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8-Humans: UK 'designer baby' ruling condemned



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TITLE:  'Designer baby' ruling condemned
SOURCE: British Broadcasting Corporation
        http://news.bbc.co.uk/hi/english/health/newsid_2134000/2134314.stm
DATE:   July 18, 2002

------------------ archive: http://www.gene.ch/genet.html ------------------


'Designer baby' ruling condemned

The HFEA regulates fertility treatment in the UK. The body which gave the 
go-ahead for a controversial "designer baby" has been heavily criticised 
for the way it handled the decision. The Human Fertilisation and Embryology 
Authority (HFEA), which regulates IVF clinics, said a Midlands family could 
attempt to create an baby genetically selected to help treat a desperately-
ill brother.

However, in a report published on Thursday, the House of Commons Science 
and Technology Committee said it should have consulted more widely on the 
issue. It also accused the watchdog of stifling the latest stem cell 
research with bureaucracy. The committee's report said that the HFEA had 
failed to consult the public fully before allowing the Hashmi family to go 
ahead with "tissue typing" tests.

These were designed to help select embryos that would match their existing 
son Zain, who suffers from the dangerous blood condition thalassaemia. His 
parents hoped that cells taken from the umbilical cord of the new baby 
could be used to cure Zain's condition.

The committee said that that while there had been an earlier public 
consultation into a different type of genetic testing of embryos, the 
Hashmi case was completely different, and further consultation should have 
been carried out. In addition, it said: "Democracy is not served by 
unelected quangos taking decisions on behalf of Parliament."


Delayed research

During its investigation, the committee heard complaints from researchers 
that getting permission for scientific experiments involving embryos took 
far too long. Professor Austin Smith, a leading stem cell researcher at the 
University of Edinburgh, told the committee that the HFEA was not only 
slow, but "lacking in specialist knowledge". The committee concluded: 
"Britain is well placed to be a world leader in human genetics and 
embryology research and it is crucial that our scientists, in complying 
with regulatory requirements, are not hampered by bureaucracy."

The HFEA and the regulation it enforces were created by Act of Parliament 
in 1990 - but the MPs say that scientific progress in the past decade means 
that an entirely new law is needed. The committee said: "The government's 
apparent reluctance to enact new legislation in this sensitive area has led 
to a position where the 1990 Act is open to legal challenge. "We recommend 
urgent action to remedy this and reconnect the Act with modern science."


'Runaway quango'

The HFEA is also looking for legal reforms - currently, while it regulates 
the use of embryos, the use of unfertilised eggs and sperm is outside its 
remit. Dr Maureen Dalziel, its chief executive, said: "The HFEA recognises 
that it too needs to change to keep pace with scientific and medical 
advances, make its operating procedures easier and quicker and meet the 
growing demand from the public for more openness and debate on decisions of 
ethical importance." It is also looking for more money from clinics to 
expand its role.

Pro-life groups were quick to welcome the critical report. Comment on 
Reproductive Ethics (Core) is currently planning a High Court challenge to 
the Hashmi HFEA decision. A spokesman said: "The presumption that 
Parliament had in some willing way delegated this power to the HFEA, as 
expressed so arrogantly by former chair, Ruth Deech, has been strongly 
rejected by the Science and Technology Report."

A spokesman for Life UK said: "We call upon Parliament to carry out a 
radical reform of this runaway quango. "Its powers should be carefully 
restricted, its membership more balanced, its duty to respect and protect 
vulnerable human life clearly spelt out."



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