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Icelanders opt out of genetic database CorrespondenceNature 400, 707 708 (19 August 1999) doi:10.

1038/23341 SirIn a News article1 the ethical guidelines for a Swedish biobank were compared to the lack of ethical considerations in the Health Sector Database (HSD) law in Iceland. The Icelandic project, proposed by deCODE Genetics, Inc, fares poorly in the comparison, mostly because the law permits the granting of an exclusive licence to a single company to do genetic and other research on the whole population database, without requiring informed consent. Instead the term presumed consent is introduced, leaving an opting out possibility for those who fill in the correct forms. Jeffrey Gulcher and Kari Stefansson of deCODE object to peoples jewelry the comparison2. Some inaccuracies in their letter deserve correction. First, they state that, according to the HSD law, medical information can be linked to genealogy and genetic information only with informed consent. But informed consent is not mentioned in the law3. Second, they state that "the bill grants deCODE the exclusive right to market this anonymous database pandora jewelry collection outside Iceland, but not the exclusive right to use the database". This is also incorrect. Although the HSD law was sponsored pandora charm bracelet prices by deCODE the company is not mentioned in it, and the licence has not been granted yet. More importantly, the database will not be anonymous since it will contain personal identifiers which, although encoded, can be used to identify individuals4. Third, the law grants the licensee the exclusive rights to create and operate the database, and says nothing about the access of other researchers, contrary to what Gulcher and Stefansson claim. But important changes were made to the bill in parliament, without debate. For example, the bill now allows the licensee to connect the medical database to a genetic database, without requiring informed consent. The warnings of nearly all the independent expert groups that were asked to comment on the bill were ignored3. Our small society was not able to withstand deCODE's expensive information campaign. Now the state controlled banks have purchased almost half of the US venture capitalists' original investment in deCODE, increasing concern about the close ties between deCODE and the government. This was not done, and the consequences are lack of consent, lack of traditional ethics control and lack of freedom to withdraw information entered into the database. More than 11,000 Icelanders have opted out of the HSD database. Many doctors have promised not to send information about patients to the database, so we believe it will not be created as originally envisaged. Sweden's UmanGenomics seems to be doing a much better job. P Hauksson1 Mannvernd, Association for Ethics in Medicine and Science, PO Box 94, Reykjavik 112, Iceland SirGulcher and Stefansson's letter2 is a striking demonstration of the corporate culture of companies such as deCODE Genetics and British Biotech, and their difficulty in telling the story straight5. To assert that the HSD law pandora charms jewelry was approved through a democratic process underestimates the steamrollering power of a large government majority. Warnings from the Icelandic Medical Association, local and international geneticists, and privacy experts were ignored.

The speed of the Icelandic legislative process precluded balanced and informed analysis of a complicated issue. It is sheer spin doctoring to suggest that this over speedy, ill thought through legislation expresses informed community consent. Using encrypted identifiers for a comprehensive dynamic database describing the health status, genealogy and genotype of a population without informed consent opens up an ethical Pandora's box.


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