Biobanks

Biobanks
Author: Antonella De Robbio
Publsiher: Elsevier
Total Pages: 70
Release: 2012-11-26
ISBN 10: 1908818611
ISBN 13: 9781908818614
Language: EN, FR, DE, ES & NL

Biobanks Book Review:

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

Biobanks and Tissue Research

Biobanks and Tissue Research
Author: Christian Lenk,Judit Sándor,Bert Gordijn
Publsiher: Springer Science & Business Media
Total Pages: 238
Release: 2011-07-30
ISBN 10: 9789400716735
ISBN 13: 9400716737
Language: EN, FR, DE, ES & NL

Biobanks and Tissue Research Book Review:

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.

The Ethics of Research Biobanking

The Ethics of Research Biobanking
Author: Jan Helge Solbakk,Soren Holm,B. Hofmann
Publsiher: Springer Science & Business Media
Total Pages: 357
Release: 2009-07-31
ISBN 10: 0387938729
ISBN 13: 9780387938721
Language: EN, FR, DE, ES & NL

The Ethics of Research Biobanking Book Review:

Biobanking, i.e. storage of biological samples or data emerging from such samples for diagnostic, therapeutic or research purposes, has been going on for decades. However, it is only since the mid 1990s that these activities have become the subject of considerable public attention, concern and debate. This shift in climate is due to several factors. The purpose of this book is to investigate some of the ethical, legal and social challenges raised by research biobanking in its different modern forms and formats. The issues raised by research biobanking in its modern form can be divided into four main clusters: how biological materials are entered into the bank; research biobanks as institutions; under what conditions researchers can access materials in the bank, and problems concerning ownership of biological materials and of intellectual property arising from such materials; and how the information is collected and stored, e.g. access-rights, disclosure, confidentiality, data security and data protection.

Governing Biobanks

Governing Biobanks
Author: Jane Kaye,Susan Gibbons,Catherine Heeney,Andrew Smart
Publsiher: Bloomsbury Publishing
Total Pages: 380
Release: 2012-02-03
ISBN 10: 1847318843
ISBN 13: 9781847318848
Language: EN, FR, DE, ES & NL

Governing Biobanks Book Review:

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.

Biobanks

Biobanks
Author: Herbert Gottweis,Alan Petersen
Publsiher: Routledge
Total Pages: 236
Release: 2008-04-28
ISBN 10: 1134090269
ISBN 13: 9781134090266
Language: EN, FR, DE, ES & NL

Biobanks Book Review:

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.

New Challenges for Biobanks

New Challenges for Biobanks
Author: Kris Dierickx
Publsiher: Intersentia Uitgevers N V
Total Pages: 277
Release: 2009
ISBN 10:
ISBN 13: STANFORD:36105134516223
Language: EN, FR, DE, ES & NL

New Challenges for Biobanks Book Review:

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.

Biobanks in Europe

Biobanks in Europe
Author: Anonim
Publsiher: Unknown
Total Pages: 173
Release: 2010
ISBN 10: 9789279157837
ISBN 13: 9279157833
Language: EN, FR, DE, ES & NL

Biobanks in Europe Book Review:

Biobanks (i.e. the organised collections consisting of biological samples and associated data, have gained great significance for research and personalised medicine) are increasingly recognised as a crucial infrastructure for research. However, at the same time the widely varied practices in biobanking regarding for example collection, storage and consent procedures may also pose a barrier to cross-border research and collaboration by limiting access to samples and data. In this context the limited sharing and linkage of samples is a key barrier for research, such as pharmacogenetics. Wide variation is observed in the implementation of relevant existing regulation, which may add further burden to harnessing the public health benefit of these collections. It has been suggested that there is a strong need for a harmonised approach on biobanking practices and improved networking of existing and new collections.^^The Report shows information on the extent of biobanking in Europe, collected through a survey of existing European biobanks regarding both technical aspects (e.g. storage conditions) and aspects of governance and ethics (e.g. sample and data sharing, consent procedures, collaborations etc.). In total, 126 biobanks from 23 countries in Europe were surveyed. Significant lack of harmonisation has been found, especially in the legal aspects (e.g. data protection, consent). This may be partly attributed to the varied interpretation and implementation of EC directives covering aspects of biobanking by national authorities. One of the main complications is that, although the field of data protection is harmonised through the EC directive on data protection, the collection, storage, and sharing of samples is not. Furthermore, in countries that have introduced special biobanks acts it is not always clear where the borderline lies between the scope of these acts and that of the Directive.^Indeed, according to the survey, biobanks within the same country reported different practices, suggesting that the problems of harmonization might be higher than expected and claimed. Not only are there different national laws, but apparently within EU member states biobanks do not implement homogenous practices on privacy and data protection issues. Experts interviews confirmed the need to improve collaboration and networking among the numerous existing biobanks. Efficient organisation of these resources through the development, for example, of an infrastructure would potentially facilitate financial sustainability and greatly contribute to the rapid progress of research and development of better diagnostic and therapeutic approaches. The most favoured model involved the development of a virtual biobank that would allow networking of biobanks across different countries and centralisation of data rather than samples.^However, several organisational challenges (wide variation in biospecimen collection, storage techniques, data comparability, etc.) may hamper such an effort. The European Commission has already recognised the importance of international biobank projects and many of them have been funded and established in the context of the EU Framework Programmes. To help promote networking of biobanks and thus maximise public health benefits, at least some degree of harmonisation must be achieved.

Human Genetic Biobanks in Asia

Human Genetic Biobanks in Asia
Author: Margaret Sleeboom-Faulkner
Publsiher: Taylor & Francis
Total Pages: 214
Release: 2008-11-14
ISBN 10: 0203884604
ISBN 13: 9780203884607
Language: EN, FR, DE, ES & NL

Human Genetic Biobanks in Asia Book Review:

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.

Comparative Issues in the Governance of Research Biobanks

Comparative Issues in the Governance of Research Biobanks
Author: Giovanni Pascuzzi,Umberto Izzo,Matteo Macilotti
Publsiher: Springer Science & Business Media
Total Pages: 339
Release: 2013-01-30
ISBN 10: 3642331165
ISBN 13: 9783642331169
Language: EN, FR, DE, ES & NL

Comparative Issues in the Governance of Research Biobanks Book Review:

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.

Ethical Issues in Governing Biobanks

Ethical Issues in Governing Biobanks
Author: Alexander M. Capron,Nikola Biller-Andorno,Professor Alexandre Mauron,Professor Bernice Elger
Publsiher: Ashgate Publishing, Ltd.
Total Pages: 268
Release: 2013-02-28
ISBN 10: 1409496317
ISBN 13: 9781409496311
Language: EN, FR, DE, ES & NL

Ethical Issues in Governing Biobanks Book Review:

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.

Common Minimum Technical Standards and Protocols for Biobanks Dedicated to Cancer Research

Common Minimum Technical Standards and Protocols for Biobanks Dedicated to Cancer Research
Author: International Agency for Research on Cancer
Publsiher: IARC Technical Reports
Total Pages: 104
Release: 2017-05-08
ISBN 10: 9789283224631
ISBN 13: 9283224639
Language: EN, FR, DE, ES & NL

Common Minimum Technical Standards and Protocols for Biobanks Dedicated to Cancer Research Book Review:

Biobanking has developed at a rapid pace in recent years, initiated by the drive for personalized medicine and the need for high-quality biological resources, associated data for scientific research, and technological advancement of analytical platforms for molecular and genetic research. This book includes guidelines and recommendations for biobanks not only in high-income countries but also in low- and middle-income countries (LMICs). The recommendations are based on validated and/or evidence-based guidelines. The book also includes sections on sample sharing, ethical, legal, and social issues (ELSI) and harmonization guidelines that are important in supporting the collaborative research efforts that make use of biological materials. In particular, the section on open access deals with the principles of sharing and provides recommendations for biobanks in relation to sample and data sharing, which is key to establishing research collaboration. The section on governance provides guidelines on governance structures and standard templates for biobanks for transparent and effective running of the facilities. This book also benefits from the experience and knowledge gained by IARC from coordinating the LMICs Biobank and Cohort Building Network (BCNet) and managing an international biobank, which contains diverse collections of specimens and data drawn from studies across the world, including the EPIC (European Prospective Investigation into Cancer and Nutrition) collection.

Biobanks

Biobanks
Author: Clare Wenham
Publsiher: Unknown
Total Pages: 4
Release: 2014
ISBN 10:
ISBN 13: OCLC:1099957221
Language: EN, FR, DE, ES & NL

Biobanks Book Review:

Biobanks are repositories of biological samples, physical measurements and outcome and behavioural data collected for research, clinical practice or public health monitoring. Most biobanks are established to investigate the common determinants of mortality and morbidity. This briefing updates POSTnote 180 and summarises biobank activity in the UK and the legal, ethical and practical issues.

Exam Prep for Human Genetic Biobanks in Asia Politics of

Exam Prep for  Human Genetic Biobanks in Asia  Politics of
Author: Anonim
Publsiher: Unknown
Total Pages: 329
Release: 2021
ISBN 10:
ISBN 13:
Language: EN, FR, DE, ES & NL

Exam Prep for Human Genetic Biobanks in Asia Politics of Book Review:

Principles and Practice in Biobank Governance

Principles and Practice in Biobank Governance
Author: Mark Stranger
Publsiher: Routledge
Total Pages: 316
Release: 2016-04-15
ISBN 10: 1317075889
ISBN 13: 9781317075882
Language: EN, FR, DE, ES & NL

Principles and Practice in Biobank Governance Book Review:

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.

Biobanks Information Paper

Biobanks Information Paper
Author: National Health and Medical Research Council (Australia)
Publsiher: Unknown
Total Pages: 329
Release: 2010
ISBN 10:
ISBN 13: OCLC:700374973
Language: EN, FR, DE, ES & NL

Biobanks Information Paper Book Review:

The National Health and Medical Research Council (NHMRC) has developed this Biobanks information paper to provide information relevant to the establishment, management and governance of biobanks in Australia. For the purposes of this information paper, a biobank is defined as a generally large collection of human biological materials (biospecimens) linked to relevant personal and health information and held specifically for use in health and medical research. The primary focus of this information paper is on biobanks falling within this definition, but the information provided is also relevant to other collections of biospecimens to the extent that they are used in health and medical research. The aim of biobanks is to facilitate health and medical research, particularly that which is multi-centre and multi-national, while appropriately protecting participants' interests and privacy.

Global Genes Local Concerns

Global Genes  Local Concerns
Author: Timo Minssen,Janne Rothmar Herrmann,Jens Schovsbo
Publsiher: Edward Elgar Publishing
Total Pages: 304
Release: 2019
ISBN 10: 1788116194
ISBN 13: 9781788116190
Language: EN, FR, DE, ES & NL

Global Genes Local Concerns Book Review:

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.

Governing Intellectual Property Rights Within Publicly Funded Biobanks

Governing Intellectual Property Rights Within Publicly Funded Biobanks
Author: Rajam Neethu
Publsiher: Kluwer Law International B.V.
Total Pages: 352
Release: 2019-06-21
ISBN 10: 9403506229
ISBN 13: 9789403506227
Language: EN, FR, DE, ES & NL

Governing Intellectual Property Rights Within Publicly Funded Biobanks Book Review:

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.

Open Biobanks

Open Biobanks
Author: Jurate Breimelyte
Publsiher: Unknown
Total Pages: 312
Release: 2018
ISBN 10: 9788449081750
ISBN 13: 8449081750
Language: EN, FR, DE, ES & NL

Open Biobanks Book Review:

Esta tesis se enfrentó al reto de resolver la cuestión sobre si los derechos de propiedad intelectual creados por los biobancos pueden gestionarse más abiertamente para garantizar la distribución equitativa del conocimiento y las mejoras de la investigación genética. Se propone fomentar que los biobancos usen licencias más abiertas en sus obras protegidas por derechos de autor, bases de datos e inventos patentados. Para facilitar la transferencia de conocimiento entre biobancos y garantizar que la investigación genética mejore, se realiza una reflexión sobre la aplicación de licencias abiertas. La tesis describe el modelo de intercambio colectivo y apoya la posibilidad de usar derechos de propiedad intelectual de forma no restrictiva. La tesis también propone el uso del consentimiento informado amplio en las actividades de los biobancos. Un consentimiento informado amplio garantizaría el equilibrio adecuado entre los derechos individuales y el derecho de los biobancos de compartir la información recogida, especialmente, porque existen incentivos para tratar la genética humana como patrimonio común. El consentimiento abierto puede usarse en las actividades del biobanco para garantizar que los tejidos no permanecen sin uso. Este tipo de consentimiento puede asegurar el máximo valor de los tejidos biológicos recogidos. Si las muestras recogidas no están restringidas a un solo uso o a una sola investigación, podemos esperar que otros estudios lleven a cabo investigaciones sobre las mismas muestras y se presente información científica más amplia y relevante.

Ethics Law and Governance of Biobanking

Ethics  Law and Governance of Biobanking
Author: Deborah Mascalzoni
Publsiher: Springer
Total Pages: 277
Release: 2015-01-22
ISBN 10: 9401795738
ISBN 13: 9789401795739
Language: EN, FR, DE, ES & NL

Ethics Law and Governance of Biobanking Book Review:

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.

Biobanks

Biobanks
Author: Paul Hoffman,Marius Illie
Publsiher: Iste Press - Elsevier
Total Pages: 150
Release: 2020-11
ISBN 10: 9781785482755
ISBN 13: 1785482750
Language: EN, FR, DE, ES & NL

Biobanks Book Review: