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The Blanket - A Journal of Protest & Dissent
When Science Outpaces Law


John Harrington • June 29 2003

Last week amid the cash-fuelled hype about Harry Potter and David Beckham came a story of real and profound importance: the birth of Jamie Whitaker, Britain’s first ‘designer baby’. Created by in-vitro fertilisation (outside the womb), Jamie is a perfect genetic match with his older brother Charlie. Before implantation he was selected for his compatibility from a number of created embryos. Charlie suffers from an extremely rare form of anaemia. To survive he needs frequent blood transfusions and painful nightly injections through his stomach. Blood cells taken from Jamie’s umbilical cord will be used to kick-start the production in Charlie of red blood cells which he now lacks. Ethics experts have swarmed onto the TV screen and into the newspaper columns. Some argue that creating one child to save another devalues human dignity: we are at the top of a slippery slope to Nazi-style eugenics. For others the need of the sick child is overwhelming: the parents’ reproductive choice should be respected.

Yet the ‘Whitaker case’ is not just a ‘sob-story, as the fertility expert Lord Winston insensitively put it. To lawyers it demonstrates how quickly legislation is left behind by scientific progress. To supporters of the NHS it shows how private wealth increasingly determines access to life-changing treatment.

The basic law here is the Human Fertilisation and Embryology Act (HFE Act) of 1990. It completely prohibits some procedures like implanting an animal embryo in a woman. It subjects others to regulation by the Human Fertilisation and Embryology Authority. Clinics need a licence to be able to create or research on human embryos in the laboratory. One specific rule allows the testing of embryos before implantation, but only where this is necessary to prevent them from developing a genetic condition later.

Originally the Whitakers were refused permission to test embryos in order to ensure a genetic match with Charlie. Taking a cell from the embryo is risky. It would not be allowed solely for the benefit of another child.

This was the reason the HFE Authority granted permission for pre-implantation testing in the case of the Hashmi family. Their son Zain was suffering from a rare blood disorder beta thalassemia. They too wanted to create a new child which was an exact genetic match. The Authority gave permission because the test would also establish whether the new child was suffering from the same condition. Direct harm to it would be prevented.

Critics are right to point out that this is a spurious distinction. In both cases the real intention was to create a ‘saviour sibling’. The Hashmis were just ‘fortunate’ in a very perverse way that the beta thalassemia was inheritable by the new child and could be tested for. The Whitakers were ‘unfortunate’ in the same way since anaemia was not inheritable.

The Whitakers were referred to a clinic in Chicago where the procedure was carried out. (Fertility treatment is much more lightly regulated in the United States.) The whole trip cost them around £20,000 pounds. They raised this in part through selling their story to the Daily Mail. To save a child many of us would do the same. Yet how ironic that the Mail’s exclusive photographs of mother and baby were hedged in by right wing columnists arguing against the commodification of human life allegedly involved in the case.

In Britain fertility treatment is largely provided by private clinics. It is difficult to obtain on the NHS. Age criteria and moral standards (especially against gays and lesbians) restrict access. Those who are excluded must pay. Those who can’t pay go without. The ‘free market’ is used to ration treatment on grounds of wealth. The Whitaker case is an extreme example of this.

Human life can be commodified only if medical care is commodified. And medical care is commodified where it is shifted out of the NHS and into the private sector. Restrictions on fertility treatment are merely a forerunner the creeping privatisation in the NHS. Hospital PFI agreements will allow private companies to split up general services and charge patients for so-called non-essential care. Where the line will be drawn is anyone’s guess. One cannot be optimistic. After all, the government classifies fertility treatment as non-essential, though this is not how most people see it. The determination of the Whitakers and the Hashmis, as well as the broad public sympathy which they have evoked bears this out.

The HFE Act is now obviously out of date. Procedures such as stem cell therapy and tissue matching were impossible at the time it was drafted. The Act must be radically reformed or replaced. The reform process needs to be open and democratic. It cannot be consigned to committees of the great and the good. It should not be surrendered to absolutist pro-life groups. It must not be captured by big business and its political friends. Scientific progress raises profound questions regarding human health and human identity, as well as access to treatment. They are questions for us all.



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The Blanket - A Journal of Protest & Dissent



All censorships exist to prevent any one from challenging current conceptions and existing institutions. All progress is initiated by challenging current conceptions, and executed by supplanting existing institutions. Consequently the first condition of progress is the removal of censorships.
- George Bernard Shaw

Index: Current Articles

30 June 2003


Other Articles From This Issue:


Bad News is No News in a World Where Sinn Fein Rules
Eamon Lynch


A Secret History Gets Told in Galway
Anthony McIntyre


The Legacy of Pedro Albizu Campos and Irish Republicanism

Aoife Rivera Serrano


Picking Up the Pieces
Cadogan Group


When Science Outpaces Law

John Harrington


27 June 2003


Dome of Deceit
Anthony McIntyre


Leave Them Be
Tommy McKearney


Fighting the Censors
Ryan McKinney


Pedro Albizu Campos and Irish Republicanism

Aoife Rivera Serrano


Sectarian Stereotypes
Liam O Ruairc


What Price Pretense?

Eoghan O’Suilleabhain


Pobal na h-Eireann Manifesto
Sean Mac Eochaidh




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