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

... private, whether 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. 194 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 pr...

Ngày tải lên: 05/08/2014, 13:20

... 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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... 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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... followed the US tradition, have implemented the Directive of the European Parliament and the Council of Europe on the protection of individuals with regard to the processing of personal data and on the ... History and Philosophy of Biological and Biomedical Sciences 32 ( 2001), pp. 689 70 4. 20 Matti Ha¨yry and Tuija Takala the basic human rights, and...

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... Anderson, ‘In Search of the Holy Grail: Media Discourse and the New Human Genetics’, New Genetics and Society 21 ( 2002), pp. 3 27 3 37; Alan Petersen, ‘Biofantasies: Genetics and Medicine in the ... 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 U...

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... Defining human genetic databases One of the major obstacles to developing a uniform system of regulation is the lack of an agreed definition of genetic database’ based on an under- standing of the ... 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 limited...

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... descriptions of DNA. 30 Explanatory Report to the Convention for 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, unclassified CM (96) 175 final (Strasbourg: Council of Europe, Committee of Ministers, 19 97) . 31 Convention on the Protection o...

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... 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 questions...

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... 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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... 67, 68–69 privacy 69 70 , 71 trust 67, 69, 70 71 public discourses on genetic databases 73 74 , 86– 87 Estonian Genome Project 73 , 77 78 , 86– 87 framing and contextualization 78 –80 implications 85–86 major ... Bondeson and Jones, The Ethics of Managed Care, 55 74 Salter, B., and M. Jones, ‘Regulating Human Genetics: The Changing Politic of Biotechnology G...

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