Prediction

‘Many cancers and heart disease are almost certainly influenced by genetic factors, so forewarning patients of their susceptibilities would allow them to make informed lifestyle choices and help prevent future illness. One key area of flagging up gene defects is the study of single nucleotide polymorphisms (SNPs). These are mutations affecting just one single base pair in a person's DNA. They may not cause a disease but may be a very effective signpost for a particular problem, which is why a consortium of major drug companies is spending £28m on tracking down hundreds of thousands of SNPs.’ What the genome can do for you, BBC Science, 2000

‘If you were handed an envelope with a detailed description of each and every one of your 40,000 genes... would you open it? A reading of your entire set of genes would be like the last will and testament of your parents. Find out what they’ve left you….and what you didn’t get. It could tell you things about your future you might not want to know. You could find out what illnesses you’re likely to get, which career you might be successful in, how long you will stay married. Even when you might die... and how.’ Gene Stories, BBC Science, 2003

‘Some people may wish to live their lives unfettered by knowledge of their genetic risk. However, in doing so they may place avoidable burdens of care on health services or on their carers. It could be argued, therefore, that it is antisocial to remain ignorant…We may have to adjust the ways we conduct our lives to accommodate our new-found capacity for self-knowledge at the genetic level. There may be new responsibilities to bear – the responsibility to adopt a lifestyle that compensates for our genetic frailties, for instance – and we will need to be alert to possible misuses of our new-found knowledge. In many respects, the completion of the Human Genome Project will be only the first step in a much more complex journey.’ Medical Research Council, UK

‘Understanding how genetic factors affect health is often cited as a major goal of genomics, on the assumption that applying such understanding in the clinical setting will improve health. But this assumption actually rests on relatively few examples and data, and more research is needed to provide sufficient guidance about how to use genomic information optimally for improving individual or public health. Theoretically, the steps by which genetic risk information would lead to improved health are: (1) an individual obtains genome-based information about his/her own health risks; (2) the individual uses this information to develop an individualized prevention or treatment plan; (3) the individual implements that plan; (4) this leads to improved health; and (5) healthcare costs are reduced. Scrutiny of these assumptions is needed, both to test them and to determine how each step could best be accomplished in different clinical settings.Research is also required that critically evaluates new genetic tests and interventions in terms of parameters such as benefits, access and cost. Such research should be interdisciplinary and use the tools and expertise of many fields, including genomics, health education, health behaviour research, health outcomes research, healthcare delivery analysis, and healthcare economics. Some of these fields have historically paid little attention to genomics, but high-quality research of this sort could provide important guidance in clinical decision-making - as the work of several disciplines has already been helpful in caring for people with an increased risk of colon cancer as a result of mutations in FAP or HNPCC.’ A Vision for the Future of Genomics Research, US National Human Genome Research Institute, 2003

Scientific and clinical omen

Scientific and clinical omen – soothsayers

of the laboratory, examining genetic runes,

computer entrails, crystal ball of sequence;

starmap of sparkling genes, future visions -

plotting a map for illness and health - death

and continued life; guide and dark harbinger

of such news that trembles men, or leaps

them in the air with the big joy of health,

which bursts into bloom, but unattended,

unremembered - a rose becoming daisy -

common as everyday, fades and shrivels

in the mind as bonus, good fortune, luck.

What psychic benefit and drive might come,

defence against the hopeless fate that caused

a man despair - grand larceny of days of pleasure

that were his to have; untroubled in a human state

of hope, in proper consciousness of present time;

the future an unmapped continent, but his foreign

country to explore in company of family and friends,

he might never have - everything now become dark,

with that optimistic light of men snuffed out;

now might he mend his damaging behaviour,

take action, adopt responsibility for himself,

make timely warnings, like those scared off

a boat or plane - serve to save his life,

create that future scenario, his theatre;

keep starring him in his own production,

surviving until other, better deaths come.

Imagine the story in the time of the Genome

Imagine the story in the time of the Genome,

which is holy in understanding the present -

implications and possibilities of the free past

and future; what complexities involving stars

and kings - birth of one rabbit in a field -

with doctor and poet picnicing under sun;

grape sugar, tetsi-fly - one starving child

upsets the whole world’s axis - shudders

leaves on every tree; each longing planet

in its far black socket, rattling molecules

in the skull, the writing of the red heart -

every incident ever, implicated in illness.

‘Genome studies demonstrate that many disorders have a genetic component even where the dominant influence is external or environmental. Much of the power of genomics lies in its ability to connect the occurrence of particular variations in DNA with medical disorders. In the simplest cases, just a single gene is involved and the ‘misfiring’ of that gene almost always results in the disease. Doctors knew long before genomics was conceived that conditions such as Gaucher’s disease, Huntington’s disease, cystic fibrosis and sickle cell anaemia had a genetic basis because it was clear that they ran in families. There are thousands of such obviously inherited illnesses, many of them severe. Fortunately, most of them are also rare. Modern genetics provides more accurate diagnostic methods for people who are at risk of inheriting these conditions and the prospect of treatment – through techniques such as gene therapy or the use of medicines – for those who have the disease. Genome studies also reveal, however, that many more common human afflictions such as diabetes, Alzheimer’s disease, stroke, heart disease, and asthma may have significant genetic omponents. Their inherited aspects have previously been obscured because many variants of many different genes may be involved. Environmental factors such as diet and hygiene, and/or social factors such as access to healthcare also influence the occurrence, severity, or detection of such diseases. Doctors and medical researchers plan to conduct large-scale health surveys that aim to correlate genetic variations and environmental factors with theoccurrence of common diseases. The world’s largest such survey – of half a million people – is already being planned in the UK.’ Medical Research Council, UK

‘The discovery of variants that affect risk for disease could potentially be used in individualized preventive medicine - including diet, exercise, lifestyle and pharmaceutical intervention - to maximize the likelihood of staying well. For example, the discovery of variants that correlate with successful outcomes of drug therapy, or with unfortunate side effects, could potentially be rapidly translated into clinical practice. Turning this vision into reality will require the following: (1) unbiased determination of the risk associated with a particular gene variant, often overestimated in initial studies; (2) technological advances to reduce the cost of genotyping; (3) research on whether this kind of personalized genomic information will actually alter health behaviours (see Grand Challenge II-5); (4) oversight of the implementation of genetic tests to ensure that only those with demonstrated clinical validity are applied outside of the research setting; and (5) education of healthcare professionals and the public to be well-informed participants in this new form of preventive medicine.’ A Vision for the Future of Genomics Research, US National Human Genome Research Institute, 2003

‘Third – and this is both a strength and a challenge – DNA-based tests can be predictive. Many current diagnostic methods confirm the presence of a disease by, for instance, detecting certain cell types or chemicals produced during illness. However, genetic tests often indicate that there is an increased or decreased likelihood that illness might occur in the future. They do not necessarily indicate the timing of the disease, its severity, or, indeed, whether it occurs at all.’ Medical Research Council, UK

‘The knowledge that decoding the human genome brings also questions existing medical ethics. If tests show that an unborn child will die of a painful disease in his or her teens, who should decide what should be done? And some argue that the whole achievement is over-hyped and that crucial areas of human life are more influenced by the environment in which we live, rather than the genes we inherit.’ Reading the Book of Life, BBC Science, 2000

Chemical Crystal Ball

In the revelation of the Genome,

chemical crystal ball, seer’s text,

omens written, portends, predictions;

obscured, murky, uncertain - perhaps

unavoidable since the first star

flinted to light - or navigable

by some formulated map, word

talisman constructed to thwart,

fool, amend; synthetic language

involving enormous continents,

circumstance, experience -

altered behaviour, esoteric

workings of luck; inexplicable

occurrences, poems of miracle -

so many possible stories, variant

themes writing towards The End.

‘The first use many new gene discoveries are put to is creating diagnostic tests. Over four million genetic tests are now conducted every year in US alone. For example, haemochromatosis is one of the most common inherited diseases and leads to high levels of iron in the blood. This can lead to organ failure and death by the age of 50. Previously, diagnosis was only possible by taking a tissue sample from the liver - a painful and risky procedure. Now, however, a drop of blood is enough for a genetic test and regular blood lettings and a careful diet can allow sufferers to live normally.’ What the genome can do for you, BBC Science, 2000

Each Drop of Blood is a Book

Each drop of blood is a book -

bible of life, holy Evolutionary

script; prescient but alterable,

pre-literate chemistry as art -

red chemical rune, biological

grail; her iron gates are fallen.

‘Four chromosomes out of 24 have now been decoded. Another human chromosome has been decoded completely by an international team of scientists. The genetic instructions held on chromosome 14 have been published online. It is the fourth chromosome to be fully read and is the location for more than 60 disease-causing genes, as well as two crucial immune system codes. The research could help scientists understand why some people are more likely to develop certain rare conditions including early-onset Alzheimer's.’ BBC Science, 2003

The genetic combinations for early-onset Alzheimers

are monsters lurking in the genomic gloom; terrifying

brain-guzzlers of lupine malevolence – but should we

personify them as the beautiful wolf, who preys to eat,

who slinks, grey shadow in wild twilight, golden-eyed;

these unseen forces - physical manifestions of cellular

activity; powerhouse genes misfiring, melting, rubbing

the script, blurring. Yes, I have seen in you these human-

hating aliens - new life forms inhabiting Genomic shell -

let’s track, hunt, take them down; eradicate their species.

‘A new report on the future of genetic testing is driven by commercial interests, not by health, GeneWatch UK said today. The report, by the Healthcare Industries Task Force will be published on Wednesday. Its draft annexes include industry’s view of how healthcare services might look in future. These include claims that everyone will know their genetic make-up from birth and that this will lead to people being treated before they become ill."Treating people who are supposedly "genetically predisposed" to future illness would massively expand the drug market to healthy people, perhaps for life. But genetic tests are poor predictors of most diseases in most people. This is a marketing scam, not a healthcare policy," said Dr Helen Wallace, Deputy Director of GeneWatch UK. "Industry has set out a false vision, based on an outdated view of how genes work. It is shocking that the Government appears prepared to publish this with no independent assessment of the claims”.’ Genewatch, 2004

‘…the only thing we know about some genes is that their malfunction causes a particular disease. This is a pitifully small thing to know about a gene, and a terribly misleading one…Wolf-Hirschhorn syndrome is so rare and so serious – its gene is so vital – that its victims die young…A mutated version of the gene causes Huntington’s chorea; a complete lack of the gene causes Wolf Hirshhorn syndrome. We know very little about what the gene is there to do in everyday life, but we now know in excruciating detail how and shy and where it can go wrong and what the consequence for the body is. The gene contains a single ‘word’ repeated over and over CAG, CAG, CAG, CAG…The repetition continues sometimes just six times, sometimes thirty, sometimes more than a hundred times. Your destiny, your sanity and your life hang by the thread of this repetition… the scale is this: if your chromosomes were long enough to stretch around the equator, the difference between health and insanity would be less than one extra inch. No horoscope matches this accuracy. No theory of human causality, Freudian, Marxist, Christian or animist, has ever been so precise. No prophet in the Old Testament, no entrail-gazing oracle in ancient Greece, no crystal-ball gipsy clairvoyant on the pier at Bognor Regis ever pretended to tell people exactly when their lives would fall apart, let alone got it right. We are dealing here with a prophecy of terrifying, cruel and inflexible truth. There are a billion three-letter ‘words’ in your genome. Yet the length of just this one little motif is all that stands between each of us and mental illness.’ Matt Ridley, Genome: The Autobiography of a Species in 23 Chapters, Fourth Estate, 2000

Physically Psychic Omens

Know thyself - but will we want such physically

psychic knowledge; mining ourselves for omens,

genetic harbingers of cruel death, early - imminent;

or our smug neighbour - smoking, hateful, corrupt,

morally bankcrupt, rich, to live for aeons, as decreed

by the genetic lottery - breeding bad morality genes,

fading compassion, kindness from the human pool,

in unfairly fittest, (unfittest) body. Or power to live

each day unto the utmost each hour - each minute

precious, clasped, grasped, wrung for stories, love

and beauty; compact experience, truncated dog years;

warned to furiously pursue the goals of life, prioritise

all gleaming things, slipping beneath oncoming waves

of everyday - living more in such bright-focused days,

vivid in their brevity like early springs, snowdrops;

gathering armfuls of flowers from the same earth -

because the time of gardening would be quick -

all seasons would run together with all weathers.

‘Genetic testing could be a tremendous boon for health care,allowing individuals to avoid or reduce the impact of genetic diseases. It might prove possible to shift the balance of healthcare expenditure in the country from expensive late-stage treatment of diseases to earlier diagnosis and prevention, and to provide better treatments earlier in a patient’s disease when efficacy could be higher. The medical profession and the general public must have realistic expectations of genomics. The development time scales for genetic tests are much shorter than those for treatments. New drugs, for instance, can take over a decade to develop whereas new diagnostic tests can be ready in a matter of months. The extended availability of genetic testing also begs the question whether individuals can choose to remain ignorant about their individual genetic heritage.’ Medical Research Council, UK

‘In order to fully read chromosome 14, scientists compared its DNA with the mouse and zebrafish genomes. The researchers found 1,050 genes on the chromosome. The chromosome itself contains 87.4 million base pairs or DNA letters. But this is the first time that scientists believe they have left no gaps in the genetic sequence. They have managed to find the location of not only specific genes that code for proteins, but also the start and stop signals for these genes. Roland Heilig, from the Genoscope-Centre National de Sequencage, France, led one of the teams behind the work. He told BBC News Online that researchers were delighted to have reached the gold standard on chromosome 14. He said: "The identification of disease genes will help us find out how diseases develop at a molecular level." Chromosome 14 contains two genes that are crucial in making our immune system work properly. Another 60 genes have been found that can cause disease when they go wrong. They include genes involved in early-onset Alzheimer's and an extremely severe form of Usher syndrome, which affects hearing and vision. Chromosome 14 is also the location for the faulty genes responsible for Niemann-Pick disease, a very rare but deadly condition. Developing treatments, like chromosome-specific drugs that could repair the damage in the genetic code, are a long way off but this work could help doctors screen for these genetic conditions.’ BBC News Online, 2003

Damage to the code

Damage to the code, each work affected;

desecration of new masterpiece - thrown

ink on the old Gallery’s main attraction -

ruined or capable of renovation, rescue;

even without the artist, his fibres, brush,

paint molecules re-set in motion – used;

healing his work, intervening, altering

futures with Godly mirrors, innovation;

peeling holy seals, revelation, bleeding,

which must be done with love, money

being inappropriate - Creation’s fabric

painted freely; work donated by Nature.

‘Dr Craig Venter, who in 2001 produced a "first assembly", or rough draft, of the human genetic code, has been speaking about one of his next goals: to produce personalised genomes on a disc. Dr Venter, who recently stepped down from his company Celera Genomics, will soon offer the service to anyone that can afford it. Speaking to BBC World Service's Science In Action programme, the scientist explained how the work is "a logical progression" and will change the way healthcare is managed in the future. "Within 10 years, before a baby leaves the hospital, their parents will have the essence of their genetic code on a CD," he said. Dr Venter plans to provide personal genomes on a disc in about a week for $712,000 (£400,000) from later this year. The step change that has taken place to allow superfast sequencing has come about through robotics and high-powered computing. But he is convinced the technology will continue to improve to speed up still further the process of reading an individual's DNA - and that the cost of doing so will also fall dramatically. He is convinced the service will "give people more control over their own lives". "If you know that you have a 30% increase risk of colon cancer from your genetic code then you can get checked much more frequently during your life," he explained. "Colon cancer, if it is caught early, is 95% curable. If it is caught late it goes down to 45%. So that gives people power and control over their own destiny." It is not just colonic cancer that could be detected. As our understanding of the human genome improves, Dr Venter believes a wide range of hereditary diseases could in theory be pinpointed early. Such information, he argued, could be a boon for all health-care organisations. Spending a small sum at birth to identify high risk individuals he claimed could eliminate costly and time-consuming treatment later. "Now we think that we can get the essence of the information or the sequence of the genes for one person in less than a week, for less than half a million dollars," he claimed. "As we push the technology and the number of people involved, we will drive that down." Meanwhile, a British company says it is close to perfecting a gene sequencing method that could read someone's genome in a day. Solexa's ultimate goal is to provide the information inside 24 hours for $1,000 (£562).’ BBC Science, 2002

‘Within 10 years, before a baby leaves the hospital, their parents will have the essence of their genetic code on a CD.’ Dr Craig Venter, 2002

‘GeneWatch UK welcomed today’s joint report from the Human Genetics Commission and the National Screening Committee, which considers whether every baby should have its DNA profile taken and stored at birth. The proposal, made in the Government’s White Paper on genetics in June 2003 has been rejected as too costly, of too little benefit and as raising ethical concerns.’ Genewatch, 2005

‘Tailor made drugs: It is estimated that adverse reactions to prescribed medicines result in two million people in the US being hospitalised each year - 100,000 of these die. The difficulty is that every human being is unique. And so, while a particular medicine may be effective for some people, it could be seriously damaging to others. The new  data about the human genome will begin to make identifying these groups possible. This would obviously save suffering but even if the drug is simply ineffective for a genetic group, considerable cost savings are possible. This approach is already in use, for example in the treatment of leukaemia, but it will only become of widespread benefit when testing is possible in a doctor's surgery.’ What the genome can do for you, BBC Science, 2000

Where surgeons blind

Where surgeons blind,

scientists learn to see -

beyond actuality -

flesh, hair, blood,

to impersonal beads;

chemistry glittering

with promise, intent -

potential stories, ends;

ruling the unique pattern of us -

individually woven and tailored.

We are the garment of the Genome,

wearing us as product of command;

warring lords fight for us,

the Genome is an army -

heroes, dictators and footsoldiers -

suicide and conventional bombers,

in the landscape of us;

our human geography,

where there is never peace,

where there never will be -

any more than shattering, kinetic sea

will one day rest listless on the shore.

But here, flags, treaties;

bells, warnings, alarms,

here X-ray eyes coming,

reading the closed book

before it is even opened,

before it is ever opened;

shutting spell, binding glue, ciphers -

poems that can be read out backwards

and thus destroyed -

recipes to be adapted;

light dawns on four billion brilliant years

of life’s delicate, chemical inscriptions -

written in the unassuming dark

for a million billion creatures,

expressed under the Sun -

in words of flesh and bone.

‘Many diseases respond best to treatment – through medicines, surgery, or chngesto diet and lifestyle – if they are detected as early as possible. Thus predictive tests based on DNA could have clear medical value. If you knew, for instance, that your genes predisposed you to, say, cardiovascular disease, then you could improve your chances of not having a heart attack in a number of ways: by sticking to a sensible diet, by taking regular exercise, by not smoking, or by seeking pre-emptive medical treatment. On the other hand, a bad prognosis may itself be a psychological burden to a patient, especially one unprepared for the information. Consequently, genetic testing must go hand in hand with counselling; diagnostic tests are rarely performed (even when technically possible) before treatments are available. As researchers compile a more complete list of human genes, and as they start to understand what each of them does, it may become possible to increase the predictive power of genetic tests. Even then, great care needs to be taken in interpreting test results. Genes can have a major effect in many diseases but the view that genes determine health outcomes is simplistic and wrong. Educators, medical professionals, politicians, as well as the general public will need to address any such misconceptions if genetic testing is tofulfil its potential in healthcare.’ Medical Research Council, UK

A virtual map continually adapting

to invisible factors; so little written

in genetic stone, but a sheaf of letters,

predictive cards continually shuffling,

re-writing the future in myriad ways,

possible outcomes, even certaintities

before Scientist X makes a breakthrough;

rainforest gives up another natural cure –

and the whole story can be re-written,

health map as a blurred amalgamation

of possibility, hot tips; definite mines

waiting where you should not step –

or explode unnecessarily but for warning

of a bad omen - from a tiger in the blood,

to the taste of one last glass of wine -

a mouthful of full-fat, schitzophrenic,

endorphin-buzzing, tooth-rotting, sugary

chocolate, melting assistance and defence.

‘Hope or hype - There is little doubt that the revelation of the human genome will benefit healthcare in the short and long term. But many of the treatments will be expensive and will do nothing to avoid the damage caused by viral and bacterial diseases. It has been suggested that a brave new world awaits us in which all ailments can be monitored from a daily mouth swab inserted into a DNA reader in our bathroom cabinets. But Dr Ian Purvis, UK associate director of molecular genetics at GlaxoWellcome, says: "It could be that like, a long time in the future, but that is based on the rather arrogant view humanity has that it will understand everything we find - and we never have in the past”.’ Dr Damian Carrington, BBC, 2000

Reading and understanding are not twins -

Reading and understanding are not twins -

brainbox and fool may read the same text,

one a Professor become, the other, dunce;

and neither interpret news correctly for all.

Shuddering possibilites for good and ill

have come - enormous change winkled

from our ancient, dreaming cocoons -

like star and planet recipes now floated

down to human hands - star factories -

moon cultures, brewed in black space,

primaeval pools; from the heart of water,

what error and blindness could transpire -

what light in the presence of radiant cure;

unfolding of new colours in this medicine.

‘GeneWatch UK believes that genetic horoscopes are a dangerous myth. Our concerns are: A bad strategy for health. Genes are poor predictors of common complex diseases in most people and targeting a minority of ‘genetically susceptible’ individuals is usually a poor health strategy. The health impacts of smoking, poor diets, poverty and pollution are not limited to individuals with ‘bad genes’ and require population-based preventive strategies (such as providing better sports facilities, healthier school meals and banning fast food ads to children). Undermining public health…The tobacco, food, chemical and nuclear industries also have vested interests in promoting the idea of ‘genetic susceptibility’ to cancer, heart disease, obesity and diabetes. Genetic tests can shift the blame from unhealthy products or pollution to the individual with ‘bad genes’. Promoting genetic testing wrongly implies that reducing pollution, smoking or obesity is important only for a minority of people.’ Genewatch, 2006

‘WATTS: “But the genome is much more than a window on our past - it's about finding genetic clues to real diseases and designing drugs for real people. Perhaps even personalising medicine - moving away from the one-drug-suits-all approach. Eventually, for some scientists, it's about making a decent profit too. Some of this profit will come from scientists search for genetic differences between people. Single letter changes - "snips" - in the 3 billion-letter code. These changes provide clues about how susceptible we each might be to disease…”. DR DAVID BENTLEY, Head of Human Genetics, The Sanger Centre: “A snip is a single alteration in one letter of the alphabet between two individual copies of the human genome. The recent discovery has been mapping out of some two million of these snips across the genome, scattered throughout all our genes. The tremendous opportunity this provides is to begin to look at how these variations between individuals are responsible for disease, how we react to our environment, drugs and so on…”. WATTS: “It's not just the drug companies but each and every one of us who will find our lives affected in some way be the project….” BALTIMORE: ‘It's going to affect everyone in the world because the way we do medicine, the ways we think about intelligence, the ways we structure our educational systems - all those things are going to be affected by our understanding of the human genome”.’ Newsnight transcript, BBC TV, 2001

The living grammar of the body corrected

Hauled from potentiality, computer theorem

to genetic tool – medico-chemical artistry -

actions on skin and bones; a literary metaphor

manifest, exuding cure, exorcising malediction,

muttering incantions at the root of prayer;

wiring intention to practical intervention -

where sentences are flesh, words skeleton;

the living grammar of the body, corrected.

Primitive Sophisticate

Coagulate the Genome’s revelation,

letter treasury - elementary shining

nature. This primitive sophisticate,

stirs her secret mixtures - fabulous

chemicals, paints and erudition.

She writes the Olympian athlete

as a horse galloping - old woman

stooped as the autumn sunflower;

make hard her earth, iron, coals,

minerals, diamonds, mined gold;

make her sea cells hearts, blood -

as life’s first Philosopher’s Stone.

"The greatest impact, most quickly, of the human genome data is the ability to identify new targets upon which drugs can act.”  Dr Ian Purvis, UK Associate Director, Molecular Genetics, GlaxoWellcome, 2000

“Now we can look down the list of genes and see which one is causing the problem.” John Burn, Professor of Clinical Genetics, Newcastle University, UK

‘Brand new drugs - Targets are what drug companies call the parts of biological molecules they attack with drugs to fight disease, and  the human genome information looks like providing more targets than any shooting gallery. Currently, the knowledge of human molecular biology is such that the targets are counted in hundreds but the genome promises thousands. This approach, disabling harmful molecules, matches most closely the current research practices of the large pharmaceutical companies, and so this is the area which most excites them.’ BBC News

“Doctors will find it much easier to advise us on our environment and our lifestyles.” Dr Peter Little, Geneticist, Imperial College, London

‘Research into human genetics is being limited by a lack of knowledge in other areas of science, say delegates at the Seventh International Human Genome Meeting in China. Professor Lap-Chee Tsui, outgoing president of the meeting's organiser (Human Genome Organisation - Hugo), says that our poor understanding of even basic human anatomy means that the human genome project is not delivering cures for genetic diseases as was hoped. Some genes that cause inherited diseases have been known about for more than a decade but expected cures are still a long way off. The study of pharmacogenomics - developing drugs based on our genes - will continue to progress, and Professor Tsui says he expects that by the time Hugo meets again next year, scientists will be closer to finding new treatments for some infectious diseases. The gene for cystic fibrosis was discovered in 1989. But 13 years later, scientists are only slightly closer to finding treatments, let alone a cure for the condition... Despite about 2,000 laboratories around the world studying lungs, scientists still do not know enough about them to be able to find out exactly what the faulty genes do. ..Professor Lap-Chee Tsui, from Montreal University, says the genome can be used in studying infectious diseases. "There are people resistant to Aids infection because of sequence changes in the genes," he said. This suggests that other people will be genetically resistant to diseases like malaria and hepatitis. As our understanding of these diseases increases - for example, knowing exactly what they do to cells at a molecular level - it will be possible to use the human genome project data to create new treatments. ..Hugo is a forum through which the world's scientists can collaborate as they work to unravel our genetic code, and allows them to discuss some of the social, legal and commercial issues that spin off that research.’ BBC News, 2002

The Secret Dark of Us

Written in the secret dark of us -

hot red flesh-nest; now plotting,

developing scenes, scenarios,

where even surgeons blind -

now shown by shocking light,

hideous stories of old disease;

horror comics scripted centuries

ago, myth and legend, morality

play; oral storytelling, fairy story

of cancer miraculously thwarted

by some poem of other genes -

as white knight in the Genome.

Drawn, chalked, preserved

in the primitive cave of us;

shuffling, change, embellishment,

in refining art of self knowledge -

mysterious autonomy of cells -

pamphlets reading themselves;

books where stories are known

but never told, related, voiced -

books never to be opened,

pages healed over by time;

possible stories like that novel

everyone is supposed to have

inside, never materialised;

books read only by wind -

fluttered that birdish way,

but left incomprehensible.

And engraved, black words,

dark poems in deeper black;

terrible script that must be read -

seen, annunciated, spoken aloud;

cannot be scrubbed with care,

or love, like old crusted blood.

‘Human genome: Instructions needed to make a person - Soon everybody could have a personal copy of their complete genetic code, for medical reasons or perhaps curiosity. A British company says it is close to perfecting a gene sequencing method that could "read" someone's genome in a day. Your complete code is kept confidentially with the rest of your medical records.’ BBC News Online, 2002

Poem of me rendered without art

Here is the poem of me,

rendered without art -

not even the classic X-Ray

design of skull and bones -

appealing physical mystery

of Leonardo’s da Vinci’s

universal birdman diagram -

but pure instruction; pristine,

unadulterated, revealed,

for the ornament of me,

vivid garment of flesh,

extant proof of action;

processes, replication -

map with a zillion clues

to my untrod physical path,

likely occurrences en route;

the hand pattern held

in my realised hand -

omen of arthritis scripted

in a flexible green bone -

autumn pigment in white;

the dust in starred bones.

‘Sequencing the first human genome took more than ten years. Yours may take only 24 hours. Budding biotech firms are poised to make instant genomes a reality. In future, researchers hope to offer tailor-made medicine based on patients' own genetic sequence. To do this, "Existing technologies don't really cut it," says Eugene Chan of US Genomics in Woburn, Massachusetts. Chan's is one of several companies hoping to bring about personal genomes with methods that could hugely accelerate the process by which DNA letters are read. The techniques are to be tested at a next-generation sequencing facility in Rockville, Maryland, for which plans were announced last month.’ Nature magazine

‘In the field of human genetics, much continues to be promised, but little has been delivered. Considerable investment is being made in the search for genes linked to susceptibility to common complex diseases, despite evidence that environmental, social and economic factors are much more important.’ Genewatch, 2006