Pub Date : 2019-08-06DOI: 10.4135/9781483381503.n923
Mu-cai Dai
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.
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{"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}
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.
{"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}
Abstract This is a review of Christian Munthe's The Price of Precaution and the Ethics of Risks.
摘要本文对克里斯蒂安·芒特的《预防的代价与风险伦理》进行了评述。
{"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}
Abstract This is a review of Alan Wertheimer's Rethinking the Ethics of Clinical Research.
摘要本文对艾伦·韦特海默的《临床研究伦理学的再思考》进行了评述。
{"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}
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.
{"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}
C. Douglas, C. V. van El, M. Radstake, Sarah R. van Teeffelen, M. Cornel
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.
国际上有一种讨论，通过将新生儿公共健康筛查项目产生的干血斑(DBS)卡片收集正规化(延长)保留并扩大其在医学研究和开发(R&D)实践中的使用，将其收集转变为一种生物库。鉴于新生儿足跟穿刺筛查的规模，这些血液样本越来越被视为医学研发的丰富生物学数据。由于捐赠者是新生儿，而DBS的主要目的是医疗保健，因此卡片收集不是传统的生物银行。但是，如果能够得到社会的支持，如果能够建立一个管理机构来处理长期保留和使用政策，则可以这样对待。获得对生物医学研究支持的一项战略是让公民、捐助者、患者及其代表和倡导者参与研发过程的各个阶段和层次。本文探讨了患者参与医疗研发(特别是生物银行)治理的现有概念的可行性，这与荷兰DBS收集可能转变为更正式的生物银行有关。在此过程中，我们描述了目前在医疗研发中使用DBS卡的一些挑战，并探讨了患者在一般研究过程中发挥的作用，特别是在生物银行以及DBS收藏品的管理中。我们将重点关注荷兰DBS馆藏的当前管理结构，并探讨患者和公众需要扮演什么角色来解决当前对其存储、管理和使用的改变建议。最后，我们探索了一种“适应性治理”模式，在这种模式下，创建一个参与者协会来选举一个参与者委员会，与生物银行的管理结构一起运作(O ' doherty et al. 2011)，这可以提高DBS收集的研发决策的透明度和信任度。这既不会排除患者的参与，也不会将这种参与定位为对治理挑战的一种全面的回答。
{"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}
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.
{"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}
This is a book review of Is a Little Pollution Good for You? Incorporating Societal Values in Environmental Health Research by Kevin C. Elliott.
这是一篇书评《一点点污染对你有好处吗?》将社会价值纳入环境健康研究，作者:Kevin C. Elliott。
{"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}
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