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Rapid Responses: Rapid Responses published:
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![[Read Rapid Response]](/icons/misc/sectionDOWN.gif)
In due time
- Tore Wie (4 January 1999)
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A tool for the future
- Ragnheiour Haraldsdottir (12 January 1999)
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Exclusive tools for the future
- Bogi Andersen, Einar Arnason (30 January 1999)
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Tore Wie, Supt veterinary officer Norwegian animal research authority
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A true homogeneous population is in a medical context a unique platform from which to extract new knowledge with implications far beyond current comprehension. The Icelandic database is therefore amongst the greatest revolutions ever in medical history. As such, the Icelandic initiative should be treated with admiration and respect and the authorities given due support. The outcome will doubtlessly benefit not only the population of Iceland, but the whole of mankind. Tore Wie Oslo |
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Ragnheiour Haraldsdottir, Deputy Permanent Secretary Ministry of Health and Social Security
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In your January 2nd issue you published an article (Private company wins rights to Icelandic gene database. BMJ 1999; 318:11) which gives an inaccurate and biased account of a complex issue. The proposed database will not exclude biotechnology companies or pharmaceutical companies from access to data on Icelandic patients, nor are exclusive rights given to one company to develop new drugs or to test candidate drugs. These studies will continue to be allowed, as long as they adhere to our regulations that are similar to those of any other western country. The central database will be privately owned and run, but Icelandic health authorities will have access to the information, provided that they comply with specific regulations. Other scientists also will have access unless commercial interests are involved. The data will remain were it origins, i.e. at hospitals and health care stations, and will continue to be used for patient care and research. Scientists are of course free to cooperate with anyone they choose. Let us assure you that the Government of Iceland and an unusually well educated public predominantly in favour of this experiment would not consider it´s implementation unless they were convinced that the numerous stipulations in the system set up to preserve patient rights were sufficient. The legislation on a medical database is supplemented by a recent law on patient rights as well as a comprehensive legislation on data protection, reflecting European resolutions and directives. Extraordinary steps have been taken to ensure that the many relevant bodies concerned did have an opportunity to comment on the bill at various stages and we did indeed get numerous valuable suggestions that improved the bill. The various international obligations that Iceland has undertaken have indeed been analysed and adhered to, and many experts on these issues have maintained that our precautions are indeed outstanding and will lead the way for other similar databases, that are certainly on the way. Those of your readers that would like more information on the issues are referred to www.stjr.is/htr Ragnheiður Haraldsdóttir Deputy Permanent Secretary Ministry of Health and Social Security Reykjavík Iceland |
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Bogi Andersen, Assistant Professor of Medicine (Andersen), Professor of Biology (Arnason) University of California, San Diego (Andersen), University of Iceland (Arnason), Einar Arnason
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Abi Berger's excellent News article (Private company wins rights to Icelandic gene database. BMJ 1999;318:11) describes the controversy over the proposed health records database in Iceland. In a response, Ragnheiður Haraldsdóttir Deputy Secretary of the Ministry of Health and Social Security states: "The proposed database will not exclude biotechnology companies or pharmaceutical companies from access to data on Icelandic patients,..", proving once again that we are "a nation original in many respects" (People are not commodities. Op-ed article in the New York Times Jan 23, 1999). Apparently, our government has found a way to grant an exclusive license to one party without excluding anyone else. We surmise that this concept would indeed be the "tool for the future", capable of revolutionizing the corporate world and human relations in general. Unfortunately, the Ministry's assertion is not consistent with the recently enacted law, which grants the licensee a broad protection under a monopoly. In fact, the very same official gave the following response when asked about restriction to other companies wishing to create selective databases: "such a company could collaborate with physicians to collect data, but it would not be allowed to enter into agreements with health care institutions to receive all information from health records" (translated from the Icelandic daily, Morgunblaðið). Instead of giving deputy secretaries an assignment to provide misleading information to the international scientific and medical communities to cover up ethical deficiencies of the law, our government should change or abolish it. Tore Wie, of the Norwegian Animal Research Authority, might be interested to know that the Icelandic government has allowed a private company, deCODE, to carry out an experiment involving the entire nation without ever asking for a research plan. Ironically, in the USA, such research conduct involving Norwegian rats as study subjects, would be punishable by law. Such is the status of human rights in Iceland. Bogi Andersen University of California, San Diego Einar Árnason University of Iceland |
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