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The Right to Know and the Right Not to Know
This book re-examines privacy in a world where genome sequencing is cheap, databases can be large, and access rights are hidden.
The Ethics of Genetic Screening
This collection of essays represents the work produced in the course of a three-year project funded by the Commission of the European Communities under the Biomed I programme, on the ethics of genetic screening, entitled 'Genetic screening: ethical and philosophical perspectives, with special reference to multifactorial diseases'. The short title of the project was Euroscreen, thereafter known as Euroscreen I, in the light of the fact that a second project on genetic screening was subsequently funded. The project was multinational and multidisciplinary, and had as its objectives to examine the nature and extent of genetic screening programmes in different European countries; to analyse the s...
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.
Genetic Justice
Explores how the United States and other countries have balanced the use of DNA databanks in criminal justice with the privacy rights of their citizenry, arguing that collecting DNA from those who are arrested, but not charged, can infringe on their constitutional rights and debunking the myth that DNA profiling is infallible.
Sharing Linked Data for Health Research
Health research around the world relies on access to data, and much of the most valuable, reliable, and comprehensive data collections are held by governments. These collections, which contain data on whole populations, are a powerful tool in the hands of researchers, especially when they are linked and analyzed, and can help to address “wicked problems” in health and emerging global threats such as COVID-19. At the same time, these data collections contain sensitive information that must only be used in ways that respect the values, interests, and rights of individuals and their communities. Sharing Linked Data for Health Research provides a template for allowing research access to government data collections in a regulatory environment designed to build social license while supporting the research enterprise.
Disclosure Dilemmas
There exists today a fast growing availability of personal genetic information. Its prognostic impact and value for an individual or family member's health is sometimes unclear, whilst at other times it is clear-cut. The issue of whether to disclose genetic information does however have wide ranging implications. Avoiding the rhetoric of 'genetic exceptionalism', and drawing on an expanded field of bioethical, sociological and anthropological research, this book sets a new agenda for discussing the ethics surrounding the disclosure of prognostic genetic information. A hermeneutical approach reconsiders the ethics of disclosure in a variety of contexts in which genetic information is generate...
Property in the Body
Commodification of the human body is gaining ground, strengthened by powerful interests. This book helps us understand and regulate it.
Embodied Narratives
As increasing quantities of health and biological information are generated, the need for us all to consider the human impacts of its ubiquity becomes more urgent than ever. This book explains the ethical imperative to take seriously the potential impacts on our identities of encountering bioinformation about ourselves.
Regulating Assisted Reproductive Technologies
Examines emerging assisted reproductive technologies that will revolutionise the future of human reproduction and their regulation.
School Leadership between Community and the State
This book presents changes in UK and global educational governance in the context of a radical shift in the operating logics of politics and its interaction with education. Beginning from the colonial origins of political interest in education, the author traces a fundamental shift in the patterns of governance of schools in England in the opening decades of the 21st century. Operating through the logics of public choice economics involving both real markets and quasi-markets, policy reforms have increasingly framed school values, and the value of schooling, in line with a politically determined and nostalgic discourse of ‘British values’. This stands in contrast to a previous focus on ‘community cohesion’ which foregrounded school partnership with the parent community and wider society. Tracing the processes and mid-level actors mediating between government and school leaders, the author identifies processes of recontextualisation through which policy can be reinscribed and resisted.
