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

... 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 ... (e.g. SOU 2004:20 Genetics, Integrity and Ethics, pp. 343– 352 ). Third parties’ interests in population genetic databases 117 15 Governance of popul...

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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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... of data for research at the time of collection. This creates a particular challenge for the ethics of database research. Introduction: some lessons of ELSAGEN 5 The Ethics and Governance of Human ... original hypothesis was that there must be a clear distinction between the American and European approaches to the ethics of human genetic 1 The expr...

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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 ... an Information Age: The Problem of Privacy in Public’, Law and Philosophy 17 ( 1998), pp. 55 9 59 6. 6 This happened in 19 95. The languages of privac...

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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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... survival and rights protection.’ 25 The themes of resourcing, commonality, difference and (dis)benefit are further expressed in the continuing statement: After the rest of the world have squandered their ... there are different understandings of ethics and the appropriate role and resourcing of research, and indeed of the concept of global public goods it...

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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 ... Icelanders are for instance listed in the Book of Icelanders, which is a database containing the genealogical information of 95% of the Icel...

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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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... towards genetic research 54 55 Health Sector Database (HSD) 53 , 57 , 251 method of study 54 personal information rights 57 privacy rights 56 57 trust 55 , 58 methodology of study 54 , 59 –60, 255 – 256 regulation ... attitudes and awareness 20, 45 46 Estonia 46, 47–49, 51 , 250 Estonian Genome Project 49 52 trust 50 , 51 , 52 , 1 95, 196, 252 Iceland 45, 57...

Ngày tải lên: 05/08/2014, 13:20