My Sister’s Keeper: stranger than reality
Juliet Tizzard of the Human Fertilisation and Embryology Authority on Hollywood’s view of ‘saviour siblings’.
In a recent interview in the Observer, Michelle Whitaker, mother to the UK’s first ‘saviour sibling’, Jamie, said she probably won’t be going to see Nick Cassavetes’ new film, My Sister’s Keeper.
‘[The film] has taken a situation like ours and pushed and pushed it to the absolute extremes. People are going to think: “Ah, that’s why people are doing it.” It’s going to bring the “spare parts” baby debate back again. It’s so dramatic. The things that are described, well, they just wouldn’t be allowed to happen in this country.’
After seeing the film myself, I can assure Mrs Whitaker that she isn’t missing much. Based upon Jodi Picoult’s novel of the same name, the film is about a family whose middle child, Kate, is dying of leukaemia. Having suffered from the disease for most of her life, the teenaged Kate’s body is starting to give up and she is going into kidney failure. Her older brother is not a tissue match, but her younger sister, Anna, is. Indeed, she was conceived using preimplantation tissue typing precisely in order to be a tissue match to Kate. But, having been a donor of various tissues – cells from her cord blood, bone marrow, etc – the saviour sibling wants to be a saviour no more. In fact, Anna goes so far as to take her parents to court so that they can no longer make medical decisions on her behalf.
As it happens, the film isn’t really about the fact that the younger sibling was conceived to be a donor to her long-suffering sister. It’s really a film about a family falling apart around the imminent death of a child: neglected siblings running wild; a mother hell-bent on saving her child and refusing to confront reality; parental relationships stretched to breaking point. It’s all done with the required Hollywood gloss and, needless to say, it’s a major tear jerker. At the viewing that I attended, there wasn’t a dry eye in the house.
The film is an exaggeration of real life. But then, which films aren’t? In most cases, the truth isn’t stranger than fiction. Preimplantation tissue typing is no exception. The first time it was carried out in the UK was in February 2002. Raj and Shahana Hashmi had a son with the inherited blood disease beta thalassaemia and had hoped – in vain – that their other children might turn out to be a tissue match so that one of them could become a donor.
Hearing about the birth of the world’s first saviour sibling, Adam Nash, the Hashmis sought to have IVF in order to be able to test the embryos in order to avoid their future child having the disease which affected their son, and to ensure that the new baby could be a tissue donor. The Human Fertilisation and Embryology Authority (HFEA), where I work, gave them the go-ahead.
Since then, we have licensed preimplantation tissue typing in a handful of cases. Most have been for cases very similar to the Hashmis’: parents seeking to avoid a particular genetic disease in their prospective child, while seeking to ensure they will be a matched tissue donor for a sick sibling. The rest are cases in which tissue typing alone is done because the disease that the sick sibling suffers from cannot be detected through genetic testing.
What about the ‘saviour siblings’? Well, we don’t know much about them yet, nor about whether their older siblings were successfully treated with the donated cells. But we do know that if an unsuccessful transplant were to take place, the parents would not be able to sanction at will ever more risky interventions in order to obtain donors’ cells from the child.
In such instances, the court would have to decide on the merits of the case, based upon the best interests of the donor child. This is well-trodden ground for doctors, parents and the courts, who for many years have been tackling these issues in cases where the donor child was conceived naturally.
When My Sister’s Keeper was released, many commentators said it would reignite the debate about preimplantation tissue typing. This hasn’t happened. The issue has been debated extensively and, at least in legislative terms, has been settled in parliament.
During the passage of the Human Fertilisation and Embryology Bill (which updated the original legislation on IVF and embryo research) through parliament, the government felt that the issue of preimplantation tissue typing was sufficiently controversial to warrant a free vote, alongside abortion, hybrid embryo research and whether fathers are a prerequisite for access to IVF treatment. In the event, the House of Commons voted for the continued availability of this technique by a two-thirds majority.
Another issue that the Commons voted on was whether any tissue could be taken from the donor child born as a result of preimplantation tissue typing. They decided that cells from the cord blood, bone marrow and other regenerative tissue would be acceptable, subject to the best interests test, but that tissue typing with the aim of obtaining a whole organ would not.
So Mrs Whitaker is right: it wouldn’t be allowed in this country. My Sister’s Keeper is stranger than reality.
Juliet Tizzard is head of policy at the Human Fertilisation and Embryology Authority (HFEA).
Watch the trailer for My Sister’s Keeper here.