Saviour SiblingsEmbryo and the Law

The creation of a “saviour sibling” involves the selection of an embryo (via HLA-tissue typing and PGD) that, when born, could provide umbilical cord stem cells or tissue to an older sibling suffering from a serious medical condition that may be treated by such a donation.

The 1990 HFE Act did not contain any specific legislation with regards “saviour siblings”. However, a number of high profile cases soon occurred to emphasise the need for clear-cut regulations surrounding the concept (see following case studies).

Recognising this need for guidance the 2006 Department of Health review of the HFE Act 1990 recommended that the creation of saviour siblings be permitted “to enable the identification of a tissue match for an older sibling suffering from a life-threatening illness, where umbilical cord blood is to be used in treatment.”

The 2008 HFE Act upheld this recommendation and, as such, as of October 2009, the creation of saviour siblings (via PGD with histocompatability (tissue) typing) will for the first time be legitimised in cases where the older sibling suffers:

from a serious medical condition which could be treated by umbilical cord blood stem cells, bone marrow or other tissue of any resulting child.

The Act does however stipulate that the donation of “any other tissue” does not allow any whole organ donation from the created child.

If you use one of your children to save the life of another, are you being a good mother or a very bad one?

This is the question that plague’s Anna’s mother in Jodi Picoult’s “My Sister’s Keeper.”

In the novel, Anna is purposefully selected as an embryo to provide umbilical cord stem cells in order to help treat her older sister who is suffering from acute promyelocytic leukaemia (APL). However, due to relapses in her sister‘s condition, Anna has been increasingly asked to donate further tissue and is at the point of seeking medical emancipation from her parents due to being asked to donate a kidney.

View My Sister’s Keeper Trailer

Picoult’s novel is a work of fiction but it does emphasise the strength of debate both for the families affected by the decision to create a saviour sibling and for the clinicians and legal system which have to regulate the practise.

The debate surrounding saviour siblings first arose in 2000, following the case of the Nash family in the USA.

Case Study: The Nash Family

The Nash family had a six-year-old daughter suffering from rapidly progressive bone marrow failure and myelodysplastic syndrome, secondary to the rare but fatal disorder of Fanconi anaemia.

The couple went through a multi stage legal battle in order to gain permission to have IVF with PGD in order to transplant a suitable embryo.

Following four failed attempts, baby Adam was born in August 2000, free from Fanconi anaemia and a suitable tissue match for his sister. A transplant of stem cells from Adam’s placental and umbilical cord blood stem cells was soon made to his sister. Within 3 years of the transplant she had shown haematopoietic and immune recovery.

The decision in the Nash’s case eventually went in their favour and their daughter was successfully cured due to the creation of her baby brother Adam.

However, as the following cases emphasise, since its introduction the debate over who should be allowed to use this technology has been a long and complicated one.

Case Study: The Hashmis

Shahana Hashmi knew that she was a carrier of the genetic mutation for beta thalassaemia, a condition which, without medical care, is fatal within a few years of life.

As such, she employed the use of PGD prior to conception of her child to ensure that he/she would be born completely free of the disease. Sadly, PGD was unsuccessful and Shahana’s son (Zain) was born with the condition.

Shahana and her husband Raj had four further children (and a failed pregnancy), none of whom were a tissue match for Zain.

The Hashmis therefore decided to apply to the HFEA for permission to use PGD to select a suitable embryo that would be free of beta thalassaemia, and would be able to donate life-saving cord blood to Zain.

The HFEA initially granted the Hashmis application and in 2001 approved PGD to test for specific conditions.

Subsequent to this however, the pro-life organisation ‘Comment on Reproductive Ethics’ (CORE) initiated a court challenge against the ruling claiming that the HFEA should not permit selection between healthy embryos. CORE’S challenge was upheld in the first instance but later overturned by the Court of Appeal and the House of Lords, who ruled that this was an acceptable practice for the HFEA to regulate.

Case Study: The Whitakers

At a similar time to the Hashmis’, the Whitakers requested HFEA approval for the use of PGD with tissue typing to create an embryo that, when born, could serve as a bone marrow donor for their three-year-old son Charlie. Charlie was suffering from the rare disorder of Diamond-Blackfan anaemia; a disorder which, should he not receive a bone marrow transplant, gave him a life expectancy of approximately 30 years. However, in contrast to beta thalassaemia, Diamond-Blackfan anaemia may be associated with a genetic mutation but is not directly caused by one. However, in 2002, despite the clear benefit that the creation of a saviour sibling for Charlie could give him, the HFEA denied the Whitakers application.

The Whitakers could not comprehend why the HFEA granted the Hashmis’ application but denied them their own.

In justifying their decision the HFEA emphasised that the Hashmis were at significant risk of having another child that would be affected by beta thalassaemia but the risk of the Whitakers having another child with Diamond-Blackfan anaemia was no more than that of the rest of the population. The Whitakers’ use of PGD with tissue typing would therefore only serve as a mean of creating a compatible tissue donor for Charlie. The procedure would serve no real benefit for the child conceived, and worse still, may actually place it at risk.

As a result of the HFEA’s decision, the Whitakers travelled to the USA to seek treatment at the same clinic that helped the Nash family. In June 2004 they successfully had a son, Jamie, who was a tissue match and suitable stem cell donor for his elder brother.

However, in the same year that the Whitakers finally gave birth to Jamie, the HFEA changed its ruling over the allowance of saviour siblings, granting the Fletchers application to conceive a saviour sibling for their child who, like Charlie, had Diamond-Blackfan anaemia.

Prior to 2004, the practice was only permitted when the child to be born would also benefit from PGD by preventing them suffering the same condition as their older sibling. The new ruling allowed the use of the technology solely for the purpose of curing an elder sibling, regardless of whether the child themselves could be affected by a similar disorder should testing not occur.

But why the u-turn in policy? The HFEA code of practice at the time of the Whitakers’ and Nash’s applications stressed the importance of doctors’ responsibilities in considering the welfare of any child born as a result of reproductive technologies as well as the welfare on any existing children the women may have.

Whilst the procedures of PGD with tissue typing and subsequent cord blood removal are not damaging to children, concerns were expressed that further demands placed on the child that could be detrimental to them; as implied by Anna (the “saviour sibling”) in Picoult’s novel:

The first time I gave something to my sister, it was cord blood, and I was a newborn…The next time she relapsed, I was five and I had lymphocytes drawn from me, three times over, because the doctors never seemed to get enough of them the first time around. When that stopped working, they took bone marrow for a transplant. When Kate got infections, I had to donate granulocytes. When she relapsed again, I had to donate peripheral blood stem cells.

Upon review however, the HFEA deemed that, provided there were strict conditions regulating the practice, the welfare of both the child created and their unwell sibling could be equally upheld. Thus it is important to stress that the 2008 Act specifically states what may and may not be taken from a saviour sibling, including banning involuntary organ donation. Also, should any cases be contested, a court of law would hold the younger child’s rights as identical to their unwell sibling.

It has however, equally been argued by supporters of the technology that it is equally feasible that the child may actually like the idea of being able to help their sibling and want to make further donations should they be asked. Fost even argues that even if a child were created to help an existing child but then given up for adoption, the child would still most likely have a loving and happy upbringing; a life that they would not have had were they not created to help their sibling in the first place (Fost 2004).

Finally, does the allowance of saviour siblings contribute to the debate surrounding the potential for designer babies?

Fears have been expressed that we have already seen a dramatic change in policy by the HFEA over the past 20 years. Parents can now select a child for specific characteristics that would enable it to serve as a cure for one already living. Subsequently, in light of parental autonomy and increasing acceptability of the use of such technologies, many question how much longer parents will be denied the selection of other features; and indeed how much longer the law will legitimately be able to prevent it.

Sheldon and Wilkinson argue, however, that the use of PGD in saviour siblings has a specific reason: to save a child’s life. The same cannot be said for its use to create a designer baby. As a result, the prima facie (sufficient evidence unless rebutted) for saviour siblings is much stronger than that for designer babies, showing a key difference between them (Sheldon, Wilkinson 2004).