The Hashmis have a son of six, Zain, who suffers from the blood disorder, beta thalassaemia (BT). Zain has to undergo regular blood transfusions and may die unless a suitable tissue donor can be found for him, the best chance of finding such a donor lying in the birth of a compatible sibling. Zain was diagnosed as suffering from BT at four months. Two months later, Mrs Hashmi conceived naturally in the hope of creating a match for him. The resulting child, Haris, though free of the disease, was not a tissue match for Zain. His parents then launched a worldwide search for a donor but, when that failed, they began to consider alternative options.
The fertility clinic treating the Hashmis applied to the HFEA for permission both to carry out PGD on IVF embryos to ensure that the Hashmis would have a child born free of the disease and HLA (human leucocyte angtigen) tissue typing to identify which, if any, of the embryos would be a blood match for Zain. A so-called 'saviour sibling' could thus be created and umbilical cord blood might be taken and used to treat Zain. The HFEA gave its permission, introducing strict guidelines for the future and noting that future requests would be considered on a case-by-case basis.
Following this decision, the Hashmis produced 14 embryos but none was a match for Zain. Their efforts to select a saviour sibling were then brought to a halt by a legal challenge from the pro-life pressure group, Comment on Reproductive Ethics (Core). Core argued that in granting the Hashmis permission to proceed, the HFEA had exceeded the bounds of the authority accorded it under the Human Fertilisation and Embryology Act 1990. Specifically, Core disputed the HFEA's claim that PGD and HLA tissue typing could be licensed as a practice which was 'for the purpose of assisting women to carry children' being 'designed to determine whether embryos are suitable [to be placed in a woman]'. Core's argument in the House of Lords was that 'suitable' in this context must mean capable of becoming a healthy child who is free of abnormalities. Any broader construction taking account of the wishes of Mrs Hashmi as to a future child's particular characteristics, Core argued, would pave the way for the creation of 'designer babies' chosen on the basis of such characteristics as hair and eye colour. The HFEA argued for a broader understanding of 'suitable', suggesting that Mrs Hashmi would be entitled to regard an embryo as unsuitable unless it was both free of abnormality and a perfect match for Zain. While the judge in the High Court found for Core and a narrow interpretation of 'suitable', both the Court of Appeal and House of Lords found unanimously that the HFEA had acted within its powers in allowing Mrs Hashmi to go ahead.
The Hashmi case, and that of the Whitakers which was shortly to follow it, provoked a storm of media interest and widespread questions regarding the ethics of the deliberate creation of so-called 'saviour siblings'. Do these procedures create a child merely as a means to an end? Does allowing such creation place us on a slippery slope towards allowing fully-fledged 'designer babies'? Does it fail to take adequate account of the welfare of the child to be born? The House of Lords, however, saw no need to address these, defining the matter before it as the narrow, procedural question of whether authorising the tissue typing requested by the Hashmis fell within the authority which the 1990 Act accords the HFEA.
This decision does not, therefore, offer much to those with an interest in judicial thinking on the ethical issues set out above. Nonetheless, it is noteworthy in a number of respects. Firstly, the case provides another example of the role adopted by pro-life organisations in policing the provision of reproductive medicine and further demonstration of how sophisticated these organisations have now become in their presentation of issues both to the media and to the courts. A generous understanding of the rules of 'locus standi' has now allowed Core to bring two major high profile legal challenges to decisions made by the HFEA. Moreover, a recent interview with Core's founder, Josephine Quintavalle, revealed that she is also closely involved with two legal challenges to the regulation of abortion services. Notably, it was Quintavalle who was responsible for suggesting that the mediagenic curate Joanne Jepson spearhead a challenge to the provision of late termination for reason of disability. The combined effect of these challenges is that the law regulating reproductive medicine seems to be consistently under attack from pro-life groups and individuals and far less frequently challenged by those who believe it insufficiently permissive or liberal.
Secondly, it should be no surprise that the wording of the HFE 1990 Act has been found to provide limited or ambiguous guidance on a number of issues that were not foreseen by its drafters. And the question of the appropriate decision-maker in cases of ambiguity will continue to arise. Should the sorts of issues raised in Quintavalle be left to the conscience of individual parents and the professional discretion of clinicians, avoiding the need to parade the private tragedy of a family through committees, courts and the media? Is it better that these decisions should be located in the hands of a body like the HFEA with its ability to draw on medical, legal and ethical experts and lay members? Or, rather, are the ethical issues raised by such private decisions of such fundamental public importance that they would be more appropriately determined by a democratically elected body? While views may differ as to who is best suited to make such decisions, the House of Lords has at least given us a clear answer to who has the legal right to do so. Following the approach of earlier courts in opting for a broad construction of statute that is protective of the discretion exercised by the HFEA, the House of Lords here takes the view that the purpose of establishing a regulatory body was to allow it to reach informed and relatively speedy judgments in the light of the best available medical science as new technologies develop.
Thirdly, while this point is not explicitly made in the House of Lords decision, the judgment delivered in Quintavalle is consistent with a healthy respect for women's (or couples') autonomy in reproductive decision-making. The embryo to be implanted must not just be judged 'suitable' in narrow medical terms (in its ability to develop into a healthy child); it must also be 'suitable' taking account of the wishes of Mrs Hashmi. In this case, tissue typing was for the purposes of helping Mrs Hashmi to carry a child, as her wish to do so was, at least in part, predicated upon knowing that the birth of that child would be capable of saving the life of Zain. As the Court of Appeal put it: 'To see the legislation as interested only in women's ability successfully to experience the physical process of pregnancy and birth would seem to me to invert the significance of the human wish to reproduce. Just as 'placing an embryo in a woman' is only a first step towards a successful pregnancy, so pregnancy and the experience of birth are steps towards an expanded family life, not an end in themselves'. And, as Lord Hoffman suggests, the procedure gives the Hashmis control, saving them from 'having to play dice with conception'.
Finally, and relatedly, in accepting the broader construction of the 1990 Act set out above, the House of Lords have also avoided an unhappy situation whereby it would be illegal to select an embryo for tissue compatibility, yet perfectly lawful to allow Mrs Hashmi to conceive a series of pregnancies and terminate those where testing revealed the developing foetus to be an incompatible tissue donor. While it might be difficult to find doctors prepared to countenance the repeated use of abortion in this way, it could be argued that a refusal to allow the tissue typing of embryos would have created a pressure on them to do just that.
This commentary was first published by the Pro-Choice Forum, which has a large body of further comment on these issues and more at www.prochoiceforum.org.uk