BackgroundInnovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment.MethodsAn interdisciplinary workshop jointly organised by the University of Oxford (...) and the COST Action CHIP ME gathered clinicians, researchers, ethicists, lawyers, research participants and patient representatives to discuss experiences of using Dynamic Consent, and how such use may facilitate the conduct of specific research tasks. The data collected during the workshop were analysed using a content analysis approach.ResultsDynamic Consent can provide practical, sustainable and future-proof solutions to challenges related to participant recruitment, the attainment of informed consent, participant retention and consent management, and may bring economic efficiencies.ConclusionsDynamic Consent offers opportunities for ongoing communication between researchers and research participants that can positively impact research. Dynamic Consent supports inter-sector, cross-border approaches and large scale data-sharing. Whilst it is relatively easy to set up and maintain, its implementation will require that researchers re-consider their relationship with research participants and adopt new procedures. (shrink)

Personalized medicine aims to tailor disease prevention, diagnosis, and treatment to individuals on the basis of their genes, lifestyle and environments. Patient and interest organizations may potentially play an important role in the realization of PM. This paper investigates the views and perspectives on PM of a variety of PIOs. Semi-structured telephone interviews were conducted among leading representatives of 13 PIOs located in Europe and North-America. The data collected were analysed using a conventional content analysis approach. The PIO representatives supported (...) the realization of PM but feared that many financial, structural and organizational challenges may delay its realization. They encouraged strategies to modernize drug licencing mechanisms, develop research and data sharing infrastructures, and educate patients and health care professionals in PM. Notably, they emphasized the importance of developing PM in an equitable way and taking into consideration the patients’ needs, values and personal situation. Despite varying levels of awareness regarding PM, the PIO representatives expressed willingness to engage in the PM agenda and recommended that PIOs work closely with policy-makers to design PM in a way that truly addresses the needs and concerns of patients. PIOs have the potential to become central drivers of the PM agenda. Collaborations should be further developed between PIOs, researchers, drug developers and health care authorities. (shrink)

This volume rethinks the relations between form and forms of communication, calling for a new logic of representation; it examines the manner in which ...

In diesem philosophischen Werk beschäftigt sich der Autor Carl Hauptmann mit den Geheimnissen der menschlichen Gestalt. Er geht dabei der Frage nach, inwieweit die körperliche Erscheinung eines Menschen Rückschlüsse auf seine Persönlichkeit und sein Schicksal zulässt. Dabei schöpft er aus Erkenntnissen der Antike, Neurowissenschaften und Psychologie. This work has been selected by scholars as being culturally important, and is part of the knowledge base of civilization as we know it. This work is in the "public domain in the United (...) States of America, and possibly other nations. Within the United States, you may freely copy and distribute this work, as no entity (individual or corporate) has a copyright on the body of the work. Scholars believe, and we concur, that this work is important enough to be preserved, reproduced, and made generally available to the public. We appreciate your support of the preservation process, and thank you for being an important part of keeping this knowledge alive and relevant. (shrink)

This essay interprets changes in how "the political" was employed by a group of political theorists connected to the University of California, Berkeley, from the late 1950s up to the present. Initially, the political names both what students of politics ought to study and invokes a way of studying meant to have broad appeal. In later uses, however, the political takes on an evanescent quality compared to the solid realm of generality represented in earlier work. Also, only from the 1970s (...) on is the political explicitly identified with democracy. Finally, later uses of the political no longer invoke a mode of study with broad appeal but one that even most self-described political theorists fail to practice. Though the changes the author analyzes in how the political was conceived are specific to the work of a small group of theorists, they suggest a more general story about the late twentieth-century development of political theory in the American academy. (shrink)

ArgumentMost social scientists today think of data sharing as an ethical imperative essential to making social science more transparent, verifiable, and replicable. But what moved the architects of some of the U.S.’s first university-based social scientific research institutions, the University of Michigan’s Institute for Social Research, and its spin-off, the Inter-university Consortium for Political and Social Research, to share their data? Relying primarily on archived records, unpublished personal papers, and oral histories, I show that Angus Campbell, Warren Miller, Philip Converse, (...) and others understood sharing data not as an ethical imperative intrinsic to social science but as a useful means to the diverse ends of financial stability, scholarly and institutional autonomy, and epistemological reproduction. I conclude that data sharing must be evaluated not only on the basis of the scientific ideals its supporters affirm, but also on the professional objectives it serves. (shrink)

The authors employ Rawls's distinction between the reasonable and rational capacities to show why and how rational choice theory cannot provide adequate explanations of human behavior. According to Rawls, the reasonable capacity, associated with the concept of right and the sense of justice, is no less fundamental a moral power than is the rational, associated with the concept of the good and self-interest. Since rational choice analysis presupposes the primacy of rationality, however, those who rely upon it see persons' expressions (...) of conceptions of right as expressions of rationality. The authors argue that in cases ranging from prisoner's dilemma experiments to the analysis of social institutions, rational choice theorists encounter expressions of the reasonable but cannot, because of their theoretical commitments, take systematic account of them. The article concludes by making some tentative suggestions about the form political analysis based on both the reasonable and the rational capacities might take. (shrink)

"Cognitive Architecture" asks how evolving modalities--from bio-politics to "noo-politics"--can be mapped upon the city under contemporary conditions of urbanization and globalization. Noo-politics, most broadly understood as the power exerted over the life of the mind, reconfigures perception, memory and attention, and also implicates potential ways and means by which neurobiological architecture is undergoing reconfiguration. This volume, motivated by theories such as 'cognitive capitalism' and concepts such as 'neural plasticity, ' shows how architecture and urban processes and products commingle to form (...) complex systems that produce novel forms of networks that empower the imagination and constitute the cultural landscape. This volume rethinks the relations between form and forms of communication, calling for a new logic of representation; it examines the manner in which information, with its non-hierarchical and distributed format is contributing both to the sculpting of brain and production of mind. "Cognitive Architecture" brings together renowned specialists in the areas of political and aesthetic philosophy, neuroscience, socio-cultural and architecture theory, visual and spatial theorists and practitioners. (shrink)

This essay interprets changes in how “the political” was employed by a group of political theorists connected to the University of California, Berkeley, from the late 1950s up to the present. Initially, the political names both what students of politics ought to study and invokes a way of studying meant to have broad appeal. In later uses, however, the political takes on an evanescent quality compared to the solid realm of generality represented in earlier work. Also, only from the 1970s (...) on is the political explicitly identified with democracy. Finally, later uses of the political no longer invoke a mode of study with broad appeal but one that even most self-described political theorists fail to practice. Though the changes the author analyzes in how the political was conceived are specific to the work of a small group of theorists, they suggest a more general story about the late twentieth-century development of political theory in the American academy. (shrink)

As part of the Securities and Exchange Commission’s revision of Regulation S–K, which lays out reporting requirements for publicly-listed companies, many investors proposed the mandatory disclosure of sustainability information in the form of environmental, social and governance data. However, progress is contingent on collecting evidence regarding which sustainability disclosures are financially material. To inform this issue, we examine materiality standards developed by the Sustainability Accounting Standards Board. Firms voluntarily disclosing more SASB-identified sustainability information exhibit greater price informativeness, while the disclosure (...) of non-SASB information does not relate to informativeness. The results are robust to a changes analysis and a difference-in-differences analysis that exploits the staggered release of SASB standards across different industries over time. We also document stronger results for firms with higher exposure to sustainability issues, poorer sustainability ratings, greater institutional and socially responsible investment fund ownership, and coverage from analysts with lower portfolio complexity. (shrink)

Individual research results from population-based genetic and genomic research are traditionally not disclosed to research participants. Current practices of non-disclosure are, however, being challenged by an increasing number of scientists, ethicists and policy-makers who make arguments in favour of disclosing at least individual results of potential health or lifestyle significance to research participants. Simultaneously, research participants are expressing greater interest in accessing their results. This article first provides an overview of main arguments for and against the disclosure of individual research (...) results to research participants. Next, it discusses the need for a move from the current ethical framework under which researchers operate, which is rather protective of research participants and does not encourage disclosure, to a new ethical framework that would better cope with current developments within the field. Comparative analysis of existing and potential ethical frameworks favours implementation of an ethical framework aimed at enhancing the autonomy of research participants through the disclosure of individual research results. Finally, this article explores practical models of disclosure that could be used under such a new framework. A model of disclosure that takes into account the two key criteria of communicability of research results and the research participant’s preferences to determine which results to disclose is found to comply best with the selected ethical framework. (shrink)

Romi su veoma disperzirana etnicka zajednica. Od kako je nad Kosovom uspostavljen medjunarodni protektorat, Romi su najbrojnija nacionalna manjina u Jugoslaviji. Kada se govori o diskriminaciji i integraciji Roma, treba imati u vidu da su do sada najcesce bili izlozeni negativnim vidovima diskriminacije, a da je integracija cesto znacila fakticku asimilaciju. Kako postoji i pozitivna diskriminacija manjinskih grupa u drustvu, ocigledno je da u osnovni pristup 'romskom pitanju' podrazumeva strateski obrat ponasanja svih drzavnih institucija i drugih drustvenih cinilaca od negativne (...) ka pozitivnoj diskriminaciji i od asimilacije ka istinskoj integraciji Roma. Osnovni pristup za koji se autor zalaze je onaj koji omogucava Romima da budu nasi ravnopravni sugradjani. Krugovi bede u kojima se nalazi romsko stanovnistvo postaju sve dublji. Medjutim, carstvo bede se siri jugoslovenskim prostorom. Osiromasenje je opste. Devastacija uslova zivota za sve gradjane Jugoslavije, odnosno Srbije i Crne Gore, izuzev uskog kruga ratnih profitera i ljudi iz centara moci, traje vise od jedne decenije. Srednji slojevi su nestali sa drustvene scene, a mnoge porodice su dosle u subproletersku zonu siromastva. (shrink)