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Note from the author
exploring the project
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INTRODUCTION
CONTENTS
SEQUENCE ONE
SEQUENCE TWO
SEQUENCE THREE
SEQUENCE FOUR
    Ethics
    The Human Genome Project
    – Public versus private
    Gene Patenting
    Blood Poems
    Holy-Moley-More God!

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THE HUMAN GENOME:

POEMS ON THE BOOK OF LIFE

GILLIAN K FERGUSON

Ethics


“Genome sequencing for commercial gain is totally immoral and disgusting." Dr John Sulston, Leader, UK Human Genome Project


‘True is is Nature hides/ Her treasures less and less. – Man now presides/ In power, where once he trembled in his weakness;/ Science advances with gigantic strides;/ But are we aught enriched in love and meekness?’ William Wordsworth, 1770-1850, To the Planet Venus


We should read some more Greek tragedies. They show us that humans can’t always predict what the future is going to be, and that our arrogance and pride often lead to disasters.” Phil Bereano, Council for Responsible Genetics, US, 2000


‘Science! thou fair effusive ray/ From the great source of mental day,/ Free, generous and refined!/ Descend with all thy treasures fraught…’ Mark Akenside, 1721-70, Hymn to Science


‘Are human DNA sequence results used ethically? Ethical standards are determined by the societies in which we live. Some people feel that understanding the human genome at this level is morally wrong. However, most societies accept there will be benefits. Societies must recognize the ethical dilemmas that can be posed by new genetic knowledge. Such dilemmas include patenting, insurance, medical privacy, disability and genetic testing. One of the main reasons the Human Genome Project (HGP) announced the draft sequence was to try to increase the public awareness of this research and to try to engage as many people as possible in debate about how the information is used. An analogy might be to take a plough - in the Bible we read of swords being beaten into ploughshares. Is a plough intrinsically evil because it could be turned into a sword? No. It is an object of carefully suited function, quite possibly of beauty, that we use as we see fit.’ YourGenome.org


‘Wonder… and not any expectation of advantage from its discoveries, is the first principle which prompts mankind to the study of Philosophy, of that Science which pretends to lay open the concealed connections that unite the various appearances of nature.’ Adam Smith, The History of Astronomy, 1795


‘Contrary to common perception of scientists as dignified, objective investigators, they often play hardball with subjective zeal – especially when their basic premises are challenged.’ Charles Officer and Jake Page, Tales of the Earth: Paroxysms and Perturbations of the Blue Planet, Oxford University Press, 1993


‘Scientists themselves may have moral or immoral reasons for pursuing their research.’ John Carey, Editor, Faber Book of Science, 2005


‘…scientists are responsible for thinking through the social consquences of what they are suggesting. On these vast subjects, it is not possible only to be doing science. Science on this scale involves morals and politics as well.’ Mary Midgley, Science and Poetry, Routeledge, 2003


Science comes in her mineral robes


Science comes in her shimmering mineral robes,

embroidered with stars, constellations, jewelled


planets; shining equations for Gravity, Mass, Energy,

silver workings for Relativity - Time, Speed of Light;


her long black cloak of tissued night, swirling inkily

into pure blue - golden waves, prickling bees of her


coagulating thoughts, like insistent, irritated, junior stars

fizzing at her moving horizons. About her ivory and jet


brow, a diadem, intertwined silver and gold - Sun

and Moon set asymetric, speaking unknown words;


on her forehead the symbol of DNA, branded, spiraling,

even as symbol can never be quieted in metal, graphite.


Her black, white and gold aura dissolves into summer blue -

one foot in water, one in earth; garlands of flowers, greenery


about her neck; when she moves, seeds are written at her feet -

spelling the names of their Latin flowers; on her right shoulder,


a Minervan owl perched, but shaking, preening, picking feathers,

disturbingly shifting in species - peacock, sparrow, hoodie crow;


dinosaur, chicken, eagle - the owl hooting funereal musical notes,

but sudden thrush-song too - dancing tunes from a choir of atoms


magnified to mouthing pattern; sound smoking into turbulent air

storming about her head – lightning, evaporation of mists, clouds


clashing into hurting sunshine; and left, evening light coagulating

into wine, red as fresh blood, marking the sky with cross symbols,


sanguinous prints, clotting blackberry deep; calcifying into bone -

bread, barley sprouting like hairs on a head; but germs and insects


of disease speck and swim the sticky black, trailing images,

victims of their murderous natures, ruthless ingenuity - all


the creature children killed, who never were and never will be now.

An entourage of jostling creatures metamorphoses about her knees –


worms into apes, men; amoebae becoming, bats, birds, fish -

our ancestral shrew, and some things unrecognisable; beasts


in veils, glimpsed, hidden, flashing - leaking DNA in writhing

puddles that can never be washed, she says, without extinction.



In her hands, such shining instruments; hundreds in her million

branching fingers - her face a mask over energy, organic plastic,


modulation in the energy without conventional features - yet

she smiles seductively, then bares her bright feline shark teeth,


devilishly, wolfishly grinning - terrible and beautiful like a tiger

at your face whose beauty is total, dangerous and overwhelming;


her skin indistinct, fragmenting like river-skin, as impermanent -

showing flexible bones like a mercury scaffold; no fixed identity


holds her rigid, bound in time; her golden ropes - strings slipped over,

are spun from only moonlight and rainbows, illusory, human comforts


of delusion; frazzling, fraying even as she walks forward unstoppably -

disguised these ingenious snares by siren-singing, snapping shark-bark;


she shows the branded marks of shackles as the sign of cruel masters,

whom she slipped, leaving a reluctant snakeskin, shapeless as a cloud;


hungry, animal, yet displaying the most acute decorum, sensitivity -

she consults a golden tablet slung about her waist, though she chooses


nothing, she is susceptible to being judged; she refines, focuses,

hanging her breast with successes, the golden hairs of the saved,


healed; jangling her keys of discovery - access through heavy doors

of ignorance, measuring her atomic weight to make sure of treading


softly, wiring her enormous heart temporarily to this scientist or that -

you or me; she sends out electrical tendrils, like a Passionflower seeks


niches in a wall, sounding the human hearts, zebras and lions, mouse

too. She registers all this, informing the burning source of her energy,


endlessly looking for some pursuant radiance she cannot disprove -

or prove. She shifts in her robes, causing scintillation like a peacock;


ever restless, her nature is never to be at peace - for her that is death,

impossible though everything in the Universe be explained, revealed.


She feels command as magnetism, reigning her stallion muscle, twitch;

her hybrid spirit of inching precision and wild excess, ideas as giants -


unpredictable heart of an atom speaking to the orbit of enormous planets;

the life of one shooting star is written in the story of every man always -


as butterfly scales falling provide crumbling colour-molecules for future

people; what memories printed in the flying chromosomes. Lamb-calm,


her impatience is drugged with discovery - only for a moment slowed

in contemplation; there is nothing big enough that she cannot think it,


frame the question, if not the idea, answer. From her lips language comes;

she did not always speak like this, she says - once, many understood, were


listening, talked to her - despite her nature, she tried to walk hand in hand,

paw-in-hand, to listen, be as the wind, variable, not always wild, steaming


on; and she gels there a nano-second, her beauty, her best side more dazzling

than anything that can be looked upon; unownable as the earth, a flower, star;


her dark side as the daylight moon, turned surreptitiously into darkness –

there is a smell, burning of money; pursuit of money like rubber flaming,


fumes toxic, choking, blinding her eyes, which are present but unseen,

defying the laws of logic as in a dream; though swiftly they are human,


like slipping on a costume, fooling hardly anyone - human looking through

two black holes – creation and dissolution of light; she whispers her morals


are borrowed from wherever, whenever, whoever, calls her name; aliens

from another concept, leading her forward, tripping her up. She is called,


neutral she must be, as God must promote Free Will - whatever agony

it brings, though she feels nothing the same; her emotions are shadows,


exhilerations, moods, milestones – these are for others to cry, to enjoy -

in that she is pure, untouched; whoever clutches at her skirts, even those


who whisper in her ear and listen at her always-speaking mouth - her words

flowing from endless principle in action, in storage, in potentia; somewhere


lost in the fields of time or the organic forests destroyed - always she is called,

led forward, her moral compass cast in iron, pointing any way; even to dreams.



‘US President Bill Clinton and UK Prime Minister Tony Blair have issued a warning against the misuse of the map of the human genetic code. The two leaders said the genome project raised huge ethical and moral implications and should be exploited only for the good of humankind. Mr Blair warned it would be humanity's responsibility to secure the privacy of the individual's genetic make-up. And he suggested a possible reshaping of the welfare system may be necessary to take account of longer and more active lifespans….Mr Clinton pledged the US would support further research to complete the map and convert the knowledge into medical treatments. But he warned people must not retreat from their oldest and most cherished values, and must remember that such treatment should be for everyone, not just the privileged few. "The most important fact of life is our common humanity," he added.’ BBC News, 2001


‘The use of genomic information is not limited to the arenas of biology and of health, and further research and development of policy options is also needed for the many other applications of such information. The array of additional users is likely to include the life, disability and long-term care insurance industries, the legal system, the military, educational institutions and adoption agencies. Although some of the research informing the medical uses of genomics will be useful in broader settings, dedicated research outside the healthcare sphere is needed to explore the public values that apply to uses of genomics other than for health care and their relationship to specific contextual applications. For example, should genetic information on predisposition to hyperactivity be available in the future to school officials? Or should genetic information about behavioural traits be admissible in criminal or civil proceedings? Genomics also provides greater opportunity to understand ancestral origins of populations and individuals, which raises issues such as whether genetic information should be used for defining membership in a minority group.’ A Vision for the Future of Genomics Research, US National Human Genome Research Institute, 2003


Communal Script


Man Map. A communal script

written by the hand of Nature;


a story emanated from the mind

of God, if you believe this name


for such creative power, presence.

Principle of life written in genetic


codes – we are all as spies deciphering

the means of life; existing, discovered,


illuminated - described, discussed -

but not, ever, manufactured by man


or scientist as author, inventor,

patent holder; as slave master


presuming to enslave the concept -

authorial stamp, documents, letters,


not one word is spelled by man’s

intention, will; not one hair, nail


recipe, is his possession; scientific

bumper harvest for human farmer.


What is given and holy, exists free -

interconnected in the fabulous webs


of Evolution, of Natural Selection;

can never be owned - sold, altered


from gift, become corrupt – enslaved;

any more than a fish, star with a name.



‘It is not surprising that an idea should combine scientific and moral importance in this way…science is not just an inert store of neutral facts. Its facts are always organised according to patterns which are drawn from ordinary thinking in the first place (where else, after all, could they come from?) and which often rebound in a changed form to affect it profoundly in their turn. These strong pieces of imaginative equipment need to be understood and criticsed in both their aspects.’ Mary Midgley, Science and Poetry, Routeledge, 2003


‘While science itself is often regarded as being neutral, the application and products of research may not be. The way in which we use this knowledge has various implications that must be considered. It is up to all members of society to ensure that knowledge arising from scientific research is used responsibly and carefully.’ YourGenome.org


"The project now has to deliver on its great promises."  Professor Steve Jones, Geneticist, University College, London, UK


‘If people do not get to grips with such research then the new biotechnologies that are beginning to influence our lives so profoundly will forever occupy some esoteric, elevated niche, effectively out of sight. That would be a huge pity, for cultural and for political reasons. On the whole, the world at large deploys science and technology with little finesse - we seem to suffer many of their ill effects, without properly reaping the many possible benefits - and we will never do better unless people, meaning voters, consumers and citizens, have a feel for what is going on.’ Colin Tudge, Ian Wilmut, Keith Campbell, The Second Creation, Headline, 2001


‘The second principle was rapid and unrestricted data release. The centres adopted a policy that all genomic sequence data should be made publicly available without restriction within 24 hours of assembly. Pre-publication data releases had been pioneered in mapping projects in the worm and mouse genomes and were prominently adopted in the sequencing of the worm, providing a direct model for the human sequencing efforts. We believed that scientific progress would be most rapidly advanced by immediate and free availability of the human genome sequence. The explosion of scientific work based on the publicly available sequence data in both academia and industry has confirmed this judgement…’  HYPERLINK "http://www.nature.com/nature/journal/v409/n6822/full/" \l "International Human Genome Sequencing Consortium" International Human Genome Sequencing Consortium, Nature


“The decision for us as humanity is whether we are to engage in the right co-operation, across national frontiers, so we can shape our destiny in a way that genuinely does benefit all our people, that makes the most of the possibilities and faces up to the challenges and dangers it poses… We have to focus on the possibilities, develop them and then face up to the hard ethical and moral questions that are inevitably posed by such an extraordinary scientific discovery." Tony Blair, Prime  Minister, UK



We are the owners of everything science reveals


We are the owners of everything science reveals,

for at its heart is revelation


of what is -

invention is science’s child.



Exploration of the Universe

is human privilege -


scientists, mankind’s envoys

to the dazzling mechanics of the Universe;


its holy chemistries,

mysteries yielding plastic facts.



What hand and mind create

is our responsibility -


we are mother to all our monsters -

cygnets turning into ducklings, crows,


vultures, as well as shining swans -

gaudy baubles impersonating trophies;


stunning cures and wonders.

Advancement of learning


is neutral until humans are applied -

as tiger muscle hunts jumping gazelle


without cruelty or mercy, just hunger;

force and power of mutually evolved life.



Science is not a person, with personality;

psychology, emotion, heart - but an art -


precision, fact, being part,

but not its nature entire -


even the notion of fact

being flexible in her crucible


of time; plastic concept,

itself adaptable, lurking,


exposed - mistaken in the centuries

that are hours to the roots of Science;


her global and Universal arena,

her own relentless procession.


Dazzling, terrible, beautiful,

some of her truths are gold,


diamond, first elements,

branded on the world


until so many laws fall,

are bent by some greater creativity


than can currently be comprehended,

but in the strange logic, experience


of dreams - unspoken words

of the world we almost hear


at sunset; sight of star, flower or fish –

any movement of molecules


we can name, touch; but know,

thus, our knowledge is incomplete.



Science cannot be excised from life,

moral complication, discussion –


coralled, fenced, mined with defences;

charges of ignorance laid – inability


to comprehend is everyone’s problem;

the amorphous animal of society -


science cannot exist apart from the people,

context - its genetic mutation from benign


goddess metaphor to monster, abomination,

and a million shades of being in between,


has never been more possible, attainable;

more terrifying, admirable - exhilerating.



‘…Science then/ Shall be a precious visitant; and then,/ And only then, be worthy of her name:/ For then her heart shall kindle; her dull eye,/ Dull and inanimate, no more shall hang/ Chained to its object in brute slavery;/ But taught with patient interest to watch/ The processes of things, and serve the cause/ Of order and distinctness, not for this/ Shall it forget that its most noble use,/ Its most illustrious province, must be found/ In furnishing clear guidance, a support/ Not treacherous, to the mind’s excursive power./ - so build we up the Being that we are;/ Thus deeply drinking-in the soul of things/ We shall be wise perforce…’ William Wordsworth, 1770-1850, The Excursion


‘Continuation of the extensive collaboration between scientists and between funding sources that characterized the HGP will be essential.’ A Vision for the Future of Genomics Research, US National Human Genome Research Institute, 2003


“Science, illuminating ray!/ Fair mental beam, extend thy sway,/ And shine from pole to pole!/ From they accumulated store,/ O’er every mind they riches pour,/ Excite from low desires to soar,/ And dignify the soul…’ Sarah Hoare, 1777-1856, Poems on Conchology and Botany


‘From Avarice thus, from Luxury and War/ Sprang heavenly Science; and from Science Freedom…’ Samuel Taylor Coleridge, 1772-1850, Religious Musings


But the scientists warn that along with great promise, genetic advances also have serious legal, ethical and social implications. They caution that understanding and wisdom will be needed to ensure that the benefits are properly used. "We need to start talking with our governments and our legislators about what kind of protection, what kind of laws need to be written to ensure that this information is available to patients to benefit them but is not used to discriminate," said Dr Altshuler, a geneticist at the Whitehead Institute for Biomedical Research in the US.’ Row over ‘Book of Life’, BBC News, 2001



The wild spirit of science


Forever untamed, the wild spirit of science;

disguised as a robot - impartial, impersonal,


rarified, exact; nerdy but unquestionable other.

Primary source of answers to everything - life,


world, Universe; she dazzles, trembling with energy,

curiosity - swaddling in white coats, clinical settings,


her true nature; far more like a wild horse, jittering

on the plain - with no master but compulsive wind -


relentless urge for discovery, movement, propulsion -

such will to live, running, thundering forward, dragging


would-be riders, even as they slip, foot caught in her stirrups,

want to get off; blind to everything following – trees crashing,


undergrowth crushed, flowers trampled that were not seen,

savoured - saved in the discovery of weedkiller, benificent


to some. Her spirit is quivering and beautiful; nervous

pedigree – inbred, over-brained, incestuously nurtured


by too few for too short a time; yet she is shining,

her flesh and muscles move forward powerfully -


rippling out to the very sea and stars, this motion;

these marks on her skin tell of truths - poetry too.


Her clinical disguise is all in tatters now; even she

cries and sings at man’s discovery of the Genome.


Always her voice is convincing – we are so programmed,

brainwashed to believe in her as she appears in our midst;


after all, great tasks are as stepping stones laid before her feet,

over sickness, ignorance; but now her high pedigree - neurotic,


royal - unmixed with people, philosphers - poets, thinkers, artists -

requires careful treatment, kneading with other minds; sensitivities.


She needs firmness - not always given head to do exactly what she can;

we must contend with her pawing always in the blocks, regardless of us.
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