Posted on 22-7-2004

Designer Babies Approved
by Sarah Boseley, July 22, 2004, The Guardian

"It is wrong to create a child simply as a means to an end, however good
that end might be, because to do so turns that child into an object. This
violates the basic ethical principle that we should not use people as
tools."


The last barrier to the creation of babies specifically to save the life
of an ailing brother or sister was swept away by the fertility regulatory
body yesterday to the delight of scientists and alarm of those who fear
the advent of a designer baby age.

The decision of the Human Fertilisation and Embryology Authority gives new
hope to the parents of a two-year-old boy with a potentially fatal blood
disorder who want to select a baby who will be a tissue match for their
son.

But doctors and regulators insisted yesterday that strict controls and
decisions taken on a case-by-case basis will continue to prevent the
selection of babies for their hair or eye colour or their intelligence,
should that ever become possible.

The boy, Joshua Fletcher, from Northern Ireland, suffers from Diamond
Blackfan anaemia, which can only be cured by a bone marrow transplant. His
parents have not been able to find a tissue match. They asked the HFEA for
permission to have their embryos, to be created in the fertility lab,
tested in the hope of finding a sibling who can be a donor. The baby's
umbilical cord blood would be used for the transplant.

The full 18-member HFEA decided in a landmark ruling to change the rules
so that tissue-matching tests could be carried out on embryos even though
they are not directly in the interest of the future baby, but would only
benefit the sick brother or sister. The authority concluded that research
had shown the tests, although invasive, did no harm to the embryo and were
acceptable if they might save a child's life.

Fertility doctors lined up to applaud the decision. "The often-used term
'designer baby' is misleading here - we are not talking about engineering
a child to have a certain hair colour or aesthetic characteristic. This is
about families being able to make a decision that their new baby could
save the life of its older brother or sister," said Alison Murdoch,
chairman of the British Fertility Society. "These are difficult,
distressing and complex real-life situations... it is important that the
views and interests of the patients are always put first."

Simon Fishel, who runs the Care fertility clinic at the Park hospital in
Nottingham, said: "I have no doubt that this is the right decision. "The
previous stance of not allowing the selection of an embryo for tissue
typing in our society was ethically unjustified. In the real world these
families are often faced with trying to conceive a tissue-matched child
through natural conception and this can result in numerous heartbreaking
terminations of pregnancy, the birth of children not tissue matched or
further children with a life threatening disease."

Lord Robert Winston, professor of fertility studies at Imperial College,
London, dismissed the designer baby fears. "There seems little problem for
our society as a whole if a few families at risk decide to conceive a baby
of a particular tissue type."

The debate about whether to allow selective conception in particular
medical cases began when an application by Jayson and Michelle Whitaker,
whose son Charlie had the same condition as Joshua Fletcher, was turned
down by the HFEA in 2002 on the basis that there was no benefit to the
potential baby.

There was a public outcry over a perceived anomaly, because Raj and
Shahana Hashmi had earlier been given permission to undergo the same
procedure. Their son Zain suffers from thalassaemia. Because embryos can
undergo a genetic test to ensure they do not carry thalassaemia (unlike
Diamond Blackfan anaemia), the HFEA permitted tissue typing to take place.

Yesterday the HFEA said in a statement that it was now satisfied there is
no increased risk to the embryo from the tissue typing test. "The HFEA has
now carefully reviewed the medical, psychological and emotional
implications for children and their families as well as the safety of the
technique. There have been three further years (since the policy was laid
down in 2001) during which successful embryo biopsies have been carried
out, both in the UK and abroad, and we're not aware of any evidence of
increased risk."

The HFEA chairwoman, Suzi Leather, said that research showed that the
babies were not harmed and that the transplant risks were low. "Faced with
potential requests from parents who want to save a sick child, the
emotional focus is understandably on the child who is ill," she said.

But David King, director of the pressure group Human Genetics Alert, said:
"It is wrong to create a child simply as a means to an end, however good
that end might be, because to do so turns that child into an object. This
violates the basic ethical principle that we should not use people as
tools."