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Monday, 26 June, 2000, 07:39 GMT 08:39 UK
Decoding Humanity: Who will really benefit?
![]() The first draft of the entire 3 billion letters that make up human DNA, the book of life, has been completed. It has been hailed as science's greatest ever achievement but how should this information be used?
Researchers promise exciting medical advances but unravelling the book of life also unleashes ethical concerns. Who should own this knowledge and how should it be used? Should the genes of life be patented? Should employers and insurance companies have access to your genetic blueprint? We have been taking your phone-calls and emails on the subject LIVE on BBC World Service Radio and BBC News Online.
Select a link below to watch or listen to Talking Point On Air
Your comments since the programme
Michael de Whalley, King's Lynn, England.
It all sounds incredible that science can advance so far in such a short space of time. I only hope that the new technologies will be used for medicine in a good way, rather than just for profit.
In the end, profits will dictate how the DNA decoding will be used. It will benefit a few at the expense and freedom of many.
Deciding what to do with humankind's genetic code is the ultimate test of our "Code of Ethics".
John Brownlee, England
If we do not use science to understand, we are endangering the human population. Maybe not now, but in 10, 20 or 100 years, we as a species will be challenged. The outcome will be determined by the science we do today.
The decoding of the human genome is certainly a landmark in scientific endeavour. However, it does throw up some profound issues for society; for example, what is viewed as a "normal" human being. Our perceptions of normality are shaped by our culture, therefore, is there not a danger that we will irreversibly manipulate the genetic makeup of our unborn children, to fit into our own ideas at that time?
Unless governments force all the genetic research companies to merge into a single organisation and co-operate with government planners then I don't think this potentially revolutionary knowledge can be used to benefit more than a select few. The consequences could even be negative and that is a risk that humanity should not be taking.
Mohansingh, India It's coincidental that we're talking about the Human Genome Project: as a student in Year 11 in Australia, I've just finished studying Brave New World, and Gattaca was shown on television earlier tonight. I suppose, looking at the sources that have coloured my opinion, it's not surprising that it's so oppositional.
Even when you offer only a glimpse into the potential of a person; is it not only likely, but a natural development, that this "potential" would be used as an indicator for
potential employers - the development of a society where one's position is determined by an inescapable genetic makeup. A genetic makeup that is accessible via a drop of blood, a strand of hair, a toenail, a shaving of skin, no less.
As Vincent put it in Gattaca, they'll have discrimination down to a science.
Your comments during the programme
Dr. Chris Rudd, USA
The race to discover the genetic code should not be done fast and cheap. Mistakes will and have been made. Thank god we have public funded research like NIH.
The private company will get to the finish line first. But the mistakes will take years to correct.
In terms of genetics, patent applicants in US must identify NOVEL DNA sequences, specify the PRODUCT of these sequences and how this product works in nature and ENABLE a professional in the field to use the sequence for the stated purpose.
Whilst I think that the mapping of the genes is an amazing development. I can't help but thinking that we are learning more than we need to know, could we soon become slaves to DNA engineers, with them alone deciding our future development.
David Kinston, Australia
From the ethical point of view, I cannot help wondering whether we are not
pushing science beyond due bounds. In as far as genetics are used to alter
the course of nature, humankind should note that our Creator never intended that we tamper with His blueprint. The consequences can be dire.
My experience with the insurance business has shown me that their first priority is the reduction of the amount they have to pay out, not the quantity and protection they offer customers. Even though DNA knowledge cannot predict everything that will happen to someone's health, insurance firms should be prevented from accessing one's DNA. One's ill health is a risk that they cannot be allowed to sideline as it is the nature of their business to protect against that over which we have no control.
Matt Dowson, England The whole question here is - are we ripe for proper use of such information?
Being able to create technology and use it is not the same as being mentally ripe. Therefore we should leave all genome manipulation alone for the time-being and keep it there for at least the next 10,000 years. Then maybe humanity will have grown enough to handle it.
Scott Rankin, Australia
Your comments before the programme
This could definitely be one of man's greatest scientific achievements. But the whole idea of patenting and corporate control over all or parts of this is a very frightening prospect.
Something HAS to be done to stop this scenario from happening.
One possible solution would be for all the countries in the world to be represented in a global non-commercial and non-political and non-religious body who has the responsibility over the human genome information.
We are in uncharted territory and should move cautiously. Both public and private parties (each with their own agenda) need to participate in establishing ethical principles and a means to ensure these principles are followed. The race to unravel the genome is nearly finished. Now the harder race (to resolve these issues) begins.
The history of medical ethics is one long slope - a steady slope but NOT a slippery slope as many
would have us believe.
Human anatomy was painstakingly learned over the objections of ethicists who claimed autopsies to be incompatible with human dignity. Early microscopes were vilified as distorting God's creation.
Science is merely the systematic study of the natural world, and what science CAN do, science
WILL (and should!) do. Slow and steady down the long slope to greater understanding of our world.
The benefits of medical research such as say, interferon, penicillin, anaesthetics or
even clean drinking water have yet to percolate to the poorer sections of human
society. The chances of any benefits that may accrue from the opening up of the
genome directory, I am afraid, will remain the exclusive preserve of the rich and the
resourceful.
Duncan Borthwick, Edinburgh, Scotland The Genome Project should be offered to all and not at a price. Human DNA is a part of nature and shouldn't have a price when the results that it will bring will benefit all of mankind. What if the internet had been under the same nature as this project then the world would have taken a lot longer to gain the advantages of the internet generation.
I congratulate the scientists. No stopping! We do not 'know enough'. Busting the genetic code marks the beginning of the end in our quest to understand the most complicated animal, the human being. Let the discovery continue.
Alan Edney, Kent, UK
The human genome is human property, no matter who was the first one to unravel it. If Insurance companies start using genetic material from people as a basis for rates and premiums, it will be another example of their scavenger's attitude towards their customers. Should we not start changing those attitudes before reaching the depths and secrets of our inner genetic matter?
I'd liken the human genome work thus far and the expectations we hold for tomorrow with the technological milestone achieved
with the successful deployment of atomic energy. The question foremost in my mind is...Will God's children handle this powerful knowledge wisely?
Why is everybody so hyped up about the fact that a rough draft of the human genetic is going to be released? I think that the only reason that the biotech groups have decided to get everyone so hyped up about the whole deal is because they are running out of money and public interest is waning considerably.
When will people realise that scientific discoveries are not for sale and that they should be benefited by all? People who see these amazing breakthroughs as a direct insult to religion should take a step back and look at the medical implications they provide.
If these codes can make living beings healthier and more intelligent, then why not? Only people who will not proifit from the human genome research are those who are opposedto change. Science presents both good and bad opportunities to exploit.
Roger Sayer, USA
Initially such technology will benefit the rich and well connected as is always the case but eventually the "trickle down" will reach us all and I believe it will improve the health of all mankind.
The human DNA genome IS being made available to all mankind. It is its annotation that is in dispute. As for whether public efforts can make better use of the information vs private companies, the public project spent ten times the money that Celera Genomics did, and is coming last in the race to assemble the genome. Private enterprise beats government bureaucracy every time.
It is insane to think that these companies should give up anything they discover to the "World Community." Why is genetic medicine any different to any other kind of medicine? These companies that decoded the genetic sequences did it for one reason alone, capitalism. They did not do it for charity. The world is motivated by money, unfortunately. Take away the prize, you take away the reason to work.
Jason, London, England
We stand on the verge of perhaps the greatest scientific discovery, yet this is to be sold to the highest bidder, not for the good of all, but to increase the profit of a company. If the DNA code was handed to the UN and made available, all companies could begin to formulate revolutionary medical cures, rather than one company making one drug and charging extremely high costs since they will have a monopoly on DNA related materials.
Science will always be supported by me, for the benefits it can provide. But we should know by now that there is another side to it, and should NEVER forget or ignore the existence of it. I myself do not want to live through something that resembles scenes from the "Alien resurrection" - if you catch my drift...
Anne, London, UK It seems to me that money talks everywhere these days. The human genome will be for sale, like anything else, to the highest bidder, without regard to their ethics or end game. George Orwell was right, Big Brother is coming, may already be here...it is multinational, for profit, in bed with government, and totally unconcerned with us as private people...we have become a publicly traded commodity.
Laurence Green, Sheffield, UK
We look back in disbelief to the times when people were burned at the stake as witches or warlocks for having some knowledge of the healing powers of herbs and other natural medicines. What then will the people think of our present day "witch hunters" and "doom and gloom merchants" years from now?
I cannot understand the number of e-mails stating that without private companies pushing for patents and profits, the sequencing of the human genome would be years away. There is a tight race between the academic, published research and its parasitic and inaccurate private competition. Personally, I think it is all perfectly clear. The good folk at the Sanger Centre are the Skywalkers and the biotech companies the Darth Vaders. That's all we need to know.
I don't trust the establishment nor do I fear the creation of a master race. However, there is the awful possibility of creating or changing us into a sub-race that will think and perform exactly as they wish us to. This is way beyond "1984" but with the sick leaders we have today, it's very possible.
The human genome project is a collaborative effort of many research institutions,
universities, private and public labs from all over the world. Being "human", everyone has the patent right and yes it should be public information, if not to be used in cloning humans.
As Ethics and Public Policy Advisor to a large-scale genetics firm in Silicon Valley, I am not entirely happy with industry conduct and aspirations. I am becoming increasingly convinced that the public needs to play an ever larger role in sharing the costs, enjoying the benefits and monitoring the conduct of private biotechnological interests. I am encouraged that some future-looking firms are moving in this direction.
Generally more good will be done by
the research but it must not under any circumstances
be used commercially or for discrimination.
Governments should see to this.
Phil W
This information, obtained with much effort from the scientific community, belongs to the world community as a whole. Any scientific discovery that benefits humankind should not be hoarded or kept shut-up for exclusive, profit driven interests.
I believe that, my DNA belongs to me. And not anybody who is able to merely decode it. So, here I claim all copy rights to my DNA. And if you use it without permission, expect a lawsuit...
Sequencing of the human genome is a very long-term piece of research, going back many years. The vast majority of the work has been done in open research, either publicly funded or through the University system with results being made available at each stage. For companies to come in at the last moment, using published techniques in a race to sequence the whole gene so as to patent it is an absolute abuse of the patent system.
andy, uk
I wouldn't worry, most of the information is meaningless. Knowing sequences doesn't mean understanding what they do.
The Genome is property of our species. Companies should be allowed to patent drugs and treatments derived from the research, but the basic Genome should be public knowledge. When an author writes a book they have copyright on the story, not the alphabet!
Let us not remove God from this whole issue. That the codes have been unravelled is the answer to the prayers of those afflicted with diseases that could be treatable with drugs that are likely to be developed from such knowledge. In my view, the codes should be laid bare fore all to see. By so doing, humanity can reap the greatest benefit from the codes.
Decoding the human genome will undoubtedly benefit all of humanity. However, it will benefit those living in affluent nations the most, and the elite living in those nations especially.
Pete, Birmingham,UK
Will all the pop-science pundits do a little more browsing through their Richard Dawkins before confusing 'DNA' with 'GOD'? DNA is no more fundamental than the 80,000-odd proteins it comes packaged with. The 'discovery' of the human genome is better understood as a description of the Encyclopaedia Britannica, which goes 'First there's an 'e', then there's an 'n', etc ...' - this description is only fundamental in that it describes the whole chromosome. It doesn't go anywhere near explaining it.
This information should be accessible to everyone at no cost because it's impossible to "decode" humanity.
Of course commercial companies should be able to patent their discoveries. It is their work and investment that has brought about this achievement and therefore it is their right to recoup their investment. This project would have taken years if it had been left to charity or government funding. The patents don't last forever so in the long term, everyone's a winner.
Will, Canada
I believe that corporations have no right to obtain patents on human genome. It is a sad sign of our time that everything is for sale and a subject for greed.
No one will benefit from having the human genome patented or restricted, if indeed this is even possible. The information should be distributed as widely as possible, so anyone with any ideas can act on them and perhaps invent a new treatment for disease. Any drugs made as a result of this information could be patented as normal, thus giving the incentive to do it in the first place.
Alex Pinfield, London, UK
I am optimistic about the benefits of decoding human DNA. If there are problems with the laws surrounding patents and cloning then they can be improved over time. We are all subject to the law - even the scientists. It is public debate that leads to better laws. We must tread a course that maximises the benefit of the decoding of human DNA.
The promised new treatments are most welcome, but they should be made available to all, not just a chosen few. If the genes of life are patented, they will become the property of the privileged, like big business, whose sole motive is to mint money!
Patenting discoveries, as against processes, is a dangerous precedent in any field but combined with the potential to slow medical research it is criminal. The US in particular is complicit in this abuse of patent law because it contains the majority of biotech companies and is therefore most likely to gain from them.
Brian Kandel, Albany, NY, USA
Patents don't last for a long time. Indeed, I would suggest that the patent period will be much less than it will take to develop any real use for the information. As was stated before, the danger is not from the scientists but from those who abuse the science. The doom and gloom merchants have always seen the downfall of humanity at every scientific achievement.
This is a vital commercial venture. Perhaps the BBC could be encouraged to patent that part of the genome that explains the mystery of people who watch daytime television
We hear lots of glib comments about how we should ban research into areas like genetics. But how is this ban to be enforced? Who will pay for the police, the monitoring, the surveillance needed to enforce a ban? And how many people with genetic disorders will die because of a ban on genetic engineering? Knowledge may be expensive, but ignorance will always cost much more.
My belief is that the DNA mapping project is designed to bring wealth to a very small section of our society. There may be other and altruistic reasons for the huge effort but the bottom line is that some wealthy organisations believe that they can get still wealthier.
The genome is the property of our species; while I agree with drug patents, this particular information should be released into the public domain. What drug companies and health researchers do with it from there should be patentable. If somebody develops a therapy based upon that information, fine, let them reap the rewards, but it's ridiculous in this case to give intellectual property rights on something as wide ranging and fundamentally important as this.
John Cookson, UK How can anyone claim patent for a particular gene? It's in no way unique and has not been invented. Surely patents could only be acquired on the basis of how a gene is identified by the geneticists. A woman has already started court proceedings to patent her own body to prove the ridiculous nature of this situation. Lets leave the twentieth century behind and find ways to make this inevitable technology as beneficial to the human race as the laws of entropy will allow.
Mark Lisle, Ulm, Germany
The decoding of the human genome is a magnificent achievement for science, but for the human race it holds as many if not more dangers than benefits. The genome is shared by all members of our race. Portions of it should not be allowed to be patented. A company cannot own the rights to the genetic code of people's bodies as they are personal details.
It's a remarkable scientific achievement and will lead to revolutionary opportunities in the field of medicine and genetics.
Urgent legislation is now required to prevent the potential for "genetic discrimination" and unethical genetic tinkering.
The issue of discrimination is breeding mass hypocrisy. Insurance companies already discriminate hugely when calculating premiums. The question is whether society as a whole would be prepared to pay for those "less secure" members, or would the healthy members ignore them for a drop in premiums? I think we all know the answer.
In my view, the right priorities should have been set. Globally, biotechnology should have begun with addressing the problem of HIV/AIDS. The application of such research would be enormous and practical.
The present emphasis on commercial profits and commercial profits alone, is depriving us of our humanity and undermining the very basis of human civilisation. "Man is an economic animal" is the foundation on which the exploitative, capitalist society is built. "Man does not live by bread alone" is oriental philosophy.
The only ones to benefit are the private biotechnology companies. The next step will be to patent their research, ultimately leading to the commercialisation of the human species and a world where 'who pays wins'. Science is currently advancing so fast that it is difficult for the public to understand what is happening, much less discuss the consequences.
Derek O'Brien, Northern Ireland My greatest fear is not the obvious one of creating GM humans, i.e. some kind of master race. Actually, a much greater danger is that knowledge derived from the human genome could be used in developing biological weapons (i.e. a GM hybrid virus or bacteria that is specifically designed to target people from a particular ethnic group). I doubt whether legislation will prevent such a thing happening. After all, murder is illegal but that doesn't stop people being killed.
I do not believe that this project
of decoding humanity should be
undertaken. It will open a
'Pandora's Box,' which will cancel
out any kind of medical advances
or discoveries; it means that the
information could fall into the hands
of the wrong people. Only God can
decode humanity.
Vinod Dawda, UK I have only one problem with this. The patent belongs to the originator of the human species and indeed all life, Almighty God! We presume on his creations at our peril. By all means let us use the intellect HE has given us to discover the secrets of life but we dare to steal his patent at great cost. The genome belongs to the entire human race without cost or profit!
The road we see ahead is a virtual minefield, and we will pick our way through with occasional stumbles and mishaps, but an exciting time nonetheless for all, particularly the medical scientists. Dr Riz Rahim, USA We still don't know what most of the DNA in the genome is there for. Most of it doesn't code for genes that are actively transcribed. The sequencing of the human genome does raise many ethical and moral issue, but for now it just gives scientists another tool to use in a battery to find the actual physical location of disease causing genes so that the bio chemistry can be better understood. The potential benefit of knowing certain information about a persons bio chemistry are overwhelming. We need greater education so that people can make an informed choice.
To the chap who said 'scientists are "us"; they are people with ethics, morality and judgement.'
Well who do these people ultimately work for? Shareholders. They are no different to many of the rest of 'us'. They really don't have the power to make 'moral' decisions. If scientists really did have the 'morals' and the 'ability' to act, would we really have had the possibility of say nuclear war? Chemical war, nuclear pollution, ozone depletion? Etc etc.
James Cork, Cambridge, England Finally, my life is catching up with my favourite reading material. Sci-fi and cyber punk have melded perfectly into the every day. (William Gibson and Neal Stephenson were right!) I'll actually be able to grow wings at will or change the TV channel telepathically in a few short years. Seriously, though, the implications are enormous and I do not think we, the proletariat, will have much say in what happens next. Big business and the pursuit of profit will govern it. I suggest everyone watch "Blade Runner" this weekend and say hello to the future.
It's sad when people
apply simplistic
thinking to complex
subjects. For example
"my genome is my
property". So what?
As long as someone is
willing to grant
permission for their
genome to be sequenced,
progress will be made.
In a world where
foetuses are aborted
for the convenience
of the mother every
day, are we really
going to throw a
fainting fit when
a parent is told that
their foetus has a
genetic defect, and
the choice of what
to do is up to them?
Mahender Singh, Switzerland Patenting the human genome, or even charging for access to it, can only serve to hinder the fundamental reason for its decoding - the development of effective treatments. The end user pays the cost. It is understandable for Celera and others to try to recuperate the cost of their research. It is clearly unethical, however, to profit financially from holding the key to information that is so universally applicable. This can only serve to make future treatments expensive, and thus inaccessible to those that cannot afford them.
Peter C. Kohler, USA
This will simply lead to the need for more and more legislation to ensure equality of opportunity and to guard against some members of society being discriminated against, based upon genetic information. The potential benefits are enormous, especially for families who are susceptible to passing on genetic defects which materialise in early life. The ethical and moral questions raised are also enormous and it will take more than codes of practice to ensure there is no misuse of a person's genetic code and to prevent wrong conclusions being drawn from the information.
John B, London, UK
Although I agree with the principle of decoding genetic information for a greater understanding and advancement of the human body, I am troubled by the concept of what a perfect human should be.
The danger, as always, lies not in the science itself, but what those who control the process choose to do with it.
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