The Population Database of Iceland
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Int J Pharm Med 2003; 17 (1): 5-6 1364-9027/03/0001-0005/$30.00/0 © Adis Data Information BV 2003. All rights reserved.
The Population Database of Iceland Frank O. Wells Marix Drug Development, Ipswich, UK
In the Society of Pharmaceutical Medicine Report on Pharmacogenetics, and specifically in the section on Ethical Issues, reference was made to the Icelandic Health Sector Database (HSD).[1] It was concluded that this database was not an ideal model for such a purpose, this conclusion being based on two quite different areas of concern. One dealt with serious issues regarding consent, or the lack of it, and the other dealt with the possibility that the premise that Icelanders were genetically homogeneous, which was one reason for choosing Iceland in the first place, was false. The setting up of this database had been heavily criticized by the (Icelandic) National Bioethics Committee and Data Protection Commission, but it had nevertheless been established by an Act of Parliament. Criticisms particularly concerned issues of informed consent and of the consequences of granting a licence to a single commercial organization, deCODE. However, the greatest concerns were that anonymization, even with encryption, would be inadequate, and that the population of Iceland had been recruited into the setting up of this database without their full knowledge. Certainly the entitlement to opt out of the database was difficult to understand, let alone achieve. Other concerns related to the regular opening of the HSD for updating personal health data, which it was felt would jeopardize its confidential nature, and to the possibility of linking the HSD to other databases without consent, with consequent implications for both life insurance and employment. All these concerns remain. More seriously, and on the second area of concern mentioned above, a report has now been published from Iceland challenging, with evidence, the concept of Icelandic homogeneity.[2] This well researched article virtually demolishes the frequently publicized statement that there is a special genetic homogeneity of the Icelanders and is based on a systematic extensive reanalysis of mitochondrial DNA (mtDNA) variation by examining primary data from original sources on 26 European populations. The results actually showed that Icelanders, using two specific parameters, are amongst the most heterogeneous Europeans and, using a third parameter, that the pattern of their genetic differences has the same shape as European populations in general, and shows no evidence at all of bottlenecks of numbers in Iceland. Therefore, this is totally at variance with what is still vigorously being promulgated. How has this happened? In a commentary on Arnason’s[2] article in the same edition of the journal in which the article appears, Professor Peter Forster of the Molecular Genetics Labora-
tory at the University of Cambridge offers an explanation.[3] Recollecting that he himself had had been involved in mtDNA sequencing in the past, Forster described how the first sequence
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