Page URL:

Fletchers given 'saviour sibling' go-ahead

6 September 2004
By BioNews
Appeared in BioNews 274

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 IVF baby who could help treat their son Joshua. Their doctor, Mohammed Taranissi, of the Assisted Reproduction and Gynaecology Centre in London, was invited by the HFEA to submit a test case licence application for the family. He later said that he would challenge the authority in court, should the application prove unsuccessful.

Joshua Fletcher has Diamond Blackfan anaemia (DBA), a rare blood condition that could be cured with a cell transplant from a tissue-matched donor. Having failed to find a matched living donor, his parents applied to use PGD (preimplantation genetic diagnosis ) to conceive an IVF baby who would be able to provide Joshua with compatible umbilical cord blood cells. If transplanted to Joshua, these cells could stimulate his body to produce its own healthy red blood cells.

In 2002, the HFEA turned down a request from the Whitaker family, who were also seeking to use PGD to conceive a tissue-matched baby to help a sibling with DBA. Michelle and Jayson Whitaker later travelled to Chicago to conceive their son James, born in June 2003, whose umbilical cord blood is now being used to help treat their son Charlie.

PGD involves carrying out a genetic test on IVF embryos, usually to select those unaffected by a particular disease, which are then returned to the woman's womb. The HFEA originally refused the Whitakers permission to have the treatment in Britain because the cause of Charlie's DBA was unknown. Some cases of DBA are caused by a mutation in a gene called RPS19, but for most, the trigger remains unknown. However, the authority has allowed families with children affected by beta thalassaemia to have similar treatment, since a genetic test for this blood disorder is available.

In July, the HFEA changed its policy on 'saviour siblings' - babies who are able to provide genetically matched cord blood for an existing sick child. The authority relaxed its rules so that families in the same situation as the Whitakers and Fletchers would be able to have the treatment, as well as those families where a genetic cause for the condition can be identified. The Fletcher decision is the first individual decision based on the changed policy. Future applications for the treatment, said the HFEA, will be looked at according to their 'individual merit'.

Couple win right to 'designer baby' in order to treat son
The Scotsman |  7 September 2004
Doctor hopeful of designer baby go-ahead
The Belfast Telegraph |  6 September 2004
Go ahead for 'designer baby'
BBC News Online |  6 September 2004
Parent's joy at lifesaving go-ahead for designer baby
The Daily Mirror |  7 September 2004
21 May 2012 - by Daniel Malynn 
These seven short films provide little more than a string of provocative quotations, which do little in themselves to foster a good debate of a complex issue. While all the speakers' opinions and experiences provide a range of views on the issues raised by genetic screening, there is a clear lack of consistency in some of the arguments. The question posed in the title loosely runs throughout but the films lack collective coherency with little linkage between them....
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....
5 May 2006 - by Dr Jess Buxton 
Another UK couple has received permission to try and conceive a 'saviour sibling' to provide cord blood stem cells to help treat their seriously ill child. Charlie and Catherine Mariethoz, from Leicester, have been granted a licence from the Human Fertilisation and Embryology Authority (HFEA) to...
22 August 2005 - by BioNews 
Charlie Whitaker, the boy who was once at the centre of a fierce debate over so-called 'saviour siblings', has been given the 'all-clear' by doctors. Six-year-old Charlie, who had Diamond Blackfan anaemia (DBA), received a transplant of cells taken from the umbilical cord of his brother James last year. Last...
8 August 2005 - by BioNews 
Three-week old Jodie Fletcher, the first 'saviour sibling' conceived in the UK, is a perfect genetic match for her three-year old brother, Joshua, who suffers from Diamond Blackfan anaemia (DBA), an incurable blood disorder. In September 2004, the Human Fertilisation and Embryology Authority (HFEA) granted Joe and Julie Fletcher permission...
6 September 2004 - by Dr Kirsty Horsey 
Today we report that the UK's Human Fertilisation and Embryology Authority (HFEA) has decided to allow Joe and Julie Fletcher to conceive a so-called 'saviour sibling' for their sick son, Joshua. Those that have followed this debate over the past few years will know that the Fletchers are not the...
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...
to add a Comment.

By posting a comment you agree to abide by the BioNews terms and conditions

Syndicate this story - click here to enquire about using this story.