Having
A Child To Save Another's Life 'Selective Breeding' Or Noble Aim?
By Patrick Goodenough
CNSNews.com Pacific Rim Bureau Chief
December 27, 2001
Pacific Rim
Bureau (CNSNews.com) - Researchers in Australia are applying for permission
to help parents conceive specially selected babies whose primary aim
will be to save the life of siblings with a fatal blood disease.
The procedure,
already used once - apparently successfully - in the U.S., has set off
debate, as the potential benefits, risks and ethical implications are
weighed against each other.
Doctors at
the Monash Institute of Reproduction and Development in Melbourne are
to seek approval in the days ahead on behalf of three couples, two Australian
and one from New Zealand, who have children suffering from Fanconi anemia,
a disorder that kills many victims before adulthood.
The couples
want to undergo in-vitro fertilization (IVF) treatment, have a suitable
embryo selected, implanted into the womb and carried to term. At the
birth, blood will be removed from the newborns' umbilical cord and the
cells transplanted into the sick sibling.
The selection
phase is two-fold - the embryo must firstly not itself carry the disease,
and secondly, its tissue must match that of the sick child.
Already,
screening of embryos is often carried out prior to IVF treatment, to
prevent genetic abnormalities from being passed on. The procedure is
called pre-implantation genetic diagnosis (PGD) and is opposed by many
pro-lifers.
But tissue
type-testing at that stage of the reproductive process has not been
allowed in most countries up to now.
Prof. Alan
Trounson, an IVF specialist at the Monash Center, rejected claims that
what he wanted to do constituted genetic engineering. "It's cell
therapy," he said, "no
different from any bone marrow transplant."
Trounson
said he was confident the plan would be approved by the IVF ethics body
in the state of Victoria, the Infertility Treatment Authority.
A spokesperson
for the authority said it would have to assess the legality of the matter.
Named for
a Swiss pediatrician, Guido Fanconi, Fanconi anemia is an inherited
disorder that leads to bone marrow failure. It affects one in 300,000
children, of all ethnic backgrounds.
A successful
transplant of bone marrow or umbilical cord blood cells can save the
life of a sufferer. In the three couples' cases, all have been unable
to find a matching donor for a marrow transplant.
Any second
child they have through natural means would have a one in four chance
of inheriting the defective gene from both parents - and even if it
did not, it would not necessarily be able to provide a tissue match
for the sick sibling.
Margaret
Tighe, a leading Australian pro-life campaigner, warned that allowing
the procedure to go ahead could open a Pandora's box, with parents eventually
being able to select embryos for physical characteristics or athletic
ability, while those not chosen were destroyed.
Early-stage
human beings would be subject to "some sort of experiment without
its consent," she said. "There are boundaries you shouldn't
cross."
In August
2000, Colorado parents Lisa and Jack Nash had a IVF baby in order to
save the life of their six-year-old daughter, who was dying from Fanconi
anemia. Reports six months later said the treatment had been successful.
The Australian
specialists decided to go ahead with the application after Britain's
regulatory body earlier this month agreed parents there could have PGD
and tissue typing of their embryos to produce a child whose blood cells
could be used to treat an existing son, who has another blood disorder.
The UK Human
Fertilization and Embryology Authority stipulated that this should only
happen "in very rare circumstances and under strict controls,"
that all other avenues to cure the sick child should have been exhausted,
and that embryos should not be genetically modified to provide a tissue
match.
Even with
those restrictions, the decision drew fire from pro-lifers in Britain,
who said that while curing a sick child was a "noble aim,"
it would not be in the best interests of the baby being produced.
"All
children should be accepted and loved unconditionally," said Nick
Harris of the campaign group, Life. "Any child resulting from this
procedure will be chosen and accepted only on condition that they can
provide tissue for another person.
"As
this child grows, the parents will have to explain that he/she wouldn't
exist if it weren't for the bone marrow he/she happens to carry. This
could be a terrible burden for any person to shoulder."
Ethical
dilemma
Some proponents
see it differently, pointing out that many parents decide to have another
child for any number of reasons, some of them questionable, rather than
simply for the sake of having one.
The geneticist
involved in the Nash case in the U.S. argued at the time some couples
have a baby in a bid to save a failing marriage, or to benefit from
tax breaks.
Dr. Jan Crosthwaite,
a senior lecturer in medical ethics at the University of Auckland in
New Zealand, took a similar approach Thursday, noting that some babies
were planned primarily to provide a companion for an existing, only
child.
Crosthwaite
said it was generally felt in the ethics community that a procedure
could be seen as acceptable if the risk to the child is minimal, if
good will result, and if the end could not be achieved in any other
way.
"If
you put that sort of reasoning across in this particular case, it would
seem to give a reasonable argument for what's going on," she added.
"In
my own view, the issue is a matter of whether you can do more good than
harm, in a way that is respectful of human relationships."
She conceded
that, if one held the opinion that "it's wrong to ever use a person
as a means to somebody else's end, then you'd have a serious concern
about whether children are being conceived as instruments for others."
"Also,
some people have been very concerned about whether a parent ever has
the right to subject a child to procedures for other than his own good."
Supporters
of advances in human reproductive technology often cite the "therapeutic"
aim of procedures like embryo selection or embryonic stem cell experimentation.
Some would
argue that it would be unethical not to use all available means to save
a life. Such a contention came up during the debate in the U.S. ahead
of President Bush's much-anticipated announcement last August about
federal funding for embryonic stem cell research.
But Crosthwaite
said that there were always moral limits to what one could do to reach
a worthwhile aim.
She cited
a commonly-used riposte to the argument: If you have five dying patients
in a hospital ward, each in desperate need a particular organ donation,
would you butcher one of them to save the other four?
"You
can't say it's unethical not to save those [four] lives," she said.
"It depends on what the action is that would be necessary to do
so."
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