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Research Handbook on Information Policy
This comprehensive and innovative Research Handbook tackles the pressing issues confronting us at the dawn of the global network society, including freedom of speech, government transparency and the digital divide. Engaging with controversial problems of public policy including freedom of expression, copyright and information inequality, the Research Handbook on Information Policy offers a well-rounded exploration of the history and future of this vital field.
Handbook of Research on Socio-Technical Design and Social Networking Systems
Addresses current issues of research into socio-technical systems (STSs). Provides suggestions on how social knowledge can synergize with technical knowledge.
Ethics and Governance of Biomedical Research
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.
Law, Regulation and Governance in the Information Society
This edited collection seeks to map the landscape of contemporary informational interests, to evaluate a range of recognised and putative rights and wrongs associated with modern information societies, and to consider how law, regulation, and governance should be deployed in response. New technologies and new applications constantly disrupt our values, our framing of our world, and our sense of where we are and who we are. In our ‘information societies’, we entertain mixed hopes and expectations, as well as significant fears and concerns. At the root of these, there are a number of informational interests, on the basis of which certain rights are claimed and particular wrongs denounced. ...
The Ethics Rupture
For decades now, researchers in the social sciences and humanities have been expressing a deep dissatisfaction with the process of research-ethics review in academia. Continuing the ongoing critique of ethics review begun in Will C. van den Hoonaard’s Walking the Tightrope and The Seduction of Ethics, The Ethics Rupture offers both an account of the system’s failings and a series of proposals on how to ensure that social research is ethical, rather than merely compliant with institutional requirements. Containing twenty-five essays written by leading experts from around the world in various disciplines, The Ethics Rupture is a landmark study of the problems caused by our current research-ethics system and the ways in which scholars are seeking solutions.
The Human Microbiome
Human microbiome research has revealed that legions of bacteria, viruses, and fungi live on our skin and within the cavities of our bodies. New knowledge from these recent studies shows that humans are superorganisms and that the microbiome is indispensible to our lives and our health. This volume explores some of the science on the human microbiome and considers the ethical, legal, and social concerns that are raised by this research.
Protecting Genetic Privacy in Biobanking Through Data Protection Law
Hallinan argues that the substantive framework presented by the GDPR offers an admirable base-line level of protection for the range of genetic privacy rights engaged by biobanking.
Inspiring a Medico-Legal Revolution
This book marks the retirement of Professor Sheila McLean, whose contribution to the discipline of medical law has been truly ground breaking. As one of the pioneers of the discipline, Sheila McLean inspired a revolution in the ways in which lawyers, doctors, courts and patients perceive the relationship between medicine and the law. The first International Bar Association Professor of Law and Ethics in Medicine, she has worked tirelessly to champion the importance of law’s role in regulating medicine and protecting patients’ rights. The span in content of this book reflects the range of contributions that Professor McLean has herself made. Her work gave direction and shape to a new fiel...
Big Picture Bioethics: Developing Democratic Policy in Contested Domains
This book addresses the problem of how to make democratically-legitimate public policy on issues of contentious bioethical debate. It focuses on ethical contests about research and their legitimate resolution, while addressing questions of political legitimacy. How should states make public policy on issues where there is ethical disagreement, not only about appropriate outcomes, but even what values are at stake? What constitutes justified, democratic policy in such conflicted domains? Case studies from Canada and Australia demonstrate that two countries sharing historical and institutional characteristics can reach different policy responses. This book is of interest to policymakers, bioethicists, and philosophers, and will deepen our understanding of the interactions between large-scale socio-political forces and detailed policy problems in bioethics. asdf
The Ethics of Biomedical Big Data
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.
