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Author : UK Biobank (Organization)
Publisher :
ISBN 13 :
Total Pages : pages
Book Rating : 4.:/5 (234 download)
Download or read book UK Biobank written by UK Biobank (Organization) and published by . This book was released on with total page pages. Available in PDF, EPUB and Kindle. Book excerpt:
Author : Christian Lenk
Publisher : Springer Science & Business Media
ISBN 13 : 9400716737
Total Pages : 240 pages
Book Rating : 4.4/5 (7 download)
Download or read book Biobanks and Tissue Research written by Christian Lenk and published by Springer Science & Business Media. This book was released on 2011-07-30 with total page 240 pages. Available in PDF, EPUB and Kindle. Book excerpt: The research field of biobanks and tissue research is highly promising. Many projects around the globe are involved in the collection of human tissue and health data for research purposes. These initiatives are driven by the perspective of decisive breakthroughs in the knowledge of the genetic pathways involved in widespread diseases. However, there are considerable ethical and legal challenges to be considered as well. These challenges encompass the use of body material for research purposes, the misuse of genetic and other health data by third parties, trust in science and medicine, concerns regarding privacy, use of genetic data for forensic applications by the state and the police, and regulatory issues. This volume is divided into three parts: the inclusion of the public, the rights of donors and patients, examples and recommendations for the future of tissue research. It presents a comprehensive overview of the most important topics in the field by renowned scholars in medical ethics and biolaw.
Author : Dr Jane Kaye
Publisher : Ashgate Publishing, Ltd.
ISBN 13 : 1409492109
Total Pages : 468 pages
Book Rating : 4.4/5 (94 download)
Download or read book Principles and Practice in Biobank Governance written by Dr Jane Kaye and published by Ashgate Publishing, Ltd.. This book was released on 2012-12-28 with total page 468 pages. Available in PDF, EPUB and Kindle. Book excerpt: Rapid technological advances, the establishment of large-scale biobanks, and the exchange of data across international boundaries raise a variety of questions for regulators struggling with the problem of how to govern such stores of information and the processes connected with them. Engaging with the pressing issues of privacy, consent, access to data, and benefit sharing, Principles and Practice in Biobank Governance draws together the latest empirical research from the UK, Europe, America, Australia and Asia to focus on these challenges. Current models of governance are critiqued, principles and policies are debated, and new models and theoretical frameworks are presented through this intellectually stimulating, informative volume. This truly international volume offers new insights from a range of disciplinary perspectives and will be essential reading for policy makers and scholars across a range of social sciences, including sociology, bioethics, law and social policy.
Author : Wellcome Trust (London, England)
Publisher :
ISBN 13 :
Total Pages : pages
Book Rating : 4.:/5 (877 download)
Download or read book The UK Biobank written by Wellcome Trust (London, England) and published by . This book was released on 2002 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt:
Author : Herbert Gottweis
Publisher : Routledge
ISBN 13 : 1134090277
Total Pages : 248 pages
Book Rating : 4.1/5 (34 download)
Download or read book Biobanks written by Herbert Gottweis and published by Routledge. This book was released on 2008-04-28 with total page 248 pages. Available in PDF, EPUB and Kindle. Book excerpt: This groundbreaking book makes it clear that biobanks are a phenomenon that cannot be disconnected from considerations of power, politics and the reshaping of current practices in governance.
Author : Elena Salvaterra
Publisher : Bentham Science Publishers
ISBN 13 : 1681085100
Total Pages : 128 pages
Book Rating : 4.6/5 (81 download)
Download or read book Advances in Biobanking Practice Through Public and Private Collaborations written by Elena Salvaterra and published by Bentham Science Publishers. This book was released on 2017-07-10 with total page 128 pages. Available in PDF, EPUB and Kindle. Book excerpt: Advances in Biobanking Practice Through Public and Private Collaborations presents an analysis of methods and current models of partnership between public and private organizations designed to improve biobanking practices in European countries. Chapters describe the state-of-the-art of public-private collaborations in biobanking on a global scale, innovative approaches to public-private partnership the role of a quality management system in biobanking collaborations, quality standard criteria specifically shaped for tumor biobanks, theoretical and practical access conditions to biobanks, the general legal framework governing biobanks at national, European and international levels and a concrete public-private partnership model for managing sample requests. The contributions in this book include examples of established biobanking institutions (such as Spanish National Cancer Research Centre, National Institute of Health, Italy, and 3C-R, France among others) which serve to give readers a concrete perspective on current biobanking practices and relevant legal and ethical issues that shape the field. This book is an ideal handbook for all medical researchers, healthcare professionals and biobanking stakeholders seeking information about international biobanking practices and business models.
Author : Zhengming Chen
Publisher : Springer Nature
ISBN 13 : 9811576661
Total Pages : 212 pages
Book Rating : 4.8/5 (115 download)
Download or read book Population Biobank Studies: A Practical Guide written by Zhengming Chen and published by Springer Nature. This book was released on 2020-12-09 with total page 212 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book describes some of the key epidemiological principles, scientific approaches and quality assurance frameworks required to design and conduct biobank studies in various settings. Using examples from contemporary biobanks, the book addresses the design features and practical procedures needed in order to launch and manage biobank studies, including consent and regulatory approval, the organisation of field work, management of data and biological samples, follow-up and verification of disease outcomes, development of IT systems for data collection, quality assurance and study management. Over the last two decades, several large biobank studies have been initiated in different populations, intended to greatly enhance the development of precision medicine. Contemporary biobank studies are extremely large and complex, and involve several decades of follow-up. Such studies pose major challenges in terms of ensuring rapid recruitment, obtaining high-quality data, minimising loss to follow-up, reliably classifying disease outcomes, and optimising the use of the biological samples collected. In this regard, the key to success lies not in planning the perfect study, but in planning the most appropriate, reliable, sustainable and future-proof study given the practical constraints of available resources, time and capacity. The authors of this handbook are epidemiologists, clinicians, software engineers, and laboratory and data scientists with extensive experience in conducting large biobank studies. The eight chapters can be read separately or together, and provide readers with essential information on how to design, implement and manage these studies. The state-of-the-art, innovative and scalable approaches and methodologies presented here are intended to stimulate the development of further population-based and hospital-based biobank studies in diverse populations.
Author : Jane Kaye
Publisher : Bloomsbury Publishing
ISBN 13 : 1847318843
Total Pages : 380 pages
Book Rating : 4.8/5 (473 download)
Download or read book Governing Biobanks written by Jane Kaye and published by Bloomsbury Publishing. This book was released on 2012-02-03 with total page 380 pages. Available in PDF, EPUB and Kindle. Book excerpt: Biobanks are proliferating rapidly worldwide because they are powerful tools and organisational structures for undertaking medical research. By linking samples to data on the health of individuals, it is anticipated that biobanks will be used to explore the relationship between genes, environment and lifestyle for many diseases, as well as the potential of individually-tailored drug treatments based on genetic predisposition. However, they also raise considerable challenges for existing legal frameworks and research governance structures. This book critically examines the current governance structures in place for biobanks in England and Wales. It shows that the technologies, techniques and practices involved in biobanking do not always conform neatly to existing legal principles and frameworks that apply to other areas of medical research. Using a socio-legal approach, including interview data gathered from the scientific community, this book provides unique insights and makes recommendations about appropriate governance mechanisms for biobanking in the future. It also explores the issues around the secondary use of information, such as consent and how to protect privacy, when biobanks are accessed by a number of different third parties. These issues have relevance both within England and Wales and to a wide international audience, as well as for other areas where large datasets are used.
Author : Timo Minssen
Publisher : Edward Elgar Publishing
ISBN 13 : 1788116194
Total Pages : 304 pages
Book Rating : 4.7/5 (881 download)
Download or read book Global Genes, Local Concerns written by Timo Minssen and published by Edward Elgar Publishing. This book was released on 2019 with total page 304 pages. Available in PDF, EPUB and Kindle. Book excerpt: With interdisciplinary chapters written by lawyers, sociologists, doctors and biobank practitioners, Global Genes, Local Concerns identifies and discusses the most pressing issues in contemporary biobanking. Addressing pressing questions such as how do national biobanks best contribute to translational research and how could academic and industrial exploitation, ownership and IPR issues be addressed and facilitated, this book contributes to the continued development of international biobanking by highlighting and analysing the complexities in this important area of research.
Author : Peter Dabrock
Publisher : Springer Science & Business Media
ISBN 13 : 354078845X
Total Pages : 267 pages
Book Rating : 4.5/5 (47 download)
Download or read book Trust in Biobanking written by Peter Dabrock and published by Springer Science & Business Media. This book was released on 2012-02-22 with total page 267 pages. Available in PDF, EPUB and Kindle. Book excerpt: Biobanks are promising instruments of biomedical research and of transnational medicine in particular. Ethical, legal and social issues associated with biobanking, however, have recently led to a more critical view on this concept. All efforts addressing these concerns have been grounded on well-established standards of biomedical ethics such as informed consent procedures, protection of individual autonomy, benefit sharing etc. By additionally highlighting the widely neglected aspect of trust, this book aims at broadening the horizon of the ELSI-debate and thus filling a gap in current research on biobanking. The contributions of leading experts and junior researchers cover a wide field of disciplines relevant for biobanking including law, ethics, medicine, public health, social sciences, philosophy and theology.
Author : Feridoun Karimi-Busheri
Publisher : Springer
ISBN 13 : 331920579X
Total Pages : 188 pages
Book Rating : 4.3/5 (192 download)
Download or read book Biobanking in the 21st Century written by Feridoun Karimi-Busheri and published by Springer. This book was released on 2015-09-29 with total page 188 pages. Available in PDF, EPUB and Kindle. Book excerpt: Biobanking, an emerging field supported by academia, industry and health administrators alike, is distinctly different today from the practice that once defined it. The science of Biobanking, which initially involved simply storing blood or tissue samples in a freezer, is now a highly sophisticated field of research, and expected to grow exponentially over the next decade or two. This book aims to serve the purpose of further enriching the available literature on Biobanking, by offering unique and more useful collection of ideas for the future. The book outlines the experiences of developing modern Biobanking repositories in different countries, whilst covering specific topics regarding the many aspects of Biobanking. This book will be of interest to a wide range of readers including: academics, students, volunteers and advocates of patients’ rights.
Author : Jane Reichel
Publisher : Springer Nature
ISBN 13 : 3030493881
Total Pages : 432 pages
Book Rating : 4.0/5 (34 download)
Download or read book GDPR and Biobanking written by Jane Reichel and published by Springer Nature. This book was released on 2021 with total page 432 pages. Available in PDF, EPUB and Kindle. Book excerpt: Part I Setting the scene -- Introduction: Individual rights, the public interest and biobank research 4000 (8) -- Genetic data and privacy protection -- Part II GDPR and European responses -- Biobank governance and the impact of the GDPR on the regulation of biobank research -- Controller' and processor's responsibilities in biobank research under GDPR -- Individual rights in biobank research under GDPR -- Safeguards and derogations relating to processing for archiving purposes in the scientific purposes: Article 89 analysis for biobank research -- A Pan-European analysis of Article 89 implementation and national biobank research regulations -- EEA, Switzerland analysis of GDPR requirements and national biobank research regulations -- Part III National insights in biobank regulatory frameworks -- Selected 10-15 countries for reports: Germany -- Greece -- France -- Finland -- Sweden -- United Kingdom -- Part IV Conclusions -- Reflections on individual rights, the public interest and biobank research, ramifications and ways forward. .
Author : Karine Sargsyan
Publisher : Springer Nature
ISBN 13 : 3030876373
Total Pages : 234 pages
Book Rating : 4.0/5 (38 download)
Download or read book Biobanks in Low- and Middle-Income Countries: Relevance, Setup and Management written by Karine Sargsyan and published by Springer Nature. This book was released on 2022-03-15 with total page 234 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book introduces the fundamentals of biobanking and guides through the practical planning thereof, with a special focus on the situation in low- and middle-income countries. On the example of the setup of a Ukrainian biobank the book discusses the main steps and aspects of successful biorepository implementation and management. Topics covered include collection, storage and shipping of samples, establishment of an IT system, development of a sustainability plan, and project and risk management. Furthermore, the importance of the formation of international biobanking societies such as the Ukraine Association of Biobanks is highlighted, and their main objectives and tasks are discussed. The book addresses life science and business professionals as well as national authorities who are interested in biobanking in general and in setting up a biobank in particular.
Author : Anna F. Dominiczak
Publisher : Elsevier Health Sciences
ISBN 13 : 0444514562
Total Pages : 284 pages
Book Rating : 4.4/5 (445 download)
Download or read book Genetics of Hypertension written by Anna F. Dominiczak and published by Elsevier Health Sciences. This book was released on 2007-01-01 with total page 284 pages. Available in PDF, EPUB and Kindle. Book excerpt: Classic and modern tools of genetics have been applied to hypertension research for some 20 years. This volume in the Handbook of Hypertension series aims to go beyond a simple summary of discoveries and provides a critical commentary on many controversial issues. It will be particularly useful for clinician scientists at all stages of their careers, graduate students and post-doctoral scientists as well as all those interested in cardiovascular medicine and research throughout the entire spectrum from bench to bedside. As in every relatively young area of research, the initial excitement over the early positive observations has not always been confirmed by subsequent larger studies with greater statistical power. Issues related to current recommendations on design of studies and their analysis are therefore included. Pharmacogenetics and pharmacogenomics have been the subjects of many debates in recent years and are of particular importance in hypertension as life-long treatments, frequently with multiple drugs are given to millions of people world-wide. A critical appraisal of this controversial topic is provided. Several chapters on experimental genetics of hypertension with a special focus on physiological genomics are also included.
Author : Giovanni Pascuzzi
Publisher : Springer Science & Business Media
ISBN 13 : 3642331165
Total Pages : 334 pages
Book Rating : 4.6/5 (423 download)
Download or read book Comparative Issues in the Governance of Research Biobanks written by Giovanni Pascuzzi and published by Springer Science & Business Media. This book was released on 2013-01-30 with total page 334 pages. Available in PDF, EPUB and Kindle. Book excerpt: In the last few years, the boom in biobanking has prompted a lively debate on a host of interrelated legal issues, such as the Gordian knot of the ownership of biological materials, as well as privacy concerns. The latter are due to the difficulty of accepting that biological samples must be completely anonymous without making it practically impossible to exploit their information potential. The issues also include the delicate role and the changing content of the donor’s “informed consent” as the main legal tool that may serve to link the privacy and property interests of donors with the research interests and the set of principles that should be at the core of the biobanking practice. Lastly, the IP issues and the patentability of biological samples as well as the protection of databases storing genetic information obtained from the samples are covered. Collecting eighteen essays written by eminent scholars from Italy, the US, the UK and Canada, this book provides new solutions to these problems. From a comparative viewpoint, it explores the extent to which digital technology may assist in tackling the numerous regulatory issues raised by the practice of biobanking for research purposes. These issues may be considered and analyzed under the traditional paradigms of Property, Privacy, Informed Consent and Intellectual Property.
Author : Nils Hoppe
Publisher : Universitätsverlag Göttingen
ISBN 13 : 3863950313
Total Pages : 183 pages
Book Rating : 4.8/5 (639 download)
Download or read book The Ethical and Legal Regulation of Human Tissue and Biobank Research in Europe written by Nils Hoppe and published by Universitätsverlag Göttingen. This book was released on 2011 with total page 183 pages. Available in PDF, EPUB and Kindle. Book excerpt: "Human tissue and biobank research is of increasing importance for understanding the causes of widespread diseases and developing effective therapies. However, while the success of biobank research depends on the availability of a large number of samples and the consolidation of collections across country borders is very desirable from the perspective of researchers, the legal and ethical requirements for the procurement, storage and use of human tissue samples are rather heterogeneous across different countries. Moreover, the lack of comprehensive supranational regulation on human tissue and biobanking can be seen as posing a serious threat to transnational biomedical research. Against this background, it was one of the aims of the EU-funded Tiss.EU project ('Evaluation of Legislation and Related Guidelines on the Procurement, Storage and Transfer of Human Tissues and Cells in the European Union--an Evidence-Based Impact Analysis') to analyse the ethical and legal regulation of human tissue and biobank research across the 27 European Member States plus Switzerland. The results of nine international workshops and three conferences are gathered in this volume. While the country reports evaluate the implementation of ethical and legal guidelines at a national level, point out their strengths and deficits, and, where required, create an evidence base for the revision of said legislation, the conference reports address more general ethical and legal issues in this field. The volume is completed by a final presentation of project's results"--Publisher's description
Author : Rajam Neethu
Publisher : Kluwer Law International B.V.
ISBN 13 : 9403506229
Total Pages : 342 pages
Book Rating : 4.4/5 (35 download)
Download or read book Governing Intellectual Property Rights Within Publicly Funded Biobanks written by Rajam Neethu and published by Kluwer Law International B.V.. This book was released on 2019-06-21 with total page 342 pages. Available in PDF, EPUB and Kindle. Book excerpt: Governing Intellectual Property Rights Within Publicly Funded Biobanks R. Neethu The boom in biobanks and health databases as research infrastructures have evoked various legal and ethical debates. Since then numerous new developments have emerged such as digitalization, big-data research and artificial intelligence which has important implications for biobank-based research and collaborations. This new paradigm offers new legal challenges for commercial involvement particularly within a publicly funded setting. In this innovative book, the author shows that securing maximum social benefit out of the knowledge emanating from the use of biobank resources lies in managing intellectual property inputs and outputs effectively in keeping with the values core to such research. Focusing on the challenges of involving intellectual property rights (IPRs) particularly in the precompetitive phase of biobank-based research, the book offers an extensive understanding of the role of different IPRs and identifies the gaps in the law and its implications for biobanks. The analysis covers important aspects in relation to biobanks such as: Digital integration and biomedical data storage; Ownership of biological samples; Commercialization and benefit sharing; Partnership models; Public sector research; Disposition of samples; Consent; Cross-border exchange; Trade secrecy; Privacy; Regulatory stewardship; Business strategies; Ethical considerations over biological resources; Patenting of inventions relating to personalized medicine; Ethical parameters within patent law; and Rights regarding genetic data and databases. The book includes observations, case studies and interviews conducted by the author. In conclusion, the author offers cogent recommendations for legal interoperability of IP rules and research practices designed to enhance the ability of biobanks to share, access and reuse data. This book is the first of its kind to explore the organizational and legislative choices for biobanks particularly while engaging in the protection of research results and technology transfer within a publicly funded setting. It will be of substantial interest to all stakeholders in biobanking, especially policymakers, biobankers and researchers working in the field of health law as well as for legal practitioners, academics and patient interest groups.
