Future looking brighter for 'saviour siblings'

Today we report that the UK's Human Fertilisation and Embryology Authority (HFEA) has decided to allow Joe and Julie Fletcher to conceive a so-called 'saviour sibling' for their sick son, Joshua. Those that have followed this debate over the past few years will know that the Fletchers are not the first to be granted permission to use PGD (preimplantation genetic diagnosis) on embryo created by IVF, in order to select an embryo that could become a compatible cell donor for the existing child.

The first decision in this area was for the Hashmi family. The decision in this case was supposedly less controversial, as the PGD carried out would also ensure that the child to be born would be free from the disease - beta thalassaemia - suffered by its older brother. Unfortunately, the Hashmis treatments were twice delayed by legal action challenging the HFEA's decision, making it less and less likely that the IVF procedure itself would work. Following many disappointing attempts, the Hashmis have now stopped treatment, having to resign themselves to the fact that there is little more that they can do to cure their son, Zain.

Next came the Whitakers. They, like the Fletchers, have a son affected by Diamond Blackfan Anaemia (DBA), a sometimes fatal blood disorder. But DBA does not always have a genetic cause so, for these families, PGD has only one purpose - it can't tell whether the child to be born would be unaffected, but can ensure that it would be a compatible match for its sick sibling. The HFEA originally refused this application on the grounds that the test itself posed no appreciable benefit to the embryo and indeed might carry risks. In July, after the Whitakers had already been abroad to pay for (successful) treatment, the HFEA changed its mind, allowing Whitaker-type cases to proceed.

The decision on the Fletchers is the first to be made since that policy change. But while it is obviously the right decision (as the Fletchers' doctor, Mohamed Taranissi has been pointing out to the press, it should have been 'pretty straightforward' as the 'principle has already been accepted'), and may be followed by others, it might be asked why the whole process takes so long. The Fletchers' application was submitted early in 2004 and yet, in a situation where time is absolutely of the essence, it took until September to arrive at a decision. And this is after a policy change had already been announced in July.

It also doesn't seem likely that future applications of this type will proceed any faster, as the HFEA says that all will be looked at on their own individual merits. It is hard to imagine what more merit there will be than the opportunity to save a sick, possibly dying, child. If it is bureaucracy that delays these applications, we can look forward, I expect, to even longer hold-ups as, the numbers of applications will no doubt increase. If the reason is to ensure that families exhaust every possible avenue before they can use PGD, then perhaps we should remember that PGD is not the best, most attractive option - given the choice between being matched as a donor to your own child, finding someone who could be, or going through the whole invasive and uncertain process of IVF and PGD, which would you choose?

Perhaps it is time, as Suzi Leather, chair of the HFEA, said over a year ago, for Parliament to change how PGD is regulated. In a newspaper interview, she said 'the whole issue of what we're going to permit in terms of selecting characteristics of embryos... is an issue not just for patients or doctors or the HFEA. It is an issue for civil society and thus for Parliament.' The good news is that the House of Commons Science and Technology Committee is already reviewing the legislation, and will be hearing evidence on the various applications of PGD this Wednesday. This review leads to a full review by the Department of Health, so we may yet see PGD - particularly as applied to 'saviour siblings' - being regulated in a way that patients can derive the most benefit from.