Principles And Practice In Biobank Governance
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Principles And Practice In Biobank Governance
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Author : Mark Stranger
language : en
Publisher:
Release Date : 2009
Principles And Practice In Biobank Governance written by Mark Stranger and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2009 with Biobanks categories.
Principles And Practice In Biobank Governance
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Author : Mark Stranger
language : en
Publisher: Routledge
Release Date : 2016-04-15
Principles And Practice In Biobank Governance written by Mark Stranger and has been published by Routledge this book supported file pdf, txt, epub, kindle and other format this book has been release on 2016-04-15 with Social Science categories.
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.
Ethics Law And Governance Of Biobanking
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Author : Deborah Mascalzoni
language : en
Publisher: Springer
Release Date : 2015-01-22
Ethics Law And Governance Of Biobanking written by Deborah Mascalzoni and has been published by Springer this book supported file pdf, txt, epub, kindle and other format this book has been release on 2015-01-22 with Medical categories.
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.
Governing Biobanks
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Author : Jane Kaye
language : en
Publisher: Bloomsbury Publishing
Release Date : 2012-02-03
Governing Biobanks written by Jane Kaye and has been published by Bloomsbury Publishing this book supported file pdf, txt, epub, kindle and other format this book has been release on 2012-02-03 with Law categories.
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.
Biobanking Of Human Biospecimens
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Author : Pierre Hainaut
language : en
Publisher: Springer
Release Date : 2017-06-06
Biobanking Of Human Biospecimens written by Pierre Hainaut and has been published by Springer this book supported file pdf, txt, epub, kindle and other format this book has been release on 2017-06-06 with Medical categories.
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.
Reciprocity In Population Biobanks
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Author : Ma'n H. Zawati
language : en
Publisher: Academic Press
Release Date : 2021-09-22
Reciprocity In Population Biobanks written by Ma'n H. Zawati and has been published by Academic Press this book supported file pdf, txt, epub, kindle and other format this book has been release on 2021-09-22 with Medical categories.
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
Law And Legacy In Medical Jurisprudence
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Author : Edward S. Dove
language : en
Publisher: Cambridge University Press
Release Date : 2022-03-10
Law And Legacy In Medical Jurisprudence written by Edward S. Dove and has been published by Cambridge University Press this book supported file pdf, txt, epub, kindle and other format this book has been release on 2022-03-10 with Law categories.
Introduction and investigation of the concept - and utility - of legacy in the field of medical jurisprudence.
Science And Democracy
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Author : Stephen Hilgartner
language : en
Publisher: Routledge
Release Date : 2015-03-05
Science And Democracy written by Stephen Hilgartner and has been published by Routledge this book supported file pdf, txt, epub, kindle and other format this book has been release on 2015-03-05 with Social Science categories.
In the life sciences and beyond, new developments in science and technology and the creation of new social orders go hand in hand. In short, science and society are simultaneously and reciprocally coproduced and changed. Scientific research not only produces new knowledge and technological systems but also constitutes new forms of expertise and contributes to the emergence of new modes of living and new forms of exchange. These dynamic processes are tightly connected to significant redistributions of wealth and power, and they sometimes threaten and sometimes enhance democracy. Understanding these phenomena poses important intellectual and normative challenges: neither traditional social sciences nor prevailing modes of democratic governance have fully grappled with the deep and growing significance of knowledge-making in twenty-first century politics and markets. Building on new work in science and technology studies (STS), this book advances the systematic analysis of the coproduction of knowledge and power in contemporary societies. Using case studies in the new life sciences, supplemented with cases on informatics and other topics such as climate science, this book presents a theoretical framing of coproduction processes while also providing detailed empirical analyses and nuanced comparative work. Science and Democracy: Knowledge as Wealth and Power in the Biosciences and Beyond will be interesting for students of sociology, science & technology studies, history of science, genetics, political science, and public administration.
Privacy Confidentiality And Health Research
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Author : William W. Lowrance
language : en
Publisher: Cambridge University Press
Release Date : 2012-06-21
Privacy Confidentiality And Health Research written by William W. Lowrance and has been published by Cambridge University Press this book supported file pdf, txt, epub, kindle and other format this book has been release on 2012-06-21 with Law categories.
The potential of the e-health revolution, increased data sharing, database linking, biobanks and new techniques such as geolocation and genomics to advance human health is immense. For the full potential to be realized, though, privacy and confidentiality will have to be dealt with carefully. Problematically, many conventional approaches to such pivotal matters as consent, identifiability, and safeguarding and security are inadequate. In many places, research is impeded by an overgrown thicket of laws, regulations, guidance and governance. The challenges are being heightened by the increasing use of biospecimens, and by the globalization of research in a world that has not globalized privacy protection. Drawing on examples from many developed countries and legal jurisdictions, the book critiques the issues, summarizes various ethics, policy, and legal positions (and revisions underway), describes innovative solutions, provides extensive references and suggests ways forward.
Ethical Challenges In Genomics Research
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Author : Paula Boddington
language : en
Publisher: Springer Science & Business Media
Release Date : 2012-03-14
Ethical Challenges In Genomics Research written by Paula Boddington and has been published by Springer Science & Business Media this book supported file pdf, txt, epub, kindle and other format this book has been release on 2012-03-14 with Medical categories.
New developments in science and technology have resulted in shifting ethical challenges in many areas including in genomics research. This book enables those who are involved in genomics research, whether as researcher, participant or policy maker, to understand the ethical issues currently developing in this field and to participate actively in these important debates. A clear account is given of how science and technology are outstripping the capacity of previous ethical regulations to cope with current issues, together with practical illustrations of possible ways forward. Key ethical ideas are presented, drawing on the history of research regulation and on an account of the particular challenges arising in the field of genomics. The book uses a grounded, practical approach to explaining ethical concepts and issues which is geared to enhancing interdisciplinary dialogue. Its broad approach to ethical issues includes relevant considerations from social psychology and there is a particular emphasis on understanding the problems of ethical regulations and practice in the institutional and social context of research. A glossary and numerous text boxes explaining relevant terms and key ideas help to make the work an invaluable resource for both beginners and experts in the field.