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Time to review 'saviour siblings' law?

1 September 2003
By Juliet Tizzard
Director, Progress Educational Trust
Appeared in BioNews 223
A recent interview in the Times newspaper revealed that Suzi Leather, chair of the Human Fertilisation and Embryology Authority (HFEA), thinks that the time has come for a change to the UK's embryology laws.

The interview with Ms Leather referred to a number of procedures which might need to come under the regulatory control of the HFEA. These procedures include sex selection by sorting fresh sperm; gamete intra-fallopian transfer - in which eggs and sperm are transferred to the patient before fertilisation; and intra-uterine insemination, involving the injection of fresh sperm into the female patient. The HFEA has been considering the issue of sperm sorting for some time and is due to report its findings in October. If it recommends that this kind of sex selection be brought under HFEA control, the legislation will need to be extended to cover the other treatments using fresh eggs and sperm which are not currently regulated by the HFEA, in order to be consistent.

Suzi Leather also discussed the need to re-examine particular procedures already regulated by the current legislation. The HFEA has been issuing licenses for PGD (preimplantation genetic diagnosis ) procedures for some years now. However, one particular licence application on behalf of the Hashmis, which involved the use of PGD and tissue typing, made the authority think again about how it regulates this technique. Although it decided to issue that particular licence, it declined a later application for PGD and tissue typing on the grounds that the procedure was going to be performed for tissue typing alone. Then, in January 2003, the HFEA faced a high court challenge, arguing that it had no legal powers to regulate PGD and tissue typing in the first place.

The legal issues on this matter are now settled: the challenge was thwarted and the ruling confirmed that the HFEA does have decision-making powers in this area. However, for Suzi Leather, the issue remains a live one: she describes PGD as 'another area where Parliament should frame our regulatory activities afresh'. She told the Times, 'I definitely think the whole issue of what we're going to permit in terms of selecting characteristics of embryos... is an issue not just for patients or doctors or the HFEA. It is an issue for civil society and thus for Parliament.'

Progress Educational Trust is helping to further public debate on this issue by holding an evening debate in London on 16 October 2003. Entitled Saviour siblings, the debate will bring together three speakers (including HFEA chief, Suzi Leather and Whitaker family clinician, Mohammed Taranissi) with different views on the issue to discuss with the audience the ethical, legal and medical issues raised by these recent cases.

7 March 2011 - by Sujatha Jayakody 
The parents of a seriously ill child plan to have a 'saviour sibling' whose umbilical cord cells could be used to treat the child's life threatening condition....
17 August 2009 - by Ailsa Stevens 
Twins born following IVF treatment to select embryos which would be a tissue match for their elder brother are thought to be the first incidence in the UK of multiple 'saviour siblings'. Out of just twelve licences granted by the Human Fertilisation and Embryology Authroity (HFEA) to permit families to create a saviour sibling, only this one has resulted in twins....
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...
21 July 2003 - by BioNews 
This week sees more good news for Michelle and Jayson Whitaker, the British couple who were refused permission by the UK's Human Fertilisation and Embryology Authority (HFEA) to use embryo screening (PGD) to provide a bone marrow donor for their sick son. The Whitakers, who travelled to Chicago for the...
23 June 2003 - by Juliet Tizzard 
This week, the British media has gone crazy about a newborn baby. His name is James Whitaker and he was conceived in order to provide stem cells for his older brother, Charlie. In the reams of commentary which followed James' arrival into the world, two main ethical issues emerged. The...
23 June 2003 - by BioNews 
James Whitaker's birth has provoked calls for fertility laws in the UK to be reformed. The Human Fertilisation and Embryology Act 1990 is now out of date due to advances in embryology and fertility treatments, say its critics, and it should be changed to allow the tissue typing procedure to...
15 April 2003 - by Dr Colin Gavaghan 
A] defeat for society at large and certainly an overwhelming defeat for Parliamentary democracy.' So read the response from Josephine Quintavalle, Director of CORE (Comment on Reproductive Ethics), to April's UK Court of Appeal decision concerning tissue typing. The Court had reversed an earlier decision, in which a judge had...
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