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Wednesday, 9 February, 2000, 14:50 GMT
What price our genes?
The Icelandic Government has given a licence to a US-funded corporation to set up a genetic catalogue using the medical records on each and everyone of the country's 270,000 citizens.
For £8m, plus a share of future profits, a private company called deCode Genetics will have the power to exploit information that could lead to revolutionary new medical treatments. The catalogue will be kept on a single, computerised database, and access will be sold to foreign pharmaceutical companies.
The value of Iceland's 270,000 people is that they are very closely related to one another, meaning the genetic defects which cause disease can be easily pinpointed.
But will this project really help to advance medicine? What protection is there for really private details? What about choice? Does a government have the right to allow a company to make money out of genetic information?
Some Icelanders, including doctors and geneticists, object very strongly to being part of the database and say they will not co-operate. They are worried about issues to do with privacy and commercialisation, and they intend to make a challenge in the courts.
Yet the Iceland database could result in discoveries unobtainable in any other way. Is there a duty to assist medical research which could help alleviate suffering? What is wrong with people being paid for helping in this way?
No we shouldn't sell our genes. People really don't appreciate the power of genetic information. Now Iceland has sold their genes companies have the ability to work out what makes an Icelander different form say a German, and again from a Jew.
We have already seen in the South African truth trials that strains of Ebola have been crossed with Small pox to produce racially specific viruses, i.e. they only infect people with coloured skin. I find this very worrying, will the next arsenal of war be weapons based on destroying racial groups? No one country has the right to sell the rights to there genes. They belong to all the people of the world
Its perfectly ok for one to sell his/her own genes and should be left to one's own discretion whether or not he or she wants to sell.
Sam Lucic, Scotland, UK
This is NOT ethical and it cannot be covered by saying that it is done for medical research.
There is a wider issue lurking behind this action, and that is given a statistically significant study a person could be 'classed' against a 'normal' genetic code. The danger is this could be used as a numerical assessment of a person's class.
When does tracking down 'abnormal' genes and eliminating them become akin to ethnic cleansing? I can imagine it now, "Oh yes we have just taken delivery of a gene class AA1 baby. Cost a fortune mind you!"
Jon B, Sweden
I have a relative who suffers of schizophrenia, so I am not scared. On the contrary, I am so happy that now it will be possible to find a cure!!!
On the other hand, I am worried about the ethics of many scientists, but more with the ethics of private corporations. What are they willing to do with all that new knowledge without taking into account the safety and the wellbeing of people they despise all over the world?
For the record: Every citizen of Iceland has the right to opt out of database and a considerable number has already done so. deCODE proposes to construct a genomic map of the Icelandic people and to commercialise information contained in it to recap the enormous cost of the project (£130m). Already, such a deal has been inked with Hoffmann La Roche and as part of that deal, any drugs resulting from insights culled from the database will be free of charge for Icelanders. It's a bold initiative that never would have been undertaken within the confines of our cash-strapped public health care system.
Halli T, Iceland
Well I'm selling mine. They've got holes in the knees.
Paul Hicks, UK
Personally, I'd be happy to give my records over to a group of doctors who I will never meet and never know, but who may find a cure for my future children. All this talk of big brother and an affront to personal privacy would only make sense if these disclosures actually affected the privacy of an individual in a tangible sense. A doctor knowing that Mrs A. Magnusson's mother had a kidney problem is not going to rock the world.
Doug Ealey, UK
If the genetic data is used for genuine scientific research it is good. It is going to benefit all of us one day. However, there is an element of risk involved in handing over a nations entire genetic data to another country. Above all an individual has the right towards his or her own genetic make-up and the secrets behind it. You can't steal this from people and sell it. It is wrong if ordinary people were not told what the government was doing with their genetic data.
I think the main point in all this is about the right to privacy. If the government of your country has the right to profit from information about you without consent, where do they draw the line as to what rights you as an individual have? Will they start selling census information to advertising consultancies and private investigation firms?
Freda Peeple, UK
I am an organ donor, so I would have no objection if my genes were to be used in genuine non-profit research etc to benefit my fellow human being. However, if they were to be used to line the pockets of unscrupulous governments and greedy multi-nationals, as I suspect is the case in this instance, I would take measures to try and stop this happening.
I see nothing wrong with this whatsoever. I would happily give such information for free, especially if it were to help medicine and science. People should realise that having this information passed on is not going to affect them, unless that is, they are cured from some disease in years to come as a result of this. Genetics is a fascinating branch of science, and to me, whether cures can be found for diseases or not isn't the point. I simply want us to come to a clearer understanding of how the world and the human body work. Only good can come from this.
Tristan O'Dwyer, England
If I were Icelandic, I wouldn't object to the government flogging my genes as long as they gave me my £29.63 of the proceeds, and title to my share of future profits. Or, even better, they could hold a one-off lottery, winner gets 8 million quid!
Ed Bayley, USA
I very much look forward to a time when genetic information is not a commodity. Will Iceland share the information it might gain from privileged access to analysis of its own unique genetic pool?
William Collins, Ireland
Genetic information should not be for sale. The respect for human beings will diminish. We have seen the terrible consequences in Europe in the 1940ies when governments start to "think" it has the right to make decisions about racial hygiene. This should not be allowed to happen again. Ever.
Martin Frid, Sweden
This could easily lead to great medical benefits for many people. Since anybody who is concerned about the potential loss of privacy can opt-out, I think that the potential benefits easily outweigh the potential losses.
Ralph Volk, USA
Ever-progressing science and technology is and will be eroding social fabric, as we know it. The question is if we want to slow down that progress so the ethics and the social order can catch up with it. I think in some extreme cases like this one, we should.
Jacek Kucharewicz, USA
I don't think that the Icelandic people should sell their genes. A gene pool database - fine. It's just that genes are not a sellable commodity. Stop being so materialistic!
And you Europeans wonder why we Americans have been so fanatical about privacy and independence from government.
Geoff Sutton, USA
Big Brother strikes again, the individual has the right to sell their own genes the government does not. I notice that the Iceland government gets part of the profit but how much will be passed on to the individuals?
Richard T. Ketchum, USA
There is nothing outrageous in that decision. it is a decision to convert information into cash. may people will certainly argue for the benefits of possible cure in hereditary diseases. We may record the information for understanding but we should not enter genome manipulation because natural selection and evolution have been assigned that task, not god as many might argue. The evolution corrects the defects by the time always. You do not need assist it or intervene with it because the jungle will win at the end in any case.
Mikko Toivonen, Finland
If this is such a good idea then there must have been a great many Icelandic people in favour of it. Surely the Icelandic government could have set up some sort of opt-out programme for those not in favour?
Jean Pool, UK
It's very unlikely that any country outside Iceland will ever be asked to do this. Icelanders have genealogy as a national hobby, and many of them can trace their ancestry back to the tenth century. Since few of us can, such a database would be of much less use.
Jon Livesey, USA
With all the hereditary diseases that we have in the world this database sounds like a brilliant idea. I would be happy for my genes to form part of any UK database.
Mark Verth, UK
Absolutely not! By selling the genes of its people, the Icelandic government is playing God. It is violating the privacy of its people and is opening Pandora's box.
When you come down to it, DNA is little more than information. It's a deeply personal sort of information, however, as it is a blueprint for a living being. People should be able to sell their own genetic material or the information encoded in that material, but if they're smart they'll only do so for a good reason and on advantageous terms, with restrictions as to use on the part of the buyer. Under no circumstance should a government be able to sell a person's DNA without that person's permission and without some sort of compensation. And the buyer should be held accountable for any misuse of the genetic material as delineated in a legally binding contract. The being who is the original source of the DNA should always retain full ownership of his or her own DNA; if this information is bought or sold, it should be under specific terms, for limited use only.
C M Sanyk, USA
What the Icelandic government has done is nothing short of outrageous. They obviously did not have the permission of each and every citizen before they went ahead with this. However many medical advances they think they can make it is surely a step backwards to achieve results by force ?
Diana N Andrews, UK
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