The Ethics and Governance of Human Genetic Databases European Perspectives Part 10 pdf
The Ethics and Governance of Human Genetic Databases European Perspectives Part 10 pdf
... 2003Council of EuropeExplanatory 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 ... Bondeson and Jones, The Ethics of Managed Care, 55–74Salter, B., and M. Jones, ‘Regulating Human Genetics: The Changing Politic of Biotechnology Governance in the European Union’, Health, Risk and Society4 ... 222freely given 105 group 105 106 informed 102 103 public attitudes 56, 58special form 107 specific 104 defining human genetic databases 92, 93duty of care 122ELSAGEN project 54employers’ and insurers’...
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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 ... philosophical context of the science and technol-ogy on which the human genetic databases are based. The upshot of the analysis of fundamental concepts in bioethics isthat the widely accepted...
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The Ethics and Governance of Human Genetic Databases European Perspectives Part 2 pptx
... 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 ... such as the donation of genetic information to population-based genetic databases straddle the boundarybetween individual legal and ethical concerns and the wider concerns of society, and it ... secure the privacy and confidentiality of the people whose samples and records they collect,store and disseminate; and to ensure the ethical use of the informationwith which they are trusted....
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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 ... 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 ... 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...
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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 ... has the effect of infringing human rights, fundamental freedoms and human dignity’, UNESCO, The Universal Declaration on the Human Genome and Human Rights, adopted by the General Conference of...
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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 ... 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 ... 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...
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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 241agreements 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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