WOS 2 / Proceedings / Panels / "Geistiges Eigentum" / Informationsvielfalt: Eigentum an Informationen / Skúli Sigurdsson / skript
Thank you for coming here on such a beautiful day when it is probably more interesting to be outside. I think it is quite symbolic to be in a building like this. A post-war product which probably could only have be down with a lot of information technology. Because these architectural fancies whether here or in the ... and TWA Building on John-F-Kennedy Airport in New York City would only have been possible with computational power. And just as in Hubbard's talk at the beginning it is into this both these complexes but also this particular Icelandic story. Computational power and one might say computational power under bomb is a very nice way or somebody might say a rather horrid way but lets call it a nice way to getting into this cluster. Because if we go further back then what Hubbard talked about then the predecessor organisation to the department of energy was the atomic energy commission. And the atomic energy commission was ever since the fifties one of the largest sponsors for genetic research in the United states and therefor probably World wide. Why? Clearly because say after Hiroshima, Nagasaki, until 1963 when you had the atmospheric bomb bombing the (...) which band atmospheric bombing on behave of the Soviet Union and the United States. The question is about what radio activity and a fallout would do to humans was at most concern enhance became part of the EOC policy, of the agenda enhance it not there for surprising that one of the chief geographical local of the human genom project is Los Alamos for the bomb and then for the genom, but in a sense for organisation with need things to maintain their inversia and juge computing facilities from the computer perspective whether your bit is something about a simulated bomb in south pacific down by the French or some DNA segment. The computer chip doesn't probably really care. But this actually leads very nicely to Iceland. The first thing to know I remember about Iceland is that Iceland has only now 283.000 citizens, which is very easy to remember because you take the last US censor count and you divide it by thousand and thus you have a raw estimate of the size of the Icelandic population. And so you have that size of a population and half of it or more lives in the Southwest of Iceland, basically Reykjavik, Keplavik, the airport where some of you may have stopped over. And Iceland which was a sort of a full ... backward outpost until the end of the 19 th century romanticised by the British utopian socialist Wilhelm Morris. He actually came here twice in the early 1870 to see there the christian society not destroyed by the rubbishes of industrialisation. That society became central with world war two and has remain central certainly until the end of the cold war. Just remember the Gorbashov and Regean meeting in Reykjavik in 86. And so one could as a spin of or a sad story to this then actually Icelandic society this 283.000 people have benefited hugely from the cold war and the second world war. And in the late sixties the atomic energy commission funded a project on a genealogical database with has these interest in order to understand or have a comparative population for looking at genetics which then in terms of the politics of the genetics fits perfectly into the cold war scenario and into Icelandic political history. So when I think of this Icelandic story or Icelandic post second world war two story then I think about the bomb and the IOC and with that provided some (merge) for Icelandic society. So, basically the IOC funded this genealogical database which was an operation from around 1970 was used for a little bit of research on human genetics, but not much, but a little bit. Then in 1996 there is a company funded called Decode Genetics. It is charted in Delavor, United States. It starts with 12 million dollars of venture capital funds provided by international finances. And that is a company which then does research on particular diseases and it is doing human genetics. And if it had only doing that all along I would not be sitting here I believe. But that in February 1998 Decode Genetics enters an agreement with (Hofmann La Ross). So it is a wonderful story because one of the fascination or what I like about this story is, and also the other two stories is this about where boarders and how boarders get blured. So here you have a so called Icelandic company charted in Delavor in the united states enters into an agreement with Hofmann La Ross a five year agreement which is an agreement, a mile stone agreement up to two hundred million dollars for those five years that up to soon got sort of semantically delete in the political language. And Iceland thought that it become the two hundred million dollar agreement instead of up to the two hundred million dollar as if Hofmann la Ross was a charity. And that in a way became because the timing is very special, that was in February 1998 and then at the end of March just before Easter 1998 certainly they is made this plan presented to pass to the parliament. A law which would make possible to create a large data base with health records, basically health records of everybody living in the country and also those who's records would be within the hospital or healthcare system, a social system and that would become then something which then the government on bases of a law which would be past could then have bits for ...then this database could run by a license. Everybody of course knew that the licensee was Decode, even though everybody bought Decode. The ministries and the politicians strangely denied that Decode had anything really to do with the formulation of the bill. Even though if they were obviously the chief beneficiaries. Only later did it come out as a little bit of extra investigated work by a very good historian and journalist in Iceland that actually the draft of the bill had been written up Decode and faxed to the ministry of health in Iceland in the beginning of September 1997, but then for strategic reason was only presented for parliament just before the easter break 1998. And then you had only one months left of the parliamentary session. So, basically the trick was to snick it in comes Easter, Easter acorns and then comes spring time and then you will pas it quickly through. I'm sure that is a very conniving way of dealing with democracy on both sides of the Atlantic. But they somehow ...they (burgled) it and once it burgled it there was opposition they lost there nerves and withdraw the bill and presented again in the fall of 1998 by which time Iceland had become a particularly attractive spot not only for those interested in Rock and Roll or Bjšrk or pop music but also for a hort of journalist and soon to be followed by ethnographors and social scientist. And the attractiveness of the Decode proposal was of course flow of money into the country, two: it would create jobs. And it has created allot of jobs. That is totally clear. It might actually diversify the economy for. It would be good for health. It could provide a lot in terms of some sort of cost make further on of good health. It could also inverse the brain train so that Icelandic scientist or people who studied abroad could return to Iceland and there is a grain of truth in all of these. So, that did very much to the attractiveness of both Decode as an enterprise but also of why parliament should issue such a law, pass such a law. And then the timing of that agreement with Hofmann La Ross and then the presentation of the bill is crucial as a building up of a momentum just as in some sort of a Opera or a Soap Opera that you have a crescendo up to a certain finale and then you know the curtain goes up. But what is important is that this legislation is about a data base of health records. It is in a way in that sense to speak genetically it is a phenotypic database, it is not a genetic database. And so once you here the word the genetic map of Iceland, the genes of all the Icelanders, that is just for the birds. I mean that is just total nonsense. That particular law, the law or the database verse legislated can't be compared of a larger database which verse might come to be more all embracing but to say that anything has going on like a genom project in Iceland. It is up on insanity because just as Hubbard described. I mean to do this one genom project it was so costly and then for however special Icelanders might be they would never have the money to do a second genom run of themselves and even once you tried actually to do a diversity genom project that backfired. But at least this thing in 1998 was not about genes. It really was about access to health records but of course this bluring went on and on and on. Because at the same time the company was also doing research in human genetics. So, it became a bit a question of... the right hand spoke about human genetics and the left hand spoke about health records until to the more public health policy. The protests singled on that giving this company and then also this bill it would end up giving it a monopoly situation, that the health records would be given over to the licensee without asking the patients for permission would both violate any notion of informed concern but would also destroye the patient relationship. That was then tried to be solved by a certain ob out clause that is actually if Chris goes to the (man when) webside O.k. that is fine then it is O.k ... that so now people can opt out of the database say that they would not want to be in the database. There was a lot of bad blot sort of spill cause of how this was preceded in the parliament and also that recently established antional bioethics committee was side stepped. That sum of the protest then in that year of the Clinton/Blair handshake then Decode they field with sec in Washington a for an IPO on Nasdaq which then took place in the summer in July 2000. So the field with security and exchange commission in Washington. And that is fascinating because parties like my co-panellist Love, the second one did, here we have the story in about Southafrica and then this 15c and how that gets written into American law and hands we have a thing happening in Iceland but we have the inverse 15c effect, because then Decode for the first time in his history has to fight with this sec. They can not just be bullshitting the Icelandic public and politicians. The sec won first. But of course one of the best ways of getting away with murder is to tell the truth, but tell just enough of it. So therefor you don't have that webside of sec, 800 pages of document in sum, hard to understand the US legalise. It is only the most .... People like would not be totally nasty at it by a debate, two years into the debate hardly weirdness or (stubbiness) to struggle through 800 pages of this which of course then tells you a lot about the aims of the company. They claimed that before pillars to their proposal quality health records, that was the health database, deep genealogy, that would even flirt with the ideas such you could sort of trace the Icelanders back to the Vikings, which is sort of a lot of hand waving needs to be performed in order to make that really fly, that the Icelandic genom was particularly pure, leaving a side the notion whether purity or impurity was good or bad for this kind of research you would be doing and then high level of education on behave of the population. Then you of course got a little knock at such as that the Hofmann la Ross in March 2000 turned out to be the largest shareholder that with 30% of the shares in Decode. And after the IPO which was successful, 170 or 80 Million Dollars in July 2000. Even that is not quite sure whether that really the money that was gotten in was from somewhere from abroad or manly from some Icelandic investors who may have been duped by the purity of the genes, then it turned out that after still Hofmann La Ross owned 10 % of the stocks in the company. So here you have an Icelandic company registered in Delavor and ten percent of it is owned by Hofmann la Ross which then list it in a holding company in Uruguay or Paraguay. I love it because it is so postmodern and so much of this is also totally postmodern because without websides on IT the opposition would never have taken a place it had done. I only learned to get into the confessional mode I only learned to use email 1995 and I really only learned to use websides two years ago when I had a need to. But webside is webside by one way you can access if you go to the webside of the conference here and look up my name. That has been a constant source for information of this because in such a small society 280.000 it is very incestuous and social conformity is very high. You can image that sort of the American small hick town Ricklarge. And that means that some of the best coverage of the story has been done by foreign journalist which are not pressured by conformity at home, also some of the worth coverage also has been done by foreign journalist and some e foreign anthropologist which have fooled in a way what I would call the stop over ethnography. So, there is a paper by Gisly Paulson and that Paul Rab you know which is called the Icelandic genom debate and that is written by the two of them. The one is Icelandic. He should know better. And the other one is the American Paul Rab and he also already has written a numbers of and published a numbers of books on the genom industry like 'The PCR book on French DNA' but that has still not from talking about the Icelandic genom project. So, probably if he would come here he would talk about this as the Indian concret tent in Berlin. I don't know what, because the application doesn't apply to the object. And I would only stop know that I would say that just two things, one Mike Furtune one of the more a very patient and delight and very good ethnographer who has said less but done more in terms of the study, has earlier spoken about speed economics. I think speed and the speed of these technologies are very crucial when it comes to this human genetic studies because speed means the speed of the market or of the machines ect is totally different then the speed of the comprehancel of the subject who need to be unlisted for the studies. You talked to Alzheimer patient or there relatives? And the machines are waiting and haming and... How you gone do it? And the other thing is that still today there is no health sector data base. So here I'm being invited to speak on a thing which doesn't exist. Still, which I find also very nice and they have made some agreements between the licensee Decode and some hospital in Iceland, but not with the largest hospital, the University Hospital in Reykjavik. But there is one data base which the project has spawned. So you don't have the primary object but you have a secondary object and that is the secondary object of optouts which is an op out database which registers the objections of social deviance which now contains some two thousand one hundred deviance namely those people who don't want to be in that future database once it will be established. But of course then for instance the diseased even with spiritualist technics can not opt out of the database. And you can read on their webside about a lawsuit by a woman who's daughter wants the records of her father to be removed from potential being entered into the future database never to be, perhaps sometimes to be established. But it is totally in mode with sort of Orwell plus Kafka plus Motorneti but I find it totally inappropriate for a modern state to establish a database of social deviance that is a database which exist not the Decode database. Thank you.

[transcript: Katja Pratschke]

Creative Commons License
All original works on this website unless otherwise noted are
copyright protected and licensed under the
Creative Commons Attribution-ShareAlike License Germany.