Sir

A recent News article described a new Swedish genomics company, UmanGenomics, as having a higher ethical nature than another genomics company, deCODE genetics, which was portrayed as having questionable practices (Nature 400, 3; 1999). We do not accept this characterization.

The article described deCODE as a “US-based gene-brokering company” with special rights in Iceland. But deCODE and its 260 employees are solely based in Iceland; the company has already delivered to Iceland the much-needed high-tech jobs that UmanGenomics has promised in Sweden.

From early on, deCODE set high ethical and privacy standards that meet or exceed European Union regulations for human research, under the scrutiny of a national bioethics committee and the Data Protection Commission (DPC) of Iceland. The company has not generated any data from biological material without informed consent granted specifically for each study. All information and biological samples arrive at the company with personal identification numbers encrypted by the DPC. To our knowledge, the current system for protection of privacy at deCODE is unsurpassed (see www.decode.is).

Comprehensive genealogy is an essential tool for population genomics research. It does not yet exist in Sweden but, because Icelanders have been uniquely interested in their genealogy for the past 11 centuries, deCODE has been able to assemble a computerized genealogy database containing all 270,000 living Icelanders, together with 330,000 of their ancestors.

The News article states that a population-based biobank is to be generated in Iceland under the exclusive control of deCODE, and that Icelandic scientists would have to pay deCODE to carry out basic research. This is incorrect. The Icelandic health-care database would contain medical information with irreversibly encrypted identifiers that, according to database law, can be linked to genealogy and genetic information only with informed consent. The bill grants deCODE the exclusive right to market this anonymous database outside Iceland, but not the exclusive right to use the database. According to the law, the database is to be controlled by a licensee (deCODE) as well as by oversight and ethics committees and the DPC. Icelandic scientists choosing not to collaborate with deCODE will have the same or better access to patients and their medical records, not less. Those doing non-commercial research will have free access to the database. The law dictates that the data are to be stored so that they cannot be linked to individuals, so the database would not be a biobank as defined by the Swedes.

The article incorrectly gives the impression that UmanGenomics' use of its Medical Bank is going to be with the consent of the community, whereas deCODE's use of a database was opposed by the community. The Icelandic poll actually asked whether people were concerned about the protection of privacy in a centralized medical database, and (surprisingly) only 25% said yes. UmanGenomics was granted permission to use its Medical Bank by government committees and bureaucrats, which is not ‘community consent’.

In stark contrast, deCODE obtained its licence to construct and run the health-care database through the democratic process. In 1997, the company suggested the database to the Ministry of Health, which then drafted a bill and placed it on its open website for comment. The government submitted the bill to the parliament (Althingi) in early 1998. Vigorous local debate lasted nine months and included hundreds of newspaper articles, radio and television programmes. Icelanders debated the database bill more than any other bill in the history of the republic. On the eve of the vote on the bill, a poll showed that 75% of the population supported it, and Althingi passed it last December by the same margin.

One premise in the News article is that, because government institutions own 51% of UmanGenomics, the proper use of its Medical Bank is assured. But governments have a bad record on violation of privacy. Further, the health-care authorities and the university that own most of UmanGenomics are mainly concerned with attending to diseases and health. Majority ownership of a genomics company that uses health-care information from clients as raw material may be seen as a serious conflict of interest.