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Comparative Issues in the Governance of Research Biobanks

2013-01-30 Law
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Release : 2013-01-30
Genre : Law
Kind : eBook
Book Rating : 165/5 ( reviews)

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Book Synopsis Comparative Issues in the Governance of Research Biobanks by : Giovanni Pascuzzi

Download or read book Comparative Issues in the Governance of Research Biobanks written by Giovanni Pascuzzi. This book was released on 2013-01-30. Available in PDF, EPUB and Kindle. Book excerpt: 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

2008-04-28 Business & Economics
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Release : 2008-04-28
Genre : Business & Economics
Kind : eBook
Book Rating : 277/5 ( reviews)

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Book Synopsis Biobanks by : Herbert Gottweis

Download or read book Biobanks written by Herbert Gottweis. This book was released on 2008-04-28. Available in PDF, EPUB and Kindle. Book excerpt: 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.

Principles and Practice in Biobank Governance

2016-04-15 Social Science
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Release : 2016-04-15
Genre : Social Science
Kind : eBook
Book Rating : 889/5 ( reviews)

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Book Synopsis Principles and Practice in Biobank Governance by : Mark Stranger

Download or read book Principles and Practice in Biobank Governance written by Mark Stranger. This book was released on 2016-04-15. Available in PDF, EPUB and Kindle. Book excerpt: 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.

GDPR and Biobanking

2021 Biobanks
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Release : 2021
Genre : Biobanks
Kind : eBook
Book Rating : 881/5 ( reviews)

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Book Synopsis GDPR and Biobanking by : Jane Reichel

Download or read book GDPR and Biobanking written by Jane Reichel. This book was released on 2021. Available in PDF, EPUB and Kindle. Book excerpt: 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. .

Ethics and Governance of Biomedical Research

2016-05-09 Philosophy
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Release : 2016-05-09
Genre : Philosophy
Kind : eBook
Book Rating : 311/5 ( reviews)

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Book Synopsis Ethics and Governance of Biomedical Research by : Daniel Strech

Download or read book Ethics and Governance of Biomedical Research written by Daniel Strech. This book was released on 2016-05-09. Available in PDF, EPUB and Kindle. Book excerpt: In this book, scholars with different disciplinary and national backgrounds argue for possible answers and analyse case studies on current issues of governance in biomedical research. These issues comprise among others the research-care distinction, risk evaluation in early human trials, handling of incidental findings, nocebo effects, cluster randomized trials, publication bias, or consent in biobank research. This book demonstrates how new technologies and research possibilities multiply or intensify already known governance challenges, leaving room for ethical analysis and complex moral choices. Clinical researchers, research ethics committee members and research ethicists have all to deal with such challenges on a daily basis. While general reflection on core concepts of research ethics is seldom pointless, those confronted with hard moral choices do need more practical and contextualized reflection on the said issues. This book particularly provides such contextualized reflections and aims to inform all those who study, conduct, regulate, fund, or participate in biomedical research.

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