10:00:43
Eduardo Kac:
We have here this genie bottle and at the bottom of the bottle we have synthetic DNA that comes from genesis bacteria which means that this white powder here is the actual genesis DNA and the other element of this sculpture is this three- dimensional form which is another part of the sculpture that is the genesis protein cast in gold and this protein form was created directly from this genesis DNA so the DNA results in this three- dimensional protein form. And together they represent the two fetish items of the genetic world, of the biotech world, the gene and the protein, which are here functioning as a commentary on the conmodification of life. In fact that the most important elements of life have been transformed in objects of commerce.
10:01:58
Jim Kent:
I like to think of the human genome in the context of the whole earth – here we have ice caps, its got some continents, like Africa, so where we all came from. And Europe.
And on this world there is a lot of things the one thing is there is about 3 billion human beings and about 6 billions actually. That's quite a bit of us. And how we work- who knows really how we work. They kind to think with their brains that much is pretty clear. But we need are better cells a lot of cells actually more cells then we are humans, there is about a hundred trillion cells. And a cell is actually a very complicated thing is has little things on its surface that are certainly like the eyes and the ears for the cell and then it can make things and it put things out. This is wonderful. Pathway and the sense of things and alters it in the environment. But in a way the brain of the cell is in the nucleus and the nucleus is where the DNA is. And this is more than anything- where the cell mixes decisions and decides how to grow and which way to grow. And so the DNA - the DNA is a sort of nice bio stereo case of a monocule. It looks sort of like this when we do it.
10:03:45
Commentary1:
In the year 2000 history was written here at the University of Santa Cruz in California.
Since the beginning of the 90s thousands of scientists worldwide had been collaborating on a joint, large-scale project, the "Human Genome Project”, to determine the number and position of the genes on the DNA.
A decisive role in decoding the human genome was played by the scientist Jim Kent.
10:04:16
Jim Kent:
I guess these days, the human genome it seems very big and in some ways it is very big. But at the same time actually Patrick was the first one who fitted it on to one CD-ROM. So it is really no bigger than a video game so it is not like it was built by hand and it says where this part does this and you know looking at it you couldn't figure out what this is. You know it looks like complete gibberage and so these computers are largely involved with trying to figure out what it does what part of your genome is responsible for your blue eyes what is responsible for your beard or your smell it turns out actually that quite a lot is developed to smell, you have maybe 5% of your genome is to smell good.
Let's go outside I`ll show you some of the redwoods.
10:05:22
Patrick:
In case you are interested this is why one of this machines looks like on the inside. Now, the great thing about it, is that it is really simple it is just a box with a motherboard - it's just like any other computer really you can go to any computer store and buy this parts. And you can plug
a monitor in here or you can plug a keyboard in here if you want to, we usually don't plug anything into them - but...
10:05:52
Jim Kent:
It is a multidiversal machine it can play video games and can assemble the human genome either one.
10:06:02
Patrick:
And, I would say we use them for both but we don't.
10:06:09
Bill Clinton:
Today we are learning the language in which god created life. We are gaining every more all more for the complexity, the beauty, the wonder of gods most divine and sacred gift.
10:06:45
Jim Kent:
DNA is a really incredible chemical you have probably seen this as a sort of double helix in the way that it is and it is very, very long most chemicals are so small you couldn't possibly see them. The DNA is actually if you unlounge your DNA it is about this long. Just one molecule. And on it is sort of shaped like a spiral staircase and each step on the staircase is one of four letters either A C G or T. And all together there is 3 billions steps on the staircase and the sequencing project is that to read each and every step and to know whether all of them are. And it has sorts of these pairs of basis. And I guess Watson and Crick discovered this amazing pretty proud of themselves of good reason they felt it was kind of the secret of life at the lowest level.
10: 07:57
Commentary 2:
In 1953 the scientists James Watson and Francis Crick discovered the structure of the DNA in the form of a double helix, and were awarded the Nobel Prize for this.
Almost 50 years later a dramatic race began between private enterprise and public research institutes to decode the human genome.
Private venture capitalists wanted to patent the genes and sell their know-how to biotechnological companies. However, the government-funded "Human Genome Project” published the data daily on the Internet to prevent patenting.
Jim Kent won the race single-handedly by writing a software programme in only four weeks. With the help of this tool the sequencing of the human genome could be completed much more quickly than planned.
With his help the public project was 3 days faster than the private competitor.
10:08:52
Craig Venter, his counterpart in private enterprise, had the gene sequences discovered by him patented to secure for himself the exclusive rights to manipulate human genes. Suddenly, the primary motive in genetic research was no longer scientific progress or curing diseases but rather to make enormously huge profits.
10:09:18
Craig Venter:
Genomics not necessarily genetics and there is a difference will be the major driving force on the economy of the whole world. Not just in terms of human disease but in terms of plants, bacteria, the use of bacteria, to clean up the environment, the use of bacteria to synthesise chemicals, the use of genes and organisms as whole new sources of energy.
10:09:44
Andrew Kimbrell:
One of the leading proponsances that Craig Venter who was working for the National Institute of Health our tax paid money and then moved over to private sector where all our tax paid dollars research and decide the use of patent thousands of human genes and putting a number of brain genes and this began a gold rush to patent human genetic material and when I see thousands and thousands of genes that had been patented.
10:10:13
Commentary 3:
As a lawyer, Andrew Kimbrell has dedicated himself to ensuring the safety of our foods for over 20 years. He is increasingly preoccupied with the dangers of gene technology.
10:10:29
Commentary 4:
The fierce competition surrounding the human genome officially ended with the publication of both results in the same week. The government-sponsored "Human Genome Project” published its results in the magazine "Nature”, while Craig Venter, as the representative of private industry, published his results in the magazine "Science”.
Both parties were equally honoured at the White House.
10:11:01
Francis Collins
Das ist ein glücklicher Tag für die Welt, es ist uns gelungen den Bauplan des Menschen zu entschlüsseln, den bis heute nur Gott kennen konnte.
Das bedeutet auch, dass wir enorme Verantwortung haben, Historiker werden diesen Tag als Zeitenwende sehen.
10:11:26
Eduardo Kac:
I created this synthetic gene by taking a passage from the bible from the book of genesis in which god talks to men and says "Let men have the dominion over the fish of the sea over the fall of the air and over everything upon that moves on the earth". Basically god gives the men thought of total control over all life. I translated that to Morse-code that has dots and dashes and morse also represents the genesis of global communications as we have today with satellites and television and the internet and I went from the dot and dash of morse to the four elements of genetics C G T A. The result was a gene a sequence of C T G A it was then the genesis gene. A gene that encoded the biblical sentence.
And of course in this case my piece functions as a critical commentary because I don't see humans a the top of any hurrykey of life it's humans being part of continuity.
10:12:32
Eduardo Kac:
Artists have always worked with the technologies of their time. Now the difference is that we are not working with machines we are not working with ennord physical matter we are not working with a marble, plastic or electronic boards we are working with living beings this is very different. It is very different it is very important that an artist that works with biotechnology understands that if you going to create life and if you are going to modify life you can not treat this life as you treat a peace of equipment, or plastic, or some other material. There is an ethical dimension when we work with life in the context of art in particular that really must be emphasised.
10:13:21
Jim Kent:
So this the science of the journal Nature where we first published the article about the human genome. It was a huge article. I think it must been a hundred or a thousand scientists working on it. Here is another page and there is actually another more folder so this was a scientist centre folder. Now the thing is this if you look at this you need a magnify glass and you see the tiny prints and maybe a cell- you can't really tell what's going on. To really see it you need the web and that was really- I guess- one thing I am proud of my own work was with building than a browser so you could with the web it was actually like the work with a microscope where you can zoom in and you can see just this little tiny section and you can see all kinds of detail about it or you say, no I wanna see this whole section, see the whole thing and the scales are big or down just to the single, single base at a time and it's very useful for scientists. At the end what we were trying to do is to make a map a very, very detailed map of the human genome and you have a picture of the chromosome the human genome is made of 23 pairs of chromosomes and this is one pair this is actually the biggest pair chromosome one and then along the chromosomes we showed all the genes that we knew existed at the time. Actually these are probably only a third of the genes that actually do exist most of them at this time we did not know where they are - we still don't know where they were but we know more.
And most people do not work at this level it is still too far apart. But it is starting to be interesting.
Now we are in here, there you can see that there is a lot of As Cs Gs and Ts. And this is just a tiny, tiny fraction of a genome we are quite always to get to it. Here we go! Here we find some stuff there where we sort of know what it does. And this is the gene itself- the blue parts.
Here is a very special area, right here you can see all genes are coming up - this is really the heart of the immune system right here this is when people get AIDS that is the part that is broken and when you fight up a cold this is because of this part. So what my program did, was it is like when someone has taken this human genome and ripped it all into a lot of pieces -you know- in almost a million of pieces what my program did, was to try as best as possible to titsh it back together into one piece.
10:16:47
Clinton
It will revolutionize diagnosis, prevention and treatment of most if not all human diseases.
In coming years doctors increasingly will be able to cure diseases like Alzheimer, parkinsons, diabetes and cancer by attacking their genetic roots.
10:17:02
Jim Kent:
There were a lot of similarities between the moon shot and the genome project, there was this race instead of in-between the USSR and the USA it was really between private industry and public industry and then is the moon shot, they went up there and they developed all the technology to get there and then once they got there they planted a flag and then they came home. And- you know- that is a good thing and we certainly- it was good although the industry they developed it a lot of microelectronics the intregrated circles came out of there. But the genome is sort of like going outside of the space just touching down and then coming home though we go in the inside we are going inside our cells in a very fundamental way and build a colony there, there is a thousand scientists are more actively looking there, doing, continuing doing research and built it on top of it.
10:18:10
Craig Venter:
We are lying a new foundation for basic science in the world. This is not an end point this is a beginning, it's the beginning of a new age of discovery we are just like the colon cancer gene, we are the researchers that come to us in five minutes find a gene instead of spending years looking forward to conventional methods that's gonna happen 40 and 50 thousand times in move in or understanding human physiology and medicine forward faster than it has ever been possible.
10:18:48
Commentary 5:
Craig Venter worked on the government-funded Human Genome Project until 1998, and then founded the enterprise "Celera Genomics", with $ 300 million of private venture capital.
It became evident during the course of the decoding that localising the genes on the DNA still gave no clue as to their function.
In the meantime, it has become clear to many scientists that the old premise about a single gene being responsible for a certain disease is no longer valid.
A gene observed isolated is insignificant, since it is always part of a network. Yet private industry has to redeem its investments and continues to place its hopes on the development of new medications.
10:19:27
Craig Venter:
Well, if a person desire with cancer in this information leads to a treatment of cancer then that's unlimited value. We don't measure the value in money this is gonna change the world on medicine.
So I think everybody as they understand their own genetic code going forward will drive immense value from it- it's like any knowledge how do you value a knowledge it's a - you can't go forward without it in an intelligent society.
10:19:59
Jim Kent:
Well, lets see there is a lot of different stuff we can do with it. In some cases medically we find families of people that are suffering from a genetic disease very often we can trace it to a very specific part and we are not at the time to fix that genes this very often gives a hint what treatments maybe available we are kids perceiving and relatively fast so I think at one day we will be able to go in there and actually fix a genome as well as read it. But in some ways I am not so much in a rush, because I want to understand it first before I start chancing it, you know, I think that's a really good idea. Maybe it's just me.
10:20:44
Andrew Kimbrell:
The pants of the last years go to the whole - one of the disturbing things I see over 20 years working on human genetics and issues and biologic issue is the believe in the miracle cure. You know, first there was foetal tissue, we spent 100 of millions of dollars in this and we cured nobody and many patients where horribly injured by these foetal implants and uncontrolled motions and they stopped almost all this experiments and then there was gene therapy. A miracle cure said the New York Times "Please don't stop it, this is wonderful!" again now billions of dollars spend in this country no one is cured we now have many deaths 37 deaths a thousand serious adverse reactions were toured investigating now finally and then in France we have two young children who developed a new form of leukaemia now they are talking about stem cell research this miracle cure desure that is a idea we can cure cancer and all this diseases by some magic bullet. This is behind a lot of the energy and it's not only naive it's dangerous.
10:21:42
Bill McKibben:
You don't need to understand every glass little detail of what `s happening- what you need to know is that scientists some scientists want to change human DNA in such a way that the baby that results will be different from what otherwise would have happened indeed those changes will pass on to generation after generation after generation. Scientists some of them invision in Francis Crick and James Watson in sort of father the DNA revolution.
In visions of world in which he says will be no more stupid people, there will be no more ugly babies and there will be no more shy people he says we should engineer people to make they are cold fish as he puts it in a future. This is a project that you don't have to assign you need to win the noble price to know whether that's a good idea or not.
10:23:17
Nurse Spermbank:
This is one of the donor rooms where the spesment is produced. The donors are given magazines and the spasement is produced by masturbation.
10:23:30
Bentley Glass:
Well, the old idea was simply to breed from the best individuals but this is always based on their pheno types of genes we know of and not on their real geno types, the genes that are there underneath.
And what we will know in the future the develop ways of knowing the totality of the genes in an individual and when there are very harmful genes that can be corrected in the body we can also correct them in the reproductive cells.
10:24:10
Spermbank:
What colour of the eyes do you prefer? Colour of the hair? Black. Great. Complexion? Do you want faire or medium olive.. Height? 170- ok.
10:24:33
Bill McKibben:
Parents will be able to go into the clinic and tweak the emotional make up of their phetus choosing some place of a spectrum from Mother Theresa to General Patton or something along this line. And for some it sounds nice to able to design your child but when that child grows up when that child reaches 16 or something and begin sort of the process beginning to find out who they are at some level they will never be able to complete their very human job they'll never know that the calm or the happiness what ever their feeling is quite theirs or this product of this sort of co-operate thing inserted in there when they were small nest of cells.
10:25:27
Nurse:
Sometimes the husband for example or wife is artistically incline they are enjoying music so for other characteristics they might wanna donor whose more artistic then business minded.
10:25:42
Bill McKibben:
In one way of kind of thinking about this is to imagine yourself. You are a young couple - hey you want your first child you hit down to the designer baby clinic with your Visa card and you max out your Visa card- you know you spend all your money to get the best upgrades that you can. Extra IQ points and better temperament and what ever. Well, 5 years later you are ready for your second child as you go back to the clinic. What's 5 years in technology- a lot of things are happening in 5 years of technology time- this time the same amount of money buys you twice as many IQ points and 100 other little upgrades - what is making, your first child is now sort of Windows `95 - this conversion of people into products is something we shouldn't enter too lightly just because we have the idea that it might be nice to have a improved child I think in a long line it wouldn't be nice at all.
Not for the child, not for the society the challenge is going to beat it.
10:26:54
Bentley Glass:
Well, I think the old brains were mainly that you could increase the number of persons in the population with genius or diminish the number of persons with particular disorders and we would like to have more individuals with high level qualifications of different kinds to serve society.
10:27:30
Andrew Kimbrell:
The idea behind much of the human genetics treatment is really eugenics. This is something that started at the time of Charles Darwin when the ideas that we humans are just hopelessly flood. And that we can get rid of this floods through manipulation where our chemistry or manipulation of our genetics so what we see now is a new eugenics. But unlike the old eugenics at Hitler which were based on people sculls and based on their ethnic background and they have been totally discredited. This eugenics is much more dangerous. Cause it is based on what people is sound science. There are scientists out there who think there is a criminal gene , who think there is a homosexual gene, who think there is a gene for shinance, a gene for depression he is volving front page stories a gene for alcoholism they actually believe in this very reductionism view and they believe that the way to solve these issues, solve crime, solve the diction, solve our social problems is through genetic manipulation. It's the new eugenics but unfortunately and very dangerously this new eugenics has behind it the veneer of good science that makes it much more dangerous than the eugenics of the past.
10:28:47
Film German:
We only preserved worthless life but even let it reproduce. The offspring of these ill people looked like this. The prevention of hereditary disease is a moral imperative. It is charity put into practise and manifests the greatest respect for the God- given laws of nature. Whoever hinders the spread of weeds, cultivates the useful. It may be a consolation that most of these people no longer feel their misery and in the worst cases no longer experience lucid moments. If we re- institute the great law of nature selection by humane means now, then we are restoring reverence for the laws of the Creator.
10:29:34
Andrew Kimbrell:
The new eugenics in human biotechnology is also not like the political eugenics that we saw in Nazi Germany that we see with ethnic cleansing now. It's a commercial eugenics it's the reproduction of infertility saying: Don't you want the perfect child. You give us money we can do the pregenetic diagnoses to make sure your child is perfect. Don't you wanna make sure your child is not obese!? We can make sure that your child is not to grow to be an alcoholic. It's a new commercial eugenics which is every bit as dangerous as the political eugenics of the past but much more difficult to stop and much more difficult to identify. What we need to realise that it is the same idea behind it, behind it is the same idea. Which is the eugenic idea the perfection of men through biological manipulation it's the same idea just different actors. Just as dangerous as it was in the 30ies it is in this new century.
10:31:06
Commentary 6:
The "Human Genome Diversity Project" came into existence as an offshoot of the "Human Genome Project".
The basic idea was to gather genetic material worldwide from approximately 700 ethnic groups threatened with extinction.
The project initiators assume that these people, living in the most remote and isolated areas of the world, have not interbred with any other peoples.
Their genetic material would be very pure and unaltered and could provide them with a variety of information and knowledge.
Scientists are especially hoping for knowledge about the immune system in order to possibly find a cure for AIDS or cancer.
Staff members of local universities embarked on a worldwide project to collect blood, saliva and hair samples from these endangered groups of people.
They were usually accompanied by employees of large pharmaceutical groups who, under the pretext of conducting screening tests, took blood tests unsolicited and brought them to their laboratories.
10:32:06
Dr. Janelle Noble:
It's no plan really telling them we are HAL typing on their genes because they wouldn't understand what HAL is on the first place but I think in that much as they understand they are in fact they are giving their informed consent, and I think you know my idealistic side as a scientist this is for a greater good enventionally and they are contributing to men kind in general.
10:32: 29
Spanish Leonora Zalabata:
Consiramos que no tengo obligation di contribuirli a l humanidad y mucho menos a la gente que loh an enganjado nuestras proprio recursos, nuestra propria forma de ser y de pensar.
We feel under no obligation to serve mankind. And certainly not those people who plundered our mineral resources and negativelyinfluenced our way of life and thinking.
10:32:43
Alejandro Argumedo:
The Human Genome Diversity Project was a named as the vampire project because they wanted the blood of indigenous people literally; they were like vampires flying all over around the world to suck the blood very fast and go back and put in and store it somewhere else. So they can digest it later as money.
10:33:15
Commentary 7:
The protest against the taking of blood samples without the explicit permission of those concerned, along with the possible later patenting of the genes, have fuelled growing resistance among indigenous peoples around the world.
The representatives and spokesmen of these groups on the verge of extinction are defending the potential value of their genes at the United Nations in Geneva. In the end, the determined cell lines could become an extremely useful component in genetic research.
10:33:58
Spanish Lazaro Paro:
Sabemos que e l’Amazonia entraron antropologos americanos y europeas para sacar la sangre humana de los pueblos indigenes in forma secreta y sin conoscimento de las communidades indigenes.
Y decir: Las communidades indigenes fueron enganjadas por los antropologos y los representantes multinacionales para vender su sangre es una gran preocupacion para las comunidades indigenes.
We know that American and European anthropologists have penetrated into the Amazon to take blood samples from endangered peoples, furtively and without informing the populance. This means, these people were deceived by the anthropologists, who then sold the blood to multinational corporations. This causes grave concern among the endangered peoples.
10:34:37
Vicky Tauli- Corpuz:
You know some people say it's really a form of colonialism. It's like colonising the last frontiers of what people have what is really left for many indigenous people are our genetic materials in our communities and of course our cells and our bodies and what they are trying to do now is trying to gather those genetic materials in our bodies and to use this for commercial purposes and without our permission and without our knowledge.
10:35:10
Alejandro Argumedo:
Life is sacred for all indigenous people. That's not just a philosophical statement. We sorely believe that our genealogy, our genes, do not belong to us. They belong to our ancestors and they will belong to our future to my children and to the children of my children, to the unborn. I can not claim ownership with because that came from my parents and that came from my past so this continuum of life is very important and defines our identity.
10:35:54
Vicky Tauli- Corpuz:
And in the moment you look at us just as parents of a gene sequence there is as genetic material they are not really respecting the way we regard life you know as a brand as a whole you know and I think this Genome Diversity Project is really what we can see what are the problems what we can see modern technology and there will be a very capitalistic way of thinking and relating to people.
10:36:33
Spanish Aresio Valiente:
Pero hay algunos elementos o cosas de la cultura indigena que nosotros estamos dispuesto a compartir, pero eso sí rispettando nuestra identitá cultural y respettando nuestros valores espirituales que tengan a estas cosas. Entonces no solamente los valores economicos si no estan como pueblos indigenas que tiene su propria cosmovida que tiene su propria valores o de vere l mundo.
There are some things in the cultures of endangered peoples that we are thoroughly prepared to share. But only if we are respected in every way, not only for our material value but also for our world view and our way seeing things.
10:37:00
Alejandro Argumedo:
The appropriation of Human genetic materials of indigenous people is a pandemic right now.
One case that we are following up is the case of lato bacillus - so called lacto bacillus Reuters which is bateria that was taken out of the mammalian glands of women in Couscou Peru, where I come from. And there is a company in Sweden that makes this lacto bacillus Reuters yoghurt it's very popular I think. Of course they are making millions of dollars. The woman in Peru doesn't know that part of her body belongs to a company in Sweden and they are making money and neither the government, neither the ethical bodies that should be looking into this, because actually this is sort of outright robbery. If you go to the homepage of this company it is so outrageous because the first thing you find is Machu Picchu and it says, from the purest place in the world comes the purest yoghurt. That's the kind of people that are after our genes.
10: 39:34
Commentary 8:
In Western industrial nations, too, the pharmaceutical industry is searching for groups of people living in relative isolation. The Icelanders are a prime example. Iceland is a windfall for the pharmaceuticals industry because for hundreds of years family trees have been meticulously compiled.
One single large data base is now to be set up comprising the blood tests for the DNA analysis of every Icelander as well as the entire patient data recorded by the public health system.
10:40:24
Sigudur Gundmunsson:
The Icelandic population for such studies is possibly more valuable or more amenable to such study than many others because of the closeness of the population of the relative homogeneity of the genetic pool in this country. Because of the fact that we have been here basically untouched for 11 hundred years I can mention of course we have a good patient records here that date back more than a century some of them we have a tradition of gathering information in data bases and some of them also date back a century. So the population is relatively well educated as well and follow up is easy because of the smallness of the population it is easy to find people.
10: 41:24
Commentary 9:
The company DeCode Genetics was founded by private investors to set up and evaluate this data base.
In 1998 Kari Stefanson, a Harvard professor born in Iceland, promised that his company would be able to ascertain 12 complex diseases per year.
To identify the genes responsible for certain diseases, the Swiss company HofmanLa Roche pledged $200 million – albeit on condition that the data be delivered first.
10:41:57
Kari Stefansson:
What we is it what we are doing when we are starting the genetic with human disease. The first thing that we do is to seek co-operation among people who have a disease and their families and their hope that this patients and their families and the research is that eventually someone will develop better methods to diagnose and treat the disease. Our possibility our probability that we will be able to do so is dependant on our ability to protect intellectual property because it takes about 500 Mio $ to take the basic biological discovery and turn it into a drug.
10: 42:38
Commentary 10:
Kari Stefanson persuaded the government to ratify a law permitting the personal medical records of every Icelander to be sold to a private enterprise, namely DeCode Genetics.
The bill was drawn up by his company’s lawyers.
DeCode intended to acquire the licence for 12 years to record and commercially exploit the genetic make-up of the 270,000 Icelanders. The deal worth millions was passed into law with 37 votes in favour and 20 against.
10:43:10
Einar Arnasson:
It is difficult to say what the government was - why the government went along with this- they pushed the law on very rapidly and very secretly also. It is clear that the government had the bill that was drawn up by DeCode genetics in the fall- in the summer of 1997- and the government kept it a secret until April of 1998. So it was a very secret thing- it was very strange you would keep such a thing that you claim than claim is really going to revolutionise medicine and so on that why is it such a secret?
10: 44:05
Commentary 11:
Professor Einar Arnason is chairman of the Manvernd Organisation which stands for human rights. It evolved out of opposition to this law.
Many citizens oppose the transfer of data and almost two-thirds of the physicians refuse to reveal their patients’ data for use by a private enterprise.
10:44:24
Petur Hauksson:
My patients were concerned, my patients were worried, I am a psychiatrist and my patients talked about this they were actually shocked that their medical records would be accessed by some one they didn't know. And they were shocked that the government had given this permission to someone without their consent.
10:44:47
Einar Arnasson:
If this database really started, what I think will happen is that the relationship will change, people will ask the doctors not to write down what goes on in relationship and the doctors will comply. And when we are in that kind of situation when the doctors are then making either no report or making incorrect reports into the database then the information becomes less than useful- it become a very bad information I think.
10:45:24
Johann Tomasson:
My biggest reaction was stopping using diagnoses. So since 1998 I never put down diagnoses on people unless I had to do it because of insurance and things like that but for an ordinary encountering in my office I use no diagnoses I just write in a text and then use medical advice as a covering diagnose.
10:45:56
Petur Hauksson:
That's how the pharmaceutical industry has gotten what it wanted all the time, getting access to patients. The doctors get paid for this access, the doctors who obtain this blood and convinced the patients to participate. Some of them get paid very well, that's not disclosed to the patients, they are not told who is behind this and who pays for it and who benefits from this. It came as a big surprise to us that the pharmaceutical giant HofmanLaRoche was the largest shareholder in DeCode.
10:46:42
OFF: Petur Hauksson
In this country we have a tradition of genetic research before DeCode. We had excellent genetic research and we still have. And that's mostly because we have this great human resource, people who are willing to participate because they trust their doctors, they trust the scientists. They even trust the government and it's very easy in a small community like this to follow up patients and to continue with research.
10:47:16
S. Arnsdöttir:
I have had MS for almost 38 years and through that time I participated in many, many researches. And it is always you know that your doctor asked you to participate and you do it. And you do not have a second thought about it.
Off: And it has always been very clear that the doctor and I were on the same side. But now there is a company who is a private company who is making a commodity out of the information about me - I don't want that. I would feel much better if these informations were in an academic care.
10:48:08
Petur Hauksson:
We saw a new gene has been found for MS with this huge headlines and People thought that we soon would see a cure for the disease and..... But when we read the small print you see that the gene has not been found, it has been located, you found a hystec where the needle is, but not the needle. Well, we know a lot of diseases where a gene has been found and than described 15 years ago, but still there is no drug. But we don't see that in the headlines and people are not told about that.
10:49:03
Petur Hauksson:
They were convinced that something good would come out of this very soon. And new medicine would be discovered, people they read the headlines of the papers and it say that a new gene had been found yesterday and probably a new drug would be discovered soon, so they are still knocking at the door in the hospital and asking when will I get this new medicine for my son he is still ill- so people really believe that.
10:49:53
S. Arnsdöttir:
My concern was that there would be too many informations about a person in one place that could be very dangerous. And it could be very harmful for my relatives, my son, and my nieces and nephews to have this MS patient on a file there. And this is something that has never been done before and they stated that their future costumers to this database would be the insurance companies and pharmaceutical company and they were actually making a commodity out of the blood and the information. This was something new; this is something scary I just didn't want to be part of this.
10:51:34
Andrew Kimbrell:
One of the most frightening things about what we were seeing in the genetic revolution here in the United States for me in human genetics is the use of genetic material for discriminate against people. We have now identified hundreds of cases where people have been denied jobs, denied insurance because of their genetic make up. You know it is really extraordinary because I think many of us for a while said Jesus it must be horribly to be disabled to walk into a job with some disability that they can see. You know what, we are all in a learn, we are learning that we are all disables. Everyone of has some faulty genes, some mistake they would call it in their genetic make up and so each of us know that a genetic information becomes public each of us faces a problem with jobs potentially and with insurance and a number of other areas. So one of the most important things we need to do now is to make sure that this genetic information are available to people maybe for their health decisions it is not available for corporations, to employers, to schools, to insurance companies that they can discriminate against people - it is a central challenge that we have not yet met here in the United States. I am sorry to say.
10:53:11
Jim Kent:
I think- I guess that fundamentally I think we need understand the system before we start modifying it. And it's a delicate, delicate thing. It would be to modify someone and to cure a disease a common genetic disease where you have sort of one gene that is broken, and over there the parent have one gene that's right that maybe doesn't take a lot of thinking you know. I have confidence with that but if you start thinking oh now we are going to improve humans, I think our chances of actually improving humans are actually very small at this point and it gets into but eventually the techniques will work so that you know you can imagine the day right now. If you- you know I have a child with my wife and it's like of sort nature takes our two genomes and just shuffles them together at random. And you can imagine that there will come a day when we maybe shuffle together but not necessarily at random maybe they can do it so that my children don't get my allergies they don't get -you know- so you sort can pick and choose which parts between them and that is something - you know- well have to think of very long and hard about. Because- I guess my main concern is that - you know - nature experiments with all of us and nature is really not a very good experimenter in a lot of ways and you know- the nature experiments with by mutation and don't know the chance of a cosmic ray hitting my genome and improving it is about the same chance for me going out to my car with a hammer wracking it and improving it, it will happen hold on a second! Hello!?
10:55:15
Andrew Kimbrell:
One of the mistakes that some of the critics of human genetics make is that they give to much credit to biotechnology industry and the geneticists. What will we do if we have a nation of Michael Jordans we all gonna be Michael Jordan, what will you do if everybody is Einstein, only those who can afford it can be Einstein and the poor one would be able to be Einstein. They are not able to do this, they have never shown any ability to what `s or ever actually change behaviour, thought process through genetic engineering. I am not concerned with their successes, I am concerned how much damage they can do with their failture. It is thought of a field how much damage they can do to the human genetic integrity while they try their experiments how much damage they can do to our crops to biological pollution how many species they gonna make extinct to their fish and animal experiments its their failures I have no - I don't think they gonna be successful at all- I am not concerned about that - I am concerned about how much destruction they gonna do because of their very redutionist view of life how to stop that destruction they gonna cause and how to stop that destruction - that is my concern about it.
10:56:21
Bill McKibben:
I think that people don't realise how close these technologies are, how quickly they can come, and I think people feel intimidated by the science involved and I think people honestly do not quite know what they think, because on the one hand it's very this good consumers thinking it is sort of seductive and on the other hand people feel in their gut a kind of revolution in sort of notion that this isn't what we wonna be doing.
And I think it is felt most strongly by people thinking it is about their own children asking themselves if they really would have wanted to change them into products to sit down and check off a list of treats and characteristics that they wanted in this child. I think if we can make ourselves begin to approach these questions in those very personal ways As well As the very political ways then we will probably come to the right conclusions. But it gonna be the biggest tests that our democracies has ever faced it won't be easy to reign in these technologies there are people who think they are inevitable their development I agree with that but I think they are inevitable if we don't do everything we can to really talk with each other to really engage in that kind of serious democratic discussion.
- END -
Eduardo Kac:
We have here this genie bottle and at the bottom of the bottle we have synthetic DNA that comes from genesis bacteria which means that this white powder here is the actual genesis DNA and the other element of this sculpture is this three- dimensional form which is another part of the sculpture that is the genesis protein cast in gold and this protein form was created directly from this genesis DNA so the DNA results in this three- dimensional protein form. And together they represent the two fetish items of the genetic world, of the biotech world, the gene and the protein, which are here functioning as a commentary on the conmodification of life. In fact that the most important elements of life have been transformed in objects of commerce.
10:01:58
Jim Kent:
I like to think of the human genome in the context of the whole earth – here we have ice caps, its got some continents, like Africa, so where we all came from. And Europe.
And on this world there is a lot of things the one thing is there is about 3 billion human beings and about 6 billions actually. That's quite a bit of us. And how we work- who knows really how we work. They kind to think with their brains that much is pretty clear. But we need are better cells a lot of cells actually more cells then we are humans, there is about a hundred trillion cells. And a cell is actually a very complicated thing is has little things on its surface that are certainly like the eyes and the ears for the cell and then it can make things and it put things out. This is wonderful. Pathway and the sense of things and alters it in the environment. But in a way the brain of the cell is in the nucleus and the nucleus is where the DNA is. And this is more than anything- where the cell mixes decisions and decides how to grow and which way to grow. And so the DNA - the DNA is a sort of nice bio stereo case of a monocule. It looks sort of like this when we do it.
10:03:45
Commentary1:
In the year 2000 history was written here at the University of Santa Cruz in California.
Since the beginning of the 90s thousands of scientists worldwide had been collaborating on a joint, large-scale project, the "Human Genome Project”, to determine the number and position of the genes on the DNA.
A decisive role in decoding the human genome was played by the scientist Jim Kent.
10:04:16
Jim Kent:
I guess these days, the human genome it seems very big and in some ways it is very big. But at the same time actually Patrick was the first one who fitted it on to one CD-ROM. So it is really no bigger than a video game so it is not like it was built by hand and it says where this part does this and you know looking at it you couldn't figure out what this is. You know it looks like complete gibberage and so these computers are largely involved with trying to figure out what it does what part of your genome is responsible for your blue eyes what is responsible for your beard or your smell it turns out actually that quite a lot is developed to smell, you have maybe 5% of your genome is to smell good.
Let's go outside I`ll show you some of the redwoods.
10:05:22
Patrick:
In case you are interested this is why one of this machines looks like on the inside. Now, the great thing about it, is that it is really simple it is just a box with a motherboard - it's just like any other computer really you can go to any computer store and buy this parts. And you can plug
a monitor in here or you can plug a keyboard in here if you want to, we usually don't plug anything into them - but...
10:05:52
Jim Kent:
It is a multidiversal machine it can play video games and can assemble the human genome either one.
10:06:02
Patrick:
And, I would say we use them for both but we don't.
10:06:09
Bill Clinton:
Today we are learning the language in which god created life. We are gaining every more all more for the complexity, the beauty, the wonder of gods most divine and sacred gift.
10:06:45
Jim Kent:
DNA is a really incredible chemical you have probably seen this as a sort of double helix in the way that it is and it is very, very long most chemicals are so small you couldn't possibly see them. The DNA is actually if you unlounge your DNA it is about this long. Just one molecule. And on it is sort of shaped like a spiral staircase and each step on the staircase is one of four letters either A C G or T. And all together there is 3 billions steps on the staircase and the sequencing project is that to read each and every step and to know whether all of them are. And it has sorts of these pairs of basis. And I guess Watson and Crick discovered this amazing pretty proud of themselves of good reason they felt it was kind of the secret of life at the lowest level.
10: 07:57
Commentary 2:
In 1953 the scientists James Watson and Francis Crick discovered the structure of the DNA in the form of a double helix, and were awarded the Nobel Prize for this.
Almost 50 years later a dramatic race began between private enterprise and public research institutes to decode the human genome.
Private venture capitalists wanted to patent the genes and sell their know-how to biotechnological companies. However, the government-funded "Human Genome Project” published the data daily on the Internet to prevent patenting.
Jim Kent won the race single-handedly by writing a software programme in only four weeks. With the help of this tool the sequencing of the human genome could be completed much more quickly than planned.
With his help the public project was 3 days faster than the private competitor.
10:08:52
Craig Venter, his counterpart in private enterprise, had the gene sequences discovered by him patented to secure for himself the exclusive rights to manipulate human genes. Suddenly, the primary motive in genetic research was no longer scientific progress or curing diseases but rather to make enormously huge profits.
10:09:18
Craig Venter:
Genomics not necessarily genetics and there is a difference will be the major driving force on the economy of the whole world. Not just in terms of human disease but in terms of plants, bacteria, the use of bacteria, to clean up the environment, the use of bacteria to synthesise chemicals, the use of genes and organisms as whole new sources of energy.
10:09:44
Andrew Kimbrell:
One of the leading proponsances that Craig Venter who was working for the National Institute of Health our tax paid money and then moved over to private sector where all our tax paid dollars research and decide the use of patent thousands of human genes and putting a number of brain genes and this began a gold rush to patent human genetic material and when I see thousands and thousands of genes that had been patented.
10:10:13
Commentary 3:
As a lawyer, Andrew Kimbrell has dedicated himself to ensuring the safety of our foods for over 20 years. He is increasingly preoccupied with the dangers of gene technology.
10:10:29
Commentary 4:
The fierce competition surrounding the human genome officially ended with the publication of both results in the same week. The government-sponsored "Human Genome Project” published its results in the magazine "Nature”, while Craig Venter, as the representative of private industry, published his results in the magazine "Science”.
Both parties were equally honoured at the White House.
10:11:01
Francis Collins
Das ist ein glücklicher Tag für die Welt, es ist uns gelungen den Bauplan des Menschen zu entschlüsseln, den bis heute nur Gott kennen konnte.
Das bedeutet auch, dass wir enorme Verantwortung haben, Historiker werden diesen Tag als Zeitenwende sehen.
10:11:26
Eduardo Kac:
I created this synthetic gene by taking a passage from the bible from the book of genesis in which god talks to men and says "Let men have the dominion over the fish of the sea over the fall of the air and over everything upon that moves on the earth". Basically god gives the men thought of total control over all life. I translated that to Morse-code that has dots and dashes and morse also represents the genesis of global communications as we have today with satellites and television and the internet and I went from the dot and dash of morse to the four elements of genetics C G T A. The result was a gene a sequence of C T G A it was then the genesis gene. A gene that encoded the biblical sentence.
And of course in this case my piece functions as a critical commentary because I don't see humans a the top of any hurrykey of life it's humans being part of continuity.
10:12:32
Eduardo Kac:
Artists have always worked with the technologies of their time. Now the difference is that we are not working with machines we are not working with ennord physical matter we are not working with a marble, plastic or electronic boards we are working with living beings this is very different. It is very different it is very important that an artist that works with biotechnology understands that if you going to create life and if you are going to modify life you can not treat this life as you treat a peace of equipment, or plastic, or some other material. There is an ethical dimension when we work with life in the context of art in particular that really must be emphasised.
10:13:21
Jim Kent:
So this the science of the journal Nature where we first published the article about the human genome. It was a huge article. I think it must been a hundred or a thousand scientists working on it. Here is another page and there is actually another more folder so this was a scientist centre folder. Now the thing is this if you look at this you need a magnify glass and you see the tiny prints and maybe a cell- you can't really tell what's going on. To really see it you need the web and that was really- I guess- one thing I am proud of my own work was with building than a browser so you could with the web it was actually like the work with a microscope where you can zoom in and you can see just this little tiny section and you can see all kinds of detail about it or you say, no I wanna see this whole section, see the whole thing and the scales are big or down just to the single, single base at a time and it's very useful for scientists. At the end what we were trying to do is to make a map a very, very detailed map of the human genome and you have a picture of the chromosome the human genome is made of 23 pairs of chromosomes and this is one pair this is actually the biggest pair chromosome one and then along the chromosomes we showed all the genes that we knew existed at the time. Actually these are probably only a third of the genes that actually do exist most of them at this time we did not know where they are - we still don't know where they were but we know more.
And most people do not work at this level it is still too far apart. But it is starting to be interesting.
Now we are in here, there you can see that there is a lot of As Cs Gs and Ts. And this is just a tiny, tiny fraction of a genome we are quite always to get to it. Here we go! Here we find some stuff there where we sort of know what it does. And this is the gene itself- the blue parts.
Here is a very special area, right here you can see all genes are coming up - this is really the heart of the immune system right here this is when people get AIDS that is the part that is broken and when you fight up a cold this is because of this part. So what my program did, was it is like when someone has taken this human genome and ripped it all into a lot of pieces -you know- in almost a million of pieces what my program did, was to try as best as possible to titsh it back together into one piece.
10:16:47
Clinton
It will revolutionize diagnosis, prevention and treatment of most if not all human diseases.
In coming years doctors increasingly will be able to cure diseases like Alzheimer, parkinsons, diabetes and cancer by attacking their genetic roots.
10:17:02
Jim Kent:
There were a lot of similarities between the moon shot and the genome project, there was this race instead of in-between the USSR and the USA it was really between private industry and public industry and then is the moon shot, they went up there and they developed all the technology to get there and then once they got there they planted a flag and then they came home. And- you know- that is a good thing and we certainly- it was good although the industry they developed it a lot of microelectronics the intregrated circles came out of there. But the genome is sort of like going outside of the space just touching down and then coming home though we go in the inside we are going inside our cells in a very fundamental way and build a colony there, there is a thousand scientists are more actively looking there, doing, continuing doing research and built it on top of it.
10:18:10
Craig Venter:
We are lying a new foundation for basic science in the world. This is not an end point this is a beginning, it's the beginning of a new age of discovery we are just like the colon cancer gene, we are the researchers that come to us in five minutes find a gene instead of spending years looking forward to conventional methods that's gonna happen 40 and 50 thousand times in move in or understanding human physiology and medicine forward faster than it has ever been possible.
10:18:48
Commentary 5:
Craig Venter worked on the government-funded Human Genome Project until 1998, and then founded the enterprise "Celera Genomics", with $ 300 million of private venture capital.
It became evident during the course of the decoding that localising the genes on the DNA still gave no clue as to their function.
In the meantime, it has become clear to many scientists that the old premise about a single gene being responsible for a certain disease is no longer valid.
A gene observed isolated is insignificant, since it is always part of a network. Yet private industry has to redeem its investments and continues to place its hopes on the development of new medications.
10:19:27
Craig Venter:
Well, if a person desire with cancer in this information leads to a treatment of cancer then that's unlimited value. We don't measure the value in money this is gonna change the world on medicine.
So I think everybody as they understand their own genetic code going forward will drive immense value from it- it's like any knowledge how do you value a knowledge it's a - you can't go forward without it in an intelligent society.
10:19:59
Jim Kent:
Well, lets see there is a lot of different stuff we can do with it. In some cases medically we find families of people that are suffering from a genetic disease very often we can trace it to a very specific part and we are not at the time to fix that genes this very often gives a hint what treatments maybe available we are kids perceiving and relatively fast so I think at one day we will be able to go in there and actually fix a genome as well as read it. But in some ways I am not so much in a rush, because I want to understand it first before I start chancing it, you know, I think that's a really good idea. Maybe it's just me.
10:20:44
Andrew Kimbrell:
The pants of the last years go to the whole - one of the disturbing things I see over 20 years working on human genetics and issues and biologic issue is the believe in the miracle cure. You know, first there was foetal tissue, we spent 100 of millions of dollars in this and we cured nobody and many patients where horribly injured by these foetal implants and uncontrolled motions and they stopped almost all this experiments and then there was gene therapy. A miracle cure said the New York Times "Please don't stop it, this is wonderful!" again now billions of dollars spend in this country no one is cured we now have many deaths 37 deaths a thousand serious adverse reactions were toured investigating now finally and then in France we have two young children who developed a new form of leukaemia now they are talking about stem cell research this miracle cure desure that is a idea we can cure cancer and all this diseases by some magic bullet. This is behind a lot of the energy and it's not only naive it's dangerous.
10:21:42
Bill McKibben:
You don't need to understand every glass little detail of what `s happening- what you need to know is that scientists some scientists want to change human DNA in such a way that the baby that results will be different from what otherwise would have happened indeed those changes will pass on to generation after generation after generation. Scientists some of them invision in Francis Crick and James Watson in sort of father the DNA revolution.
In visions of world in which he says will be no more stupid people, there will be no more ugly babies and there will be no more shy people he says we should engineer people to make they are cold fish as he puts it in a future. This is a project that you don't have to assign you need to win the noble price to know whether that's a good idea or not.
10:23:17
Nurse Spermbank:
This is one of the donor rooms where the spesment is produced. The donors are given magazines and the spasement is produced by masturbation.
10:23:30
Bentley Glass:
Well, the old idea was simply to breed from the best individuals but this is always based on their pheno types of genes we know of and not on their real geno types, the genes that are there underneath.
And what we will know in the future the develop ways of knowing the totality of the genes in an individual and when there are very harmful genes that can be corrected in the body we can also correct them in the reproductive cells.
10:24:10
Spermbank:
What colour of the eyes do you prefer? Colour of the hair? Black. Great. Complexion? Do you want faire or medium olive.. Height? 170- ok.
10:24:33
Bill McKibben:
Parents will be able to go into the clinic and tweak the emotional make up of their phetus choosing some place of a spectrum from Mother Theresa to General Patton or something along this line. And for some it sounds nice to able to design your child but when that child grows up when that child reaches 16 or something and begin sort of the process beginning to find out who they are at some level they will never be able to complete their very human job they'll never know that the calm or the happiness what ever their feeling is quite theirs or this product of this sort of co-operate thing inserted in there when they were small nest of cells.
10:25:27
Nurse:
Sometimes the husband for example or wife is artistically incline they are enjoying music so for other characteristics they might wanna donor whose more artistic then business minded.
10:25:42
Bill McKibben:
In one way of kind of thinking about this is to imagine yourself. You are a young couple - hey you want your first child you hit down to the designer baby clinic with your Visa card and you max out your Visa card- you know you spend all your money to get the best upgrades that you can. Extra IQ points and better temperament and what ever. Well, 5 years later you are ready for your second child as you go back to the clinic. What's 5 years in technology- a lot of things are happening in 5 years of technology time- this time the same amount of money buys you twice as many IQ points and 100 other little upgrades - what is making, your first child is now sort of Windows `95 - this conversion of people into products is something we shouldn't enter too lightly just because we have the idea that it might be nice to have a improved child I think in a long line it wouldn't be nice at all.
Not for the child, not for the society the challenge is going to beat it.
10:26:54
Bentley Glass:
Well, I think the old brains were mainly that you could increase the number of persons in the population with genius or diminish the number of persons with particular disorders and we would like to have more individuals with high level qualifications of different kinds to serve society.
10:27:30
Andrew Kimbrell:
The idea behind much of the human genetics treatment is really eugenics. This is something that started at the time of Charles Darwin when the ideas that we humans are just hopelessly flood. And that we can get rid of this floods through manipulation where our chemistry or manipulation of our genetics so what we see now is a new eugenics. But unlike the old eugenics at Hitler which were based on people sculls and based on their ethnic background and they have been totally discredited. This eugenics is much more dangerous. Cause it is based on what people is sound science. There are scientists out there who think there is a criminal gene , who think there is a homosexual gene, who think there is a gene for shinance, a gene for depression he is volving front page stories a gene for alcoholism they actually believe in this very reductionism view and they believe that the way to solve these issues, solve crime, solve the diction, solve our social problems is through genetic manipulation. It's the new eugenics but unfortunately and very dangerously this new eugenics has behind it the veneer of good science that makes it much more dangerous than the eugenics of the past.
10:28:47
Film German:
We only preserved worthless life but even let it reproduce. The offspring of these ill people looked like this. The prevention of hereditary disease is a moral imperative. It is charity put into practise and manifests the greatest respect for the God- given laws of nature. Whoever hinders the spread of weeds, cultivates the useful. It may be a consolation that most of these people no longer feel their misery and in the worst cases no longer experience lucid moments. If we re- institute the great law of nature selection by humane means now, then we are restoring reverence for the laws of the Creator.
10:29:34
Andrew Kimbrell:
The new eugenics in human biotechnology is also not like the political eugenics that we saw in Nazi Germany that we see with ethnic cleansing now. It's a commercial eugenics it's the reproduction of infertility saying: Don't you want the perfect child. You give us money we can do the pregenetic diagnoses to make sure your child is perfect. Don't you wanna make sure your child is not obese!? We can make sure that your child is not to grow to be an alcoholic. It's a new commercial eugenics which is every bit as dangerous as the political eugenics of the past but much more difficult to stop and much more difficult to identify. What we need to realise that it is the same idea behind it, behind it is the same idea. Which is the eugenic idea the perfection of men through biological manipulation it's the same idea just different actors. Just as dangerous as it was in the 30ies it is in this new century.
10:31:06
Commentary 6:
The "Human Genome Diversity Project" came into existence as an offshoot of the "Human Genome Project".
The basic idea was to gather genetic material worldwide from approximately 700 ethnic groups threatened with extinction.
The project initiators assume that these people, living in the most remote and isolated areas of the world, have not interbred with any other peoples.
Their genetic material would be very pure and unaltered and could provide them with a variety of information and knowledge.
Scientists are especially hoping for knowledge about the immune system in order to possibly find a cure for AIDS or cancer.
Staff members of local universities embarked on a worldwide project to collect blood, saliva and hair samples from these endangered groups of people.
They were usually accompanied by employees of large pharmaceutical groups who, under the pretext of conducting screening tests, took blood tests unsolicited and brought them to their laboratories.
10:32:06
Dr. Janelle Noble:
It's no plan really telling them we are HAL typing on their genes because they wouldn't understand what HAL is on the first place but I think in that much as they understand they are in fact they are giving their informed consent, and I think you know my idealistic side as a scientist this is for a greater good enventionally and they are contributing to men kind in general.
10:32: 29
Spanish Leonora Zalabata:
Consiramos que no tengo obligation di contribuirli a l humanidad y mucho menos a la gente que loh an enganjado nuestras proprio recursos, nuestra propria forma de ser y de pensar.
We feel under no obligation to serve mankind. And certainly not those people who plundered our mineral resources and negativelyinfluenced our way of life and thinking.
10:32:43
Alejandro Argumedo:
The Human Genome Diversity Project was a named as the vampire project because they wanted the blood of indigenous people literally; they were like vampires flying all over around the world to suck the blood very fast and go back and put in and store it somewhere else. So they can digest it later as money.
10:33:15
Commentary 7:
The protest against the taking of blood samples without the explicit permission of those concerned, along with the possible later patenting of the genes, have fuelled growing resistance among indigenous peoples around the world.
The representatives and spokesmen of these groups on the verge of extinction are defending the potential value of their genes at the United Nations in Geneva. In the end, the determined cell lines could become an extremely useful component in genetic research.
10:33:58
Spanish Lazaro Paro:
Sabemos que e l’Amazonia entraron antropologos americanos y europeas para sacar la sangre humana de los pueblos indigenes in forma secreta y sin conoscimento de las communidades indigenes.
Y decir: Las communidades indigenes fueron enganjadas por los antropologos y los representantes multinacionales para vender su sangre es una gran preocupacion para las comunidades indigenes.
We know that American and European anthropologists have penetrated into the Amazon to take blood samples from endangered peoples, furtively and without informing the populance. This means, these people were deceived by the anthropologists, who then sold the blood to multinational corporations. This causes grave concern among the endangered peoples.
10:34:37
Vicky Tauli- Corpuz:
You know some people say it's really a form of colonialism. It's like colonising the last frontiers of what people have what is really left for many indigenous people are our genetic materials in our communities and of course our cells and our bodies and what they are trying to do now is trying to gather those genetic materials in our bodies and to use this for commercial purposes and without our permission and without our knowledge.
10:35:10
Alejandro Argumedo:
Life is sacred for all indigenous people. That's not just a philosophical statement. We sorely believe that our genealogy, our genes, do not belong to us. They belong to our ancestors and they will belong to our future to my children and to the children of my children, to the unborn. I can not claim ownership with because that came from my parents and that came from my past so this continuum of life is very important and defines our identity.
10:35:54
Vicky Tauli- Corpuz:
And in the moment you look at us just as parents of a gene sequence there is as genetic material they are not really respecting the way we regard life you know as a brand as a whole you know and I think this Genome Diversity Project is really what we can see what are the problems what we can see modern technology and there will be a very capitalistic way of thinking and relating to people.
10:36:33
Spanish Aresio Valiente:
Pero hay algunos elementos o cosas de la cultura indigena que nosotros estamos dispuesto a compartir, pero eso sí rispettando nuestra identitá cultural y respettando nuestros valores espirituales que tengan a estas cosas. Entonces no solamente los valores economicos si no estan como pueblos indigenas que tiene su propria cosmovida que tiene su propria valores o de vere l mundo.
There are some things in the cultures of endangered peoples that we are thoroughly prepared to share. But only if we are respected in every way, not only for our material value but also for our world view and our way seeing things.
10:37:00
Alejandro Argumedo:
The appropriation of Human genetic materials of indigenous people is a pandemic right now.
One case that we are following up is the case of lato bacillus - so called lacto bacillus Reuters which is bateria that was taken out of the mammalian glands of women in Couscou Peru, where I come from. And there is a company in Sweden that makes this lacto bacillus Reuters yoghurt it's very popular I think. Of course they are making millions of dollars. The woman in Peru doesn't know that part of her body belongs to a company in Sweden and they are making money and neither the government, neither the ethical bodies that should be looking into this, because actually this is sort of outright robbery. If you go to the homepage of this company it is so outrageous because the first thing you find is Machu Picchu and it says, from the purest place in the world comes the purest yoghurt. That's the kind of people that are after our genes.
10: 39:34
Commentary 8:
In Western industrial nations, too, the pharmaceutical industry is searching for groups of people living in relative isolation. The Icelanders are a prime example. Iceland is a windfall for the pharmaceuticals industry because for hundreds of years family trees have been meticulously compiled.
One single large data base is now to be set up comprising the blood tests for the DNA analysis of every Icelander as well as the entire patient data recorded by the public health system.
10:40:24
Sigudur Gundmunsson:
The Icelandic population for such studies is possibly more valuable or more amenable to such study than many others because of the closeness of the population of the relative homogeneity of the genetic pool in this country. Because of the fact that we have been here basically untouched for 11 hundred years I can mention of course we have a good patient records here that date back more than a century some of them we have a tradition of gathering information in data bases and some of them also date back a century. So the population is relatively well educated as well and follow up is easy because of the smallness of the population it is easy to find people.
10: 41:24
Commentary 9:
The company DeCode Genetics was founded by private investors to set up and evaluate this data base.
In 1998 Kari Stefanson, a Harvard professor born in Iceland, promised that his company would be able to ascertain 12 complex diseases per year.
To identify the genes responsible for certain diseases, the Swiss company HofmanLa Roche pledged $200 million – albeit on condition that the data be delivered first.
10:41:57
Kari Stefansson:
What we is it what we are doing when we are starting the genetic with human disease. The first thing that we do is to seek co-operation among people who have a disease and their families and their hope that this patients and their families and the research is that eventually someone will develop better methods to diagnose and treat the disease. Our possibility our probability that we will be able to do so is dependant on our ability to protect intellectual property because it takes about 500 Mio $ to take the basic biological discovery and turn it into a drug.
10: 42:38
Commentary 10:
Kari Stefanson persuaded the government to ratify a law permitting the personal medical records of every Icelander to be sold to a private enterprise, namely DeCode Genetics.
The bill was drawn up by his company’s lawyers.
DeCode intended to acquire the licence for 12 years to record and commercially exploit the genetic make-up of the 270,000 Icelanders. The deal worth millions was passed into law with 37 votes in favour and 20 against.
10:43:10
Einar Arnasson:
It is difficult to say what the government was - why the government went along with this- they pushed the law on very rapidly and very secretly also. It is clear that the government had the bill that was drawn up by DeCode genetics in the fall- in the summer of 1997- and the government kept it a secret until April of 1998. So it was a very secret thing- it was very strange you would keep such a thing that you claim than claim is really going to revolutionise medicine and so on that why is it such a secret?
10: 44:05
Commentary 11:
Professor Einar Arnason is chairman of the Manvernd Organisation which stands for human rights. It evolved out of opposition to this law.
Many citizens oppose the transfer of data and almost two-thirds of the physicians refuse to reveal their patients’ data for use by a private enterprise.
10:44:24
Petur Hauksson:
My patients were concerned, my patients were worried, I am a psychiatrist and my patients talked about this they were actually shocked that their medical records would be accessed by some one they didn't know. And they were shocked that the government had given this permission to someone without their consent.
10:44:47
Einar Arnasson:
If this database really started, what I think will happen is that the relationship will change, people will ask the doctors not to write down what goes on in relationship and the doctors will comply. And when we are in that kind of situation when the doctors are then making either no report or making incorrect reports into the database then the information becomes less than useful- it become a very bad information I think.
10:45:24
Johann Tomasson:
My biggest reaction was stopping using diagnoses. So since 1998 I never put down diagnoses on people unless I had to do it because of insurance and things like that but for an ordinary encountering in my office I use no diagnoses I just write in a text and then use medical advice as a covering diagnose.
10:45:56
Petur Hauksson:
That's how the pharmaceutical industry has gotten what it wanted all the time, getting access to patients. The doctors get paid for this access, the doctors who obtain this blood and convinced the patients to participate. Some of them get paid very well, that's not disclosed to the patients, they are not told who is behind this and who pays for it and who benefits from this. It came as a big surprise to us that the pharmaceutical giant HofmanLaRoche was the largest shareholder in DeCode.
10:46:42
OFF: Petur Hauksson
In this country we have a tradition of genetic research before DeCode. We had excellent genetic research and we still have. And that's mostly because we have this great human resource, people who are willing to participate because they trust their doctors, they trust the scientists. They even trust the government and it's very easy in a small community like this to follow up patients and to continue with research.
10:47:16
S. Arnsdöttir:
I have had MS for almost 38 years and through that time I participated in many, many researches. And it is always you know that your doctor asked you to participate and you do it. And you do not have a second thought about it.
Off: And it has always been very clear that the doctor and I were on the same side. But now there is a company who is a private company who is making a commodity out of the information about me - I don't want that. I would feel much better if these informations were in an academic care.
10:48:08
Petur Hauksson:
We saw a new gene has been found for MS with this huge headlines and People thought that we soon would see a cure for the disease and..... But when we read the small print you see that the gene has not been found, it has been located, you found a hystec where the needle is, but not the needle. Well, we know a lot of diseases where a gene has been found and than described 15 years ago, but still there is no drug. But we don't see that in the headlines and people are not told about that.
10:49:03
Petur Hauksson:
They were convinced that something good would come out of this very soon. And new medicine would be discovered, people they read the headlines of the papers and it say that a new gene had been found yesterday and probably a new drug would be discovered soon, so they are still knocking at the door in the hospital and asking when will I get this new medicine for my son he is still ill- so people really believe that.
10:49:53
S. Arnsdöttir:
My concern was that there would be too many informations about a person in one place that could be very dangerous. And it could be very harmful for my relatives, my son, and my nieces and nephews to have this MS patient on a file there. And this is something that has never been done before and they stated that their future costumers to this database would be the insurance companies and pharmaceutical company and they were actually making a commodity out of the blood and the information. This was something new; this is something scary I just didn't want to be part of this.
10:51:34
Andrew Kimbrell:
One of the most frightening things about what we were seeing in the genetic revolution here in the United States for me in human genetics is the use of genetic material for discriminate against people. We have now identified hundreds of cases where people have been denied jobs, denied insurance because of their genetic make up. You know it is really extraordinary because I think many of us for a while said Jesus it must be horribly to be disabled to walk into a job with some disability that they can see. You know what, we are all in a learn, we are learning that we are all disables. Everyone of has some faulty genes, some mistake they would call it in their genetic make up and so each of us know that a genetic information becomes public each of us faces a problem with jobs potentially and with insurance and a number of other areas. So one of the most important things we need to do now is to make sure that this genetic information are available to people maybe for their health decisions it is not available for corporations, to employers, to schools, to insurance companies that they can discriminate against people - it is a central challenge that we have not yet met here in the United States. I am sorry to say.
10:53:11
Jim Kent:
I think- I guess that fundamentally I think we need understand the system before we start modifying it. And it's a delicate, delicate thing. It would be to modify someone and to cure a disease a common genetic disease where you have sort of one gene that is broken, and over there the parent have one gene that's right that maybe doesn't take a lot of thinking you know. I have confidence with that but if you start thinking oh now we are going to improve humans, I think our chances of actually improving humans are actually very small at this point and it gets into but eventually the techniques will work so that you know you can imagine the day right now. If you- you know I have a child with my wife and it's like of sort nature takes our two genomes and just shuffles them together at random. And you can imagine that there will come a day when we maybe shuffle together but not necessarily at random maybe they can do it so that my children don't get my allergies they don't get -you know- so you sort can pick and choose which parts between them and that is something - you know- well have to think of very long and hard about. Because- I guess my main concern is that - you know - nature experiments with all of us and nature is really not a very good experimenter in a lot of ways and you know- the nature experiments with by mutation and don't know the chance of a cosmic ray hitting my genome and improving it is about the same chance for me going out to my car with a hammer wracking it and improving it, it will happen hold on a second! Hello!?
10:55:15
Andrew Kimbrell:
One of the mistakes that some of the critics of human genetics make is that they give to much credit to biotechnology industry and the geneticists. What will we do if we have a nation of Michael Jordans we all gonna be Michael Jordan, what will you do if everybody is Einstein, only those who can afford it can be Einstein and the poor one would be able to be Einstein. They are not able to do this, they have never shown any ability to what `s or ever actually change behaviour, thought process through genetic engineering. I am not concerned with their successes, I am concerned how much damage they can do with their failture. It is thought of a field how much damage they can do to the human genetic integrity while they try their experiments how much damage they can do to our crops to biological pollution how many species they gonna make extinct to their fish and animal experiments its their failures I have no - I don't think they gonna be successful at all- I am not concerned about that - I am concerned about how much destruction they gonna do because of their very redutionist view of life how to stop that destruction they gonna cause and how to stop that destruction - that is my concern about it.
10:56:21
Bill McKibben:
I think that people don't realise how close these technologies are, how quickly they can come, and I think people feel intimidated by the science involved and I think people honestly do not quite know what they think, because on the one hand it's very this good consumers thinking it is sort of seductive and on the other hand people feel in their gut a kind of revolution in sort of notion that this isn't what we wonna be doing.
And I think it is felt most strongly by people thinking it is about their own children asking themselves if they really would have wanted to change them into products to sit down and check off a list of treats and characteristics that they wanted in this child. I think if we can make ourselves begin to approach these questions in those very personal ways As well As the very political ways then we will probably come to the right conclusions. But it gonna be the biggest tests that our democracies has ever faced it won't be easy to reign in these technologies there are people who think they are inevitable their development I agree with that but I think they are inevitable if we don't do everything we can to really talk with each other to really engage in that kind of serious democratic discussion.
- END -