The Ethics and Governance of Human Genetic Databases European Perspectives Part 4 docx
The Ethics and Governance of Human Genetic Databases European Perspectives Part 4 docx
... 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 1997, ETS 1 64. 106 ... 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 ... 20c and d.6In the UK there has been little attempt to develop a legal definition of genetic databases, although there is general legislation in the form of the Human Tissue Act 20 04 to cover the use...
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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 ... definitions and approaches.When there are, the source is Matti Ha¨yry and Tuija Takala, Genetic Information,Rights, and Autonomy’, Theoretical Medicine and Bioethics 22 (2001), pp. 40 3 41 4. The mezzanine...
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The Ethics and Governance of Human Genetic Databases European Perspectives Part 2 pptx
... the only possible way of protecting the interest of privacy in the technology age of cyberspace and genetic databases. 97Allen, ‘Privacy in American Law’.8Council Directive 95 /46 /EC of 24 ... History and Philosophy of Biological and Biomedical Sciences32 (2001), pp. 689–7 04. 20 Matti Ha¨yry and Tuija Takala the basic human rights, and from there into the constitutions of many European ... of the concept and the connotation intact.An exception to this tradition was made recently when the IcelandicConstitution was revised to meet some standards of the European Declaration of Human...
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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 ... reflect-ing the final outcome of the project in terms of actual participation rates, 4 these figures reveal rather low actual interest in such issues on the part of the majority of the population. ... 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...
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The Ethics and Governance of Human Genetic Databases European Perspectives Part 5 potx
... far12Constitution of the Republic of Iceland 1 944 (Stjo´rnarskra´ lydveldisins I´slands 33/1 944 )with the rule of privacy in art. 71, establishing the right to ‘immunity of privacy, home, and family ... 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 April1997, ETS 1 64, art. 21. 14 See ... on the one side and genetic parenthood on the other. If only genetic offspringhave the right to block the use of medical records of a deceased parent,courts must start to examine the origin of...
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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...
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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.1 94 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...
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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 ... 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, 20 04) , pp....
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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 241 agreements 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...
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The Ethics and Governance of Human Genetic Databases European Perspectives Part 10 pdf
... 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 ... Journal of Medical Ethics 24 (1998), 81–85 European Values in Bioethics: Why, What, and How to be Used?’, TheoreticalMedicine and Bioethics 24 (2003), 199–2 14 Liberal Utilitarianism and Applied Ethics, ... Aspects of Human Genetic Databases: Distinctions on the Nature, Provision, and Ownership of Genetic Information’, Trames 8 (20 04) , 34 45 Bibliography 263Sa´ndor, J. (ed.), Society and Genetic...
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