THE HUMAN GENOME:

POEMS ON THE BOOK OF LIFE

GILLIAN K FERGUSON

Public Servants,

Private Masters



PUBLIC SERVANTS, PRIVATE MASTERS


“By the late 1990s there was a marked difference of opinion between those who wanted to pursue a ‘shotgun’ method to the human genome with commercial patenting along the way, and those who wanted it be slow, thorough and public. On the one side was a high school drop out, former professional surfer, Vietnam veteran and biotechnology millionaire named Craig Ventner, backed by his own company Celera; on the other a studious, bearded, methodical Cambridge-educated scientist, John Sulston, backed by the medical charity Wellcome Trust. No prizes for guessing which camp is which.” Matt Ridley, Science Writer


‘The public servant:, John Sulston - A bearded, sandal-wearing, self-professed "child of the Sixties", the director of the Human Genome Project in the UK spent 30 years of his life studying a one millimetre-long worm. His work at the MRC Laboratory of Molecular Biology on the cell lineage and genome of the tiny soil organism Caenorhabditis elegans was a trial run for the big one: the sequencing of the human genome. Dr Sulston was born in 1942, the son of a vicar and a schoolteacher. Though he is no longer religious, he says his upbringing instilled in him the ideal of social service and the idea that "you do not do things for money". Unlike Craig Venter, who travels in Lear Jets and Jaguar cars, Dr Sulston drives to work in the family second-hand car. After an undergraduate degree in organic chemistry and a PhD at Cambridge University, Dr Sulston headed for the Salk Institute in La Jolla, California. There, as a postdoc research fellow, he grew runner beans, argued with pro-Vietnam colleagues, and had dinner with Nobel prizewinners. He also studied prebiotic chemistry, and when he returned to Cambridge in 1969, he was snapped up by the MRC lab where the structure DNA was first identified. Dr Sulston and his colleagues at the University of Washington published the gene map of the nematode in 1990, then started to sequence it, and when the Wellcome Trust entered the race to do the same for the human in 1992, Dr Sulston was appointed director of the new Sanger Centre in Cambridgeshire. The nematode team finally completed the genome sequence (the first for an animal) in 1998. A man who is modest about his own achievements, Dr Sulston is a passionate believer in pushing the boundaries of science: "What is the purpose of being human and alive without doing new things?" He also fervently wants to ensure that our genetic blueprint is publicly and freely available. Genome sequencing for commercial gain is, he has said, "totally immoral and disgusting".’ ‘The Public Servant: John Sulston’, BBC Science online, 2000


‘The healer-believer - Francis Collins is a committed Christian and heads the publicly-funded National Human Genome Research Institute (NHGRI) in Washington DC, US. He describes himself as a physician-scientist and says his sole aim is to cure disease. Dr Collins has been directly involved in ground-breaking human gene research. With colleagues, he identified the gene for cystic fibrosis in 1989, the gene for neurofibromatosis in 1990 and the gene for Huntingdon's Disease in 1993. Dr Collins draws much of his inspiration and scientific drive from his faith. "It's interesting when you read the life of Christ how much of his time he spent healing the sick. There must have been a reason for that - he was modelling for us what it is we are intended to do by following his path." Dr Collins considers himself, and all humanity, to have a mandate from Jesus to save lives. A soft-spoken and, for the field, uncontroversial scientist, he was appointed director of the NHGRI in 1993, following in the immediate footsteps of DNA legend James Watson. Dr Collins' own research laboratory explores the molecular genetics of breast cancer, prostate cancer adult-onset diabetes and many other diseases. His professional reward, he says, comes when he discovers something that "the creator knew ahead of time - that's one of the aspects of my existence I wouldn't trade for anything". He was raised on a small farm in Virginia and was tutored at home until the age of 12. He studied chemistry at the University of Virginia and then did a doctorate in physical chemistry at Yale. It was then, he says, that he recognised the beginnings of a revolution in molecular biology and genetics, and he enrolled in the medical school of the University of North Carolina. After graduating, he joined Yale University and then the University of Michigan, where he developed a method of crossing large stretches of DNA to identify disease genes - the technique that achieved spectacular success in his subsequent work.’ ‘The Healer-believer: Francis Collins’, BBC Science online, 2000


We will choose our generals in invisible elections;

by our hearts, we will choose them for good or ill -


by our greed and intuition - altruism, fear, trust - love

of wonder, glory, money, what we can get for ourself;


trusting our public servants to fight the good fight,

stand up for us - where we do not even understand


what will happen if they fail and the blueprint of man,

owned by all, Universal property, is privatised; stolen


with silken, cunning words about medicines, faster cures -

is landed like a fish, gasping, shedding silver scales, gutted


in darkness for any meat; shredded to fluid, mercury bones,

elements not yet understood filleted, exploited for anything


of monetary value at the cost of the sick, starving - well-

intentioned barred from information - discarded, cast off


like snake-skin, wedding dress - ruined, gasping for water

that was its element; re-writing detailed responses to light.



The soul of science is a vagabond


The soul of science is a vagabond, forever wandering,

exploring - with something of the wild desert prophet,

or artist in disarray; strange - never quite under control,


but never free - for its feet must be shackled to humanity,

smiling steel backboning scientific soul as well as beauty -

ruthless pursuit of depersonalised knowledge; pure, neutral


information, principle of advancement with no accountability,

any more than ants stinging dissector, a passive blade of grass,

paper, cuts. We call this spirit to be with us, as snakecharmers,


wizards, lion-tamers; hopeful of our calming, righteous words,

our spell of public probity - rhymes of law, intention – mission;

to culture benefit of bright promise, advancing life by ingenious


means; laying its gifts on the altar, as food in the hungry mouth,

safe light in growing darkness, or products to clean the wounded

world - subsidise the healing art; fuelling wonder, understanding.


So motive, plot, the ruling nature of our hearts; intention, desired

outcome, all influence how science is nurtured, applied, civilised;

enslavement of science by money is a despoilation of humanity’s


water-mark of invention, compassion - her temporary masters

matter - alter her direction as leading the footsteps of a child -

affect her future; even as she leads now, shudderingly beautiful,


we must follow, hand in hand guiding, for she has no true masters.

Offspring of the Universe, we help to form her mission, character -

especially where it is difficult to distinguish, who is leading whom.



Science is a freelance spirit


Science is a freelance spirit; she will work for anyone,

any motive firing any hand - she is blind to the future.


So wild, beautiful, free; her spirit of enquiry everything

to her nature. How alluring - siren-voiced shape-shifter,


will o’ the wisp or heavenly flare - great discoverer of stars,

or furnisher of bombs; fount of vaccination or germ warfare.


Hers is not to reason why - but always onward to go;

into the very dark she helps to understand - explores.



‘The maverick - Craig Venter's company Celera Genomics has a slogan: "Speed matters - discovery can't wait." And there's no doubt that Dr Venter is a man in a hurry. He turned the human gene mapping programme into a competitive race and, in so doing, he has become the most controversial scientist of his day. But, as a boy, he did not exemplify good scholarship and at 18 he chose to devote his life to the surfing pleasures of the beaches in Southern California. Three years later in 1967, he was drafted into the Vietnam conflict. As an orderly in the naval field hospital at Da Nang, he tended to thousands of soldiers wounded and killed during the Tet offensive. This inspired two important changes in him: a determination to become a doctor and a conviction that time should never be wasted. "Life was so cheap in Vietnam. That is where my sense of urgency comes from," he said. During his medical training he excelled in research rather than practice. By the 1980s, the early days of the revolution in molecular biology, he was working at the government-funded US National Institute of Health and soon realised the importance of decoding genes. But the work was messy, tedious and agonisingly slow. So, in 1987, when he read reports of an automated decoding machine, he soon had the first one in his lab. This speeded things up - but not enough. Then came Dr Venter's real breakthrough. He realised that he did not need to trawl the entire genome to find the active parts, because cells already use those parts naturally. He switched his attention from the DNA blueprint to the messenger molecules (called RNA) that a cell makes from that blueprint. He was then able to churn out gene sequences at unprecedented rates. His success shocked some, most notably the co-discoverer of DNA, James Watson, who famously dismissed the relatively crude results obtained as work "any monkey" could do. The criticism, and the failure to secure further public research funding, prompted Dr Venter to leave the NIH in 1992 and set up a private research institute, The Institute for Genomic Research (funded by Human Genomic Sciences). And, in 1995, he again stunned the scientific establishment by unveiling the first, complete genome of a free-living organism, Haemophilus influenzae, a major cause of childhood ear infections and meningitis. His greatest challenge to the establishment came in May 1998, when he announced the formation of a commercial company, Celera Genomics, to crack the entire human genetic code in just three years. At that point, the public project was three years into a 10-year programme. The public project now expects to complete the human genome in 2003, but Dr Venter aims to finish in 2001. Dr Venter is confident to the point of arrogance: "Is my science of a level consistent with other people who have gotten the Nobel? Yes." He is also a very wealthy user of Lear Jets and private yachts. But what is also undeniable is that his maverick efforts in the field of human genomics have speeded up the entire process. Whether the main beneficiary of this acceleration is humanity or Craig Venter remains to be seen.’ The Maverick: Craig Venter’, BBC Science online, 2000


‘Homo sapiens Genome Symposium - Portrait of a serial sequencer. Not even the sky is the limit for genome giant's grand plan... Following his frantic dash to sequence our blueprint, he is now juggling several other grandiose genetic schemes. … Venter discusses some results just in from his latest pet project: cataloguing the genetic sequence of every microbe in the Atlantic Ocean, starting in the Sargasso Sea around Bermuda. 150,000 rough sequences scrutinized so far, says Venter, all are from new species and a third are like nothing seen before. "We were blown away," he says. This single experiment could be the largest ever species-discovery project."… The project is ongoing at Venter's non-profit Institute for Biological Energy Alternatives in Rockville, Maryland. It has been suggested that such exotic microbes might reveal new ways to make fuel, Venter suggests another aim: to use the completed inventories of microbes from different seas and oceans to detect subsequent blips in species number or type. might forecast imminent environmental change such as coral die-off - much like miners' canaries warned of lethal gas. "These could be the ultimate canaries for the environment," Venter says…He is already thinking beyond marine creatures to those in the next basic element: air. Having already sequenced bugs in the breeze over Barbados, he is now hatching a plan to sequence those floating in different layers of the atmosphere.’ Helen Pearson, Nature, 2003


So the argument comes down to the inarguable sort


So the argument comes down to the inarguable sort -

the existence of God, soul, spirit, love, true altruism;


blue-faced with the man who does not believe in art’s

importance for the world, society, every human being,


and so will never support funding of anything beyond

old dance or older music, so weathered, still beautiful


like an ancient diva, star in a chair, painted up, elegant;

same fantastic sky every night admired, always will be.


When all arguments have reached the basic line,

there is only feeling, belief; for who could prove


what art does for the soul - particularly if the soul

itself remains in doubt; particularly if those asking


are the ones who clearly do not feel this reaching,

this enriching, intrinsic value - and no persuasion,


example, breath, will ever change such cold mind –

show him a sunset, he will only see gold, red effects


on the spectrum wrought by evening and shadow,

turn of the Earth; he does not see stars but shining


rocks, volatile spheres hanging in patternless death,

illusions of night as no more than absence of light -


and such is the Genome; biology’s art, Nature’s work,

spirit of life coded - love of creation decoded; no-one


unable to grasp this fundamental truth, assess natural

miracles as worthy - intrinsically precious, valuable -


will ever understand how some things are sacrosanct;

should be hallowed - can never ever be about money.



‘The entry of Celera into the genome sequencing arena, and the idea of patenting genes, met with little approval from the UK press. Describing Craig Venter as ‘The gene genie racing to grab a fast billion’, the Telegraph asked, ‘Could there be a National Health Service broken by the costs of royalty payments, mainly to American biotechnology companies, for diagnostic tests?’ The race between the public and private efforts was on (in the media’s eyes at least), and the milestones of the sequencing project came ever more rapidly. On 26 November 1999, the billionth letter of the human genome was deposited in the public databases - ‘Milestone as researchers hit G-spot of human DNA’ wrote The Financial Times of the guanine DNA base which took the honours.  And on 1 December 1999, the publication of the sequence of the first human chromosome, chromosome 22, or the ‘first chapter of the manual of man’ as the Telegraph described it (2 December 1999), by the Sanger Centre launched an ever increasing analysis of the role of the private and public sectors.’  The History of the Human Genome Project, The Wellcome Trust


‘At the same time, several private companies, including Celera, of Rockville, Md., were sequencing on their own, even promising to get the job done before the publicly funded Human Genome Project could finish. And despite scientists’ claims that it’s not really a race, they’ve acted like it is. “We are in a hurry,” biologist Robert Waterston said earlier. “We want to get it done and get it out there” where the world's scientists can use it. “We're impatient people anyway.” Certainly the stock market has noticed, even if scientists argue it wasn't actually a race. The shares of Celera's parent company, Perkin-Elmer Inc., have yo-yoed up and down dramatically each time there's been a hint that one side or the other is ahead. Investors are speculating that Celera can find and patent enough of the genome to become very, very rich on genome information, and on gene-based biomedical products. Yesterday shares of Celera rose as high as $135 before closing at $112.’ ref


‘Press views of first draft - The Sunday Times took it just to be another pitstop in ‘The race for the Croesus code’, and argued: ‘What is at stake is the future of medicine, maybe even the future of social improvement via genetical modification of behaviour.’ March 2000, Prime Minister Tony Blair and President Bill Clinton entered the ‘Battle to control the human genome blueprint’ (The Times) when they called for all raw data on human genes to be made freely available to scientists everywhere. ‘Gene panic sparks slump’ wrote the Sunday Business as the share prices of Celera and other biotech companies plummeted. The Economist came to the defence of the private sector companies, describing them as ‘In-gene-uous’; and saying that ‘in genomics, the British and American governments are meddling in things that do not concern them’ (18 March 2000). The Blair/Clinton announcement was intended to ‘tell scientists to end the gene war’ (the Telegraph), but the media were not to be diverted. ‘DNA: It’s War’, headlined the Guardian Weekend’s profiles of Craig Venter and John Sulston (6 May 2000). ‘Decoding the human genome will change the world. But it’s not just about science; it’s UK vs US; public spirit vs private enterprise. And it’s personal’. As journalists readied themselves for the announcement of the first draft of the human genome, the Telegraph asked two popular science writers, ‘Has the genome been overhyped?’ ‘Yes,’ said Steve Jones, ‘There’s more to life than chemistry’. ‘No,’ countered Matt Ridley, ‘It really is a BIG DEAL.’ The History of the Human Genome Project, The Wellcome Trust


The Genome turning from Nature’s art

To commodity, object, shareholder’s thing;

Brash pretenders entering the ring -

Commerce, exploitation, dollars at heart.


The Genome undisturbed, life’s monument

Within its living tomb, is stirred, revealed,

Millennia by human ignorance concealed;

Organic history, story, original document -


Such elusive treasure brought within our reach,

Power and riches fabled in the dream of fiction,

Yet defying direct description, visual depiction,

With metaphor, poetic language, scientists beseech.


The battle for the Genome’s soul is what’s at stake,

Its heart belongs to nature, to the source of life,

But cannot be defended by the sword or knife,

Realisation, elucidation, morals, its case must make. 



‘Celera's approach challenged the guiding ethos of the Human Genome Project. Following the example set by the worm sequencing project, all the information produced by human sequencing centres was immediately and freely available to the biomedical research community, via the Internet, with no restrictions on how it could be used. These principles were enshrined in an agreement on human sequencing brokered at a strategy meeting sponsored by the Wellcome Trust in Bermuda in February 1996, and extended to data on other organisms at a later meeting. Celera, by contrast, aimed to make its data available only to paying customers, and planned to patent some before releasing them. Other companies, notably Incyte and Human Genome Sciences, were already operating on this basis, going after individual genes rather than the whole genome. For John Sulston, releasing sequence information quickly was partly a matter of giving the biomedical community the earliest possible chance to do something useful with it, but also, importantly, it was a means of putting those sequences beyond the reach of commercial companies that might want to patent them or charge for access to the information. Not opposed to the patenting of products such as diagnostic tests or drugs, Dr Sulston and the other leaders of the publicly funded project viewed the patenting of the human sequence itself as unethical and an obstacle to the rapid application of genomic information to health problems. People have to take democratic responsibility for the human genome," says Dr Sulston. "It's not something that can be left to the commercial manufacturers, like making motor cars." This principled stand was vindicated in March 2000 when US President Bill Clinton and UK Prime Minister Tony Blair issued a joint statement endorsing the public release of genomic data.’ Wellcome Trust



God’s burning silver fingerprints


I put my foot upon the Moon and thought I owned

the powdered ground, such weird light and legend


formed from time and mind - small and proprietorial,

like an insect clinging to a glorious flower, his home;


winged lord of all he surveys, believing the soul

of the flower is his to own, pompous in delusion.


I raise up my arms to the sky, press my stretching fingertips

on the stars; as if God’s burning silver fingerprints are mine.


‘Caution urged over genome hype Scientists have attempted to deflate what they see as the hype now surrounding the quest to decode the human genetic blueprint. The work is being pursued by both publicly-funded agencies and private companies in what many commentators have described as a race. Only last week, the US firm Celera Genomics claimed to have finished the first step in sequencing the genes of one person. But at a conference of geneticists in Vancouver at the weekend, the chief of the publicly-funded Human Genome Project said people should not get overexcited by Celera's announcement. “You should not take at face value any claim by any group for at least two years that says 'we have finished sequencing a human genome sequence'. It will not be true," Dr Francis Collins told reporters prior to the start of the Human Genome Meeting 2000. Dr Collins said Celera was only able to make its announcement because it had reduced the numbers of reviews conducted on each new piece of data. Celera itself said it still needed to process the data and survey other individuals to check the information was correct. But Dr Collins added: "All of us need to be very careful in our language. When somebody says 'done' or 'finished' or 'completed', you need to ask them what their definition is because the answers may be very interesting." The public collaborative effort, which includes 16 institutions in the US, UK, France, Canada, Germany and Japan, makes its data freely available by posting deciphered code on the net every 24 hours. The group recently announced that it had sequenced two thirds of the code that is the human blueprint. It promised a "working draft" of 90% of the "book of life" in June. In the past, these researchers have questioned the intentions of private companies, accusing them of trying to gain "ownership" of the genome by filing for patents. They have called on companies like Celera to open up its data to scrutiny. The company has promised to do this once it has finished its decoding effort. The last few months have witnessed some very bitter public statements and seen an intervention from US President Bill Clinton and UK Prime Minister Tony Blair, who called on all raw data to be made public but reaffirmed the importance of patents as a way to fund expensive research. Dr Michael Hayden, the chair of HGM 2000, said the arguments were moving all parties towards a consensus. "I think there is a convergence between the public and private sectors," he told the BBC. "There is a slight difference in emphasis, but I think there is a convergence towards the view that the raw sequence should not be patented but that there should be an opportunity to patent genes of known function with utility." And Dr Hayden, who is also a professor of genetics at the University of British Colombia, said the dispute should not be allowed to overshadow the extraordinary efforts of all parties. "In four billion years of evolution, we've never had the opportunity to contemplate the recipes of the strands of sequence that represent and encode all the functions that make us who we are. "We're on the verge of having that for the human, and that will set the stage for medical research for the coming century”.’ BBC Science


‘The true men of action in our time, those who transform the world, are not the politicians and statemen but the scientists.’ WH Auden, The Dyer’s Hand, 1963


‘COLLINS [Dr Francis Collins, Head, US Human Genome Project]: “Well there's a difference in the goal. The publicly funded genome project has as its goal putting the information into the hands of scientists all over the world, immediately so that they can try to figure out what it means. We think of this as building the periodic table of the elements for human biology. Would it have been a good idea for the periodic table of the elements for chemistry to have intellectual property attached to it so that people couldn't work on it without signing some secrecy agreement or paying some royalty.” CNN: ‘You mean, if I patented hydrogen.’ COLLINS: “Right, would it have been good if hydrogen and neon and helium had all had licensing and royalty stipulations before you could go to the lab and do an experiment? It doesn't seem like a good idea. It's not that different here, what we're talking about is this list, this table. The elements in this case are the human genes. …I really do worry about a scenario where something as fundamentally important as the sequence of the human genome, the Book of Life, might end up tied up in a private database by a single company, whose data release policies change from week to week. Is that a scenario that we, the public, not just even in the U.S., the whole world, are going to be comfortable with? I'm not comfortable with that”.’ CNN, in-depth special


Human Genome Projects: Public versus Private


An epic


I didn't want my genetic information to be under the control of any one person. I regret having to fight, but I am proud that I did.” Dr John Sulston, Head, UK Human Genome Project


An epic story; the smell of Tolkien.

Massed forces for the public good -


freedom, healing, access, sharing;

seem shining - silver-armoured -


like Peter Jackson’s regiment of elves;

wise, gleaming with weird knowledge,


aware of the human creature unearthed -

beauty of its simple truth; God’s writing,


encrypted in worm, leaf and flesh

four billion years - now revealed.



It is us – key to our fundamental secrets -

at once the answer and burning questions;


like finding the recipe for moonlight,

stone; cold whiteness of a lily’s skin -


ghost and funeral understood,

seed and laying down of code;


nature of the unopened eye in darkness -

scripture leaking light, ethereal perfume.



And ranged against - brash forces of money,

benefit for the few, an army of shareholders;


scientists wearing shades, shielding such brilliance

from the people who will never get a proper chance


to understand this stealing of ourselves, dazzling

chances now held within our hands - other hands


being permitted, their gross attempts at capture,

violent arrest - kidnap - immoral imprisonment.


How can money buy life’s glittering processes –

agonising millennia just for the white of a swan’s


wing - fabulous winter variations from snow, water

and light, of Polar Bear, hare, Snow Leopard – owl;


caught from Moon’s glittering nets thrown over sea,

hauling the breathing water to shore - struggling on


to the mayfly swim of encrypted sperm - engraved

egg; slow anatomy of a smile, eye, red metronome


of beating heart - bloody molecules that were once

that sea, home of the fish that became us too; a star.



Who can make money stealing from God

and Nature, who cannot sue; justify profit


from the authorship of mankind,

dreamt among young seed-stars -


like claiming the sky, charging to fly,

grow feathers - robbing egg recipes -


when rain is let from bloated clouds,

charging us citizens of Earth to drink.



Stealing the freely given means of healing

is rude, unpardonable – unconscionable -


buying Earth’s own medicine, dreaming

secrets of our communal human genes -


is a logical non sequitur; what life, Evolution

has created, can never be for sale, purchased -


who but God, the inventor of Creation,

can possibly hold Life’s shining patent.



*


They stood sniping; tongue swords

drawn when the talking had failed -


battle of words for the Word of life

in a war hardly anyone understood.


The best weapon held by the dark forces

of money is ignorance; a Grand Canyon


between those who understand -

realise, gasp at vast implications;


and those who do not know -

could, or could not, understand.


*


The scientist cast necessarily as warrior

in a bloodless war in an alien language - 


on a high plain well above the people;

unblissfully unaware, stumbling Earth.


Colours blazing, first blood is drawn,

drawing arenas in the public domain -


making avaricious wolves howl for more;

angels polish their morals, voices - wings.



This grail is writing


The race for the grail of life is on.

This grail is writing, holy writing;


holy because it creates, has sung

itself into existence; into endless


poems at the heart of existence -

all written so, so, achingly slow.



‘Row over 'Book of Life' - A row has broken out… Two rival groups are deciphering the human genome: an international public consortium and a private effort led by gene pioneer Dr Craig Venter, of Celera Genomics. The public team has accused Celera of producing an inferior product and holding back science by imposing commercial restrictions on its data. But Dr Venter claims the criticisms come from a minority of researchers, who wanted to have the human genome all to themselves, and that his research is faster, cheaper and more accurate. The attack on Celera came as the Human Genome Project published a series of papers in the scientific journal Nature. At a London press conference, the public scientists claimed Celera's "Book of Life" relied heavily on publicly-available data and could not have been written without it. Sir John Sulston, former director of the Sanger Centre in Cambridgeshire, said: "Two years ago Celera said its process would magically solve everything and the public domain should go away. Celera has repeatedly said we have wasted research money in doing what we have done with our American collaborators. We did it because we believed that probably the claim that the Celera method would work on its own was false. What we can say today is that we were right. The claim that this would work on its own is not correct." …Celera is publishing its work at the same time in the journal Science. Although scientists can freely access Celera data, they are not allowed to redistribute it or use the information for commercial purposes. Sir John said these restrictions would severely inhibit research around the world into the functions of human genes, which ultimately could lead to a wealth of new treatments for disease. The work is part of international efforts over the past 10 years to unravel the entire genetic make-up of a human being.’ BBC News


The dragon exhibits his treasure,

shining in the National Gallery -


smiling, puffs of gentle smoke

escape his cooled lips - scales


gleam, his wings are polished

for the day; but approach him,


ask to see his treasure closer,

to touch, beat gold molecules


to jewellery sold for medicine,

for poor people over the world;


feel heat, your hair burn - burst

of smouldering, possessive fire.



‘One set is the official version of the human DNA code. The other is a rival version from a commercial company. The alpha males of each team are sworn enemies. Their two philosophies couldn't be more different. It was supposed to be the best kept secret in science but this weekend that broke down. Not only did news of today's findings leak out, but what should have been a celebration of a great moment in scientific history descended into bitter acrimony. At press briefings today, the row erupted. In London, the man at the helm of the publicly funded team said the genome should belong to no one individual or company, and that the commercial team's version draws heavily on the public work. He thanked the charities and governments that had paid for the project. SULSTON: “Without that, not only would we have a privatised genome, but we would not have a genome at all.” WATTS: “Craig Venter, the man at the head of the commercial project, says he's charging scientists because he's added value to the data. Ignoring the row, he tried to focus on the science and made profound connections between the sequence and the nature of humanity”. VENTER: “Our understanding of the human genome has changed in fundamental ways. The small number of genes - just 30,000 genes instead of 140,000 - supports the notion that we're not hard-wired. We now know the notion that one gene leads to one protein and perhaps one disease is false.” WATTS: “Even the tale of the way these papers have been published is a bloody one. The public team has its findings in this week's issue of Nature magazine. The commercial project is published in the rival US journal - Science magazine. UK scientists accuse the American publisher of bowing to the restrictive terms of a commercial outfit but the magazine says it's just being pragmatic.” SULSTON: “It's depressed me all along that there's not a completely altruistic view to the way the genome's being handled. It's not a matter of sniping - it's not a game. This is about important issues - the release and use of our genome. It's not something you can switch off overnight - if people want to put restrictions on that then I'm afraid I have to say I don't agree. If you call that sniping, fine, but I don't. I think it's just telling the truth as I see it. WATTS: “This very public row has threatened to overshadow the actual science in today's papers”.’ Horizon transcript, BBC TV


‘Unencumbered access to this information will promote discoveries that will enhance the quality of life for all human kind’.” Bill Clinton, US President


Who are these tiny gods


Who are these tiny gods,

trivial imposter deities -


coming as if Earth was an orphan

crying her rains, lakes and seas,


because unloved -

needing adoption.



Who are these tiny human fathers,

trying to take Earth as their child -


laying their flags in old flesh

as if she were undiscovered -


thinking we will agree they invented Earth -

and all her creatures, her flowers and people,


who have followed from the same stem -

these magic molecules that swarmed stars.



These shining tools leaking life, death,

have not been made by men’s hands -


the hands of men have been made by them;

the written Earth read, already has a Father.



Why not mix the results of the Human Genome Project with those of the private effort? Senior members of the Human Genome Project (HGP) held talks with representatives from Celera Genomics, the private company that is sequencing the human genome, at the end of 1999 and the early part of 2000. Although both sides could see advantages in pooling data, the HGP has had a policy throughout its history of instantaneous release without restriction and for free. Celera could not agree to this: it is a commercial organisation whose first responsibility is to provide profit for its shareholders. No resolution was forthcoming and the talks ended. What is the point of both the public and private sectors sequencing the human genome? While the private genomics company Celera announced that they would duplicate the public effort, but at lower cost, the contribution of the public sector is vital. Because the Human Genome Project releases all of its data for free, without restriction it means that no one company will own the human genome. It also means that everyone has access to the human genome sequence and therefore serves to speed up scientific and medical developments. Celera have not released their data at regular intervals and, as a commercial organization, appropriately have loyalties to shareholders and subscribers to their database. While Celera produced a draft sequence of the human genome they are not going on to finish it. There is only one project that will finish the human genome sequence: the Human Genome Project. Who owns the public sequence? Simply, no one - or all of us! The sequences obtained each day at the sequencing centres are sent each day to databases. The databases are held on massive computers in the UK, the US and Japan. These computers provide tools to search through the DNA sequence. They also provide many tools to analyse the sequence information, to help researchers understand the instructions in the DNA code. Although these are complex tools to do a sophisticated job, they are available to all with internet access for free. If the Human Genome Project has its sequence in the public domain, what stops commercial organisations from using the results? Nothing! The data are there to help academic and commercial researchers produce new ideas to help us fight human disease. The partners in the Human Genome Project (HGP), many other genomics organisations, academic researchers and commercial researchers all welcome this fast release: the access to the various sites tells us that researchers from all areas are retrieving data. That is what it is for: that is why the release is so quick: there is a real need for rapid release and the HGP centres provide it. It is there to be used.’ from ‘Frequently Asked Questions’, Your Genome.org


‘The publication of the human genome sequence was to have been a celebration of arguably humankind's greatest endeavour. Instead it has turned out to be a slanging match between the public sector research effort and the rival private sector bid by Craig Venter's Celera Genomics. It is more than just another internal wrangle because what is at issue is not just who should get the credit, but the way in which scientific research should be carried out in the future. The public sector scientists have spent the past few days briefing science correspondents against Celera's paper. They say that his method for generating the sequence of the human genome "has failed". They claim that Dr Venter could not have put his sequence together without the public sector's data - and even by combining his data with theirs, they say, it is no better - and in some respects - worse, a claim that Venter vehemently denies. And they have also renewed their condemnation of Dr Venter's decision not to deposit his data in the public computer archive, Genbank. Instead Celera will grant full access to its own database - but has set restrictions on distribution of the data. Public sector researchers say this would hinder the free flow of information and slow progress to developing cures for diseases. So why all the bad blood? To my mind the public sector researchers have not forgiven Dr Venter for rattling their cage in 1998 when he claimed he could sequence the human genome faster and cheaper than the public sector effort. He even went on to suggest to Congress that it was wasting taxpayer's money by funding the public effort. If that was a wind-up it worked. Fearful that their grand project would be hijacked by a barrow boy, the public effort splashed out on the same super-fast sequencing machines that Celera were using. This precipitated the most expensive equipment arms race in the history of biology - of which the only real winner was the sequence machine manufacturer, Perkin Elmer. Now the dust has settled and the data is now available for examination, the public sector scientists have been able to confirm what they suspected all along: Craig Venter could not have put together his sequence without their work - and that the public effort was needed after all. What is at the heart of this bitter long-running feud is a fundamental philosophical difference between the two camps…But to many bench scientists in the public sector there is a genuine admiration for the quality of Craig Venter's work and the fact that he had the courage to give their bosses - the sleepy scientific establishment - a much needed wake up call.’ Personal commentary, Pallab Ghosh, BBC Science correspondent


Examination of motive only gets you so far -

assessment of results, practical consequences,


must be addressed. Good - imperfect institutions

can be ironed, improved, faults corrected, helped,


rather than just swept out of existence - shunned,

deliberately deteriorated, run down, and so more


criticised; like the Thatcher Government and UK

NHS. Where there is moral need for public effort,


all hands must steer to the same destination,

if they have valuable contributions to make;


discussion, debate, will help keep paths clear,

identify what must stay public, for the public


good, for the benefit of all, advance of civilisation.

Some shining motive as a guide, higher principle -


illuminating, empowering, protecting, energising -

rather than applying business models that can’t fit;


health, medicine, education - pure advancement

of science for the benefit of all; not one of these


can ever be a business, because they are not -

not everything can be defined and described,


treated – executed - in coarse financial terms -

because money is driving, and we just follow,


lamely mumbling of ethics and higher goals,

sense of universal love, compassion and zeal.


Who are the masters of mankind if not men,

collectively; what greater symbol appearing


than the holy Genome, principle of life sanctified

over four billion years - for every single citizen –


if anyone must get all business-like here, then we

are the shareholders, stakeholders - only directors. 


*


The united states of quest, discovery and awe.

The united states of wonder, glory, admiration.


The united states of history, biology and love;

do not belong to any one country, man or men.



You're aware of some criticisms that have come from people in the public sector saying that your rough draft is very rough and their sequence is more accurate. What's your response to these criticisms? Craig Venter (CV): “We find them extremely disappointing. These are coming from scientists that I have a lot of respect for. They're doing good quality work for the most part but they also have a very strong vested interest in terms of tens of millions of dollars - billions of dollars - going to their labs over years. They are trying to fool the public about what they are doing. Our sequences have set the standard for the world in terms of quality and they're of a much higher quality than has been published by most other groups. PG - Why do you think they need to devalue your work in this way? CV: “I don't know why they do it. I can only guess it's because they're dependent on public charities and tax payer money to continue what they are doing and these are kinds of monies that have never gone into science before. The budget and the number of employees at the Sanger Centre in Cambridge, UK, [one of the main sequencing centres for the public effort] far exceeds the budget of Celera Genomics, a public traded company. So there are strong economic interests and people want to get credit. The public effort promised over a 15-year period there would be a finished genome sequence. Celera made it non-tolerable to wait that long. We started out to get the genome in a couple of year's time. We'll end up sequencing the genome in less than one year. We didn't do that to try to damage the Sanger Centre. We did it because we were extremely disturbed to hear that this important project was getting bogged down in minor scientific squabbles about who would get credit for doing it. The most important thing is that we get it done quickly, so that we can move science forward to try to find cures for cancer and other diseases affecting all of us.” Some people say you talk up your landmarks so that share prices go up. Do you do this because you need a lot of money to invest? CV: “In fact, that's not true in our case. Shareholders that have invested in Celera, some have lost value because of irresponsible statements made by others. Celera is not trying to raise money through the stock market. We did that one time and raised $1bn. We have that in the bank and are using it to fund all our post-genomic efforts. The stock value right now has no direct effect on anything Celera does, but it does have a direct effect on people I care about who invested their money because they believe that we're trying to change the future of medicine. It does bother me to see those people affected economically because of other people making irresponsible statements. PG - You've become known in Europe as the Bill Gates of biology - how do you feel about that? CV: “I don't think it's appropriate at all. I represent moving things forward into the new economy. Genomics is a big part of the economy going forward. I hope we can change how medicine is practised and having a role in that is exciting”.’ BBC Interview with Craig Venter


Fundamental mismatch in the model


Fundamental mismatch in the model – like trying to explain

why keeping Van Gogh’s paintings in a vault, as investment,


is morally wrong - how the pictures scream, such unseen colour

raging at the cage, vibrating his printed molecules up in heaven -


shaking stars at their foundations; all the glory of the work masked,

gobbled up by monetary chains, prisons. What businesses will work


on Genome pieces that never will bring profit, bear financial fruit;

but maybe assist, arrest the suffering of a billion starving children?


Why would we allow such kidnap of the Genome for the shareholder,

whose application of what is scientifically worth pursuing must only,


per se, be driven by certain requirements: Will this ultimately make money

for us, the company, those noble characters who reached into their ample


pockets to see if we could make more, I mean, advance science of course;

fund the future care and cure of our poor fellow citizens – regardless of


return on our investment. Carry on, there’s a good chap; what matter

if you find nothing that can be alchemised to stockmarket gold – yup,


all we’re interested in is how we sleep at night, knowing how we raced

the public effort for the good of mankind - with never a thought given


to our own accounts…So, how’ s it going;  don’t suppose there’s any hint

of a potential cure for something common but baffling around the world?


No, no matter, just asking, thought I’d mention it while I’m being imagined

here in these words. Ah, scientific philanthropy is a wonderful thing – non?



Human Genome - Nature’s Grail


Nature’s Grail - 

maybe the very recipe


God used to call Jesus,

Himself,


into flesh,

Earthly being.


Skin and spirit

compatible, glued;


anchored, written

in DNA, as we are.



‘Why have we set up the Genome Gateway and who will benefit from using it? Biology as a data-rich subject is a relatively new phenomenon. We believe that genomics data has the potential to be (indeed, is already) a powerful integrative force across the spectrum of biological sciences. But in order to be maximally effective, the information needs to be navigable by the whole research community; it also needs to be accessible and comprehensive. The Genome Gateway is Nature's contribution to this process.’ Adam Rutherford, Web Editor, Nature Bette Phimister; Editor, Nature


"It has been important to the Wellcome Trust that the information from the Human Genome Project has been released, every day, free to all scientists across the world. It really is a gift to the world, and not just to the developed world but the developing world. In the last two months scientists from the developing world have accessed this information over 300 000 times. If the sequence data were commercial, it would be restricted in some way. It matters enormously that the data is not held under commercial licence. I really don't think that to have a bizarre 'pay and view' mechanism, almost like digital TV buying up the World Cup, is right for the human genome sequence. By helping maintain the principle of equal and free access to all, we are helping to somewhat lessen the gap between the rich countries of the West and our colleagues in the poorer parts of the world. This new knowledge should be seen as a blessing, and not a curse. It's a blessing because it opens up the way to the development of new medicines that can be used by all people, everywhere." Dr Mike Dexter, Director, Wellcome Trust, 2001
Human_Genome_Project_Method_%282%29.html


 
Home
Note from the author
exploring the project
quotes

INTRODUCTION
CONTENTS
SEQUENCE ONE
SEQUENCE TWO
SEQUENCE THREE
SEQUENCE FOUR
    Ethics
    The Human Genome Project
    – Public versus private
        Public Servants,
        Private Masters
        Human Genome Project
        – Method (2)
        Truce
    Gene Patenting
    Blood Poems
    Holy-Moley-More God!

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