Vikingbloed

Vikingbloed
VPRO Noorderlicht / 25 min / 25-10-1998
Door 1100 jaar van isolatie en twee natuurrampen is er op IJsland een genetisch walhalla ontstaan. Dr Kari Stefansson richtte het bedrijf deCODE Genetics op teneinde het genoom van de IJslanders te exploiteren. Farmaceutische bedrijven betalen miljoenen voor genen die aan de basis liggen aan ziekten als kanker, diabetes, hart- en vaatziekten en schizofrenie.

tekst van de uitzending::

VPRO NOORDERLICHT – TRANSCRIPT
UITZENDING 25 OKT 1998
TITEL: VIKINGBLOED
DOOR JOS WASSINK

DR KARI�STEFANSSON,
OPRICHTER EN DIRECTEUR DECODE GENETICS:
What is special about Vikingblood is that it contains the DNA from a nation that is homogeneous, a nation that knows an awfull lot about it�s genealogy and a nation that has almost impeccable records from it�s healthcare system. So the key to the biological understanding of the most diseases can be fished out from this genepool. Out of the genes that are found in this Vikingblood that is so precious.

COMMENTAAR:
Twee jaar geleden richtte de neuroloog Dr KAri Stefansson in IJsland het bedrijf deCODE�Genetics op om het Vikingbloed te exploiteren. Vorig jaar sloot hij z�n eerste miljoenencontract met de farmaceutische industrie.

DR KLAUS LINDPAINTER,
DIRECTEUR HOFFMANN-LA ROCHE GENETICS:
I�m one of the directors of Roche Genetics… Roche has six major resource centres around the world, two of them in the US, three in Europe, one in Japan. And all of them are to some extend involved in genetic research and I have to try and coordinate these things and then it�s important to have a face-to-face encounter every now and then. And so, yes, it does take a lot of travelling.
If we believe that genetics will help us identify new drug targets, will help us make progress in medicine, our best bet is to do it with the Icelandic population. If we can do it at all, we will be successful there. If we can�t do it there it will remain a dream and we will never be successful anywhere else.

COMMENTAAR:
Zo�n 1100 jaar geleden bereikte een groep Vikingen dit barre eiland in de noordelijke Atlantische Oceaan. De groep bestond uit 500 tot 2000 vluchtelingen uit Noorwegen. Ze vestigden zich op IJsland en overleefden hier in een onherbergzaam klimaat, in barre armoe en in afzondering van de rest van de wereld. Isoaltie en ontbering zorgden voor een ongekende genetische homogeniteit.
De huidige IJslanders vertonen grote overeenkomst in hun DNA. Zowel onderling als met de Vikingen.
De oude sage�s verhalen over de vroegste geschiedenis van IJsland en over de afstamming van de bewoners

DR GUDRUN ASA GRIMSDOTTIR,
ARNI MAGNUSSON HANDSCHRIFTINSTITUIUT:
In the beginning always the genealogy, that is the setting of the saga and the genealogy are from Norway.
They are searching for their origins, the Icelanders in the sagas and they find it in Norway which the chieftains. In Norway.

DR KARI�STEFANSSON:
The country was extremely poor and the only sign of the civilisation that was here for 1100 years are the books that are written. The history of the nation as told first in oral history and then written in books and the genealogy, the way in which the generations made sure that people made sure that peole would know they had been there was by documenting the history. The way in which individuals made sure that people knew they had been there was by documenting the genealogy. It was the only way in which they could leave their footprints on their era.

COMMENTAAR:
IJslanders zijn een administratief volkje. Zoals van oudsher de stambomen werden opgetekend, zo zijn vanaf het begin van deze eeuw ook medische verzamelingen bijgehouden. De kelders van het ziekenhuis in Reykjavik herbergen een weefselbank die z�n waarde al bewezen heeft bij de identificatie van de genen verantwoordelijk voor borstkanker. DeCODE probeert via de politiek toegang te krijgen tot deze genetische schatkelder.

DR VALGADUR EGILSSON,
PATHOLOOG, LANDS SPITALINN:
Now we�re here in the tissuebank and here are the oldest books.Well this is from 1942. The bank started actually in 1934, but this book is from 1942 as I say and we�ll have a look.
You see here name of the patient, that�s the docter sending the sample, date, what they find: the microscopy�s finding, clinical diagnosis and so on. So, as I say this tissuebank is since 1934 and we have been storing pieces of tissues or organ or whatever it is the surgeons is operating upon. Is it the appendix or whatever. Skin or tumour or whatever. And then we store it, certainly for clinical use and diagnostic use. Here we can see some of the samples, tissue-samples. We�ll have a look.

DR KARI�STEFANSSON:
Most of the diseases in our society if not all of the diseases in our society are either purely genetic or they have very strong genetic components. When I was in medical school, we were taught that the genetic diseases were few and of relatively little importance when it comes to public health, but in the quarter of a century that has passed since I was in medical school, it has become obvious that genetics plays a role in almost every single disease.

DR VALGADUR EGILSSON:
Let�s have a look at the tissuesamples as they are. That how we store them, let�s take one and we�ve got a very small one, the number is here and then we have some written information about the same about what the pathologists have been describing. Is it appendicitis, or is it a tumour or whatever it is.
– Can you show us a bigger one?
Bigger one?�Let�s have a look. Just take the chance. Yeah, this one is bigger. That�s probably nearly half a gram of tissue and there may be many such pieces from one single operation.
– What is the value of this collection for a geneticist?
Well, it�s very important if you are let�s say looking for a gene. A gene with some diseases associated with it, call it a tumour gene for instance as we are looking for. It�s very important to have tissue samples from older generations. Let�s say 3 or 4 generations back and that�s what we have here. That�s very helpfull if you want to isolate a gene.

DR KARI�STEFANSSON:
So we have the genetic homogeneity -which makes everything much simpler-, then we have the genealogy that makes all our work much more pointed, you know, much more goal-oriented, then we have the impeccable medical records that Icelanders have kept over the past 50 years or so. And when you add all of this together, you end up with a collection of qualities that makes the Icelandic population pretty much unique.
Many of the qualities that make the Icelandic nation unique are qualities that are rooted in the consequences of the tremendous poverty that was here for 1100 years. I mean the population botlenecks: twice in these 100 years, the nation was reduced by about 50%. First time becuase of the bubonic plague in the 1400�s and the second time in the 1700�s when a volcano erupted on the southcoast of Iceland and caused this big famine. So all of these catastrophes led to increase the genetic homogeneity in Iceland and the consequence of that is that it�s easier to do genetic research.

COMMENTAAR:
Het Vikingbloed van de huidige IJslanders is naar verwachting de grootste natuurlijke rijkdom van het eiland. Uit dit bloed wordt door enkele bewerkingen het DNA gewonnen dat het startpunt vormt voor de speurtocht naar de genen.

DR HREINN STEFANSSON:,
RESEARCHER DECODE GENETICS:
In this part of the lab we take copies of small segments of DNA, human DNA, and the reactions are mixed here and carried out in the robot in here. These robots here do the so-called PCR�reactions. They take copies of small sections of DNA�from our DNA.�

COMMENTAAR:
Na vermenigvuldiging is het DNA gereed voor de eerste analyse. Tientallen apparaten ontleden aan de lopende band het erfelijk materiaal van de IJslanders. Eerst grof en daarna steeds fijner. In eerste instantie gaat het erom om gelijke delen te vinden in het erfelijk materiaal oftewel het genoom van verschillende pati�nten.

DR KARI�STEFANSSON:
The human genome has a large number of regions in it where the sequence varies from one individual to the next. And the sequence variations are inherited in families and what you do when youre searching for a disease gene is you�re looking at these variable regions and you�re looking for a variable region where there is a particular form of region that follows the disease in a family. Then we say that that region is linked to a disease.

DR HREINN STEFANSSON:
So here people are determining the sizes of these copies that were made in the robot, the so-called allele-sizes and you can see this on the computerscreen over here.
And then statisticians do the work, try to find the segment that is common to the patient group but is not present in the controlgroup.

DR KARI�STEFANSSON:
Once you found such a region, you can sequence it, you use complicated computer programs to find the genes that are burried into that sequence and then you look for mutations in these genes. A mutation is basically an error in transformation of information, it is the place where the information has been scrambled.

DR HREINN STEFANSSON:
We try to find a mutation, which can be a change in 1 base or a deletion of a large segment or an insertion of a large fragment, so we are trying to find basically one base out of these 3 milliards from the beginning, and this takes some time but it can be done.

DR KARI�STEFANSSON:
Another advantage that we have here is that we know the genealogy of the entire nation. We have it on a computerdatabase that goes hundreds of years back in time. And if you again think about genetics as the discipline that tries to understand how information is passed on from one generation to the next, it becomes obvious that it is important to find the avnues by which this information is passed, it�s quitessential, here we have it.

DR HREINN STEFANSSON:
So in here we have the genealogy department, or part of it. And Thordur is going to tell us a bit more about genealogy.

DR THORDUR KRISTJANSON,
HOOFD GENEALOGIE, deCODE GENETICS:
With the database we can trace back ancestor trees of individuals back to the original settlement of Iceland which occurred more than 1100 years ago. For example Kari Stefansson, the director of the company, if we look at his ancestor tree, and take a look at one of his ancestors which is Erlendur Hardarson born in 1740, and now we have his ancestor tree and one of his ancestors is HAkon Arnason born in 1550, his ancestor tree and we go here, we have Loftur Guttormsson born in 1375 and we can continue. Here we have Narfi Snorrason born in 1135. Now we are in 930 with Thorarinn Thorarson and we can still continue and we�re up to Bj�rg Grimson born in 775. And he is father of one of the original settlers of Iceland.

DR GUDRUN ASA GRIMSDOTTIR,
ARNI MAGNUSSON HANDSCHRIFTINSTITUUT:
Yes, some people play with it, but I don�t believe it is true or possible. It is not possible.
I am here in this institute to publish genealogies from the 17th century and usually they don�t go any longer than to the 15th century. So even those men in the 17th century they didn�t believe they could chase to the settlers. And they didn�t care about that. So I look at these things with their eyes. If they did not do it, how could we do it now?

COMMENTAAR:
Er bestaat dus twijfel over de juistheid van de oudste delen van de stambomen. Erg is dat niet, want voor genetisch onderzoek zijn vooral de drie of vier meest recente generaties van belang. Dat zijn ook de gegevens die vorig jaar gebruikt werden in het onderzoek naar de ziekte tremor.

DR KARI�STEFANSSON:
It is the most common movement disorder of man, it affects about 10% of the people in the age of 60, it causes significant handicap, it causes significant social embarassment and it has been a disease you know, largely ignored by the medical community because people don�t die from it.

KRISTIN THORSTEINSDOTTIR,
dochter van pati�nt THORSTEINN S. J�NSSON:
He was feeling that he was getting worse for the last seven, eight years and was concerned and heard that deCODE was asking for people who were having this handshake and so he went there in order to.. If his problem and his participation would assist somebody, help somebody in the future.
His grandfather, his mother�s father was very bad with this. He was a great carpenter for both wood and mechanics.
He worked until he was 80. His grandfather and he was shaking in everything, if he was lifting a cup he had to grip with the other hand to make it still, but when he was working, when he was holding the tool that he was gonna use he was shaking, but when he started it was steady. But in most of the time, he was complete, very bad.
And then he doesn�t remember any one elder than that one and then there are two of us, me and my brother that are having this and it�s getting worse.

COMMENTAAR:
Tremor was een testcase voor deCODE. Het was de eerste erfelijke ziekte die ze probeerde te localiseren. Na minder dan een jaar werk publiceerde ze hun bevindingen in NATURE: de ziekte was gelocaliseerd op het derde chromosoom.

DR KARI�STEFANSSON:
It was very important for us. It took us extraordinary short time to map this. It happened almost instantaneously and everything went very nicely. So as such I have now rather warm feelings towards this particular disease and it is really, you know, in a way a contradiction in terms to become attached to a disease.

COMMENTAAR:
Het succes bleef niet onopgemerkt. Klaus Lindpainter las het artikel en besloot contact te zoeken met deCODE.

DR KLAUS LINDPAINTERD,
HOFFMAN-LA ROCHE, GENETICS:
I immediately realised the power of doing genetic work in Iceland and I sort of pursued that for while and then one day I opened Walls Street Journal and I saw a big write up on figured now is time to make a move so I flew there the next morning and started to talk with Kari and we spend a wonderfull morning talking science.

DR KARI�STEFANSSON:
He was very enthousiastic and we happened to share an almost identical view of how genetics, human genetics should be done.

DR KLAUS LINDPAINTERD:
Funnily enough, I actually went to join Hoffman La Roche only about a year ago and up until then I worked at Harvard University as an associate professor there.

DR KARI�STEFANSSON:
This happens to be the university I was working at when I put together this company, we had worked there in the same university, the same medical school, almost next door to eachother for quite some time and we never met.

DR KLAUS LINDPAINTERD:
It was clear to me that he had a very good group of people there, excellent scientists who understood what the issues where, that he also had this very unique set of reagents we call them, namely DNA-samples and populations that he could draw upon and we understood each other right away on the scientific level and we went from there.

COMMENTAAR:
Lindpainter leverde een lijst aan met twaalf ziekten die Roche opgespoord wenste en sloot een contract af ter waarde van maximaal 200 miljoen dollar als alle ziekten zouden worden opgehelderd. Er werden 60 extra krachten aangetrokken, waardoor het aantal werknemers bij deCODE nu bijna 300 bedraagt. Inmiddels zijn we een jaar verder. Zijn er al successen te melden?

DR KARI�STEFANSSON:
I can tell you that we made significant progress, we have mapped several very important diseases since then and we are in the process of writing papers to describe those discoveries. These are some important psychiatric diseases, some important rheumatological diseases etcetera.
The benefit from the work, if and when we discover genes is of course gonna go to the entire human kind, but the tangible benefits, the financial benefits. the employment opportunities we want to keep in Iceland. You could in a way look at our company as an attempt to get some poverty justice for the hardships of the times past.

COMMENTAAR:
Het succes van deCODE staat of valt met een brede maatschappelijke steun. En hoewel op straat bezorgdheid heerst over privacy, lijkt de politiek meer aandacht te hebben voor de extra inkomsten en de hoogwaardige werkgelegenheid.

DR KARI�STEFANSSON:
This is one of the first serious attempts to build up high tech industries of the size that it allows the country to retain it�s best people and allows the country to recruit back to Iceland scientists and scholars who have gone abroad because there wasn�t employment in Iceland.

ROLTITEL:

CAMERA Jack� van �t Hof
GELUID Ludo Keeris
MONTAGE Jack van Doornik
MIXAGE Jack Bol
KLEURCORRECTIE Ren� Holbrugge
LEADER Marco Vermaas
COMMENTAAR Tessel Blok
RESEARCH Jacqueline de Vree
Monique van de Water
Ger Wieberdink

REDACTIE Hilbert Kamphuisen
Hansje van Etten
Simon Rozendaal
Karin Schagen
Annemiek Smit
Marjan Tjaden
Jos Wassink

MUZIEK Fostbr�der Mannenkoor
o.l.v. Arni Hardarson

MMV Unnur J�kelsdottir, deCODE
Dr. Augustine Kong, deCODE
Dr. John Benedikz
Botschaft von Island , Bonn
H�rdur Askelsson, Hallgrimskirkja
schipper H�rdur J�nsson
Reykjav�kurflugv�llur
Sj�krah�s Reykjavikur
Landsspital�nn
Luchthaven Schiphol
Frida Wassink-Stevenson

PRODUCTIE Madeleine Somer
Karin Spiegel

SAMENSTELLING & REGIE Jos Wassink
EINDREDACTIE Rob van Hattum
COPYRIGHT � 1998, VPRO

copyright � Het Inzicht / Jos Wassink, 1998

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