Trust In Biobanking
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Trust In Biobanking
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Author : Peter Dabrock
language : en
Publisher: Springer Science & Business Media
Release Date : 2012-02-22
Trust In Biobanking written by Peter Dabrock 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 2012-02-22 with Law categories.
Biobanks are promising instruments of biomedical research and of transnational medicine in particular. Ethical, legal and social issues associated with biobanking, however, have recently led to a more critical view on this concept. All efforts addressing these concerns have been grounded on well-established standards of biomedical ethics such as informed consent procedures, protection of individual autonomy, benefit sharing etc. By additionally highlighting the widely neglected aspect of trust, this book aims at broadening the horizon of the ELSI-debate and thus filling a gap in current research on biobanking. The contributions of leading experts and junior researchers cover a wide field of disciplines relevant for biobanking including law, ethics, medicine, public health, social sciences, philosophy and theology.
Trust And Consequences
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Author : Cyan James
language : en
Publisher:
Release Date : 2014
Trust And Consequences written by Cyan James and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2014 with categories.
The functions and nature of trust have been widely explored within the context of biobanks. As an established body of literature demonstrates, trust is believed vital for conducting modern research in which thousands of human tissue specimens are linked with de-identified information from medical records in a "Big Data" approach to finding genomic patterns and correlations behind disease manifestations. Without trust, the literature holds, potential donors are liable to refuse donation out of fear of weak data security or of researcher misconduct. With transparency, security, oversight, and proper engagement practices, biobanks hope to secure donor trust. Trust is also important, albeit much less examined, in health care learning systems where a similar situation--researchers seeking to conduct research with subjects recruited within clinical spaces--prevails. Both biobanks and health learning systems are becoming increasingly popular means of finding answers to biomedical problems, and how trust functions in these settings cannot be overlooked. Purpose: This dissertation aims to 1) examine stakeholder preferences, including those particular to trust and patient consent and engagement preferences, during the establishment of the Northwest BioTrust, a biorepository resource local to Seattle, WA, 2) qualitatively analyze IRB and patient views on trust as they apply to the health care learning model, and 3) explore significant policy ramifications remaining to be explored within the literature on trust in biomedical spaces. The overarching purpose of the project is to better inform research practices, to promote research obligations in trust-building ways, and to strengthen our research ecosystem. My methods include: 1) semi-structured interviews with local biobanking experts and stakeholders, a focus group of King County citizens, and a systematic literature review spanning work published from 2000-2010 focusing on elements of trust and communication methods involving biobank donors and esearch participants, 2) qualitative content analysis of focus groups at leading Northwest clinics convened to discuss the ethics of research on medical practices, and 3) the linked advancement of a normative argument based on relational ethics. Trust is critical, and in clinical spaces, potential participants prefer trust to be established relationally with one's care professionals, instead of with researchers or within research contexts; this characteristic adds important considerations to ongoing trust-building policy, particularly with regards to health learning systems. Trust is relational and not simply transactional. Though consent forms are the most common way of seeking to build trust and of encapsulating donor and researcher expectations and duties, they fail to capture several elements of trust-building that merit consideration. Researchers should examine their assumptions about the regulatory and ethical duties they must discharge in the light of relational ethics.
The Ethics Of Research Biobanking
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Author : Jan Helge Solbakk
language : en
Publisher: Springer Science & Business Media
Release Date : 2009-07-31
The Ethics Of Research Biobanking written by Jan Helge Solbakk 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 2009-07-31 with Medical categories.
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.
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.
Biobank A Question Of Trust
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Author : People Science & Policy Ltd
language : en
Publisher:
Release Date : 2002
Biobank A Question Of Trust written by People Science & Policy Ltd and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2002 with Audiences categories.
Biobanks
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Author : Herbert Gottweis
language : en
Publisher: Routledge
Release Date : 2008-04-28
Biobanks written by Herbert Gottweis and has been published by Routledge this book supported file pdf, txt, epub, kindle and other format this book has been release on 2008-04-28 with Business & Economics categories.
This groundbreaking book makes it clear that biobanks are a phenomenon that cannot be disconnected from considerations of power, politics and the reshaping of current practices in governance.
Human Genetic Biobanks In Asia
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Author : Margaret Sleeboom-Faulkner
language : en
Publisher: Routledge
Release Date : 2008-11-19
Human Genetic Biobanks In Asia written by Margaret Sleeboom-Faulkner and has been published by Routledge this book supported file pdf, txt, epub, kindle and other format this book has been release on 2008-11-19 with Political Science categories.
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.
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.
Biobanks And Tissue Research
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Author : Christian Lenk
language : en
Publisher: Springer Science & Business Media
Release Date : 2011-07-30
Biobanks And Tissue Research written by Christian Lenk 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 2011-07-30 with Medical categories.
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.
Trust In Biobank Research
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Author : Linus Johnsson
language : en
Publisher:
Release Date : 2013
Trust In Biobank Research written by Linus Johnsson and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2013 with categories.