The Icelandic database--do modern times need modern sagas?(Statistical Data Included)

On 17 December 1998, as a result of legislation instigated by deCODE genetics, a Delaware biotechnology company working in Reykjavik, the Icelandic parliament adopted a law making it legal for a private company to construct an electronic database of the country's health records.[1] deCODE has received an exclusive licence to build a database of Iceland's medical records (including diagnoses and test results, treatments and side effects) and will be able to combine and analyse these with genetic and genealogical data. The act also grants deCODE exclusive rights to commercial exploitation of the database for 12 years. Accordingly, deCODE has entered into a (non-exclusive) arrangement with Hoffmann-La Roche which gives the latter company access to the database for the purpose of researching the genetic origins of 12 common diseases.

Are the rules out of date?

The debate before and after the bill on Iceland's proposed database has been vigorous. Sigurdur Gudmundsson, Iceland's surgeon general, was quoted in the New Yorker as saying, "I don't think this country can just sit here and say, `Nope, sorry, we are going to stand on rules that existed in a different era for a different world.'"[2] But are the rules being applied to the database able to address adequately the issues that have been raised? It is striking that both proponents and opponents have classified the ethical and human rights issues similarly, into five main areas: informed consent, privacy, scientific freedom, benefit to Iceland, and commercial monopoly (sometimes included under scientific freedom or benefit).[3 4] These concerns can be grouped under two broad headings--matters of medical ethics and the question of scientific freedom versus commercial interests. The ethical issues are clearly important and relevant to international conventions and policies concerned with human rights. However, the way we categorise issues in a debate can sometimes obscure other aspects that need to be considered and prevent us from questioning whether traditional distinctions need to be revised.

Better, cheaper health care?

The database will not help directly any individual patient with the management of his or her condition, say those who are in favour of the database. Rather, it will be a tool in the development of new or improved methods of achieving better health, prediction, diagnosis, and treatment of disease and in establishing more cost efficient ways of operating health services.[5] The database can help to achieve the first aim by providing information--for example, on genetic and environmental risk factors in common diseases and statistical data on disease and treatment. The health economics aim is a secondary one, but it is still important. Although the average health status and the life expectancy of the population are high, Iceland's health insurance system is sixth in the Organisation for Economic Cooperation and Development's league table of expenditure on health care in …