexts of political engagement--family and intimate relationships, friendships, neighborhood, community, work environment, race, religious, and other cultural groupings--that structure perceptions of women's opportunities for political participation.

This collection of theoretical and empirical research on gender and politics assembles contributions from a group of international scholars providing varied accounts of the political interests of gender. It examines how to bridge the gap between discursive and socio-materialist accounts of gender relations and politics. Offering new models for theoretical and empirical research, the first five chapters provide a theoretical framework for the collection, while the following eight chapters shed light on key concepts through detailed case studies of such topics (...) as human rights, womens movements, gendered labor markets, international monetary policy, equality policy, and queer politics.--Publisher's description. (shrink)

The Socratic elenchus is a method of philosophical enquiry attributed by Plato, in his dialogues, to his teacher Socrates. It is a method that uses a dialectic technique of questioning and answering to try to discover the truth of the issue under investigation. For Plato’s Socrates, the fundamental question for human beings is that of how to live, thus the enquiries he initiates concern our understanding of what it is to act ethically. In order to begin to enquire into how (...) to act in a virtuous manner, however, Socrates claimed that we must first know what virtue is. We must, that is, first understand the meaning of virtue before we can consider its application it to any particular kind of action; we must first be able to answer the question “what is x?” before considering whether a particular action or kind of action is an instance of x. This requirement leads to what is known as the ‘Socratic Paradox’: if we have to first establish what x means before we confirm or discount cases of it, then how can our enquiry ever commence; how can we begin in asking questions about x if we don’t yet know what x is? Philosophy has continued to grapple with the Socratic paradox since Plato’s formulation of it. This presentation will explain how the paradox is produced out of the elenchus and consider the ways in which Wittgenstein’s account of family resemblance sheds new light upon this age-old issue. [From the Author]. (shrink)

Berichte zur Wissenschaftsgeschichte, Volume 45, Issue 3, Page 317-331, September 2022.

Berichte zur Wissenschaftsgeschichte, Volume 45, Issue 3, Page 317-331, September 2022.