19 November 2012
ByAppeared in BioNews 682
Have Your Say on Mitochondria Replacement
Hamilton House, Mabledon Place, London WC1H 9BD, UK
Tuesday 13 November 2012
At the beginning of this year, the UK's fertility regulator - the Human Fertilisation and Embryology Authority (HFEA) - was asked by the Secretaries of State for Health and for Business, Innovation and Skills to consult the public on proposed new techniques to avoid the transmission of mitochondrial disease. The resulting public consultation - 'Medical Frontiers: Debating Mitochondria Replacement' - is being conducted in several different ways including two public events, the first of which I attended in London on 13 November.
The event began with the screening of a short film entitled 'Mitochondria Replacement: Some Facts', which can also be watched on the consultation website. This was followed by a panel discussion chaired deftly by Bobbie Farsides, professor of clinical and biomedical ethics at Brighton and Sussex Medical School, and featuring an interesting assortment of speakers.
Alison Maguire, research executive at the Lily Foundation (a charity that supports families affected by mitochondrial disease and funds research into possible treatments), spoke movingly of having lost her daughter to mitochondrial disease and also of the horrendous suffering that dominated the four years of her daughter's brief life. Alison explained that bereaved parents in her situation currently have few or no options if they want to have healthy children, and that the proposed new techniques could potentially provide them with such options.
By way of contrast, Dr Helen Watt, senior research fellow at the Anscombe Bioethics Centre (a prominent Roman Catholic academic institute), argued that the proposed new techniques were unethical, and should not be made legal. In her view, to refer to the new techniques as a potential medical treatment was to commit a category error. She argued that medical treatment, properly speaking, involves restoring a person to natural functioning, whereas the techniques being proposed involved ransacking natural entities (either eggs or embryos, depending on which of the proposed techniques was being discussed) in order to create a new, unnatural entity. Dr Watt drew an analogy between the desire of a bereaved mother to have a child free of debilitating disease, and her own hypothetical desire to grow wings.
Anneke Lucassen, professor of clinical genetics at the University of Southampton, was unable to speak on the panel as planned due to unforeseen circumstances, and was replaced by two speakers - Professor Michael Parker, who directs the University of Oxford's multidisciplinary Ethox Centre, and the HFEA's own member of staff Hannah Darby. This pair did a valiant job, but the panel's conspicuous lack of a scientist with specific expertise in mitochondrial disease inevitably detracted from the proceedings and meant that the science was less clear than it should have been.
For example, after it was explained that mitochondrial DNA does not code for any individually distinguishing characteristics, an audience member asked how much variation exists between different people's mitochondrial DNA and therefore how unique this DNA is to us as individuals. This is an excellent question, but unfortunately, nobody on the panel was able to furnish an answer.
During the middle section of the event, we were asked to confer in smaller groups at tables. This was structured in a very confusing way, with a system involving stacks of papers in a particular sequence, and the sequence permutated differently on each table in the room. These papers contained questions and prompts for discussion that I struggled to understand the meaning of, despite being intimately familiar with the subject we were discussing. Nor did it help that of the six people at my table, three declared themselves unprepared to venture any opinions, on the grounds that they represented institutions that were supposed to remain impartial in the consultation. This left only myself and two other people having an exchange of views, while we were scrutinised intensely by the other half of the table (and by the organisers of the event, who were moving from table to table inspecting proceedings).
This confusion points to a larger problem with the event - namely, that it was structured in a way that seemed to give the process of the discussion a higher priority than the content of the discussion. This attention to process as distinct from content seemed to be driven by the need of the organisers to appear impartial, and to draw upon consultative expertise in order to demonstrate their impartiality. So after the Government commissioned the HFEA to run the consultation, the HFEA in turn commissioned the Office for Public Management (OPM) to organise the consultation's public events, and OPM's subsidiary Dialogue by Design to create the consultation website. As if this weren't enough, at the 13 November event an OPM representative was keen to point out that an observer from Cardiff University was present, to ensure that there was no foul play.
I'm sure that all of these steps will provide a useful defence in future, if anyone should seek to impugn the fairness or impartiality of the consultation. But unfortunately, these same steps risk serving the interests of those running the consultation at the expense of the interests of the public which is supposedly being consulted. It's to the immense credit of Professor Bobbie Farsides and her chairing skills that a lively and informative discussion was had, despite rather than because of the way the event was organised.