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Iceland poised to sell exclusive rights to national health data

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Gene pool: Iceland's genetically homogenous population attracts geneticists and medical researchers. Credit: FRANK SPOONER PICTURES

Critics are hoping that a last-minute glitch will prevent Iceland passing a controversial law that would give a private company the exclusive rights to an electronic database of the nation's health records.

The government-sponsored legislation would give an Icelandic company a 12-year licence to create and market a database combining genetic, healthcare and genealogical information on every person in the country.

Although scientists have withdrawn their criticisms after the bill was modified, the proposed law has outraged opposition parties and medical doctors. Critics are now pinning their hopes on the slim possibility that the bill could be dropped under the weight of legislation waiting to be passed in the current session of parliament.

The database will heavily encrypt the identity of individuals, and is designed to provide researchers with information on groups of possibly ten. It will be regulated by four different committees appointed by the government, including a data protection committee and an ethics committee.

Patients will be asked for their consent if genetic information is to be included. But health and family data will be added to the database automatically from hospital and doctors' records, although individuals can be removed from the database if they make a written request.

The bill will almost certainly become law if it is put to a vote in parliament before Christmas. The outcome is effectively guaranteed, as the ruling centre-right coalition government has a comfortable majority in the 63-seat parliament.

Few recent government proposals have caused as much debate in Iceland as the database bill. It receives regular media coverage, and opinion polls have shown substantial but decreasing public support for the idea.

Critics include the Icelandic Medical Association (IMA), Mannvernd, a newly formed association of scientists and medical researchers opposed to the bill, and even Ernir Snorrason, a co-founder of the Reykjavik-based genomics company deCODE Genetics, which is most likely to win the licence for the database.

But the country's nurses and the Research Council of Iceland, both former critics, have reconsidered after government changes to earlier drafts of the bill — particularly disallowing the use of data on individuals and allowing patients to leave the database.

Vilhjalmur Ludviksson, the research council's director, says that the database provides a rare opportunity for Iceland's researchers to become involved in some exciting science, which the government — whose annual research budget amounts to US$120 million — would never be able to afford. But the IMA says that the database's drawbacks outweigh any potential advantages.

Patient privacy is a key concern. Ross Anderson, an adviser on computer security to the British Medical Association asked by the IMA to assess Iceland's proposals, says that no country has so far tried to set up a centralized database of this type.

This, he says, is partly because if all the information is in one place, it is easier to decode, regardless of security measures. Anderson says it is better to link separate databases than to create a central facility.

The main criticism, however, is of giving exclusive control of a database of all Icelanders to a single company. Indeed, perhaps the most controversial aspect of the bill is that was proposed by deCODE Genetics.

Last year, the company entered into a US$200 million agreement with Hoffmann La Roche, the Swiss pharmaceutical firm, to use separate information on Icelandic patients in research on 12 common diseases. The database bill is the brainchild of its chief executive, Kari Stefansson, and the company plans to invest US$170 million in the project. There are no other known contenders.

Both the government and Stefansson make no secret of either the origins of the idea or the potential commercial benefits to the company from marketing access to Iceland's healthcare records.

The government, however, says that the main aim of the database is to give scientists access to Iceland's coveted health records on its genetically homogenous population.

It also argues that the database will bring many benefits to Icelandic science, as the bill stipulates that a foreign company wanting access to the records will need to develop its proposals in collaboration with researchers in Iceland. It also specifies that the database cannot be sold overseas.

The government says that, while undoubtedly desirable, public sector investment in a database is beyond its reach, and private sector finance is needed. It adds that, without the carrot of an exclusive licence, no company would be willing to shoulder the required investment.

The government also claims that one of the advantages of a privately funded database is that the licence-holder will have to pay to manage, monitor and regulate the database, and to ensure that patient privacy is maintained. All these functions, however, will be independent of the licence-holder, and be monitored by the committees.

Despite these assurances, the IMA says that the licence-holder will retain considerable influence. deCODE Genetics is lobbying to sit on most committees, on the grounds that its interests need to be represented as the likely licence-holder.

The licence-holder will decide which companies to allow access to the data. It will also be allowed to veto use of the database by Icelandic scientists if their proposed research is judged to threaten its commercial interests.

Stefansson says that without such a veto, there is a risk that foreign multinational companies would be tempted to secretly use local scientists for commercial work. The government wants to charge local scientists less than foreign researchers. But it is uncertain whether this is allowed under the terms of the European Economic Area, of which Iceland is a member.

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Masood, E. Iceland poised to sell exclusive rights to national health data. Nature 396, 395 (1998). https://doi.org/10.1038/24667

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