Associate Professor Terry Kaan teaches Medical Law & Bioethics at the
National University of Singapore's Faculty of Law. He reflects on the
recent case of the Siamese twins Jodie and Mary, and its implications
for the role of bioethics in the face of rapid medical advances.
ne of the most tragic cases to come before the English Court of
Appeal in recent years is the case of the conjoined Siamese twins
"Jodie" and "Mary". Few people following the reports of the case in the
media could have come away unaffected by the plight of the parents, and
that of Jodie and Mary themselves.
The question before the Court of Appeal was, quite starkly, whether it
should order the surgical separation of the twins in order to give Jodie
a chance at survival, with the knowledge that such an operation would
mean the certain death of Mary. The medical evidence before the Court
was that the alternative would be the almost certain death of both of
the twins - but the medical evidence on when this might happen was
conflicting. Perhaps "three to six months", perhaps "even a few years",
but it was agreed that there was no prospect of the twins surviving in
their conjoined state into adolescence, much less adulthood.
And if the operation were to have any chance of success, it had to be
carried out within the first 3 or 4 months of their short lives. This
was so, because Mary was growing at the expense of Jodie: Mary's heart
and lungs were not functional, so she depended on Jodie entirely for
oxygen and blood circulation. Jodie was conscious and appeared to have
the responses and reflexes of a normal baby. But Mary had such severe
physical handicaps that, in the words of the Court of Appeal, had she
been born as a single child and not as a conjoined twin, "she would not
have been viable and resuscitation attempts would have been abandoned".
The parents did not want the operation. They felt that they did not
have the right to condemn Mary to death in order to save Jodie. The
doctors caring for the twins thought otherwise, and applied to the court
for permission to have the operation carried out. The courts heard many
arguments of principle from parties in favour of and opposed to the
operation. In the end, the Court of Appeal held that the operation
should go ahead. Eventually the parents and the Official Solicitor
appointed to act for Mary also decided not to take the Court of Appeal's
decision on further appeal to the House of Lords.
On 7 November 2000, the separation operation was carried out. Mary
died. Jodie survived and is now recovering.
What emerges very clearly from the draft report of the case is that
the court was faced with a situation in which it had to decide between
two sets of equally compelling arguments.
Yet the difficulty of the court was that it could give only one answer.
In giving that one answer, would it be in effect be rejecting all the
arguments of principle for the contrary position? If so, how can it be
that moral arguments of unquestionable pedigree conflict with one
another, or be overruled in favour of others? If the court decided in
favour of a given moral principle, would that mean that in the eyes of
the law, the competing moral principle was of lesser authority?
The decision of Jodie and Mary illustrates well the nature of many of
the ethical choices facing us both as individuals, and as a society
today presented with so many advances in medical technology since the
Second World War.
As medical technology advances, more such choices are likely. Nor is
it just a matter of medical technology any more; technological advances
in medicine and medical treatment have been merged in recent years into
the newer and broader front of biotechnology. Advances in biotechnology
have already presented us with some very difficult questions. Should,
for example, couples be allowed to screen embryos fertilised in vitro
for specific genetic properties before implantation?
There is the case of Adam Nash, who was implanted as a fertilised
embryo in his mother's womb only after being screened from among other
fertilised embryos to ensure that he would be a compatible donor of stem
cells for his ailing 6-year-old sister Molly. Then there is the case of
Alan and Louise Masterton of England, who lost their 3-year-old daughter
in an accident. They have four boys, and wanted a new baby girl, but
were denied permission by the regulatory authorities the choice.
There are cases of people with a family history of incurable, crippling
or deadly inherited conditions, or susceptibility to such. Should such
people go for tests, knowing that they will have to disclose the results
to prospective insurers? Should insurers be entitled to such
information at all?
A common thread that runs through all these cases is that the advent of
new biotechnology brings with it difficult choices, the solution of
which mere good intentions are insufficient.
For some, the ability to screen life even before they are implanted in
the womb may bring with it hope of a healthy child for parents who carry
in them the genes for potentially fatal congenital conditions. For
others, that same ability raises the spectre of "designer babies".
If that is the case, what, it may be argued, is the use of bioethics if
it is of no help at all in the very cases where moral guidance is
needed? Do cases like that of Jodie and Mary then demonstrate the
central poverty and impotency of modernbioethics in its inability to help us decide clearly and comfortably?
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