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Biobanks and Tissue Research

Biobanks and Tissue Research Book
Author : Christian Lenk,Judit Sándor,Bert Gordijn
Publisher : Springer Science & Business Media
Release : 2011-07-30
ISBN : 9789400716735
Language : En, Es, Fr & De

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Book Description :

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 Book
Author : Herbert Gottweis,Alan Petersen
Publisher : Routledge
Release : 2008-04-28
ISBN : 1134090277
Language : En, Es, Fr & De

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Book Description :

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 Book
Author : Jane Kaye,Susan Gibbons,Catherine Heeney,Andrew Smart
Publisher : Bloomsbury Publishing
Release : 2012-02-03
ISBN : 1847318843
Language : En, Es, Fr & De

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Book Description :

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 in Europe

Biobanks in Europe Book
Author : Anonim
Publisher : Unknown
Release : 2010
ISBN : 9789279157837
Language : En, Es, Fr & De

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Book Description :

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.

New Challenges for Biobanks

New Challenges for Biobanks Book
Author : Kris Dierickx
Publisher : Intersentia Uitgevers N V
Release : 2009
ISBN : 0987650XXX
Language : En, Es, Fr & De

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Book Description :

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.

Human Genetic Biobanks in Asia

Human Genetic Biobanks in Asia Book
Author : Margaret Sleeboom-Faulkner
Publisher : Taylor & Francis
Release : 2008-11-14
ISBN : 0203884604
Language : En, Es, Fr & De

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Book Description :

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

Biobanks Book
Author : Clare Wenham
Publisher : Unknown
Release : 2014
ISBN : 0987650XXX
Language : En, Es, Fr & De

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Book Description :

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.

Comparative Issues in the Governance of Research Biobanks

Comparative Issues in the Governance of Research Biobanks Book
Author : Giovanni Pascuzzi,Umberto Izzo,Matteo Macilotti
Publisher : Springer Science & Business Media
Release : 2013-01-30
ISBN : 3642331165
Language : En, Es, Fr & De

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Book Description :

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

Biobanks Book
Author : Antonella De Robbio
Publisher : Elsevier
Release : 2012-11-26
ISBN : 1908818611
Language : En, Es, Fr & De

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Book Description :

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

Exam Prep for Human Genetic Biobanks in Asia Politics of

Exam Prep for  Human Genetic Biobanks in Asia  Politics of     Book
Author : Anonim
Publisher : Unknown
Release : 2021-05-13
ISBN : 0987650XXX
Language : En, Es, Fr & De

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Book Description :

Download Exam Prep for Human Genetic Biobanks in Asia Politics of book written by , available in PDF, EPUB, and Kindle, or read full book online anywhere and anytime. Compatible with any devices.

Ethical Issues in Governing Biobanks

Ethical Issues in Governing Biobanks Book
Author : Alexander M. Capron,Nikola Biller-Andorno,Professor Alexandre Mauron,Professor Bernice Elger
Publisher : Ashgate Publishing, Ltd.
Release : 2013-02-28
ISBN : 1409496317
Language : En, Es, Fr & De

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Book Description :

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.

Biobanks Information Paper

Biobanks Information Paper Book
Author : National Health and Medical Research Council (Australia)
Publisher : Unknown
Release : 2010
ISBN : 0987650XXX
Language : En, Es, Fr & De

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Book Description :

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.

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

Common Minimum Technical Standards and Protocols for Biobanks Dedicated to Cancer Research Book
Author : International Agency for Research on Cancer
Publisher : IARC Technical Reports
Release : 2017-05-08
ISBN : 9789283224631
Language : En, Es, Fr & De

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Book Description :

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.

Principles and Practice in Biobank Governance

Principles and Practice in Biobank Governance Book
Author : Mark Stranger
Publisher : Routledge
Release : 2016-04-15
ISBN : 1317075889
Language : En, Es, Fr & De

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Book Description :

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.

Governing Intellectual Property Rights Within Publicly Funded Biobanks

Governing Intellectual Property Rights Within Publicly Funded Biobanks Book
Author : Rajam Neethu
Publisher : Kluwer Law International B.V.
Release : 2019-06-21
ISBN : 9403506229
Language : En, Es, Fr & De

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Book Description :

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.

Biobanks

Biobanks Book
Author : Paul Hoffman,Marius Illie
Publisher : Iste Press - Elsevier
Release : 2020-11
ISBN : 9781785482755
Language : En, Es, Fr & De

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Book Description :

Download Biobanks book written by Paul Hoffman,Marius Illie, available in PDF, EPUB, and Kindle, or read full book online anywhere and anytime. Compatible with any devices.

Open Biobanks

Open Biobanks Book
Author : Jurate Breimelyte
Publisher : Unknown
Release : 2018
ISBN : 9788449081750
Language : En, Es, Fr & De

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Book Description :

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.

The Economist

The Economist Book
Author : Anonim
Publisher : Unknown
Release : 2010
ISBN : 0987650XXX
Language : En, Es, Fr & De

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Book Description :

Download The Economist book written by , available in PDF, EPUB, and Kindle, or read full book online anywhere and anytime. Compatible with any devices.

Reciprocity in Population Biobanks

Reciprocity in Population Biobanks Book
Author : Ma’n H. Zawati
Publisher : Academic Press
Release : 2021-09-01
ISBN : 0323913482
Language : En, Es, Fr & De

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Book Description :

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. It 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, mainly, by 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