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Law Lords back 'saviour siblings'

28 April 2005
By BioNews
Appeared in BioNews 306

The UK's House of Lords has ruled that the decision taken by the Human Fertilisation and Embryology Authority (HFEA) to allow the Hashmi family to try to create a 'saviour sibling' was lawful. The highest court in the UK heard the appeal case of Quintavalle (On behalf of Comment on Reproductive Ethics) V HFEA last month. The ruling means that the HFEA can continue to issue treatment licences for families who want to conceive an IVF baby that could provide tissue-matched cord blood to help treat a sick sibling.

The Hashmis were given permission by the HFEA in 2002 to use PGD and tissue typing, in order to have a healthy child that would also be a genetic match for their seriously ill son, Zain. They hoped that cells taken from the umbilical cord of the new child - dubbed a 'saviour sibling' - could be used to treat Zain's condition, a rare inherited blood disorder called beta thalassaemia. Six year-old Zain is kept alive by regular blood transfusions, and there is no matched donor for him on the bone marrow register.

Comment on Reproductive Ethics (Core), a pro-life pressure group, took a judicial review action against the HFEA's decision in 2002. The High Court ruled that the HFEA had acted outside of its remit, and that the treatment could not go ahead. But the Court of Appeal, in April 2003, overturned that decision, meaning that the Hashmis could continue with attempts at the treatment. Shahana Hashmi has since miscarried a number of times, but the couple were planning to try the procedure again early in 2005.

However, Core appealed against the Court of Appeal decision, and the case was heard by Lords Steyn, Hoffman, Scott, Walker and Brown in March 2005. Core has now lost this case, and will have to pay all the resulting legal costs. Its director, Josephine Quintavalle, said after today's ruling: 'We are absolutely devastated. This decision will open the door to designer babies, but the door will be closed again when parliament looks at this and realises the error'.

Shahana Hashmi said that 'it's been a long and hard battle for all the family and we have finally heard the news we wanted to hear', adding 'we feel this ruling marks a new era and we are happy to move forward now'. Simon Fishel, the fertility doctor treating the Hashmis said: 'I trust that a line has now been drawn in our society whereby individual families, with guidance from their medical practitioners, can make their own choices without extraordinarily long and compromising legal battles'.

Alison Murdoch, chair of the British Fertility Society (BFS), agreed with Dr Fishel, saying that the BFS 'agrees with many of the MPs on the recent select committee on reproductive technologies who argue that unless there is evidence of harm to the child or society, decisions about reproduction should be left with families'.

Laura Riley, director of Progress Educational Trust, commented that the House of Lords decision 'should be applauded', but said that 'unfortunately for the Hashmis themselves, their attempts to have a healthy child who could also help save the life of their son Zain have been severely hampered by pro-life group Core's efforts, over the last two and a half years, to deny the legitimacy of this procedure. Today's ruling proves that the Human Fertilisation and Embryology Authority, which has had Parliament's authority to make these decisions since 1991, was right to license the Hashmi's treatment in February 2002'.

Judgments - Quintavalle v Human Fertilisation and Embryology Authority
The House of Lords |  28 April 2005
Law lords back couple's plea to create designer baby to cure son
The Daily Telegraph |  29 April 2005
Law lords back 'designer babies'
The Guardian |  28 April 2005
Law Lords Back 'Designer Babies'
The Scotsman |  28 April 2005
24 July 2009 - by Nisha Satkunarajah 
'My Sister's Keeper' is based on a book by the author Jodi Picoult. The youngest daughter of the Fitzgerald family, Anna (Abigail Breslin), decides to sue her parents for the ‘medical emancipation’ of her own body. Having been conceived through IVF and the resulting embryo tissue typed to ensure it was a match for her sick existing sibling, Anna was born for the primary reason of keeping her older sister, Kate (Sofia Vassilieva), a leukaemia patient, alive....
7 May 2005 - by Professor Sally Sheldon 
The recent House of Lords decision in Quintavalle (on behalf of Comment on Reproductive Ethics) v HFEA [2005] represents what will hopefully be the last stage in a long legal battle for the Human Fertilisation and Embryology Authority (HFEA) and Raj and Shahana Hashmi. The Hashmis have a son of...
22 November 2004 - by BioNews 
The parents of five-year-old Zain Hashmi, who is affected by the inherited blood disorder beta thalassaemia, are to launch a bone marrow donor appeal this week. Raj and Shahana Hashmi first hit the headlines in 2001, when they requested permission to use preimplantation genetic diagnosis (PGD) to try and conceive...
6 September 2004 - by BioNews 
The licensing committee of the UK's Human Fertilisation and Embryology Authority (HFEA) met today to rule whether a couple can create a 'saviour sibling' to treat their seriously ill two-year-old son. It has decided that Joe and Julie Fletcher, from Northern Ireland, will be allowed to try to conceive an...
22 July 2004 - by BioNews 
The Human Fertilisation and Embryology Authority (HFEA) has decided that no distinction should be between the cases of the Hashmi family and the Whitaker family: that preimplantation genetic diagnosis (PGD) for the sole purpose of tissue typing should be allowed. The news gives hope to many families who may now...
19 July 2004 - by BioNews 
The UK's Human Fertilisation and Embryology Authority (HFEA) is reported to be considering changing its policy on 'saviour siblings' - babies who are able to provide genetically matched cord blood for an existing sick child. The news follows a recent request from the Fletcher family, who are seeking permission to conceive...
13 April 2004 - by BioNews 
A UK fertility doctor says he is prepared to launch a legal challenge on behalf of a couple who want to conceive a 'saviour sibling' for their ill son. Two-year old Joshua Fletcher has Diamond Blackfan anaemia, a rare condition that could be cured with a blood stem cell transplant...
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