The Human Fertilisation and Embryology (HFE) Bill, currently making its way through the UK's Parliament, marks the first major re-think of the original Human Fertilisation and Embryology Act, passed in 1990. In the almost 20 years since the Act was passed, new medical developments and techniques have emerged which raise their own ethical issues; the time was right for review, not least to ensure that in certain areas the law was entirely clear.
One of these areas is the lawfulness of the creation of so-called 'saviour siblings'. It will be remembered that the Human Fertilisation and Embryology Authority (HFEA) had a relatively chequered history in this area. In 2001, the HFEA refused to permit the Whitaker family to use PGD with HLA (human leukocyte antigen) tissue typing in order to select an embryo which was a potential tissue-matched cord blood donor for their existing son, Charlie, who had Diamond Blackfan anaemia.
In a press release, the HFEA explained that it had taken a 'precautionary approach' in this case, and that 'tissue typing through preimplantation genetic diagnosis (PGD) may only take place when PGD is required to select embryos for treatment that are not affected by a serious genetic disorder'.
In 2002, the HFEA reached a different decision in the case of the Hashmi family, who wanted to use the same techniques to select an embryo free from beta thalassaemia and compatible with their son, Zain, who suffers from that condition. Its decision was challenged by a 'pro-life' group, Comment on Reproductive Ethics (Core), which argued that the terms of the legislation could not encompass what was intended.
In the event, the House of Lords ruled in favour of the position adopted by the HFEA. Although the court case hinged on the interpretation of the law, the ethical debate was never far from the surface. Some argued that creating 'saviour siblings' instrumentalised any resulting child, while others believed that the potential ability to provide therapies or cures for existing children outweighed any other potential problems. In other words, the interest that parents and the existing sick child clearly have in trying to save the child's life trumped any other potential interests. With the exception of those who object to any kind of embryo selection - most particularly because of the inevitable destruction of the embryos not selected (indeed, in March 2008, the Vatican included embryo destruction in its new list of mortal sins (1)) - the decision in the Hashmi case seems to have been widely accepted. Indeed, while it is essentially anecdotal evidence, in an opinion poll conducted by YouGov in 2005 (2432 adults aged 18+ throughout Britain), 58 per cent agreed that this should be permitted, 22 per cent disagreed and 21 per cent answered 'don't know'.
The new HFE Bill clearly restates the position taken by the House of Lords, so as to ensure that there is no need, nor excuse, for further litigation in this area. Schedule 2 of the Bill says:
'A licence under paragraph 1 cannot authorise the testing of an embryo, except for one or more of the following purposes-
...in a case where a person ('the sibling') who is the child of the persons whose gametes are used to bring about the creation of the embryo (or of either of those persons) 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, establishing whether the tissue of any resulting child would be compatible with that of the sibling... (2).
On 25 March 25, 2008, it was revealed that the Prime Minister had agreed that Members of Parliament (MPs) should have a free vote on three areas of the Bill which are seen by some as particularly controversial - one of these being the lawfulness of creating 'saviour siblings' (3). Although this has not been directly stated, it seems plausible that this apparent about-turn (previously the Prime Minister had been criticised for not apparently intending to allow a free vote) is at least in part the result of pressure from certain groups - most notably the Catholic Church - although it is of course possible that people of other faiths or no faith also have ethical concerns about this practice. In addition, there were rumours that some Cabinet Ministers might resign if they were not able to vote according to their consciences. That being said, there has been no widespread public objection to the decision in the Hashmi case, nor did the recent Joint Parliamentary Committee on the Human Tissue and Embryos (Draft) Bill object to PGD with HLA tissue typing in the circumstances envisaged in the Bill (4).
Although currently lawful, it is not clear what the majority of the public feel about PGD with HLA typing. Public opinion is notoriously difficult to obtain, and even more difficult to interpret. Equally, however, it is not clear why pressure groups should be allowed to manipulate Government into effectively conceding that something which is already lawful, and has been approved by the highest civil court in the country, should be categorised as 'controversial'. The danger in allowing a free vote on this subject is that MPs will vote according to their own faith or personal intuitions, and not in the best interests of their constituents - who may not share their views.
I am no constitutional lawyer, but it seems to me to be highly problematic to allow the private conscience of some MPs to dominate a debate that is much wider - and deeper - than their personal belief systems. Civilisation as we know it did not end after the Hashmi judgement; nor would it necessarily be wrong to permit the creation of 'saviour siblings' (likely to be a rare event in any case) even if we had evidence that the majority of the public were against it. As Lord Devlin said many years ago, 'É.the question is not how a person is to ascertain the morality which he adopts and follows, but how the law is to ascertain the morality which it enforces.' (5) (emphasis added).
Ideally, the law should not be governed by what Hart has called 'moral populism' (0), but rather informed by subtle, sensitive and reasoned debate, tempered with compassion for those who are suffering. On this view, while the moral sentiments of individual MPs are worthy of respect, they should not have the power to prevent saving the lives of existing and suffering children.