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‘Saviour Siblings’: Should the Law Allow Such Burdens?

‘Saviour Siblings’: Should the Law Allow Such Burdens?

As medicine advances, it is by all means certain that so does the law that regulates medical practice. There ought to be no mistakes in providing proper health care to the people who need it, otherwise legal consequences may follow. Recent reports show that the number of medical negligence cases have increased in recent years by a dramatic percentage, most of them against, or involving, the NHS. This trend can now be found in both tort and public law.

Assisted reproductive technologies and particularly in vitro fertilisation (IVF) are, to some extent, still seen as controversial in modern society due to the absence of a concrete legal background. A significant and sensitive issue which follows from this is the creation of so-called ‘saviour siblings’ which refers to children who are conceived through IVF and are born to provide an organ or stem cell transplant to a sibling suffering from a fatal disease or genetic condition. Although this issue caught the public’s attention by way of fiction in the early 2000s following the release of the novel ‘My Sister’s Keeper’ by American author Jodi Picoult, examples can also be found in real life.

Following the events in 2003, the HFEA was confronted with another important challenge…

In the United Kingdom, the debate around ‘saviour siblings’ flared with particular heat years ago when two families asked the Human Fertilisation and Embryology Authority (HFEA) for permission to select embryos that were perfect tissue matches for older siblings who were suffering from blood disorders. Although not conceived in the United Kingdom, in 2003 the birth of Jamie Whitaker who had been described as Britain’s first ‘saviour sibling’, put pressure on the authorities to allow the selection of embryos with a view to save the life of an already-born brother or sister. The HFEA refused permission for Jamie Whitaker’s screening in the United Kingdom and so his parents had to travel to Chicago, USA, to carry out the procedure. He proved to be a perfect match for his brother Charlie and the treatment was successful.

Following the events in 2003, the HFEA was confronted with another important challenge when the disease-carrying parents of Zain Hashmi, a four-year-old boy who suffered from a rare blood disorder, sought to create a ‘saviour sibling’ for him after their worldwide search for a donor had failed. Although very similar to the case of Charlie Whitaker, Zain’s case differed in one significant aspect: he suffered from a hereditary disease rather than a sporadic one as in Charlie’s case, which meant that the Hashmis’ embryo would be at risk of being born with the same defect. On these grounds, the HFEA granted permission for the ‘saviour sibling’ creation, reasoning that it was for the benefit of the future child to ensure he would not develop the same condition. The House of Lords ruled that tissue typing could be considered to be a medical service for the purpose of assisting women to carry children on the basis of paragraph 1 (1)(d) of Schedule 2 of the Human Fertilisation and Embryology Act 1990 (HFE).

Moreover, the Law Lords considered that where the mother’s purpose was to create a ‘saviour sibling’, screening would be lawfully authorised in respect of determining the suitability of the embryo. The legal response of the United Kingdom to the decision in the case of Zain Hashmi was the amendment of the HFE Act in 2008, making it clear that embryo testing to ensure an implanted embryo is a ‘saviour sibling’ is permitted. The Act now regulates, inter alia, the means of assisted reproduction and embryo research in light of recent developments in medical technology and society’s attitudes towards this matter.

The creation of ‘saviour siblings’ has been legally challenged by way of judicial review after the HFEA gave their permission for tissue typing in the case of Zain Hashmi. The incentive pertains to the pro-life pressure group, Comment on Reproductive Ethics (CORE) which argued that in granting the Hashmis’ permission, the HFEA had acted beyond the statutory provisions of the HFE Act 1990. In the first instance, the High Court found in favour of CORE, but this decision was soon reversed by the Court of Appeal, meaning that the family could continue with their attempts to create a perfect tissue match for their son Zain.

The law on ‘saviour siblings’ can be therefore regarded as insecure (legal) ground on which parents step…

Josephine Quintavalle, co-founder of CORE, brought another action of judicial review of the HFEA’s decision again in the case of R (Quintavalle) v Human Fertilization and Embryology Authority [2005] UKHL 28 alleging that the authority had acted ultra vires. CORE’s main argument in this case was that the medical procedure was not designed to assist women to carry children, and for this reason it was unlawful. CORE’s argument did not, however, persuade the Court or Appeal or the House of Lords which ruled that the decision taken by the HFEA to allow the Hashmi family to create a ‘saviour sibling’ was indeed lawful.

Arguments pro and contra ‘saviour siblings’ are still present, even after failed legal attempts to cease this medical practice. To give examples:

For:
  • in some cases, it is the only cure for a dying child
  • it does not physically damage the saviour sibling
  • there are no consequences for either of the siblings
  • a new human being is brought to life after all.
Against:
  • it might be considered immoral
  • it might psychologically damage the saviour sibling (possible wrongful life claims)
  • the saviour sibling is seen as a commodity rather than a person
  • parents might take advantage of the screening procedure by choosing their desired features of the saviour sibling (‘designer baby’).

Due to the important implications which may arise, it is still unclear, even after the introduction of the HFE Act 2008, whether the creation of ‘saviour siblings’ stands as the best solution for a dying child. Apart from the fact that a ‘saviour sibling’ would be put under substantial pressure to undergo a transplant for the other sibling, she or he might be too young to give consent to their donation, which could then attract legal liability on the part of the parents. The law on ‘saviour siblings’ can be therefore regarded as insecure (legal) ground on which parents step in trying to save the lives of their sick children.

Raluca Rosu is a second year LLB student at the University of Westminster, having achieved a first class mark in her first year of study. She is particularly interested in tort law and its derivates, such as medical negligence, employment law, defamation, property rights. She intends to specialise in these areas of the law and pursue her interests on a LPC course after she graduates.

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