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,3how well have the authorities of Estonia, Iceland, Sweden and the United Kingdom addressed theseconcerns? ... 93 –145. Genetic databases and governance 241agreements represent cases of privatization of a specific function of anotherwise public gene bank, i.e. a classical tool of governance. The lack of direct participation...

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

... descriptions of DNA.30Explanatory 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, 199 7).31Convention on the Protection of Human Rights and Dignity of the Human Being ... ( 199 9), p. 3.23Bill on a Health Sector Database, submitted to the Icelandic Parliament at 123rd session, 199 8– 199 9, Notes to the Bill, s. I(2).24Bill on Human Genes Research, submitted to the...

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 databaseresearch.Introduction: some lessons of ELSAGEN 5 The Ethics and Governance of Human ... in the Body: Feminist Perspectives 97 8 0 521 86 792 4Matti Ha¨yry, Ruth Chadwick, Vilhja´lmur A´rnason, Gardar A´rnason The Ethics and Governance of Human Genetic Databases: European Perspectives 97 8...

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

... an Information Age: The Problem of Privacy inPublic’, Law and Philosophy 17 ( 199 8), pp. 5 59 596 .6This happened in 199 5. The languages of privacy 39 Subsidiarity The idea of attaining essential ... 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 ... 95 /46/EC of 24 October 199 5 on the protection of individuals withregard to the processing of personal data and on the free movement of such data, OJ 199 5No. L281, 23 November 199 5. 9 See my chapter...

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 ... picture of the nation. The response ratewas 68%. Males accounted for 49. 9% of respondents and females 50.1%: the distribution of the sample is very representative of the Icelandic nation. The empirical ... with the HSD and the form of the Act. A large number of articles, by Icelandic specialistsas well as by people from other countries, have been written about the HSD and the passing of the HSD...

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

... Convention on 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 199 7, ETS ... Icelandic Parliament.7Council Directive 95 /46/EC of 24 October 199 5 on the protection of individuals withregard to the processing of personal data and on the free movement of such data, OJ 199 5No. ... ‘help the society understand where geneticists have arrived and where they willarrive’ (Eesti Pa¨evaleht on 27 January 199 9).From the very beginning of the domestic gene debate, the initiators and proponents...

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

... Directive 95 /46/EC of 24 October 199 5 on the protection of individuals withregard to the processing of personal data and on the free movement of such data, OJ 199 5No. L281, 23 November 199 5, art. ... 197 6, 99 3 UNTS 3, ( 197 6) 6 ILM 360.3UNESCO, The Universal Declaration on the Human Genome and Human Rights,adopted by the General Conference of UNESCO at its 29th Session on 11 November 199 7; ... there aredifferent 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...

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. 194 Margit Sutropnot ... regardless of the gendered consequences which may flow from them’.12Council Directive 97 /80/EC of 15 December 199 7 on the burden of proof in cases of discrimination based on sex, OJ 199 8 No. L014, ... Icelandersare for instance listed in the Book of Icelanders, which is a databasecontaining the genealogical information of 95 % of the Icelandic popula-tion since the settlement of Iceland...

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

... Macmillan, 195 9 [1875]), 47/4 29. 29 Ibid.30See O’Neill, Autonomy and Trust, pp. 86– 89, 97 .Informed consent and human genetic database research 211background knowledge can limit understanding of the ... not only the Human Genome Project, but also population-based human genetic databases. One of the main justifications for human genetic databases isindeed the possibility of producing the knowledge ... purposes. Participants would be informed that they and/ ortheir proxies will be regularly informed about the research practice and that they can at any time opt out of the research if they choose.There...

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

... 188, 190 – 191 alternative and complementary concerns251–252concept of 191 – 193 in context of human genetic databases 194 – 195 Estonia 50, 51, 52, 195 , 196 , 252Iceland 55, 58, 1 89, 195 , 196 , 252kind ... (2002), 325–3 39 272 BibliographyCouncil Directive 97 /80/EC of 15 December 199 7 on the burden of proof in cases of discrimination based on sex, OJ 199 8 No. L014, 20 January 199 8Council of Europe ... Nature 387 ( 199 7), 754‘Pro-life is Anti-life: The Problematic Claims of Pro-life Positions in Ethics , inHa¨yry and Takala, Scratching the Surface of Bioethics, 99 –1 09 Harry, D., The Human Genome...

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