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 Sutropnot ... possibilities of betrayal. The lack of critical analysis of possible risks and benefits may bring a seriousbacklash in the future. The promoters’ limitless hype of the benefits of genetic databases ... anyoneat the time of consent: the time of the storage of samples and data has notbeen limited; it is not possible to foresee all the uses of the samples and associated data nor to specify who 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 978 0 521 8 679 2 4Matti Ha¨yry, Ruth Chadwick, Vilhja´lmur A´rnason, Gardar A´rnason The Ethics and Governance of Human Genetic Databases: European Perspectives 978 ...

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

... 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 ... manner.20 The UNESCO Universal Declaration on the Human Genome and Human Rights has recognized the fundamentalunity of humankind manifested in our sharing of the genome and sug-gested the linkage of ... opens the way for the consider-ation of the interests of other family members in the data on their relative,which raises the question whether consent will be required from the family or other...

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

... 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 Sciences32 (2001), pp. 689 70 4.20 Matti Ha¨yry and Tuija Takala the basic human rights, and from there into the constitutions of many European ... for by the solidity of the community, tied together with links formed by the mutual gift of tissue samples and genetic information. 37 How do our mezzanine rules protect and promote the European ...

The Ethics and Governance of Human Genetic Databases European Perspectives Part 3 pptx

... Anderson, ‘InSearch of the Holy Grail: Media Discourse and the New Human Genetics’, NewGenetics 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 UK team felt that the findings of this ... to feel thatthey can trust in the governance of the research agenda and the publicsphere. 72 Sue Weldonconsent to participation in the database which implies an understanding of the issue consented...

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

... 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 theircurrent usage.5Definitions of genetic databases can be found in the laws of Iceland,Sweden and Estonia,6but these are limited in their scope and may notcapture genetic ... Gibbons and Dr Andrew Smart for their assistance in developingsome of the ideas in this chapter and the ELSAGEN law team for increasing my know-ledge of the law in each of the jurisdictions of the...

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,19 97) .31Convention on the Protection of Human Rights and Dignity of the Human Being ... (e.g.SOU2004:20 Genetics, Integrity and Ethics, pp. 343–352).Third parties’ interests in population genetic databases 1 17 15 Governance of population genetic databases: a comparative analysis of legal...

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

... 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 ... at a theoretical level – and whether the latter iseven possible.4. the ways in which the development of and operation of biobanks giverise to questions about the existing repertoire of ethical ... demonstrate, as a matter of fact, the setting up of ethical mechanisms to respond to biobank developments.However, the nature and efficacy of this oversight, and the form and intensity of the accompanying...

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? ... Nordal and Vilhja´lmur A´rnason (eds.), Blood and Data: Ethical, Legal and Social Aspects of Human Genetic Databases (Reykjavı´k: University of Iceland Press and Centre for Ethics, 2004), pp. 175 – 179 ;...

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

... 67, 68–69privacy 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 –80implications 85–86major ... Bondeson and Jones, The Ethics of Managed Care, 55 74 Salter, B., and M. Jones, ‘Regulating Human Genetics: The Changing Politic of Biotechnology Governance in the European Union’, Health, Risk and Society4 ... and Genetics, 473 –486DeCew, J. W., In Pursuit of Privacy: Law, Ethics and the Rise of Technology, Ithaca:Cornell University Press, 19 97 Delanty, G., ‘Constructivism, Sociology and the New Genetics’,...

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