In the June 1998 issue of Nature Biotechnology, several letter writers from prominent medical and scientific institutions in Iceland charged that Iceland’s deCODE Genetics was involved in an attempt to rush a bill through the Althingi, Iceland’s parliament, that would give deCODE exclusive access to assemble a database with genetic information about Icelanders. An editorial in the same issue of Nature Biotechnology chastised deCODE for basing its business plan on the idea that it would build such a database through close cooperation with the Icelandic research and medical community, when that relationship didn’t appear to be very close. Signals wrote a story based on the letter and editorial (To view it, click here).
CEO Kari Stefansson provided some comments in an interview with Signals included in the story, explaining that he did not sponsor the bill, and also that the letter writers were from a vocal minority and that he still has the support of most of the scientific community, the government and Icelanders. Claiming that the Nature Biotechnology editors misinterpreted the context of the letter it published, Stefansson has asked to make additional comments to clarify:
Stefansson contends that deCODE can still fully carry out its mission and business plan based on positional cloning of 35 common diseases in the Icelandic population, based on a database it has already created with the help of three hospitals and over 70 physicians in Iceland. deCODE previously announced a $200 million deal with Hoffmann-LaRoche for positional cloning, and Stefansson says that deal is completely unaffected by whether or not the bill currently pending in the Icelandic Parliament passes. “We ourselves have created a database of the genealogy of the entire nation,” he contends. The access that bill would provide, he says, “has nothing to do with products we are marketing now. The Roche deal is untouched.”
The database, however, he says would be useful for a second generation product, the ability to look at the healthcare of an entire nation in the context of genealogy and genetics, potentially allowing healthcare groups to do modeling for preventive healthcare and other uses. He says he would envision a database with non-exclusive licensing opportunities, much like the model Incyte uses for its genomic database.
Signals welcomes any further comment from interested parties in this story.
Signals has received another letter on this matter, this time from Jorunn Erla Eyfjord at the Icelandic Cancer Society.
Thank you for your interest in our letter to Nat. Biotech. and your online article. The reason for our letter were the numerous incorrect statements from Dr. Stefansson in Nat. Biotech. and other journals. He accuses us of "a stab in the back" although he admits that there is nothing "untrue" in our letter. It simply states the facts.
I first of all want to emphasize that I am not against the company deCODE and I wish it success.
What I and a lot other people object to is this proposed legislation and the way the goverment tried to force it through. This was opposed by all main scientific, medical and ethical bodies in the country - and the bill was stopped at the last moment. Now we are waiting for the revised version and have just been informed that: "Because of the summer holidays, the draft of the new bill has been delayed; It will probably be presented late July or early August". This is bad news - it means that again very little time will be given for comments.
Dr. Stefansson has very effective PR both here in Iceland and in the US helped by a lot of money. It is true that he has public support. Not many people have read the bill. Fortunately Icelanders are not used to think of themselves as victims and most people here say yes to the question: Would you be willing to give information for medical research purposes if it is guarantied that all personal identifiers are removed? Why not? I would not object. This is, however, not the issue.
There are several important questions to be answered. Do we want a nationwide database on all medical information, continuously active.Is it possible to safeguard such a database, does coding work when the database is supposed to be continously added to - considering the very small size of the population. Should such a database be run by a private company and should one company have 12 years monopoly on its commercial exploitation?
Jorunn Erla Eyfjord
Molecular and Cell Biology Research Laboratory
Icelandic Cancer Society
originally published 07/14/1998