Advances in genomic technologies and the promise of "personalised medicine" have spurred the interest of researchers, healthcare systems, and the general public. However, the success of population-based genetic studies depends on the willingness of large numbers of individuals and diverse communities to grant researchers access to detailed medical and genetic information. Certain features of this kind of research - such as the establishment of biobanks and prospective data collection from participants' electronic medical records - make the potential risks and benefits (...) to participants difficult to specify in advance. Therefore, community input into biobank processes is essential. In this report, we describe community engagement efforts undertaken by six United States biobanks, various outcomes from these engagements, and lessons learned. Our aim is to provide useful insights and potential strategies for the various disciplines that work with communities involved in biobank-based genomic research. (shrink)

This article examines the debate about the normative relevance of social constructivism, arguing that the criticisms of Winner, Radder, and others are fundamentally accurate. The article argues that a combination of Radder's notion of nonlocal values and Martin's concern for deliberative interventions may offer a theoretical exit from the normative irrelevance that marks constructivism. The article goes on to suggest that theoretical and praxeological developments in two other literatures, participatory public policy analysis and deliberative democracy, may provide fruitful initiatives for (...) constructivist scholars eager to address normative concerns. The article next reviews a range of problems facing deliberative and participatory practices and suggests ways in which constructivist insights might help to advance deliberative theory. (shrink)

The most widely debated conception of democracy in recent years is deliberative democracy--the idea that citizens or their representatives owe each other mutually acceptable reasons for the laws they enact. Two prominent voices in the ongoing discussion are Amy Gutmann and Dennis Thompson. In Why Deliberative Democracy?, they move the debate forward beyond their influential book, Democracy and Disagreement.What exactly is deliberative democracy? Why is it more defensible than its rivals? By offering clear answers to these timely questions, Gutmann and (...) Thompson illuminate the theory and practice of justifying public policies in contemporary democracies. They not only develop their theory of deliberative democracy in new directions but also apply it to new practical problems. They discuss bioethics, health care, truth commissions, educational policy, and decisions to declare war. In "What Deliberative Democracy Means," which opens this collection of essays, they provide the most accessible exposition of deliberative democracy to date. They show how deliberative democracy should play an important role even in the debates about military intervention abroad.Why Deliberative Democracy? contributes to our understanding of how democratic citizens and their representatives can make justifiable decisions for their society in the face of the fundamental disagreements that are inevitable in diverse societies. Gutmann and Thompson provide a balanced and fair-minded approach that will benefit anyone intent on giving reason and reciprocity a more prominent place in politics than power and special interests. (shrink)

BackgroundThe amount of research utilizing health information has increased dramatically over the last ten years. Many institutions have extensive biobank holdings collected over a number of years for clinical and teaching purposes, but are uncertain as to the proper circumstances in which to permit research uses of these samples. Research Ethics Boards (REBs) in Canada and elsewhere in the world are grappling with these issues, but lack clear guidance regarding their role in the creation of and access to registries and (...) biobanks.MethodsChairs of 34 REBS and/or REB Administrators affiliated with Faculties of Medicine in Canadian universities were interviewed. Interviews consisted of structured questions dealing with diabetes-related scenarios, with open-ended responses and probing for rationales. The two scenarios involved the development of a diabetes registry using clinical encounter data across several physicians' practices, and the addition of biological samples to the registry to create a biobank.ResultsThere was a wide range of responses given for the questions raised in the scenarios, indicating a lack of clarity about the role of REBs in registries and biobanks. With respect to the creation of a registry, a minority of sites felt that consent was not required for the information to be entered into the registry. Whether patient consent was required for information to be entered into the registry and the duration for which the consent would be operative differed across sites. With respect to the creation of a biobank linked to the registry, a majority of sites viewed biobank information as qualitatively different from other types of personal health information. All respondents agreed that patient consent was needed for blood samples to be placed in the biobank but the duration of consent again varied.ConclusionParticipants were more attuned to issues surrounding biobanks as compared to registries and demonstrated a higher level of concern regarding biobanks. As registries and biobanks expand, there is a need for critical analysis of suitable roles for REBs and subsequent guidance on these topics. The authors conclude by recommending REB participation in the creation of registries and biobanks and the eventual drafting of comprehensive legislation. (shrink)

Democratic theorists often place deliberative innovations such as citizen's panels, consensus conferences, planning cells, and deliberative polls at the center of their hopes for deliberative democratization. In light of experience to date, the authors chart the ways in which such mini-publics may have an impact in the “macro” world of politics. Impact may come in the form of actually making policy, being taken up in the policy process, informing public debates, market-testing of proposals, legitimation of public policies, building confidence and (...) constituencies for policies, popular oversight, and resisting co-option. Exposing problems and failures is all too easy. The authors highlight cases of success on each of these dimensions. (shrink)

This latest work from one of the world's leading political philosophers will appeal to audiences from a variety of fields, including philosophy, political science, women's studies, ethnic studies, sociology, and communications studies.

This paper analyses the recent widespread moves to 'restore' public trust in science by developing an avowedly two-way, public dialogue with science initiatives. Noting how previously discredited and supposedly abandoned public deficit explanations of 'mistrust' have actually been continually reinvented, it argues that this is a symptom of a continuing failure of scientific and policy institutions to place their own science-policy institutional culture into the frame of dialogue, as possible contributory cause of the public mistrust problem.