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

... Anderson, ‘In Search of the Holy Grail: Media Discourse and the New Human Genetics’, New Genetics and Society 21 ( 2002), pp. 32 7 33 7; 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...

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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 ... Autonomy – The Principles of American Biomedical Ethics , Journal of Medical Ethics 21 ( 1995), pp. 33 2 33 8; Tuija Takala, ‘What is Wrong with Global...

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... 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 database research. Introduction: some lessons of ELSAGE...

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... Protection and Processing of Personal Data holds similar provisions, stemming from article 8, paragraph 3 of the EU Data Protection Directive, and articles 33 and 34 of the preamble to the Directive. These ... 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...

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... 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. 34 3 35 2). Third parties’ interests in population genetic databases 117 15 Governance of popu...

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... historical reasons. 3 Finally, at a deeper level there are different understandings of ethics and the appropriate role and resourcing of research, and indeed of the concept of global public goods ... manner. 20 The UNESCO Universal Declaration on the Human Genome and Human Rights has recognized the fundamental unity of humankind manifested in our sharing o...

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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 ... possibilities of betrayal. The lack of critical analysis of possible risks and benefits may bring a serious backlash in the future. The pr...

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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 ... who understands the purpose and nature of the study, what participation in the study requires the person to do and to risk, and what benefits are intend...

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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, Ice...

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... 228– 233 genetic counselling 1 23 125, 130 genetic disorders 186, 233 benefit-sharing and 167 duty of care 1 23 familial interests in genetic databases and 111 genetic counselling 1 23 125, 130 testing ... powers and sanctions 139 ethical review 138 forms of 133 notification and licensing 136 , 137 supervisory bodies 135 , 144 ethical considerations and 219, 221...

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