GOVERNING BIOBANKS UNDERSTANDING THE INTERPLAY BETWEEN LAW AND PRACTICE

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Governing Biobanks

Author : Jane Kaye
ISBN : 9781847318848
Genre : Law
File Size : 69.2 MB
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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.
Category: Law

Ethics And Governance Of Biomedical Research

Author : Daniel Strech
ISBN : 9783319287317
Genre : Philosophy
File Size : 24.91 MB
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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.
Category: Philosophy

Ethics Law And Governance Of Biobanking

Author : Deborah Mascalzoni
ISBN : 9789401795739
Genre : Medical
File Size : 24.8 MB
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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.
Category: Medical

The Ethics Of Biomedical Big Data

Author : Brent Daniel Mittelstadt
ISBN : 9783319335254
Genre : Philosophy
File Size : 60.69 MB
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This book presents cutting edge research on the new ethical challenges posed by biomedical Big Data technologies and practices. ‘Biomedical Big Data’ refers to the analysis of aggregated, very large datasets to improve medical knowledge and clinical care. The book describes the ethical problems posed by aggregation of biomedical datasets and re-use/re-purposing of data, in areas such as privacy, consent, professionalism, power relationships, and ethical governance of Big Data platforms. Approaches and methods are discussed that can be used to address these problems to achieve the appropriate balance between the social goods of biomedical Big Data research and the safety and privacy of individuals. Seventeen original contributions analyse the ethical, social and related policy implications of the analysis and curation of biomedical Big Data, written by leading experts in the areas of biomedical research, medical and technology ethics, privacy, governance and data protection. The book advances our understanding of the ethical conundrums posed by biomedical Big Data, and shows how practitioners and policy-makers can address these issues going forward.
Category: Philosophy

Principles And Practice In Biobank Governance

Author : Dr Jane Kaye
ISBN : 9781409492108
Genre : Social Science
File Size : 21.81 MB
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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.
Category: Social Science

The Politics Of Self Governance

Author : Professor Eva Sørensen
ISBN : 9781409499176
Genre : Political Science
File Size : 84.47 MB
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Liberal democracies are experiencing a major transformation of public governance by which self-regulation, co-operation and negotiation between public and private actors and across different political-administrative levels play an increasingly important role for policy-making and implementation. Using the term 'governance imagery', or what a given society envisions to be the proper way of governing public affairs, this volume examines the emergence, causes and consequences of the politics of self-governance both within relevant social science theorizing and in the everyday production of public governance in various policy areas. It questions how self-governance materialized in various areas of public governance in different liberal democracies, and the driving forces and political effects of attempts to enhance the role of self-governance. Challenging the theory and practice of public administration, The Politics of Self-Governance is an indispensable read for all those interested in new forms of public governance.
Category: Political Science

New Challenges For Biobanks

Author : Kris Dierickx
ISBN : 9050959741
Genre : Law
File Size : 57.5 MB
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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.
Category: Law