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. 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 UK team felt that the findings of this ... reflect-ing the final outcome of the project in terms of actual participation rates,4these figures reveal rather low actual interest in such issues on the part of the majority of the population....

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 ... Autonomy – The Principles of AmericanBiomedical Ethics , Journal of Medical Ethics 21 (1995), pp. 33 2 33 8; Tuija Takala,‘What is Wrong with Global Bioethics? On the Limitations of the Four PrinciplesApproach’, ... History and Philosophy of Biological and Biomedical Sciences 32 (2001), pp. 689–704.20 Matti Ha¨yry and Tuija Takala the basic human rights, and from there into the constitutions of manyEuropean...

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 ... http://www.ukbiobank.ac.uk/ ethics/ efg.php.On human genetic databases 13 1 Introduction: some lessons of ELSAGENVilhja´lmur A´rnason The investigation of ELSAGEN (Ethical, Legal and Social Aspects of Human Genetic Databases: ...

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

... Protection and Processing of Personal Dataholds similar provisions, stemming from article 8, paragraph 3 of the EU Data Protection Directive, and articles 33 and 34 of the preambleto the Directive. These ... 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. 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.SOU2004:20 Genetics, Integrity and Ethics, pp. 34 3 35 2).Third parties’ interests in population genetic databases 11715 Governance of population genetic databases: a comparative analysis of legal ... 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...

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

... historical reasons. 3 Finally, at a deeper level there aredifferent 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 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 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 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 ... 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 intended to result from the study’. 13 More specifically, ... Organization, Genetic Databases: Assessing the Benefits and the Impact on Human and Patient Rights (Geneva: WHO,20 03) . 3 See, for example, HUGO Ethics Committee, Statement on Benefit-Sharing (London:Human...

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, 3 how well have the authorities of Estonia, Iceland, Sweden and the United Kingdom addressed theseconcerns? ... further Brian Salter and Mavis Jones,‘Regulating Human Genetics: The Changing Politic of Biotechnology Governance in the European Union’, Health, Risk and Society 4(2002), pp. 32 5 33 9; for the...

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

... 228– 233 genetic counselling 1 23 125, 130 genetic disorders 186, 233 benefit-sharing and 167duty 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 , 144ethical considerations and 219, 221–222ethical review 137 – 138 forms of 133 – 134 genetic ... approach 1 53 regulation (governance) 95, 132 , 2 53 enforcement powers and sanctions 139 ethical review 137 – 138 forms of 134 notification and licensing 136 , 137 supervisory bodies 135 , 136 , 144right...

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