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...

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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... History and Philosophy of Biological and Biomedical Sciences 32 ( 2001), pp. 68 9–704. 20 Matti Ha¨yry and Tuija Takala the basic human rights, and from there into the constitutions of many European ... such as the donation of genetic information to population-based genetic databases straddle the boundary between individual legal and ethical concerns and...

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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 ... picture of the nation. The response rate was 68 %. Males accounted for 49.9% of respondents and females 50.1%: the distribution of the sample is very rep...

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... 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 in their scope and may not capture genetic ... 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...

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... grey zone. The question is whether or not the interest that the employer wants to protect is proportionate to the violation of the integrity of the employee. On the other hand, neither in the UK ... 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 Applicatio...

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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 ... 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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... 45 public attitudes in 45, 66 67 , 71–72, 1 16, 250, 251 ELSAGEN study 67 , 68 69 general attitudes towards genetic research 67 68 privacy 69 –70, 71 trust 67 , 69 , 70–71, 195, 1 96, 252 public good approach ... 59 60 , 255–2 56 regulation (governance) 250 alternative concerns 254–255 majority concerns 252–253 Sweden 46, 59, 60 65 , 250, 251 methods of study 59 60 United Kin...

Ngày tải lên: 05/08/2014, 13:20