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Biobanks

Biobanks
Governance in Comparative Perspective

by Herbert Gottweis,Alan Petersen

  • Publisher : Routledge
  • Release : 2008-04-28
  • Pages : 248
  • ISBN : 1134090277
  • Language : En, Es, Fr & De
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In recent years, a number of large population-based biobanks – genetic databases that combine genetic information derived from blood samples with personal data about environment, medical history, lifestyle or genealogy – have been set up in order to study the interface between disease, and genetic and environmental factors. Unsurprisingly, these studies have sparked a good deal of controversy and the ethical and social implications have been widely debated. Biobanks: Governance in Comparative Perspective is the first book to explore the political and governance implications of biobanks in Europe, the United States, Asia, and Australia. This book explores: the interrelated conditions needed for a biobank to be created and to exist the rise of the new bio-economy the redefinition of citizenship accompanying national biobank developments This groundbreaking book makes clear that biobanks are a phenomenon that cannot be disconnected from considerations of power, politics, and the reshaping of current practices in governance. It will be a valuable read for scholars and students of genetics, bioethics, risk, public health and the sociology of health and illness.

Governing Biobanks

Governing Biobanks
Understanding the Interplay between Law and Practice

by Jane Kaye,Susan Gibbons,Catherine Heeney,Andrew Smart

  • Publisher : Bloomsbury Publishing
  • Release : 2012-02-03
  • Pages : 380
  • ISBN : 1847318843
  • Language : En, Es, Fr & De
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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.

Comparative Issues in the Governance of Research Biobanks

Comparative Issues in the Governance of Research Biobanks
Property, Privacy, Intellectual Property, and the Role of Technology

by Giovanni Pascuzzi,Umberto Izzo,Matteo Macilotti

  • Publisher : Springer Science & Business Media
  • Release : 2013-01-30
  • Pages : 339
  • ISBN : 3642331165
  • Language : En, Es, Fr & De
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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.

Biobanks as Essential Tools for Translational Research: The Belgian Landscape

Biobanks as Essential Tools for Translational Research: The Belgian Landscape
A Book

by Sofie J. S. Bekaert,Annelies Debucquoy,Veronique T’Joen,Laurent Georges Dollé,Loes Linsen

  • Publisher : Frontiers Media SA
  • Release : 2020-09-17
  • Pages : 129
  • ISBN : 2889660168
  • Language : En, Es, Fr & De
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Biobanks and Tissue Research

Biobanks and Tissue Research
The Public, the Patient and the Regulation

by Christian Lenk,Judit Sándor,Bert Gordijn

  • Publisher : Springer Science & Business Media
  • Release : 2011-07-30
  • Pages : 238
  • ISBN : 9789400716735
  • Language : En, Es, Fr & De
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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.

Biobanks

Biobanks
Patents Or Open Science?

by Antonella De Robbio

  • Publisher : Elsevier
  • Release : 2012-11-26
  • Pages : 70
  • ISBN : 1908818611
  • Language : En, Es, Fr & De
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Biobanks represent an invaluable research tool and, as a result of their intrinsic and extrinsic nature, may be looked upon as archives or repositories largely made up of libraries, or collections of content where the content is the biological material derived from different individuals or species, representing valuable tangible assets. Biobanks analyses aspects of the commons and common intellectual property relating to the concepts of private property, not only concerning data but biological materials as well, and the advantages and disadvantages of patents in scientific research. Several recent initiatives in biomedical research have attempted to make their data freely available to others, so as to foster innovation. Many of these initiatives have adopted the open source model, which has gained widespread recognition in the computer industry. This title is structured into eight chapters and begins with an introduction, which is followed by chapters that discuss how the term ‘biobank’ came about in scientific literature; legal matters relating to biobanks; and intellectual and physical property. Later chapters comprehensively analyse the intellectual property of biobanks within the sphere of copyright; biotechnological inventions and research patentability; open data sharing in biobanks; and biobanks as commons or vault. Considers biobanks as both repositories and as collections of tangible assets Argues that the data in biobanks represents a high value intangible asset Explores regulatory gaps exploited by the private sector

Human Genetic Biobanks in Asia

Human Genetic Biobanks in Asia
Politics of Trust and Scientific Advancement

by Margaret Sleeboom-Faulkner

  • Publisher : Routledge
  • Release : 2008-11-19
  • Pages : 224
  • ISBN : 1135784515
  • Language : En, Es, Fr & De
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This volume investigates human genetic biobanking and its regulation in various Asian countries and areas, including Japan, Mainland China, Taiwan, Hong Kong, India and Indonesia.. It sheds light on how cultural, socio-political and economic factors influence the set-up of bioethical regulation for human genetic biobanks and how bioethical sensitivities surrounding biobanks are handled. Apart from placing discourses of trust in an international perspective, the comparative materials presented in this volume also put into perspective the concepts of genetic theft and exploitation, and genetic wealth and trust. This collection contains case studies of biobanking practices in societies with different needs and welfare levels, and provides insights into government strategies towards genetic resources by examining bioethics as practised at home.

Biobanks in Low- and Middle-Income Countries: Relevance, Setup and Management

Biobanks in Low- and Middle-Income Countries: Relevance, Setup and Management
A Book

by Karine Sargsyan

  • Publisher : Springer Nature
  • Release : 2022
  • Pages : 129
  • ISBN : 3030876373
  • Language : En, Es, Fr & De
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Governing Intellectual Property Rights Within Publicly Funded Biobanks

Governing Intellectual Property Rights Within Publicly Funded Biobanks
A Book

by Rajam Neethu

  • Publisher : Kluwer Law International B.V.
  • Release : 2019-06-21
  • Pages : 352
  • ISBN : 9403506229
  • Language : En, Es, Fr & De
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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.

Reciprocity in Population Biobanks

Reciprocity in Population Biobanks
Relational Autonomy and the Duty to Inform in the Genomic Era

by Ma’n H. Zawati

  • Publisher : Academic Press
  • Release : 2021-09-22
  • Pages : 202
  • ISBN : 0323913482
  • Language : En, Es, Fr & De
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Reciprocity in Population Biobanks: Relational Autonomy and the Duty to Inform in the Genomic Era begins by discussing how current judicial interpretation keeps standard of disclosure at the core of genomic research. The book then outlines multiple limitations individualistic autonomy faces in the context of gene and population biobanks, including an analysis of the complexities of benefit considerations in the research setting. Second, the book explores how individualistic autonomy fails to acknowledge the multilateral relationships implicated in genomic research, including those that affect the broader research community, research participants’ families, and the general public. In carrying out this analysis, this book pays special attention to alternative approaches and ways researchers, public health officials, and judicial bodies might interact in years to come. In other words, implementing an understanding of relational autonomy that acknowledges and sustains the multilateral relationships found in genomic research without compromising the rights of participants. In short, this book proposes a reconceived duty to inform for researchers and a new standard of disclosure that is more meaningful and impactful for research participants and researchers. Examines the limitations individualistic autonomy faces in the context of gene and population biobanks Proposes a reconceived duty to inform for researchers and a new standard of disclosure more meaningful to genomic research participants Suggests ways researchers, public health officials, and judicial bodies might interact to drive genomic research while still protecting research participants

Ethical Issues in Governing Biobanks

Ethical Issues in Governing Biobanks
Global Perspectives

by Nikola Biller-Andorno,Alexander M. Capron

  • Publisher : Routledge
  • Release : 2016-05-13
  • Pages : 268
  • ISBN : 1317141490
  • Language : En, Es, Fr & De
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Population genomics research drawing on genetic databases has expanded rapidly, with some of this information being combined in 'biobanks'. Managing this information in an appropriate way is a highly complex ethical issue in the health policy arena. This book combines theoretical and empirical research to analyze the areas of conflict and consensus in the regulatory and ethical frameworks that have been developed to govern biobanks. Ethicists from the Department of Ethics, Trade, Human Rights and Health Law (ETH) of the World Health Organization, the Institute of Biomedical Ethics of Geneva University and the Institute of Biomedical Ethics of the University of Zurich, with the support of the Geneva International Academic Network (GIAN), examine the conditions under which genetic databases can be established, kept, and made use of in an ethically acceptable way. In addition to a comprehensive review of the scientific literature and a comparative analysis of existing normative frameworks, they present the results of in-depth interviews with experts around the world concerning the most unresolved and controversial issues. The results of that study, combined with their normative analysis, leads to recommendations for a better international framework.

Principles and Practice in Biobank Governance

Principles and Practice in Biobank Governance
A Book

by Mark Stranger

  • Publisher : Routledge
  • Release : 2016-04-15
  • Pages : 316
  • ISBN : 1317075889
  • Language : En, Es, Fr & De
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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.

Leading the 21st-Century Academic Library

Leading the 21st-Century Academic Library
Successful Strategies for Envisioning and Realizing Preferred Futures

by Bradford Lee Eden

  • Publisher : Rowman & Littlefield
  • Release : 2015-03-02
  • Pages : 180
  • ISBN : 1442245778
  • Language : En, Es, Fr & De
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Leading the 21st Century Academic Library: Successful Strategies for Envisioning and Realizing Preferred Futures will explore the new roles and directions academic libraries are taking in the 21st century as a consequence of visionary leadership in exploring diverse futures.

Ethics, Law and Governance of Biobanking

Ethics, Law and Governance of Biobanking
National, European and International Approaches

by Deborah Mascalzoni

  • Publisher : Springer
  • Release : 2015-01-22
  • Pages : 277
  • ISBN : 9401795738
  • Language : En, Es, Fr & De
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Biobank research and genomic information are changing the way we look at health and medicine. Genomics challenges our values and has always been controversial and difficult to regulate. In the future lies the promise of tailored medical treatments and pharmacogenomics but the borders between medical research and clinical practice are becoming blurred. We see sequencing platforms for research that can have diagnostic value for patients. Clinical applications and research have been kept separate, but the blurring lines challenges existing regulations and ethical frameworks. Then how do we regulate it? This book contains an overview of the existing regulatory landscape for biobank research in the Western world and some critical chapters to show how regulations and ethical frameworks are developed and work. How should international sharing work? How design an ethical informed consent? An underlying critique: the regulatory systems are becoming increasingly complex and opaque. The international community is building systems that should respond to that. According to the authors in fact, it is time to turn the ship around. Biobank researchers have a moral responsibility to look at and assess their work in relation to the bigger picture: the shared norms and values of current society. Research ethics shouldn’t only be a matter of bioethicists writing guidelines that professionals have to follow. Ethics should be practiced through discourse and regulatory frameworks need to be part of that public discourse. Ethics review should be then not merely application of bureaucracy and a burden for researchers but an arena where researchers discuss their projects, receive advice and practice their ethics skills.

New Challenges for Biobanks

New Challenges for Biobanks
Ethics, Law, and Governance

by Kris Dierickx

  • Publisher : Intersentia Uitgevers N V
  • Release : 2009
  • Pages : 277
  • ISBN : 9876543210XXX
  • Language : En, Es, Fr & De
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The book is a collection of papers presented during an international conference, held in Leuven May 18-20, 2009, organized by the Centre for Biomedical Ethics and Law of the Catholic University of Leuven and the GeneBanC project.

Populations and Genetics

Populations and Genetics
Legal and Socio-Ethical Perspectives

by Bartha Maria Knoppers

  • Publisher : BRILL
  • Release : 2003-12-01
  • Pages : 129
  • ISBN : 9047402936
  • Language : En, Es, Fr & De
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GDPR and Biobanking

GDPR and Biobanking
Individual Rights, Public Interest and Research Regulation Across Europe

by Jane Reichel,Santa Slokenberga,Olga Tzortzatou,Springer Nature

  • Publisher : Springer Nature
  • Release : 2021
  • Pages : 434
  • ISBN : 3030493881
  • Language : En, Es, Fr & De
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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. .

Biobanking of Human Biospecimens

Biobanking of Human Biospecimens
Principles and Practice

by Pierre Hainaut,Jim Vaught,Kurt Zatloukal,Markus Pasterk

  • Publisher : Springer
  • Release : 2017-06-06
  • Pages : 239
  • ISBN : 3319551205
  • Language : En, Es, Fr & De
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This volume is the first comprehensive text on human biobanking, authored by scientists and regulatory officers who have led the field over the past 10 years. It covers biobanking issues and its importance in advancing the field of research in cancer, cardiovascular, metabolic, and other diseases. Biobanks of human specimens have become the cornerstone for research on human health that harnesses the power of “omics” technologies to identify biomarkers for disease susceptibility. Biobanks are an essential component of the development of personalized medicine, which relies on the molecular analysis of biospecimens that are truly representative of individuals and of diseases. Over the past decade, biobanking has been the focus of major investments and developments aimed at developing appropriate infrastructure, methods, networking practice and evidence-based pre-analytical procedures. This volume explores topics including specimen storage, protocol design, specimen collection, pre-analytical processing and preservation, long-term storage, retrieval and separation, and distribution to analytical laboratory platforms. These activities are extremely complex and are essential for biomedical and biotechnological developments and this text provides critical information about biobanking for the development of future forms of medicine.​

Interactive Knowledge Discovery and Data Mining in Biomedical Informatics

Interactive Knowledge Discovery and Data Mining in Biomedical Informatics
State-of-the-Art and Future Challenges

by Andreas Holzinger,Igor Jurisica

  • Publisher : Springer
  • Release : 2014-06-17
  • Pages : 357
  • ISBN : 3662439689
  • Language : En, Es, Fr & De
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One of the grand challenges in our digital world are the large, complex and often weakly structured data sets, and massive amounts of unstructured information. This “big data” challenge is most evident in biomedical informatics: the trend towards precision medicine has resulted in an explosion in the amount of generated biomedical data sets. Despite the fact that human experts are very good at pattern recognition in dimensions of = 3; most of the data is high-dimensional, which makes manual analysis often impossible and neither the medical doctor nor the biomedical researcher can memorize all these facts. A synergistic combination of methodologies and approaches of two fields offer ideal conditions towards unraveling these problems: Human–Computer Interaction (HCI) and Knowledge Discovery/Data Mining (KDD), with the goal of supporting human capabilities with machine learning./ppThis state-of-the-art survey is an output of the HCI-KDD expert network and features 19 carefully selected and reviewed papers related to seven hot and promising research areas: Area 1: Data Integration, Data Pre-processing and Data Mapping; Area 2: Data Mining Algorithms; Area 3: Graph-based Data Mining; Area 4: Entropy-Based Data Mining; Area 5: Topological Data Mining; Area 6 Data Visualization and Area 7: Privacy, Data Protection, Safety and Security.

Database and Expert Systems Applications

Database and Expert Systems Applications
20th International Conference, DEXA 2009, Linz, Austria, August 31 - September 4, 2009, Proceedings

by Sourav S. Bhowmick,Josef Küng,Roland Wagner

  • Publisher : Springer Science & Business Media
  • Release : 2009-08-17
  • Pages : 865
  • ISBN : 3642035728
  • Language : En, Es, Fr & De
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The annual international conference on Database and Expert Systems Applications (DEXA) is now well established as a reference scientific event. The reader will find in this volume a collection of scientific papers that represent the state of the art of - search in the domain of data, information and knowledge management, intelligent systems, and their applications. The 20th edition of the series of DEXA conferences was held at the Johannes - pler University of Linz, from August 31 to September 4, 2009. Several collocated conferences and workshops covered specialized and comp- mentary topics to the main conference topic. Seven conferences–––the 11th Inter- tional Conference on Data Warehousing and Knowledge Discovery (DaWaK), the 10th International Conference on Electronic Commerce and Web Technologies (EC- Web), the 8th International Conference on Electronic Government (EGOV), the 6th International Conference on Trust, Privacy, and Security in Digital Business (Trust- Bus), the 4th International Conference on Industrial Applications of Holonic and Multi-Agent Systems (HoloMAS), the First International Conference on ePartici- tion (ePart), and the Second International Conference on Data Management in Grid and P2P Systems (GLOBE)–––and 14 workshops are collocated with DEXA. These events formed a unique international forum with a balanced depth and breadth of topics. Its much appreciated conviviality fostered unmatched opportunities to meet, share the latest scientific results and discuss the latest technological advances in the area of information technologies with both young scientists and engineers and senior world-renown experts. This volume contains the papers selected for presentation at the DEXA conference.