The Ethics and Governance of Human Genetic Databases European Perspectives Part 4 docx

The Ethics and Governance of Human Genetic Databases European Perspectives Part 4 docx

The Ethics and Governance of Human Genetic Databases European Perspectives Part 4 docx

... the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4 April 1997, ETS 1 64. 106 ... evaluate and monitor their current usage. 5 Definitions of genetic databases can be found in the laws of Iceland, Sweden and Estonia, 6 but these are li...
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The Ethics and Governance of Human Genetic Databases European Perspectives Part 1 ppsx

The Ethics and Governance of Human Genetic Databases European Perspectives Part 1 ppsx

... original hypothesis was that there must be a clear distinction between the American and European approaches to the ethics of human genetic 1 The expressions human genetic databanking’ and genetic ... of data for research at the time of collection. This creates a particular challenge for the ethics of database research. Introduction: some lessons of ELSAGE...
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The Ethics and Governance of Human Genetic Databases European Perspectives Part 2 pptx

The Ethics and Governance of Human Genetic Databases European Perspectives Part 2 pptx

... the only possible way of protecting the interest of privacy in the technology age of cyberspace and genetic databases. 9 7 Allen, ‘Privacy in American Law’. 8 Council Directive 95 /46 /EC of 24 ... History and Philosophy of Biological and Biomedical Sciences 32 ( 2001), pp. 689–7 04. 20 Matti Ha¨yry and Tuija Takala the basic human rights, and from there in...
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The Ethics and Governance of Human Genetic Databases European Perspectives Part 3 pptx

The Ethics and Governance of Human Genetic Databases European Perspectives Part 3 pptx

... under- standing of people’s perceptions of privacy and their trust in the guard- ians of biobanks and the institutions setting them up and regulating them. The UK team felt that the findings of this ... reflect- ing the final outcome of the project in terms of actual participation rates, 4 these figures reveal rather low actual interest in such issues on the...
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The Ethics and Governance of Human Genetic Databases European Perspectives Part 5 potx

The Ethics and Governance of Human Genetic Databases European Perspectives Part 5 potx

... far 12 Constitution of the Republic of Iceland 1 944 (Stjo´rnarskra´ lydveldisins I ´ slands 33/1 944 ) with the rule of privacy in art. 71, establishing the right to ‘immunity of privacy, home, and family ... Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Bi...
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The Ethics and Governance of Human Genetic Databases European Perspectives Part 6 ppsx

The Ethics and Governance of Human Genetic Databases European Perspectives Part 6 ppsx

... there are different understandings of ethics and the appropriate role and resourcing of research, and indeed of the concept of global public goods itself. Our argument proceeds by outlining the ... manner. 20 The UNESCO Universal Declaration on the Human Genome and Human Rights has recognized the fundamental unity of humankind manifested in our sharing of...
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The Ethics and Governance of Human Genetic Databases European Perspectives Part 7 pps

The Ethics and Governance of Human Genetic Databases European Perspectives Part 7 pps

... it is the best use of money), governance of the project, aims of the project, scientific value of the project (reliability of the data) and the perception of the public. 1 94 Margit Sutrop not ... possibilities of betrayal. The lack of critical analysis of possible risks and benefits may bring a serious backlash in the future. The promoters’ limitl...
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The Ethics and Governance of Human Genetic Databases European Perspectives Part 8 ppt

The Ethics and Governance of Human Genetic Databases European Perspectives Part 8 ppt

... not only the Human Genome Project, but also population-based human genetic databases. One of the main justifications for human genetic databases is indeed the possibility of producing the knowledge ... at a theoretical level – and whether the latter is even possible. 4. the ways in which the development of and operation of biobanks give rise to question...
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The Ethics and Governance of Human Genetic Databases European Perspectives Part 9 potx

The Ethics and Governance of Human Genetic Databases European Perspectives Part 9 potx

... respect the views of the many rather than the views of the few. The point of social studies is, within this model, to inform the authorities of the direction of the majority opinion. The second ... large-scale human genetic databases? And secondly, in the light of the research of the legal team, 3 how well have the authorities of Estonia, Icela...
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The Ethics and Governance of Human Genetic Databases European Perspectives Part 10 pdf

The Ethics and Governance of Human Genetic Databases European Perspectives Part 10 pdf

... Bondeson and Jones, The Ethics of Managed Care, 55– 74 Salter, B., and M. Jones, ‘Regulating Human Genetics: The Changing Politic of Biotechnology Governance in the European Union’, Health, Risk and ... Journal of Medical Ethics 24 (1998), 81–85 European Values in Bioethics: Why, What, and How to be Used?’, Theoretical Medicine and Bioethics 24 (2003), 199...
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