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

... 2003 Council of Europe 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 ... Bondeson and Jones, The Ethics of Managed Care, 55–74 Salter, B., and M. Jones, ‘Regulating Human Genetics: The Changing Politic of Biotechnology...

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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... of the concept and the connotation intact. An exception to this tradition was made recently when the Icelandic Constitution was revised to meet some standards of the European Declaration of Human ... such as the donation of genetic information to population-based genetic databases straddle the boundary between individual legal and ethical concerns and the...

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... 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 ... with the HSD and the form of the Act. A large number of articles, by Icelandic specialists as well as by people from other countries, have been written about...

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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 ... in Iceland has the recognition of the familial nature of genetic information led to some kind of legal rights for family members. But the verdict o...

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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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... 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...

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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 ... purposes. Participants would be informed that they and/ or their proxies will be regularly informed about the research practice and that they can at any time opt o...

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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...

Ngày tải lên: 05/08/2014, 13:20