Discrimination/Work/

Insurance

“In the whole world, there is just one state in the US which has passed laws preventing employers asking potential employees to divulge genetic information or even take tests. And in the UK, the disability anti-discrimination legislation specifically excludes those with gene defects, unless they are already ill.”  Professor Sheila McLean, Professor of Law and Ethics in Medicine, University of Glasgow

"Genetic discrimination is more than wrong, it's a life-threatening abuse of a potentially life-saving discovery." Bill Clinton, US President

‘In the future, it is hoped that everyone will be able to know about his or her own genome. People will know which diseases they are most susceptible to, and which medicines would be best for them. They may know what their chances of having children with particular conditions are, given their own genome and that of their partner. Although this sounds like a good idea, it might lead to discrimination against some people, because of their genes. For example, some people may find that they can't get medical insurance because they are likely to suffer from a genetic disease later in life. It is up to all of us to make sure that this sort of discrimination does not happen.’ YourGenome.org

‘In March 2005, the Government published a new agreement with the insurance industry (the ‘Concordat’) on genetic testing. The agreement includes a five-year extension of the existing voluntary moratorium on insurers’ use of predictive genetic test results, until 1 November 2011. However, the moratorium remains partial, temporary and not legally binding. The Concordat also accepts that insurers will have the right to use genetic test results in underwriting decisions in the future, provided the use of each test is approved by the Genetics and Insurance Committee (GAIC). The insurance industry is preparing an application to GAIC to seek access to the results of tests for mutations in the BRCA genes, which indicate a high risk of a largely inherited form of breast cancer, and an increased risk of ovarian cancer, in some women with a strong family history of these cancers. If approved, test results would initially be used only when an individual applies for a high-value insurance policy (for example, over £500,000 of life insurance). However, once the moratorium has ended, the industry could seek GAIC-approved genetic test results for any value policy. Research by the charity Breakthrough Breast Cancer, published in September 2005, found that many women with a family history of breast cancer might not take the BRCA genetic tests if they had to reveal the results to insurers, and that most women disagree with the use of genetic test results to set insurance premiums. There is also still no legislation in the UK to prevent employers using genetic test results to decide who gets a pension or a job. The health claims made for genetic tests remain unregulated; however, the Human Genetics Commission has re-established its Genetic Services subgroup and is committed to a meeting to discuss direct-to-consumer genetic tests in 2006.’ Genewatch, 2006

"Women concerned that they may carry a gene which puts them at high risk of developing breast cancer are likely to be amongst the first to have to weigh the value of having a genetic test against the risk of discrimination.  Deciding whether to have a test is a very complex decision, particularly as those identified as high risk face many further difficult decisions about how to reduce the risk of the cancer developing. It is unacceptable for any woman and their family in this position to have to take on the additional stress of worrying about the impact a genetic test could have on their employment and insurance prospects". Anna Wood, Policy & Campaigns Manager, Breast Cancer Care, 2006

Who could not read the writing on the wall -

even if the words are still indistinct, shifting;

changing their meaning, statements, ideas.

Even as you watch - one mouthful of food

could change the universe, take your life

in one unalterable deletion - or enhance

your chances of survival; working deep

in the subconcious genes - re-writing -

scribbling, composing new poems – lines -

progression of sentences even as you speak.

Who on earth will be qualified enough to judge

such enormous circumstances, genes pertaining

to one entire life, whole person; who but

God could see the whole mosaic, picture.

‘In October 2004 the US Secretary’s Advisory Committee on Genetics, Health and Society heard testimonies from those who had suffered genetic discrimination:"We're given a choice: protect their health or protect their livelihood." Phaedra Malatek fears for the future of her two children. "We put off being tested for 10 years because of what the physicians recommended because of the potential discrimination. Countless women in my family during the last 10 years have been diagnosed with breast cancer, and several of them have lost their battle." Paula Funk, mother with breast cancer. "I am taking steps to keep myself healthy and to prevent cancer in the future, and I am being singled out and made to feel I am a liability." Tonia Phillips. After tests showed she was at high risk of ovarian and breast cancers she had a hysterectomy and a prophylactic mastectomy. She was in the middle of reconstruction when her company asked her to leave their insurance scheme. "I was told by the HR manager not to tell my boss about my hemophilia or I would never be promoted or trained. Consequently, all future bleeding episodes had to be hidden from him." Phil Hardt. His family were denied insurance after he was diagnosed with Huntington’s Disease. His testimony outlined the consequences of fear of discrimination: reluctance by those at risk to participate in research; delays in seeking medical and mental health care; Lack of open communication between parents and at-risk children regarding how best to prepare; Misdiagnosis or wrong choice of medication because of lack of honesty with doctors.’ Genewatch, 2006

What business that relies on risk will hold

off looking in genetic crystal balls; at signs

written in the genes, yes - but simplistically

interpreted - unless all insurers take a PhD

in Human Genetics, or become fake deities

with some artificial means of omniscience.

Everyone has something wrong with them -

the luckiest are the ones unmarked, looking

reasonably intact; containing no bad rhymes

for horrible disease that might get them later.

And if this fate is inevitable, shouldn’t we be

glad to pay more for them? Being that there,

but for the grace of fortuitous genes, go I -

if my own genes are badly affected by life,

environmental pollution, or mutate, change,

should I not receive such care from others -

who are all in my boat; all paddling against

the tide of health and fortune, age, sickness.

*

Look into my genetic crystal ball, my dear -

no harm done if you don’t like what you see,

I won’t ask; no, no, it’s just for your own good.

Be prepared, that’s my motto, so just you relax;

this could mean treatment you and your family

need, at the most beneficial time - don’t worry,

just look right in, there in the mists.Yes, I know

it’s not all that scientific - because we can’t see

everything, all the circumstances, complexities

of each human being - environmental factors -

what subtle shifting might switch these genes off

or on, shift, alter the outcome, affect your health -

but we’re insurers, we want to help people, reassure;

what other motive could we have - honestly - look…

‘GeneWatch UK warned that today’s new voluntary agreement between insurers and the Government is not sufficient to prevent genetic discrimination. "This agreement is a cop out by ministers, who have failed yet again to adopt a principle against genetic discrimination. It prevents insurers using most genetic test results, but only for another five years," said Dr Helen Wallace, Deputy Director of GeneWatch UK. "People making the difficult decision whether to take a genetic test need to know that the results will never be used against them in the future. They should not have to think about the impacts on insurance or their job". The main limitations of the new agreement are :it does not remove uncertainty for people taking predictive genetic tests, who will still not know whether they will be refused insurance after 2011; it does not prevent employers seeking access to genetic test results. "If the Government was serious about preventing genetic discrimination it would introduce new legislation to stop insurers and employers using genetic tests to decide who gets insurance or a job," said Dr Wallace.’ Genewatch, 2005

"I am concerned that there are some who will want to use this new knowledge as a basis for discrimination." Dr Craig Venter, Chief Executive, Celera Genomics, US

“We need an international agreement that genetic information needs to be obtained by consent." Arthur Caplan, Pennsylvania University Bioethics department, US

“The use of genetic information in employment is a clear breach of human rights. Genes should not be a factor in who gets a job and who does not: we think such discrimination should be unlawful.” Peter Purton, Disability Officer, TUC, 2006

Writing on the forehead

What was hidden, coming into light;

the genetic writing on the forehead -

abominable branding of the human being

like Jewish number and star still burning

with injustice in heaven; numbers, shape

smouldering - tended by dowsing angels,

songs sung continuously; what healing

can ever be complete - erasure of time

as concept - illusory passage - will not rub

such suffering from the pages of the world.

Earth is stained by so much needless blood;

no word should be allowed upon the heads

of children by the hand of science - on men

and women, unless the aim is just assistance,

alleviation of future suffering; if gambling

lies at the heart of the insurance industry -

then why not a blind lottery; some will stay well,

others succumb to illnesses that nobody wants -

this knowledge must be only theirs and God’s -

doctors, family, helpers, but never compulsory.

Testing should be to help the ordinary human being,

not discriminate against him for not being immune

to every ailment known; and interpretation of nurture,

genetic writing interwined, is like Victorian explorers

deciphering hieroglyphics at the newly opened tombs –

a man’s whole life, risk, could not be stated absolutely

with such imperfect knowledge - his supposedly predestined

score, life’s lottery ticket printed by amateurs; discriminated

against for having bad luck manifested in flesh – behaviour;

instead of extra assistance, postitive influence on vulnerable

genes, help with his personally concocted recipe, to shine,

overcoming disadvantage, unasked family mantle, legacy

of millennia that gave some the film star face - others the ugly

mug; which might yet be more loveable, against all prediction.

"I should not have had to spend the better part of six months wondering if the decision to have my children's genetic status verified …was a huge mistake." Heidi Williams, US – (her children, carriers of a genetic liver disorder, were refused insurance despite the fact that medical research showed that with only one symptomatic parent, not two, they would not suffer symptoms).

"Unreliable tests claiming to be able to predict a person’s risk of developing Alzheimer’s disease are already being marketed in the USA. Allowing employers or others to discriminate against people with a known genetic predisposition is not only unfair, but unjustifiable. We campaign for legislation to outlaw discrimination on the grounds of genetic characteristics." Neil Hunt, Chief Executive, Alzheimer’s Society, 2006

‘One of the most far-reaching consequences of decoding the human genome is likely to be the ability to predict people's susceptibility to particular diseases. In the future, a quick analysis of your DNA could reveal a 28% chance of heart disease by the age of 55 and a 53% chance of Alzheimer's disease by the age of 75. But what use will be made of that information, particularly for those with high predicted probabilities of illness at young ages. For the individual, lifestyle changes could make the future significantly brighter. But will employers harness the same data to block jobs for those with a less favourable genetic inheritance? Would a genetic predilection to alcoholism count against an applicant, even if they were not alcoholics?’ BBC News

If you ain’t moderate by nature

Granny’s old adage of ‘Everything in moderation’

ain’t much good if you ain’t moderate by nature -

not like these freaks who ‘just like the one’ drink,

only smoke on Holy Tuesdays at the Full Moon -

eat two squares of chocolate, three sweets - but save

the rest; and if I do get the inclination to overindulge

in all these under control - how the genes will burst out

in cups of coffee, satsumas, strings of organic liquorice!

The original prints of my behaviour

I remember seeing the original prints of my behaviour,

anxieties, talents, in you, my parents - the recognition;

and see them now replicated down the years in my son -

astonishing, this genetic photocopying, sharing, blurring,

shifting, maintaining elements in this novel combination;

even astounding details - drawing hands, squeamishness,

recall, spelling, sunny disposition with storm clouds looming;

so preserved - cherished by the Genome for God knows what,

or why; as if some dance or pattern, vast beyond comphrension,

exists, or is written - with aspects rubbed out, rewritten, deleted.

‘In pledging not to use genetic data for personnel decisions, Caroline Kovac, General Manager of IBM Health Care and Life Sciences said that genetic testing will be "extraordinarily valuable to medicine. But it can’t happen if patients don’t have a high degree of confidence in the privacy of that information”.’ IBM’s Smart Stance on Genetic Testing, Business Week, 2005

‘The temptation for insurance underwriters to use genetic test data to raise, or lower, premiums for customers has also been a high profile concern. In the US, people have been dropped by their insurers from health cover plans, following adverse genetic tests… US federal law now bans the discrimination on the basis of genetic tests for those in group plans. In the UK, strident opposition to the use of genetic testing in insurance underwriting has also led to firm, though voluntary, guidelines. The Association of British Insurers (ABI) code of practice states that results of genetic tests already performed can be asked for but can only be used in underwriting if judged by the Genetics and Insurance Committee to be "reliable and valid for insurance purposes". It further states that companies cannot ask a person to undergo a genetic test. Adherence to the code of practice is a condition of membership for the ABI, which represents 98% of the UK's insurers. And, unusually, it states companies cannot offer lower premiums for negative test results. This runs counter to normal underwriting practice. However, insurers consider it is necessary to allay public concern that an uninsurable genetic underclass may develop if the industry were to seek out the "good" genetic risks by offering them cheaper insurance. The suggestion by some independent experts that fears over insurance is a non-issue has been bolstered by mathematical research. This shows, for a gene conferring a risk of Alzheimer's disease, that the extra healthcare costs are just 10 to 30% for carriers. This is less than for risks already ignored by insurers such as playing sport. However, there is the possibility of short-term discrimination, says one observer: "In the end, pretty much all of us will have something wrong with our genes and so the risk will even out.” But, just now, we only know about some of the gene abnormalities and so those people will be stigmatised.’ Dr Damian Carrington, BBC News Online

How long can it last, this truce with duty,

this celebration of the Spirit of Insurance,

overcoming the obvious equation;

if someone is a much higher risk -

will cost lots more, how long before

they pay more, or cannot be insured;

genetic pariahs, insurance outcasts,

left to the mercy of burdened state.

People with heart conditions already

find travel cover hard to get, smokers

pay more for their deadly addict-habit;

certain family histories are expensive -

how long can this unlikely honour survive -

counter-intuitive, irrational, very surprising;

the lovely argument that risk will even out

as everyone is found to be a genetic mutant

at heart, in some way marked, defective,

with their own little time bombs ticking.

‘As a human, nothing is more fundamental to your biological being than your DNA. Which is why sequencing the entire human genome simultaneously offers such high benefits and deep dangers. No-one is claiming that new treatments for disease are a bad thing, but there are people who are seriously worried whether all of society will reap the greatest benefit possible from biology's crowning achievement. If the agenda is set by short-term commercial goals, it could be a recipe for a nightmare. Many ask who will own humanity's code for life and whether its exploitation will be for private profit or public health. Others are concerned about the ethical implications of being able to read your biological blueprint, with all its possible predictions. Still more are asking whether employers or the insurance industry will harness gene testing to the detriment of a genetic underclass.’ Genome: Rights and Wrongs, BBC Science

The UK National Health Service is one of civilisation’s

greatest accomplishments - must never be surrendered -

but supported, nourished, grown; yes, we’ll pay more,

in case it’s us - poleaxed by accident - feeble, hurt, ill;

if it is our genetic inheritence that is writing the future

of mind and body - with endings we would not choose.

Everyone must say: There, with the Grace of God, go I -

I will walk in your genetic shoes, which could have been

mine. Though warnings gather, croaking crows in new fields;

even personally, I remember how we starved - suffered when

those who escaped the same probability of this unfair fate feasted -

enjoyed the fruits of freedom, luck, in light when we were dragged

down to awful darkness, our hands outstretched, because no help

was there for a genetic illness that is nobody’s fault at all - unless

you blame the lizard crawling out of the swamp, how he might

have looked too long at the moon, tasted too many wrong flies;

what overdazzling molecules survived from the birth of stars -

Earth, inside this brain to burn at arcane signals, making a pyre

of short-circuiting, wrongly-connecting cells. Whatever the story

could be written of a Genome coming to here, any person’s point,

they are brother and sister still; kindred through all the chapters

of Evolution - each life drawing a lottery ticket with equal odds.

Here is my physical story

Here is my physical story, as it is written now -

this face and brain, body; configuration of cells

seen on the outside, some unconscious but working.

Am I plumper or thinner just now - smooth-skinned

or growing lines, skin words and verbs telling life’s

story; how awful to see those faces speaking sorrow

in the downturn of a mouth - printed St Bernard eyes.

Before you is this chapter, this verse in present space,

but who knows what writing works within the dark,

which letters wake, or stretch - will express in flesh.

What you see might not be what you get, or want;

pinballing messages already zap about their tasks -

crossed lines, mistakes, mutated, scrambled codes -

what mercy shall I have before my genetic destiny;

so listen to all my story, original, starrily fantastic;

let me perceive such a difficult beauty, with grace.

‘Government scientists are to conduct a major inquiry into the potential misuse of genetic information - now that the jigsaw of the human genome has been mapped out. A priority for the Human Genetics Commission will be to determine whether insurance companies should be allowed to base clients' premiums on risks calculated from genetic information. This could create an underclass of people who will never be employed. The commission, which advises the government on the social impact of developments in genetics, will also investigate the potential for job discrimination based on employees' genetic make-up. Pilots, for example, could be genetically screened for the likelihood of suffering a heart attack. The announcement on Monday was hailed as the greatest achievement in human history, comparable to splitting the atom. …Commission chairwoman Baroness Helena Kennedy QC said issues would arise because of the ensitive and intimate nature of information that can be identified from an individual's genes. "It enables people to have predictions made about their propensity to disease," she told Radio Four's Today programme. "There are concerns over where this information is kept and what use it is put to."… Government ministers are believed to be concerned about insurance companies using genetic tests to raise premiums if the information suggests possible health problems. At present, companies only ask for results of tests that have already been taken but there are fears that insurers will insist on genetic tests. Baroness Kennedy said there would have to be a balance between the interests of the insurers and the human rights of the individual. She said the genome project also raised employment issues. She said people may like to know that an airline pilot does not have a propensity towards heart attacks, but genetic testing in other areas could be considered invasive.’ BBC News, UK

Signatories to Joint Statement of Concern: Organisations: Alzheimer’s Society; Breast Cancer Care; Breast Cancer UK; British Council of Disabled People; Corner House; Corporate Watch; Disability Awareness in Action; Disability Rights Commission; Fire Brigades Union; GeneWatch UK; Human Genetics Alert; Independent Science Panel Institute of Science in Society (ISIS); Liberty; Macmillan Cancer Relief; MEDACT; National Union of Journalists (NUJ); Privacy International; Royal Association for Disability and Rehabilitation (RADAR); Scientists for Global Responsibility; Scottish Breast Cancer Campaign; Statewatch; The Work Foundation; TUC; UNISON; Women’s Environmental Network.’ Press Statement, 2006

‘This extraordinary march of human understanding imposes on us a profound responsibility to make sure that the age of discovery can continue to reflect our most cherished values. We must protect our citizens' privacy - the bulwark of personal liberty, the safeguard of individual creativity.’ Bill Clinton, US President, to the American Association for the Advancement of Science

Genetic espionage

Genetic espionage, enforced testing, iron prediction;

an unemployable underclass - uninsureable, marked,

damaged before any evidence - timebombs on legs -

genetic division of society - discriminated against -

humble, bumbling underclass, made to feel inferior.

Discriminators, genetically acceptable, judgmental;

able to pay for genetic germline engineering, eugenics.

Able to feel superior, until more advances and research

in genetics finds them weak, susceptible, unemployable.

Nobody is perfect, it’s said, and genes would agree;

their miracles can be disturbed - magic turned awry,

but the Genome always tries to advance - get better.

Martyr to my Genes

I would volunteer that I am genetically unsuitable for work,

naturally preferring, for genetic reasons, to stay in bed late,

(especially in winter); and again, with a genetic propensity

towards disorganisation, stressful perfectionism, boredom -

fatigue caused by that same boredom; and dislike of orders

from bossy people of dim intelligence, no sense of humour.

Oh, the strain, but what can I do; that’s genetics for you.

All this, combined with my genetic preference for peace,

travel - lounging on the sofa watching TV, it’s probably

much less bother for society - and myself - if I just stay at home,

do nice things, letting those genetically predisposed to hard work

get on with it, unencumbered by the likes of me, bravely passing

time with more pleasant pursuits, to which I feel inclined -

galleries, eating, painting, writing, and admiring the view;

uncomplaining slave to predilections: martyr to my genes.

Are there not already genetic underclasses

Is there not already a genetic underclass; underclasses -

The Fat who can’t eat much before becoming blubbery;

or who can’t stop eating - greed as addiction, illness,

no matter what opprobrium faced, snickering, disgust.

The Ugly, no matter what good they do; talent, personality -

wit, intelligence, never enough to escape the judging sweep

of eyes, press-bank flashing eyes, entering parties; clocking

that word ugly in a stranger’s mind, so passively registering.

Women - discriminated against, badly paid - unequally

paid; slaves to size, food, age, society’s wonky values.

And Children - hardly anyone listens to what they think,

even apologises when they bash them accidentally with

shopping bags; voted to give them the same protection

under the law from assault as the adults who hit them -

always told to shut up - discriminated against by grown-ups,

restaurants; and their easy joy squashed, innocence polluted.

‘Our unique genetic endowment, together with our unique life experiences, interact to produce our distinctive and unrepeatable combination of physical and behavioural characteristics. I have a G to A transposition at point 380 of my FGFR3 gene: it causes my achondroplasia, or restricted growth. This mutation occurs around once in every 15,000 births. It's an example of the way in which the genetic lottery makes us all different. I'm not the only one with a mutation. Everyone has around 100 mutations in their personal genetic code, even if they appear at first sight to be entirely 'normal'. We are all genetically distinct. Sometimes small differences cause big problems. At other times, differences just contribute to the diversity of life. When it comes to disability, genetics is actually a small part of the picture. Only about 1% of births are affected by congenital abnormality, while about 12% of the UK population are disabled. The idea of reducing the number of people with disability through ‘genetic cleansing’ is flawed. First, we are all genetically damaged and second, there will always be people disabled as a result of accident, disease or the ageing process. While disabled people have always faced discrimination, there are worrying signs of increasing discrimination on the basis of genetic differences. People who choose to continue pregnancies affected by genetic disease are facing blame for their decisions. Healthy people who have genes predisposing them to illness may not be able to get insurance cover. There are fears that, in the future, employers will use genetic tests to help pick the best person for the job. Societies and lawmakers need to stand firm against these new forms of discrimination. People are not responsible for their genes, and they should not suffer additional social burdens because of any misfortunes which are beyond our control. If we don't take care of each other and treat each other fairly, we may risk the emergence of a 'genetic underclass'. Throughout human history, people have influenced what genes their children inherit through their choice of partner. With our new DNA knowledge, we have the potential to screen pregnancies and IVF embryos to avoid the birth of disabled children. These powers of prediction and selection raise difficult dilemmas. It may be appropriate to avoid the birth of a child with a terminal disease, but is it right to use the same technology to avoid the birth of girls? Can we draw a line between this 'designer baby' approach, and allowing those who can afford it to exercise 'consumer choice' over the characteristics of their future children? If parents can effectively choose the genes of their child, then perhaps they will be increasingly blamed for making the wrong choices. IVF pioneer Bob Edwards has suggested that in future it will be a 'sin' to have a disabled baby. Bio-ethicists suggest that the choices of parents have to be balanced against the rights of a potential child. In our brave new world, your responsibility for your children begins before they do.’ A personal perspective, Tom Shakespeare, BBC Science, 2003

Go back to the stars and sue

Go back to the stars and sue – the American culture of litigation

is already infecting further shores; how long before parents sued

for bringing someone into the world without perfect teeth or hair -

immaculate knees; they’re already suing grass for causing allergy,

sea for painfully salting eyes; the woodlouse that survived, when

others more beautiful, sophisticated, lapsed into genetic silence -

for scaring, making their hearts more susceptible to disease, attack.

This flower is being sued - for being so beautiful she caused a tear

to smudge make-up done by one of Hollywood’s top make-up artists;

Mother Nature is being imprisoned, I hear - for making George Bush

feel mildly uncomfortable at a world meeting, when poor countries

who pollute planet Earth by a tiny percentage compared to the USA

pledged to do more; in addition to the Kyoto agreement all signed,

except him. What a nerve, eh - sprawling about all green and wild,

out of control in a second - given half a chance, reclaiming the streets -

claiming now she’s sick when anyone can see there’s still nice flowers,

food, sky above, rivers, plenty of sunshine - Oh, we’ve just heard,

the Universal underwriters will no longer be insuring planet Earth,

too sick, neglected; she did have – with her incredible, self-sufficient

systems, the lowest premium in the solar system, but that was before -

nobody will take her on now; who’s going to pay to correct all that damage?

Nobody - that’s who - unless you can make the moral case, boldly speak up

for entities who cannot control such destiny; unless principle is guidance,

not money, business, applied where it cannot be, cannot shine - is wrong

in nature to solve the problem. Genetic destiny was written in the stars;

a shifting, adapting, continually changing organic fortune, still flexible,

with strong possibility, certainty, likelihood, vague sense, chance, maybe -

all blurred and merging at the edges, and the Genome infected with miracle.

Beautiful mutants

Beautiful mutants; we are all

flawed - imperfect garments

of the Genome - enshrining

originality, experiment; love.

*

The Genome is a lamp; shone

into existence’s dark corners -

such untold treasures, wonders,

stories from the start of time - 

soothsaying genes, psychic molecules,

suffering premonitions and predictions.

But the Genome is beautiful - neutral,

her gifts to be spent as we will; curses

managed as best we can with the help

of the social animals she helped create.

*

Do we not still love those who are flawed,

coming to adore those very imperfections?

Weakness in others; misfortune, chance, accident,

illness, disease or infection, is our responsibility -

duty; whether from altruism or knowing

that there but for the Grace of God go I,

our law must enshrine these same values,

for they are the high values of humanity -

and we are responsible for laws;

ethos by which we are governed.

Effects on Society’s DNA

Winners in the genetic lottery -

already society rewards haves,

not have-nots; the genetic spiral

of society’s DNA is to replicate

advantage, increase the easy spoils.

Genetic engineering should be here,

affecting inchingly plastic genes

with new advantage - as decades

of good education will confer advantage

to all mankind. Support, good treatment

for junkies will cut crime - free heroin,

in a medically controlled environment,

is the obvious way to help drug addicts;

scythe crime - theft, mugging, burglary,

but those who could do it, too lily-livered

to publicly grasp the media-prickly nettle -

like those despicable fools who allow the beating

of children to go on, allowed, despite all research

showing most child abuse starts as punishment

that gets out of control - that countries banning

the hitting of children have no prosecutions

for trivial offences. What kind of country’s

DNA allows the hitting of a child but not a kitten

or puppy? Same stupid people who would shriek

at such treatment of poor wee defenceless animals -

give money to the RSPCA, but won’t give children

the same rights as a dog, cat, rabbit; who would object

if someone slapped them but think it’s OK to hit kids -

what kind of person DNA defends the right

to hit a child? Opposes new civilising laws

that would only give our children the same defence

against physical assault as these adults themselves?

Laws being expression of society’s DNA; developing,

adapting - moving forward to protect the weak, small,

vulnerable - implement justice. Producing safeguards,

guidelines, as reflecting ourselves; as once emaciated

children could be hung for stealing a loaf of bread -

and Irish families were left to starve in their homes.

All these things; happenings, attitudes, discussions,

shaping the genome of society - altering its genes -

in symbiosis with our own development - advances;

if they are out of kilter, we are responsible, must act.

The Genome has remained invisible to most

The Genome has remained invisible to most;

sparkling one day on TV and gone the next -

taking the blaring headlines, implications

far away to Scienceland; strange, opaque,

existing somewhere over there, away up there,

fodder for science fiction films - health scares.

Yet lying at its meshed and complicated heart

is such simplicity - as if both truth and beauty

had been boiled and purified to one white word,

or mineral; a single light we could comprehend.

And it cannot be filed under weird, irrelevant

to everday life, ignored as the planet’s plight -

the genie is out of the bottle, folks,

so no good bolting the stable door…

however you want to put it - fellow citizens,

the Genome has truly crossed reality’s floor;

from secret entity, document and script,

mythical, mysterious, little understood -

to the find, breakthrough, of four billennia;

and the practical impact will make comets

look like dancing dust on a summer’s day -

while the ignorant are exploited, and picnic. 

‘On Valentine’s Day…forty-five signatories including patient organisations, trade unions, academics and human rights lawyers will deliver a heartfelt message to the Government: People’s Genes Are Private. In a Joint Statement of Concern, presented today to a House of Commons Cross Party Group, the forty-five organisations and individuals express their fears about the lack of safeguards to prevent discrimination. They call on the Government to legislate against the use of test results in employment and insurance, citing examples of discrimination overseas that have stopped those needing tests from taking them. "People should be able to make the difficult decision whether or not to take a genetic test on health grounds alone, without worrying about the financial implications," said Dr Helen Wallace, Deputy Director of GeneWatch UK. "Genetic testing should not become a vetting tool for employers and insurance companies and it is time for the Government to act." In a new report ‘Genetic discrimination by insurers and employers: still looming on the horizon’, GeneWatch UK has gathered the stories of people living with genetic disorders in the US and Australia. Their personal stories show that discrimination and fear of discrimination blossoms when there is no legal control on the use of test results by employers and insurers. Individuals describe being denied the right to jobs or insurance. One mother of two, whose father died from a genetic disorder in the United States, is scared to test her children because of fears for their future livelihood. Another was denied insurance for her children because they know they carry a gene for a disease, despite the fact that medical opinion says they are not at risk of developing symptoms. Another woman believes she lost family members to breast cancer after they were advised by doctors not to have genetic tests because of the risk of discrimination. Though widespread use of genetic testing in the workplace has not yet begun in the UK, the signatories of the Joint Statement believe it is poised to take off in Britain. Research from the Institute of Directors shows that employers and insurance companies are keen to make use of tests to check for predisposition to a range of diseases. There is currently no clear legal protection of personal genetic information. Today the forty-four signatories urge ministers to correct that and put legislation in place before the practice spreads in Britain. Recognising the importance of genetic privacy, one leading employer, IBM, has already rejected use of genetic information in making personnel decisions. Insurance companies, on the other hand, though currently abiding by a voluntary moratorium on the use of test results, continue to seek the right to access genetic test results in future, including the test for a gene linked with increased risk of breast cancer.’ Genewatch, 2006

Some Even Further Implications

‘Another rich seam of controversy has arisen from research linking genetic factors with aggression and violence. This may help parents who feel guilty about their children's behaviour but could lead to excuses for criminal acts on the grounds that someone's genes programme them to behave aggressively. This argument has already been put forward in one American trial. Stephen Mobley, on Death Row for shooting the manager of a pizza parlour, appealed that he was "born to kill" because of genetic factors. But while it might be said that criminals are, therefore, not fully responsible for their acts, and so should not be judged as immoral, others argue that the essence of moral behaviour is human effort to fight inborn weakness. In the USA, a national programme called the Violence Initiative aims to identify violence-prone individuals. The Progressive Labour Party are just one of many who have expressed concern. The risk, they say, is that genetic explanations assume that it is the individual, rather than unemployment, poverty, racism or society in general, which is to blame. People who are violent must be ill or disabled, and so can be sedated or locked up, rather than helped through their problems.’ BBC Science

My story can be explained

My story can be explained, if you read back

to the start of time, the dust of stars; the cell

gluing itself in water from soft molecules,

willing itself into existence - form, being.

You can read of my violence in the worm

pushing earth crumbs aside, feeding birds

that came from ripping dinosaurs, prey

animals dominating on the plains; why

did my story become printed with those ones,

more so than yours which took the communal

spirit, worked with it; expresses migration

of birds, co-operation of hunter-gatherers -

civilising influence of caring for others; old,

weak, young – I have those good genes, too.

‘Probably one of the most sensational, controversial and hotly disuted genetic discoveries was the announcement by Dean Hammer in 1993 that he had found a gene on the X chromosome that had a powerful influence on sexual orientation, or, as the media quickly called it, ‘a gay gene’. Hamer’s study was one of several published about the same time all pointing towards the conclusion that homoexuality was ‘biological’ – as opposed to being the consequence of social pressure or conscious choice. Some of this work was done by gay men themselves…keen to establish in the public mind what they were convinced about in their own minds: that homosexuals were ‘born that way’….there is no room for doubt that homosexuality is highly heritable…Dean Hammer [found that] homosexuality seemed to run in the female line. If a man was gay, the most likely other member of the previous generation to be gay was not his father but his mother’s brother…[Also,] there is something specific to occupying a womb that has already held other males which increases the probability of homosexuality.’ Matt Ridley, Genome: The Autobiography of a Species in 23 Chapters, Fourth Estate, 2000

‘As the secrets of the human genome are unravelled at a spiralling pace, so the controversies about genetics are spiralling. As we understand more about our genes - the so-called "blueprints" of the human body - so the potential to change lives will follow. It will become possible to change the course of scores of diseases by manipulating the newly fertilised egg before it grows into a poorly child, or use gene therapies to reverse illness. Many will benefit. But how far should we go to understand the working of both body and mind, and to change it? One area which has caused particular concern is that of genetics and human behaviour. How useful - and equally how damaging - could it be to study the part played by our genes in determining how we behave? A prime example is whether genetics can explain a person's choice of sexuality. Many hoped that understanding genetic influences on sexuality might help gay people gain real acceptance by establishing homosexuality as normal or 'natural' behaviour. Others worry that it will lead to a view of homosexuality as an illness or flaw, which can be tested for. This could lead to enforced 'treatment' and control of sexuality, and perhaps even genetic screening of embryos to allow abortion of those found to carry genes that predispose to homosexuality. Recent studies have suggested that there is a genetic component to homosexuality. Reports in the media, with headlines announcing that the 'gay gene' had been found, lead to huge commotion, from calls to abort babies carrying the gene to outrage from gay groups, who have denounced the research as intellectually bankrupt: It's extremely unlikely that there is a single 'gay gene' to determine such a complex thing as sexual orientation but our genes may still influence the sexual differentiation of the brain and its interaction with the outside world, as a recent review of the research explains.’ Horizon, BBC TV

These genes made you my brother

These genes made you my brother.

Imagine that shuffling - X and Y -

Sry-gene, womb genes, nutrients,

interweaving in the shifting dark -

creation forming her bones, brain;

her delicate red lace, wound heart

that will tick-tock an allotted time,

hallowed as a beating seat of love -

become silent as everything organic.

Imagine the intricate factors interacting

to make you so fine, spiritually refined;

drawn to the male, hormonally different

to the majority; in a distinct minority

expressing the Genome’s inscrutable

nature - her gifts, ancient differences.

These are the combining genes; rabbit-

magic that drew you out from the dark,

just as holy - that made you my brother.

Genetic Terrorism

‘George Poste, chair of the US Department of Defense Task Force against Bioterrorism outlined in graphic detail what some fear might happen in the future. He described tailor-made microbes that produce powerful toxins, evade antibiotics and even produce "stealth viral vectors" that can integrate pathogenic DNA directly into an individual's genome. Perhaps microbes could be modified to evade detection by diagnostics and by the human immune system. At a later time, these fatal infections could be activated by treatments for other, themselves non-life-threatening, diseases. Yet still more malevolent microbes might turn the human immune system against itself, causing severe toxic shock, similar to Ebola's biological meltdown. "These aren't science fiction," said Dr Poste. "The now defunct Soviet bioweapon programme brought many of them to life”.’ BBC News, 2003

Invading the Genome’s biological lights;

re-setting switches and patterns, esoteric

sequences, there in the deep, secret dark.

Turning the Genome’s power and force

against its extant organism - its organic

presence in the living world; perverting

sparkling chains, unhooking molecules -

breaking commands and bright messages

into dark external spells; ill-coded curses.

Internal weapons

Internal weapons, as fresh ground for men

after breaking the world with wars, bombs;

so much blood it turned to poppies and mud,

ran from mountains - red seas over centuries.

This new geography, warm theatre of war

where drums are the beat of human hearts,

more vulnerable even than the fleshly shells;

wet wounds, scarlet shock - rapid siphoning

of life through ruined fabric - despite

genes’ healing spells - overwhelmed.

Now they will turn the Genome, possess,

pervert armies built over four billennia -

spies entering the dancing genes - learning

the steps, infiltrating with deadly expertise;

genetic Venice at carnival, masked intruders,

murderers with knives - secreted under silks.

‘“In light of these pathogenic possibilities,” asked Dr Fraser, "should genome-sequence information be kept under lock and key by government regulation?" She said it was not an academic question. At Tigr, scientists have sequenced nearly 20 pathogens, including those that cause cholera, pneumonia, anthrax, meningitis, and syphilis. The institute was also involved in identifying the anthrax strain used in 2001's poison letters. However, in spite of this, or perhaps because of it, Dr Fraser believes that such DNA sequences should remain public. She told BBC News Online: "I want to debunk the myth that genomics has delivered a fully annotated set of virulence and pathogenicity genes to potential terrorists”.’ BBC News online, 2003

Layperson trying to assess the dangers

Identity of disease, poison, plague; pnuemonia and

Spanish flu - cholera, anthrax, meningitis, syphilis -

dark genomes, Devil genomes, wicked entitities

whose sole purpose is to injure, maim, kill, win;

unmasked, dissected under their terrible face. Imagine

the quality of darkness at the heart of Bubonic Plague,

biological heartlessness of meningitis, fit to kill a child,

printed like knitting patterns on the web - internet files.

*

Without the needles, expertise, these patterns are meaningless,

no more dangerous than the mapping of comets, shooting stars;

where we must fear is the astronauts, freelance space-walkers,

scientist-kings looking for countries, conflicts - hated victims.

‘GeneWatch UK believes that it is only with increased awareness of the potential abuses of genetic technologies amongst both scientists and civil society that the development of biological weapons can be avoided. As well as general awareness, institutional scrutiny to avoid possible abuses has to be cemented in international law.’ Genewatch

‘Some have raised the possibility that terrorists could take publicly available data on harmful microbes and use new genetic engineering techniques to turn the information into lethal bio-weapons. This frightening prospect has led to calls for the classification of the genome data of harmful organisms. But a leading scientist in the field has told BBC News Online that potential bioterrorists would not be able to manufacture genetically modified killer viruses or bacteria using the databases. Genome pioneer Dr Claire Fraser, of The Institute for Genomic Research (Tigr), says that although the genetic data of human pathogens is public, no one knows enough to turn this information into bioweapons. She adds that making genomes secret would merely harm science - just what the terrorists would want. In 1995, the nerve gas Sarin was released on the Tokyo underground. In 2001, Anthrax was sent in the post in the US, and just a few days ago traces of the poison Ricin were found in a London flat. All of these substances are frightening and are part of the terrorist's arsenal. But some people fear these materials may be mild compared with what terrorists, armed with freely available modern genetic engineering techniques, could do if they produced a self-replicating bioweapon that was infectious and deadly. A fear of this happening has led to calls that the genomes - genetic blueprints - of some dangerous organisms be classified. But is this the stuff of science fiction, or is it a possibility? The US National Academies and the Center for Strategic and International Studies has held a conference to discuss the so-called weaponisation of genomes.’ BBC News, 2003

‘Plagues - add to them the human genome project, and nanotechnology, the new ability to build minute machines that can replicate themselves, too small for the human eye to see. The result, says Bill Joy, is the possibility of electronic and biological plagues which could threaten the future of the human race. In the networked computer world he has been instrumental in creating, knowledge about all these things is now readily available to everyone - for good uses or bad. Most of the technology experts dismiss out of hand the idea of reining themselves in. Bill Joy first voiced his concerns in a magazine article last spring, and because he is co-chairman of President Bill Clinton's Information Technology Advisory Committee, he got a lot of attention. With genetic codes now cracked by computers, people will soon be able to choose desirable attributes for their babies. The smallpox genome may soon become very easy for anyone to get hold of. Bill Joy's message to his fellow scientists is: stop and think. He is so concerned about the misuse of knowledge that he is urging restraint - limits, voluntary or imposed, on where scientists should tread, and what science should do.’ BBC News

  

Bombs and guns are as bows and arrows,

crude cudgels; as museum pieces stuffed

in temples of war - these new subtleties

of death - of redless, whole body death,

invisible, using the genetic dance,

dressed for the event, in disguise;

accepted politely by unknowing Genome -

used to her policy of adaptation, welcome.

Internal agents of death - black-winged

in the blood they come – engineered so

precisely, perverted in the hated light;

pure black seed, artificial life mutated

to these dark, subtle instruments.

Dumb, they are hatred embodied,

slaves to crepuscular purpose,

working in organic shadow -

the enemy within now personified

in chemicals - accurately printed -

taking this entire living monument out -

bringing down its holy citadel; ruination

maybe spreading to his own species brothers,