What was described by the media as either the 'designer baby' or the 'Hashmi' case was, in effect, neither. The legal arguments in the courts were directed exclusively at the governance of policy making in assisted reproduction. Comment on Reproductive Ethics (CORE) argued that, in 1990, Parliament did not give the Human Fertilisation and Embryology Authority (HFEA) infallible rights in this field, and that the tissue typing policy decision took them way beyond their original mandate. Attempts by the media to distort beyond recognition this important issue do the journalists no credit, and a great disservice to the public.
There will be few readers who did not get the impression that Zain Hashmi was facing an imminent and appalling death, from an extremely rare disease, and that the only obstacle standing in the way of saving his life was CORE, who were challenging a licence issued by the HFEA to create a baby donor. Read on for the true version of facts.
Thalassaemia, from which Zain suffers, is a chronic disease requiring continual medical intervention. Currently sufferers can look to a life expectancy of 40 or 50 years, with every possibility that treatment will become much less invasive within the next decade. The blatant misrepresentation of the facts about this disease (publicly endorsed by an ignorant HFEA) caused considerable upset to the UK Thalassaemia Charity, who were left with the difficult task of reassuring 800 UK patients that they should ignore the horror stories circulating in the media.
Nor were the Hashmi family prohibited from pursuing their desire to create a matching baby. The diagnostic techniques involved in tissue-matching are not available in the UK and, on the two occasions when the family tried unsuccessfully to produce the right embryos, this service was provided by a clinic in Chicago. Nobody could have prevented them from returning to Chicago to try again. None of which, however, has any relevance whatsoever to what was going on in the courts, given that the Hashmis were not even legal participants in the case.
CORE argued that, in December 2001, the HFEA had acted beyond its remit when it declared that in principle it would not oppose the creation of embryos as tissue-matches for sick siblings. This decision was taken without any public consultation by the very same HFEA which (in a joint report on PGD (preimplantation genetic diagnosis) published barely three weeks earlier) had made the following recommendation: 'The guidance should indicate that PGD should only be available where there is a significant risk of a serious genetic condition being present in the embryo'.
It was noted that a recommendation of this nature should relate to individual tests, thereby implicitly ruling out Human Leukocyte Antigen (HLA) typing (where an embryo is selected to provide a tissue match for transplant to an existing family member).
Mercury himself couldn't have turned around faster. Some claim that people should be able to do whatever they like when it comes to assisted reproduction, others believe that the welfare of the created child is of paramount importance. Some say that decisions should be left to the doctors, and so on. Consensus is hard to come by. But whatever one may wish to the contrary, Parliament did promise, in 1990, stringent controls to safeguard the human embryo, to ensure the welfare of the child and to protect society itself. CORE believes that none of these safeguards are defendable if contentious ethical decisions can be taken by an unelected organisation representing the interests of the infertility networks.
Whatever the ruling of the Appeal Court, CORE remains adamant - Parliament and not the HFEA should be the primary decision maker.
Josephine Quintavalle is director of Comment on Reproductive Ethics.
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