Studies in ethics, law, and technology最新文献

{"title":"Political Legitimacy","authors":"Mu-cai Dai","doi":"10.4135/9781483381503.n923","DOIUrl":"https://doi.org/10.4135/9781483381503.n923","url":null,"abstract":"In Political Legitimacy, a distinguished interdisciplinary group of scholars in political science, law, and philosophy examine one of the most challenging and important concepts in contemporary politics: legitimacy. The twelve essays in this volume, the latest installment in the NOMOS series, take up fundamental philosophical questions about the appropriate scope and domain of legitimacy and the justified exercise of political power, as well as empirical questions about the structure of citizens’ beliefs about compliance and justice. The essays also speak to urgent concerns for contemporary politics, including whether “animus” should matter for the legitimacy of political decisions and the range of institutions (international institutions, labor unions, and so forth) for which legitimacy is relevant. The volume is in three parts. The first third addresses basic questions of the legitimacy of the state and its regime, drawing on competing traditions in the history of political thought (Kant, Hobbes, and Aristotle). The second takes up the reasons according to which institutional authority may be exercised. The final part turns to the empirical study of legitimacy and compliance, and to the relationship between what the authors describe as moral or normative accounts of legitimacy and sociological or descriptive legitimacy.","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"8 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2019-08-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89674694","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Review of Reframing Rights: Bioconstitutionalism in the Genetic Age","authors":"D. Patrone","doi":"10.1515/1941-6008.1170","DOIUrl":"https://doi.org/10.1515/1941-6008.1170","url":null,"abstract":"","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"7 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2013-12-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/1941-6008.1170","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"66804820","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Review of Interfaces on Trial 2.0","authors":"D. Koepsell","doi":"10.1515/1941-6008.1166","DOIUrl":"https://doi.org/10.1515/1941-6008.1166","url":null,"abstract":"","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"46 22 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2013-04-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/1941-6008.1166","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"66804903","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"From ICH to IBH in Biobanking? A Legal Perspective on Harmonization, Standardization and Unification","authors":"A. Tassé","doi":"10.1515/1941-6008.1180","DOIUrl":"https://doi.org/10.1515/1941-6008.1180","url":null,"abstract":"Abstract Biobanking activities are increasingly at the core of research practices. Access to such resources is a major interest as it allows the creation of very large datasets and optimizes the use of previously collected research material. The last decade has witnessed the creation of major international research consortia, such as ENGAGE and BioSHaRE.EU, but promoting biobank networking and maximizing public health benefits requires at least some degree of harmonization. In international research initiatives, any discrepancy between national/regional legal frameworks creates hurdles for the development and implementation of cross-border research activities. Unification, standardization and harmonization of national/regional legal frameworks are necessary to minimize these legal discrepancies. However, these concepts have precise legal meanings, and the use of one framework or another leads to specific and different consequences. In order to provide a broad overview of consent issues and solutions emerging from international genetic and genomic research consortia, both the ENGAGE and BioSHaRE.EU consortia are used as a proof of concept. Through a theoretical legal perspective on harmonization, standardization and unification, consent challenges raised by international genetic and genomic research consortia are identified, and solutions proposed. It is essential to discuss the most appropriate solution to promote international research consortia interoperability while respecting both legal and ethical frameworks.","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"7 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2013-04-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/1941-6008.1180","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"66804961","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Price of Precaution and the Ethics of Risk","authors":"D. Resnik","doi":"10.1515/1941-6008.1168","DOIUrl":"https://doi.org/10.1515/1941-6008.1168","url":null,"abstract":"Abstract This is a review of Christian Munthe's The Price of Precaution and the Ethics of Risks.","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"7 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2013-01-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/1941-6008.1168","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"66804756","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Review of Rethinking the Ethics of Clinical Research","authors":"D. Resnik","doi":"10.1515/1941-6008.1167","DOIUrl":"https://doi.org/10.1515/1941-6008.1167","url":null,"abstract":"Abstract This is a review of Alan Wertheimer's Rethinking the Ethics of Clinical Research.","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"7 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2013-01-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/1941-6008.1167","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"66805037","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Public Perceptions and Biobanking: What Does the Research Really Say?","authors":"C. Rachul, A. McGuire, T. Caulfield","doi":"10.1515/1941-6008.1177","DOIUrl":"https://doi.org/10.1515/1941-6008.1177","url":null,"abstract":"Abstract Collection, storage, and use of biological specimens and clinical data is a historically contentious practice, especially among certain populations. It is therefore believed that public perceptions and opinions should be considered in the exploration of ethical issues associated with biobanking. It is hoped that this research will both help to illuminate the nature and depth of the social issues and inform the development of policy responses. We collected original research articles that dealt with public perceptions of biobanking initiatives, including both quantitative and qualitative findings. The intent was to elucidate public opinion on persistent key issues, including willingness to participate, consent, incidental findings and return of results, privacy, withdrawal, and ownership and control of provided material. While a wide range of issues and perspectives were explored in the research articles, the focus of this review is on the above list of key issues. With few exceptions (e.g., return of results and withdrawal), what is disclosed by this review of survey work is a lack of consensus on key issues, especially in the context of the nature of consent required.","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"6 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2012-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/1941-6008.1177","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"66804937","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Politics of Representation in the Governance of Emergent 'Secondary Use' Biobanks: The Case of Dried Blood Spot Cards in the Netherlands","authors":"C. Douglas, C. V. van El, M. Radstake, Sarah R. van Teeffelen, M. Cornel","doi":"10.1515/1941-6008.1178","DOIUrl":"https://doi.org/10.1515/1941-6008.1178","url":null,"abstract":"Abstract There is an international discussion to transform the collection of dried blood spot (DBS) card collections resulting from neonatal public health screening programs into a kind of biobank through the formalization of their (prolonged) retention and by expanding their use in medical research and development (R&D) practices. Given the scale of neonatal heel prick screening, these blood samples are increasingly being considered as a wealth of biological data for medical R&D. Due to the fact that donors are newborns and that the primary purpose of DBS is health care, the card collection is not a conventional biobank. However, it may be treated as such if there could be societal support and if a management body could be developed to deal with prolonged retention and use policies. One strategy to gain support for biomedical research is to involve citizens, donors, patients and their representatives and advocates at various stages and levels of the R&D process. This article explores the feasibility of existing notions of patient participation in the governance of medical R&D (in particular biobanking) in relation to the possible transformation of the Dutch DBS collection into a more formal biobank. In doing so we describe some of the current challenges of using of DBS cards for medical R&D, and explore what role patients have played in research processes in general and specifically in biobanking as well as the management of DBS collections. We focus on the current management structure of the Dutch DBS collection, and explore what role for patients and publics is needed to address the current proposal for changes to their storage, management, and use. We conclude by exploring a model of ‘adaptive governance’ in which a Participant Association is created to elect a Participant Board to operate alongside and within the biobank’s management structure (O’Doherty et al. 2011), which could work to increase transparency and trust of R&D decisions on DBS collection. This would neither preclude patient involvement, nor positions such involvement as a kind of panoptic answer to challenges in governance.","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"6 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2012-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/1941-6008.1178","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"66804946","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"Patientcentricity\": An Editorial","authors":"C. Corradetti, P. Pramstaller, D. Mascalzoni","doi":"10.1515/1941-6008.1174","DOIUrl":"https://doi.org/10.1515/1941-6008.1174","url":null,"abstract":"Abstract On 12 March 2009 Time dedicated an entire issue indicating the top ten world-changing ideas for the next future and among these a special attention was dedicated to biobanks. The article asks a very important and challenging question: are there benefits that can be reasonably expected from very costly biomaterial storage and — if yes — which kind of benefits are these? What is insisted upon is the identification of the following burning ethical issue: privacy and security of data.The need of deepening these social and ethical aspects related to the biobank enterprise lead to the organization of the conference on “patientcentricity”. The conference took place in Rome on 28-29 September 2011 and it was organized by the Center of Biomedicine of the European Academy of Bolzano thanks to the financial support of the Italian Ministry of University and Research.This special issue introduces that conference, and this editorial introduces our motivations for this work.The wish and hope of the guest editors is that such discussions will contribute to opening new research and policy agendas by addressing new challenges and helping out in thinking new solutions.","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"6 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2012-01-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/1941-6008.1174","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"66804884","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Review of Is a Little Pollution Good for You? Incorporating Societal Values in Environmental Health Research","authors":"D. Resnik","doi":"10.1515/1941-6008.1163","DOIUrl":"https://doi.org/10.1515/1941-6008.1163","url":null,"abstract":"This is a book review of Is a Little Pollution Good for You? Incorporating Societal Values in Environmental Health Research by Kevin C. Elliott.","PeriodicalId":88318,"journal":{"name":"Studies in ethics, law, and technology","volume":"5 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2012-01-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/1941-6008.1163","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"66804838","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}