A UK couple has been refused permission to create a baby that could save the life of their seriously ill son. The controversial decision highlights the lack of moral and legal clarity in this fast-changing area of medicine, say ethicists.
Michelle and Jayson Whitaker鈥檚 three-year-old son suffers from a rare blood disorder called Diamond-Blackfan anaemia. To live a normal life, he needs a transplant of stem cells from the umbilical cord of a perfectly matched donor. But the regulatory UK Human Fertilisation and Embryology Authority rejected his parents鈥� application to create and screen embryos, with the aim of producing a tissue-matched baby.
The procedure would be 鈥渦nlawful and unethical鈥�, says the HFEA, because tissue-type screening alone is not permitted in the UK. It can only be used in combination with genetic screening, to ensure an embryo is itself free from a serious congenital disease. Charlie Whitaker鈥檚 condition is not inherited 鈥� and so could not be screened for.
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In 2001, the HFEA did allow an IVF clinic to genetically select embryos in order to create a healthy baby that was also tissue-matched with a three-year-old sibling, Zain Hashmi, who suffers from the fatal blood disorder thalassaemia.
Tissue-matching alone does not benefit the health of the embryo, making it morally unacceptable, say some ethicists, because the baby would be created only to treat an existing person.
But in December 2001, the HFEA鈥檚 own ethics committee decided that tissue-matching should be permitted in exactly this type of case, claims the Whitakers鈥� doctor, Mohammed Taranissi, director of the Assisted Reproduction and Gynaecology Centre, London.
鈥淭oo rigid鈥�
The HFEA admits that medical and scientific practice is changing fast, and that its governing act of 1990 might be out of date. 鈥淚t鈥檚 clearly the case that the Act is now quite old. There is a strong argument to look at it again,鈥� a spokeswoman told the BBC.
Simon Fishel of the CARE Park Hospital in Nottingham, where the Hashmis are being treated, says the HFEA is caught by tensions between different groups in society. 鈥淚t recognises it must take the middle road,鈥� he says.
鈥淎nd I can鈥檛 see any other body better getting to grips with the matter intellectually and compassionately, though I don鈥檛 always agree with the HFEA鈥檚 decisions,鈥� he told New 杏吧原创.
Jonathan Glover at the Centre of Medical Law and Ethics at King鈥檚 College, London, thinks the HFEA cannot be criticised if it is acting in accordance with the law. 鈥淏ut it does seem to be pretty terrible that if it weren鈥檛 for the fact they could take the problem abroad, a child would die as a result of a too-rigid law,鈥� he told New 杏吧原创.
Debate in parliament
Richard Nicholson, editor of the Bulletin of Medical Ethics agrees the HFEA needs overhauling. But he says its decision was right, though for the wrong reasons. The reason was 鈥渢echnical, whereas the HFEA should have come out with the ethical decision that this sort of procedure should not be permitted,鈥� he said.
There should be new legislation, and new ways of selecting members of the HFEA to ensure ethical views are properly represented he argues.
In July, a House of Commons Select Committee report criticised the HFEA. It 鈥渄oes valuable work with limited resources but is not functioning well. It has frustrated licence applicants and failed to engage with the public,鈥� said Ian Gibson, chair of the committee. Gibson thinks Parliament should be debating and making key decisions in the field.
鈥淏ut for a parliamentary group to say they could do a better job is nonsense,鈥� Fishel says.