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Author: Timo Minssen
Publisher: Edward Elgar Publishing
ISBN: 1788116194
Category : Biobanks
Languages : en
Pages : 299
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Book Description
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.
Author: Timo Minssen
Publisher: Edward Elgar Publishing
ISBN: 1788116194
Category : Biobanks
Languages : en
Pages : 299
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Book Description
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.
Author: Jane Reichel
Publisher: Springer Nature
ISBN: 3030493881
Category : Biobanks
Languages : en
Pages : 432
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Book Description
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. .
Author: Peter Dabrock
Publisher: Springer Science & Business Media
ISBN: 354078845X
Category : Law
Languages : en
Pages : 267
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Book Description
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.
Author: Onora O'Neill
Publisher: Cambridge University Press
ISBN: 9780521894531
Category : Medical
Languages : en
Pages : 232
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Book Description
Argues against the conceptions of individual autonomy which are widely relied on in bioethics.
Author: Guido Mollering
Publisher: Emerald Group Publishing
ISBN: 0080448550
Category : Psychology
Languages : en
Pages : 241
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Book Description
"Trust: Reason, Routine, Reflexivity".
Author: Jan Helge Solbakk
Publisher: Springer Science & Business Media
ISBN: 0387938729
Category : Medical
Languages : en
Pages : 361
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Book Description
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.
Author: National Research Council
Publisher: National Academies Press
ISBN: 0309157064
Category : Computers
Languages : en
Pages : 124
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Book Description
Recent years have seen a growing tendency for social scientists to collect biological specimens such as blood, urine, and saliva as part of large-scale household surveys. By combining biological and social data, scientists are opening up new fields of inquiry and are able for the first time to address many new questions and connections. But including biospecimens in social surveys also adds a great deal of complexity and cost to the investigator's task. Along with the usual concerns about informed consent, privacy issues, and the best ways to collect, store, and share data, researchers now face a variety of issues that are much less familiar or that appear in a new light. In particular, collecting and storing human biological materials for use in social science research raises additional legal, ethical, and social issues, as well as practical issues related to the storage, retrieval, and sharing of data. For example, acquiring biological data and linking them to social science databases requires a more complex informed consent process, the development of a biorepository, the establishment of data sharing policies, and the creation of a process for deciding how the data are going to be shared and used for secondary analysis-all of which add cost to a survey and require additional time and attention from the investigators. These issues also are likely to be unfamiliar to social scientists who have not worked with biological specimens in the past. Adding to the attraction of collecting biospecimens but also to the complexity of sharing and protecting the data is the fact that this is an era of incredibly rapid gains in our understanding of complex biological and physiological phenomena. Thus the tradeoffs between the risks and opportunities of expanding access to research data are constantly changing. Conducting Biosocial Surveys offers findings and recommendations concerning the best approaches to the collection, storage, use, and sharing of biospecimens gathered in social science surveys and the digital representations of biological data derived therefrom. It is aimed at researchers interested in carrying out such surveys, their institutions, and their funding agencies.
Author: Deborah Mascalzoni
Publisher: Springer
ISBN: 9401795738
Category : Medical
Languages : en
Pages : 275
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Book Description
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.
Author: Margaret Sleeboom-Faulkner
Publisher: Routledge
ISBN: 1135784515
Category : Business & Economics
Languages : en
Pages : 222
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Book Description
This volume investigates human genetic biobanking and its regulation in various countries in Asia, including Japan, the People’s Republic of China, the Republic of China, Hong Kong, India and Indonesia.
Author: Jeffrey P. Kahn
Publisher: Oxford University Press
ISBN: 0199990689
Category : Medical
Languages : en
Pages : 249
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Book Description
"Since the publication of the first edition of Beyond Consent, issues of justice remain critical in discussions, debates, and policy making in biomedical research in involving human subjects. The second edition adds new content in two different ways, first by asking authors to examine the issues identified in the first edition by asking what has changed and what new issues arise in the contemporary environment, and second by adding chapters to take on issues that are salient today and looking forward. The result is a new treatment of the issues of justice in research through fresh perspectives and by examining the latest issues. The editors have assembled a group of leading scholars and researchers as contributors, and author the final chapter themselves. This collection is a vital resource for students and scholars of bioethics, medicine, and public health policy; as well as for members of institutional review boards (IRBs), research administrators, and policy makers."--
