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LETTERS: Gisli Ragnarsson Opposition to the Icelandic database is based on false information BMJ 1999; 318: 1354 [Full text]

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WORLD MEDICAL ASSOCIATION'S OPPOSITION TO ICELANDIC HEALTH DATABASE FOUNDED ON CORRECT INFORMATION

Tomas Helgason   (17 May 1999)

WORLD MEDICAL ASSOCIATION'S OPPOSITION TO ICELANDIC HEALTH DATABASE FOUNDED ON CORRECT INFORMATION 17 May 1999
Tomas Helgason, Emeritus professor of psychiatry University of Iceland Send response to journal: Re: WORLD MEDICAL ASSOCIATION'S OPPOSITION TO ICELANDIC HEALTH DATABASE FOUNDED ON CORRECT INFORMATION	EDITOR - The readers of BMJ can evaluate for themselves the correctness of Nigel Duncan´s report from the World Medical Association´s recommendation about the Icelandic act on a health sector database (1). Mr. Ragnarsson's statement in his letter to BMJ (2) is telling for how little the Icelandic public understands this complex issue. According to the Icelandic act on a health sector database (3) a private company will be given the exclusive right to set up and run the database and link health data to genetic data as well as to genealogical data. Health data is defined in article 3 of the act as "information on the health of individuals, including genetic information". Genetic data is defined as "any data; of whatever type, concerning the heriditary characteristics of an individual or concerning the pattern of inheritance of such characteristics within a related group of individuals. It also refers to all data on the carrying of any genetic information (genes) in an individual or genetic line relating to any aspect of health or disease, whether present as identifiable characteristics or not". Article 10 of the act states: "The licensee shall be authorised to process data on the health sector database from the health data recorded there, provided that data are processed and connected in such a way that they cannot be linked to identifiable individuals. The licensee shall develop methods and protocols that meet the requirements of the Data Protection Commission in order to ensure confidentiality in connecting data from the health-sector database, from a database of genealogical data, and from a database of genetic data. With regard to linking the data on the health-sector database with other databases than those specified here, the Act on recording and handling of personal data shall apply." The linkage of the above mentioned data will be very easy as the prospective licensee will have all three databases. Further, each person in the database will have a unique "encrypted" identification number (pseudonym for the official ID number) under which all entries relating to that person will be registered in the database (4). References 1. Duncan N. World Medical Association opposes Icelandic gene database. BMJ 1999; 318: 1096 2. Ragnarsson G. Opposition to the Icelandic database is based on false information. BMJ 1999; 318: 1354. 3. Icelandic Ministry of Health and Social Security. Act on a Health Sector Database no. 139/1998. httpp://brunnur.stjr.is/interpro/htr/htr.nsf/pages/gagngr-log-ensk. 4. Helgason T. New legislation on health database threatens personal autonomy and freedom of research. Acta Psychiatr Scand 1999; 99: 313-314. Tómas Helgason Dr. Med. Emeritus professor of psychiatry University of Iceland