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Life Chances
By John Gillott
June 25, 2003
The following article first
appeared on the website Spiked
'I've been a communist all
my life. But at times like this I say thank God for American
capitalism.' This comment, made by an 80-year-old woman at
a talk I once gave about the ethics of embryo research, came
to mind when I heard the news of Jamie Whitaker's birth.
For once again, the much-maligned
American private sector, and a specific Chicago clinic in
particular, has stepped in where others in the UK either could
not or would not.
Jamie's older brother, Charlie,
is four years old. He suffers from a rare blood disorder called
Diamond Blackfan anaemia. Currently he has to undergo regular
blood transfusions and painful injections. His life expectancy
is much reduced. A very promising treatment is a transfusion
of blood stem cells from the umbilical cord, which is rich
in them. But for that to work it is also necessary that the
cord be from a baby born with a closely matched tissue type.
Jamie was conceived in such
a way that there is a very good chance - 98 percent, in fact
- that he will provide such a match for his ill brother. This
was achieved through fertilisation, genetic testing and selection
of the embryos prior to the beginning of pregnancy. This is
a combination of several techniques and issues guaranteed
to lead to headlines about 'designer babies'. But for the
boys' mother, what they have done is very simple: 'We have
always wanted four children, so we just combined having more
with helping Charlie.' (1)
The Whitakers' rapid success,
less than one year after the UK Human Fertilisation and Embryology
Authority (HFEA) turned them down, has brought into sharp
focus the way in which the UK regulatory regime has judged
this and another closely related case: that of the Hashmi
family.
Both cases raise important
questions about the existing UK law regulating fertility treatment,
and the role played by the HFEA. As science opens up new possibilities
to infertile couples and parents of sick children, the precautionary
approach taken by the law and the regulators is restricting
the progress of these developments, and their use by people
who could benefit immeasurably from them.
In the UK there are legal
restrictions on who has access to fertility services and for
what purposes. Whereas anyone can (try to) conceive naturally,
if medical assistance and genetic diagnosis is involved, so
is an external regulatory regime. As far as the HFEA was and
is concerned, the Whitakers' application was a step too far.
Ever since it was formed,
following the passage into law of the 1990 Human Fertilisation
and Embryology (HFE) Act, the HFEA has licensed clinics to
carry out genetic tests on embryos to determine whether they
carry a gene linked to a serious genetic disorder. After much
internal discussion, the HFEA decided more recently that if
an embryo was being tested for a genetic disorder, its tissue
type could also be determined in order to help an existing
sibling suffering from the condition. But it decided that
it would not allow the testing of embryos simply to select
a tissue match, in the absence of any need to test for the
presence of a mutated gene.
Accordingly, the HFEA gave
permission for the Hashmi family to use IVF and genetic testing
in an attempt to conceive a child who could be a stem cell
donor for their son, who suffers from beta thalassaemia major.
However, it refused permission to the Whitakers, as their
son's condition is not thought to be significantly influenced
by genetic factors; and in any case, even if his particular
case is influenced in this way, the gene(s) are not known
and so cannot be tested for.
Following Jamie Whitaker's
birth, Suzi Leather, chair of the HFEA, reiterated the regulatory
body's view that the long-term risks of preimplantation genetic
diagnosis were unknown and it was therefore only appropriate
to limit its use: 'If there are benefits for the child to
be created from the [tested] embryo, for instance, to avoid
a significant risk of a serious disease, then I think the
balance of potential harm and potential good falls in a different
place than if you are simply [testing] an embryo for the benefit
of another person.'
Leather expressed concern
not only about long-term physical harms that might result
from the process of testing, but also potential emotional
harms: 'We don't know what the social and emotional consequences
of being a so-called "saviour sibling" will be.
It seems to me that in this area of considerable uncertainty,
where there is a possibility of theoretical risk, that we
should adopt a precautionary approach.' (2)
While I have not seen any
opinion polls, I do get the feeling that many people would
side with the Whitakers, and families in their situation,
against the regulators. We are told, after all, that the
Daily Mail newspaper has its finger on the pulse of at
least part of the nation, and it covered the story in a very
sympathetic manner.
The British Medical Association
(BMA) was uncharacteristically forthright in its support of
the family. Vivienne Nathanson, head of ethics and science,
said: 'As doctors, we believe that where technology exists
that could help a dying or seriously ill child, without involving
major risks for others, then it can only be right that it
is used for this purpose. The welfare of the child born as
a result of the treatment is of crucial importance, but in
our view this is not incompatible with allowing the selection
of embryos on the basis of tissue type.' (3)
Those more sympathetic to
the HFEA have certainly been on the back foot. Leader of the
House Peter Hain gave us a grown-up treatment of the issues
on BBC Question Time. He backed the HFEA but said that
as a parent he would have gone to America. He then said he
wouldn't want to change the law, but conceded that maybe it
does need modernising…. He trailed off at this point
in that way he does so well.
And well might those sympathetic
to the HFEA's decision be defensive. Setting aside what, admittedly,
can become something of an angels-on-a-pinhead discussion
about whether it is legitimate to raise the issue of the harm
to the second child, since he would not have been born unless
he was selected in the way he was, this is still a pretty
breathtaking balancing act in which the regulators want us
to take their side.
If we take it as given that
the treatment has a good chance of saving a life (this is
the view of many experts, and is borne out by limited experience
so far, although it is questioned by others, such as fertility
expert Robert Winston), we are supposed to forget about this
because of possible harm to the new child. And make
no mistake: it is a possible harm, for that is why the cowardly
precautionary approach is invoked rather than clear data or
theory.
So what is to be done? Some
of those sympathetic to the Whitakers have added their voices
to those calling for parliament to reconsider the whole area,
such as the ProLife campaigner Josephine Quintavalle and Ian
Gibson, chair of the House of Commons Science and Technology
Committee. Evan Harris, Liberal Democrat health spokesman
and constituency MP for the Whitakers before their recent
move to Derbyshire, said that the law prohibited new treatments,
such as that used to create Jamie, and needs changing: 'The
[HFE] Act is 13 years old and is no longer up-to-date with
clinical developments.' (4)
Perhaps feeling somewhat buffeted
by the response to this case, I sense that the HFEA is beginning
to think that this solution might not be such a bad idea.
It is also a solution that I am sympathetic to. However, things
are not as straightforward as they might appear. The immediate
barrier is in fact not the law but the policy of the HFEA,
which in turn is buttressed by recent judicial interpretations
of the HFE Act.
Josie Appleton has told the
story of the way in which the HFEA rejected the view of its
own ethics committee, which was of the opinion that both the
Hashmis and the Whitakers should have been able to receive
treatment in the UK (see Life
and death decisions). It seems clear that the HFEA as
a whole formulated policy with an eye to what it thought the
courts would tolerate - and, perhaps more to the point, its
own desire to manage a process of development - rather than
the merits of either case, viewed both from the point of view
of current law and ethics (5).
The positive decision in the
Hashmi case was then challenged, successfully, by Quintavalle's
campaign group Comment on Reproductive Ethics, in the High
Court at the end of 2002. However, in what appears to be a
final judgement, given in spring 2003, the Court of Appeal
overturned this decision and the Hashmis are now trying again
in the UK.
Ironically, and significantly
for the current discussion, the main judge in the Court of
Appeal hearing, Lord Justice Schiemann (6), presented more
liberal arguments than did the HFEA, leaving little doubt
that the HFEA was free to licence a wider set of treatments
- including that required by the Whitakers and others in a
similar position. But what the judges also made plain, and
herein lies the rub, was that the HFEA was also free to exercise
its judgement and refuse treatment in such cases.
The arguments presented by
the HFEA in court, and those made by judges in deciding in
favour of the HFEA, contained a number of inconsistencies
and arbitrary judgements. As a side-effect of this, the nature
of regulations and the meaning given to the HFE Act are developing
in an instrumental and ad hoc way. What is more, in
squeezing new developments such as 'saviour' babies into the
existing categories enshrined in law, the real nature of them
is denied. This provides one good reason to revisit the issues
in Parliament.
But in the meantime, it is
important to note that the HFEA's legal success in the most
recent Court of Appeal case fits a pattern: following trouble
in the lower courts, judges in the higher courts have in general
looked more favourably upon the Authority, especially in relation
to its core functions of regulating research and clinical
practice.
It is not just ProLife critics
who have seen their challenges founder. Mohamed Taranissi,
the Whitakers' UK-based clinician, lost a challenge in the
Court of Appeal in 2001 in which his clinical freedom to judge
whether an individual woman was best served by implanting
a greater number of fertilised eggs than regulations permitted
was rejected.
Once again, and this time
explicitly in response to the notion that the 1998 Human Rights
Act might limit the discretion of the HFEA, the judge reaffirmed
that this was not the case: 'It is not the function of the
court to enter the scientific debate, nor is it the function
of the court to adjudicate on the merits of the Board's decisions
or any advice it gives. Like any public authority, the Board
is open to challenge by way of judicial review, but only if
it exceeds or abuses the powers and responsibilities given
to it by Parliament.'
The natural inclination of
supporters of IVF treatment and embryo research has been to
welcome the court victories of the HFEA against its ProLife
critics. But these have come at a price. The Authority is
engaged in a dance with the courts, its critics and what it
thinks, or claims to think, public opinion will tolerate.
This is causing delays and restrictions where progress ought
to be quicker.
Furthermore, the higher courts,
in seeking to provide some general guidance beyond the merits
of each particular case, have emphasised that the Authority
should have a wide discretion to make decisions in its area
of competence. This can be viewed as both reinforcing the
discretionary powers of the Authority, and throwing the problem
back into its hands to deal with. This may imply further defeats
for the closely related ProLife organisations should they
try again. It is also likely to lead to frustration for some
patients and researchers, keen to push the boundaries of what
is possible.
If and when the issues do
return to Parliament, a focus of activity must be to change
the basis on which research is conducted. Presently, the law,
for all its appearance of being permissive, is founded on
a restrictive logic: research and treatments are forbidden
unless they fall within certain categories. A more progressive
starting point should be that research and treatments are
permitted unless good reason can be shown for them to be forbidden.
John Gillott works
at Genetic Interest Group.
(1) 'Designer
baby' gives hope to his ill brother, Daily Telegraph,
20 June 2003
(2) Blood
brothers: how newly born Jamie offers hope to Charlie,
Independent, 20 June 2003
(3)
Blood brothers: how newly born Jamie offers hope to Charlie,
Independent, 20 June 2003
(4) 'Birth of "saviour
sibling" stirs call for debate on fertility law', Mark
Henderson, The Times, 20 June 2003
(5) Life
and death decisions, by Josie Appleton
(6) Paragraph 50
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