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When Liz Shipley was diagnosed with motor neurone disease (MND) it came as
little surprise. The 36-year-old from Newcastle had lost her mother to the
same condition when she was just three years old. Several other members of
her family, including her sister and uncle, had died or were suffering from
the muscle-wasting disease.
Ten years on and unable to walk, write or dress herself, she fears that her
two teenage children will also inherit the disease. Shipley does not expect
a cure in her lifetime but she backs controversial scientific research using
embryos that are part-human, part-animal, which could lead to a treatment
for her children if they are struck down.
“When you have an illness for which there is no cure, you have to investigate
every avenue,” said Shipley. “I do not want my children to be told in 20
years’ time that they have MND and there is still no cure. I believe the
answers will lie in stem cells of some kind. Hopefully this research will be
able to tell us why this is happening to our family.”
For Shipley and campaigners such as the Motor Neurone Disease Association, new
legislation heading for the House of Commons this spring is simply a matter
of putting in place the best infrastructure for scientists to help people
like her.
For others it will be the most controversial bill of this parliament with the
science it allows running far ahead of what many would regard as reasonable.
Last night Rowan Williams, the Archbishop of Canterbury, said that the
country lacked a “clear moral perspective” on such issues.
The Human Fertilisation and Embryology Bill is designed to regulate just how
far scientists can go when experimenting on embryos or embryo parts. It will
also lay down new boundaries for fertility clinics, setting out the
circumstances in which controversial techniques for screening embryos for
defects, or gender, are allowed.
As if this were not contentious enough, the new law will lift a ban on
so-called “saviour siblings” – babies created to donate bone marrow or
tissue to a sick brother or sister. The battle lines are set for a ferocious
religious, moral and political debate, with senior government figures
threatening to derail the new laws over ethical concerns.
Even Sir Liam Donaldson, the chief medical officer, seems to have
reservations. He has spoken of the human-animal hybrids on which Shipley is
placing her hopes as a “step too far”, warning that even scientists feel a
“degree of repugnance” at the idea.
It is too late for ministers to back down: the legislation was in the Queen’s
speech and is strongly supported by Gordon Brown.
Are they leading us into a scientific and ethical minefield? Will MPs produce
a bad law – or will it all unravel?
EVEN the bill’s harshest critics agree that the law needs updating. Since
1990, when the last legislation governing embryos was introduced, there have
been huge changes in the creation and use of embryos in fertility treatment
and science.
The legal vacuum has frequently left the Human Fertilisation and Embryology
Authority, charged with making rulings on ethical issues – such as whether
embryos should be screened in order to select only healthy children – at a
loss. Its rulings led to calls that such decisions should be made by
parliament, not by an unelected quango.
The problems for the government with this bill started in its drafting.
Ministers supported a report from the cross-party science and technology
committee so that they could present the resulting bill as a non-partisan
measure, but its 10 MPs were hopelessly divided.
“It was a nightmare,” recalled Ian Gibson, the committee’s chairman. “We could
have gone on arguing for days and days. People were walking out; there were
all sorts of threats; it was very, very uncomfortable.”
In a highly unusual step, the conclusions of five of the group were published
alongside a terse statement from the other five. “We believe the report is
unbalanced, light on ethics, goes too far in the direction of deregulation
and is too dismissive of public opinion and much of the evidence,” the
dissenters declared.
Yet that report forms the basis of the current legislation. With the more
“liberal” committee members dominating the drafting process, it creates a
freedom of action for fertility scientists that is unparalleled in the
developed world. Some say it goes much further than enshrining current
practice in law.
“We don’t know at this stage where the breakthroughs will come from, but it
wouldn’t be sensible to close off research in these areas,” was how a health
department official described the bill’s principles.
Among the most controversial proposals is to allow the creation of hybrid
embryos. The government says these could solve the shortage of human eggs
needed for research into curing diseases such as Parkinson’s and MND.
One form of hybrid embryo, made up of an animal egg and a human nucleus, could
be used to produce stem cells. These are valued by scientists because they
are more flexible than other types of cell and consequently more useful for
research. The hybrids, which could be up to 50% animal and 50% human, would
be allowed to live for only 14 days.
“This is not about creating monsters,” say officials. “It’s purely laboratory
research.”
The potential creation of such embryos has angered religious groups, which
object to the manipulation of a life form that is at least part-human. “We
haven’t as a society got a sufficiently clear notion of what constitutes a
human organism,” said Williams. “My own view is that an embryo is a human
organism, but that requires some argument, which isn’t something that can be
settled by science alone.”
Some scientists have also voiced their reservations. Last year Donaldson told
a parliamentary committee set up to scrutinise the legislation: “On the
question of full-blown hybrids being created between animal gametes and
human gametes, there was a degree of repugnance, even among scientists . . .
“It was felt – and I think is still felt – that this would be something where
there was no clear scientific benefit and, secondly, a feeling that this
would be a step too far as far as the public is concerned.”
Some scientists ask whether the legislation not only moves us too far and too
fast but also in the wrong direction. They question whether such hybrids are
even necessary because stem cells derived from a patient’s own body are
already being used to treat disease.
Colin McGuckin, professor of regenerative medicine at Newcastle University,
has shown that stem cells taken from the umbilical cord of a newborn baby
can be transformed into skin and liver tissue. “There are many types of stem
cells available to develop new drug therapies and I think the overemphasis
in our country on embryonic stem cells is disappointing,” he said.
In November last year Professor Shinya Yamanaka, of Kyoto University, Japan,
announced that he had successfully reprogrammed skin cells into
embryonic-like cells, possibly making the use of material from embryos
unnecessary.
Hybrids are just one of many controversial areas. The bill also enshrines in
law the creation through in vitro fertilisation (IVF) of babies that are a
suitable tissue match to help to treat an existing child, the so-called
“saviour siblings”.
Here the act again goes further than existing practice in suggesting that
children could be created to donate part of an organ, as well as bone
marrow, to their siblings. This, too, has triggered angry opposition.
“For children apparently to be created for the sole and explicit purpose of
being available to provide any type of tissue at all for an existing sibling
is appalling,” said Lord Alton, the independent peer. “This is truly
dehumanising society.”
The act also allows fertility clinics to discard, or “screen out”, embryos
suffering from serious diseases. This has angered extremist disability
campaigners who want to turn the legislation on its head by allowing
fertility clinics to screen in embryos carrying genetic abnormalities.
Last year The Sunday Times revealed that deaf organisations think parents
should be allowed to pick a deaf embryo over one that has all its senses
intact, believing that there is a cultural identity in being deaf that
families should be allowed to share. Now the British Deaf Association is
lobbying for an amendment giving deaf couples the right to use the
techniques to ensure they have a deaf baby.
Couples with dwarfism have also sought the right to create children with the
same condition as themselves.
Stoking an already raging fire are two opposition MPs who are preparing to lay
down amendments guaranteed to make it even more contentious. Evan Harris, a
former doctor, wants scientists to be able to create artificial sperm –
potentially solving the national shortage of sperm donors and allowing
cancer survivors who are infertile to have children. Opponents describe it
as “playing God with human DNA”, while Harris insists that it is “rational
and progressive”.
Most politically toxic of all are plans by Nadine Dorries, a Tory MP, to lay
down an amendment that would reduce the time limit on abortions from 24 to
20 weeks.
As an amendment to the bill it could get only an hour of debate, but it is one
about which the public feels strongly. A YouGov poll for The Sunday Times
today shows that 48% of people say they would support Dorries’s measure – a
figure that rises to 59% among women – while 35% would keep the limit at 24
weeks; 8% would ban abortion altogether.
FOR those charged with pushing the bill through the Commons, the situation
could hardly be worse. If the government was united on the issue there would
not be such a problem, but it is not.
The prime minister regards the legislation as crucial. If Britain does not
make it easier for scientists to carry out pioneering research, he fears
they will go elsewhere, jeopardising the country’s international reputation
as a centre of excellence in such work. His interest is not just political
but also personal. His son James suffers from cystic fibrosis, one of the
conditions for which stem cell research offers real hope.
Several members of Brown’s cabinet are staunch Catholics. Ruth Kelly, the
transport secretary, Des Browne, the defence secretary, and Paul Murphy, the
Welsh secretary, are vehemently opposed to the use of embryos for research.
Kelly is the biggest worry. She has made it clear to government whips that she
will not vote against her conscience. In a measure of how high the stakes
could become, those close to the transport secretary do not rule out the
possibility that she will resign if she is forced into a corner over her
beliefs.
Many MPs are demanding a free vote on the bill. This is dismissed as out of
the question by government whips, who feel they have already been
extraordinarily “sensitive and generous” by announcing that all Labour MPs,
including cabinet ministers, will be able to abstain on conscience issues,
even though this is a government bill.
In this febrile atmosphere it does not help that Dawn Primarolo, the minister
with the nightmare task of pushing through the legislation, cannot relate to
those with strong religious convictions. “I’m an atheist,” she declared
bluntly, although she added: “It’s not for me to question anyone else’s
faith or beliefs.”
For her, embryos are not potential humans from the moment of conception. “I
don’t think it’s a life right from the start. That’s my personal view,” she
said.
Privately some government figures complain that her department has been too
slow to “sell” the bill to a wary public. Nothing has been heard from Alan
Johnson, the health secretary, on the issue.
“They’ve got to get out there and show MPs and voters why this is a good
thing,” said a senior government source.
As the objections from campaigners, scientists and MPs alike show, that will
be a difficult job.
Contentious issues in the new bill
Animal-human hybrids
Scientists will be allowed to create embryos which are half-human and
half-animal by mixing animal and human sperm and eggs. The embryos will be
allowed to live for only 14 days and will be used for experiments which
scientists hope may lead to treatments for disease.
Saviour siblings
It will become legal for fertility doctors to screen embryos to choose one
which is a tissue match for an existing sibling who has a disease and could
benefit from a donation of stem cells, bone marrow or even part of an organ.
Designer babies
It will become legal for doctors to screen out embryos which have disabilities
and implant only those free of disease. The law prohibits selecting a
disabled embryo if healthy ones are available. But deaf groups want the law
amended to allow them to select children who cannot hear.
Fathers not needed
The act would remove the requirement for fertility doctors to consider a
child’s “need for a father” when offering treatment to single women or
lesbian couples. Campaigners say this sends a message to society that
fathers are not important.
Abortion
MPs are planning to introduce an amendment to reduce the upper limit for
abortions for social reasons from 24 to 20 weeks.
Artificial sperm and eggs
Another amendment will attempt to permit the use of artificial sperm and eggs
in fertility treatment, should such treatment be possible in the future.
Where, oh where is any morality in this country? Spot the difference:-
Live Embriology Reasearch
=
Abortion
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Euthanasia
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Murder
As for "Fathers not needed", having suffered from prejudice from being illegitimate for the last 42 years of my life i.e. all of it,(no law in the land prohibits this prejudice unlike sexism, racism & homophobia) I know from personal experience that fathers are needed and required to bring up a child if they are not to require lots of love and years of counselling to over come years of bullying at school that is over looked by the many, not to mention every day life.
The hypocracy in this country is so outstandingly huge it leaves me speechless. Perhaps this is what happens in a "post Christian" society.
Anthony Cook, CChem, MRSC, MEI, Woking, Surrey,
The hybrid embryo proposal is highly irresponsible on technical, and not just moral, grounds. The hybrid would retain non-human mitochondrial DNA, the virology of which is essentially unknown. The possibility of transfer to the human species must be recognised. Protection of the human genome must be a total imperative. It should be recalled that recently confinement of foot and mouth disease failed. "Mad cow" is now attributed to a previously unrecognised prion. The so-called Authority arose out of the experimental genetics lobby in the 1980's, with exactly the same arguments of innovative therapy. With all sympathy for those afflicted, for example with motor neurone disease, there is no recognisable research strategy based on current proposals which could lead to a therapy. So the whole affair is a "sorcerer's apprentice" scenario, a total failure to anticipate eventual adverse consequences, whose probability must be rated as least as highly as the claims for innovative therapies
Augustin McEvoy (Dr)., Lausanne, Switzerland
Do stop calling them "embryos". It might be the scientific term, but it makes people think of little babies when it's actually a very, very small cluster of cells.
starling, Lancaster,
As there are already alternatives to using embyos as a source of stem cells, I fail to understand why there is any need at all to use embryonic stem cells and ever to go down the road of animal-human hybrids. I can only suppose that the push towards this line of research is purely a selfish drive by certain scientists for personal fame and prestige in pushing scientific frontiers at the expence of respect for human life. It's amazing that we bend over backwards for the premature baby and disabled child or adult but care nothing at all for that same child in the womb. We are indeed a society totally lost in terms of moral direction.
Dr. Judy Chen, London, England
The idea of ‘saviour siblings’ is alarming. If the Bill makes it legal for fertility doctors to screen embryos to choose one which is a tissue match for an existing sibling who has a disease and could benefit from a donation of stem cells, bone marrow or even part of an organ, there are dangers we could face in the future.
What happens if a ‘saviour’ has to donate a major organ such as a kidney or a liver? How do we look after the ‘saviour’, who might become ill and could be faced with psychological and practical problems later? We must bear in mind that there could be many of these children brought into existence to donate tissues and organs, and that they may have to deal with many difficulties throughout their lives. Society has a moral duty to give serious consideration to their rights and welfare.
There is also a moral duty to consider one of the other major issues: ‘cybrids’.
‘Cybrids’ – genetically modified human embryos – would be introduced through this Bill. Scientists could produce, under licence, embryos which are part human, part animal, the rationale being that this could help to cure illnesses such as Parkinson’s and Alzheimer’s. The scenario put forward is that the egg of an animal (for example, a cow), with the nucleus removed, could be implanted with the nucleus of a human embryo. The resulting embryo, we are assured, would be 99% human and could be stored in a laboratory.
Experiments could take place on this embryo for up to 14 days, after which it would be destroyed. However, we must remember that this embryo is a totally new form of life. What if, sometime in the future, somebody decides to implant it into an animal? We could produce a human being for a specific purpose.
There could be disturbing similarities to Aldous Huxley’s 1932 novel Brave New World, in which people are specifically bred to fulfil certain roles in society and are never allowed to move out of the role they have been allocated. Social mobility is therefore not allowed and everyone is forced to lead a life which is controlled by the State. Bearing this in mind, we need to be careful about the power we give to our legislators.
We also need to remember that stem cell research has taken place over a number of years and has produced beneficial results when the tissues have been taken from adults and animals. However, the situation with experiments on human embryos is quite different. Since 1991 more than 200 million human embryos have been used in experiments and then destroyed.
Up to now, no medical advances have been made with this type of research. Why the rush now to experiment on human embryos? Simply because some scientists believe that this is the way forward is not sufficient reason for us to rush ahead without thinking of the consequences.
There are many difficult moral and ethical issues surrounding this Bill. It is worrying that the Government is determined to push it through by not allowing Labour MPs to vote according to their beliefs. In a democracy this is not acceptable. There are matters of conscience at stake here and they must be allowed a free vote.
Terry Walsh, Manchester,
A viable alternative to Embryonic Stem Cell research is Adult Stem Cells, which in clinical trials have already developed cures for some diseases. Or, as the article says, how about using Stem Cells from Umbilical Cords, which are largely wasted? These two approaches are likely to yield efffective and ethically acceptable results in time. How about a little patience from the government on this one, before rushing into a serious and almost irreversable error of judgement?
Dan, Liverpool, England
The comment about 'But deaf groups want the law amended to allow them to select children who cannot hear' needs to be clarified, as deaf people are getting a lynching from the media and readers without reasonable consideration of the real issues behind that sentence.
It is about two things: 1. That the Bill considers deafness a life-threatening condition; it is not so, there is available accessible communication to enable deaf people lead active participative lives. 2. The notion that deaf embryos are inferior to human embryos overlooks these factors - the hearing loss may be variable, even mild; and the character of the deaf embryo may be socially superior to the hearing embryo within the batch.
The reaction we are seeing exposed a hatred towards a condition that has been accepted by many deaf people as a way of life with no threat to others. It is the 'Others' who are causing the controversy out of pure eugenic agendas.
Penelope Beschizza, London, UK
A hybrid embryo made from an animal "shell" with a human nucleus is about 90% human, and fine for stem cell research, but could never come to term as a living creature. Surely it is better to use such embryos than real human embryos, that do have the potential to be living human beings, were they not destroyed by the research.
carole chapman, Colchester, UK
Thank you for this intelligent article. This is a bad bill, typical of Labour. Politics is the main thrust but it tries to hind behind science. The proof of how bad this ibill is lies in the fact that the Prime Minister will not allow a free vote on it as has always happened before on moral matters. Though this might not seem an obvious vote loser, it is: people are fed up with the Labour control freaks.
George, Bolton, England