The Ethics and Governance of Human Genetic Databases European Perspectives Part 8 ppt
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 ... Beauchamp, A History and Theory of Informed Consent(New York: Oxford University Press,1 986 ), pp. 280 – 283 ; and Beauchamp and Childress, Principles, pp. 78 79.Informed consent and human genetic database ... 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...
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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 –704.20 Matti Ha¨yry and Tuija Takala the basic human rights, and from there into the constitutions of many European ... Promote the good! 38 See Ha¨yry, Liberal Utilitarianism and Applied Ethics; cf. Matti Ha¨yry, Ethics Committees,Principles and Consequences’, Journal of Medical Ethics 24 (19 98) , pp. 81 85 .The...
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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 ... 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...
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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 ... in the Body: Feminist Perspectives 9 78 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 978...
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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...
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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 ... inIceland has the recognition of the familial nature of genetic informationled to some kind of legal rights for family members. But the verdict of the Supreme Court of Iceland in the case referred ... considerations in the discussion about feedback are the rightnot to know, the duty of confidentiality and the duty of care.1 The centralquestion is whether the operator of a genetic database...
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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
... 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...
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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? ... allele and the trait, although the allele plays no causal role in the origin of the trait.19Correlation could also be an artefact of the structure of the population,for example, if a part of a...
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The Ethics and Governance of Human Genetic Databases European Perspectives Part 10 pdf
... genetic databases 73–74, 86 87 Estonian Genome Project 73, 77– 78, 86 87 framing and contextualization 78 80 implications 85 86 major agents represented 83 85 symbolic power of metaphors 80 82 weighing ... discourses 73, 77– 78, 86 87 framing and contextualization 78 80 implications 85 86 major agents represented 83 85 symbolic power of metaphors 80 82 weighing risks and benefits 82 83 regulation 95, ... Journal of Medical Ethics 24(19 98) , 81 85 European Values in Bioethics: Why, What, and How to be Used?’, TheoreticalMedicine and Bioethics 24 (2003), 199–214Liberal Utilitarianism and Applied Ethics, ...
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