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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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