Taking a break from research in the national library in Edinburgh, I was reading a copy of the Scottish Daily Mail (as you do) over a cappuccino in a nearby café. (Please note, I do not *buy* the Mail, it was already in the café.) Skimming the pages and looking for interesting headlines, I came across a story that has also been featured in at least three other sources (Guardian, Evening Standard and BBC News online). It refers to the creation of a human embryo free from diseases of the mitochondria. These embryo’s can be created and placed in women at IVF stage. For an outline of how the story has been covered, see this link BBC News. A paragraph in the Mail, however, stood out:
“An update of the fertility laws which is now before Parliament also bans [damaged/diseased] embryos from being used in IVF treatment. However, the ban could still be lifted before the Bill becomes law.”
Once again in news reporting deafness is mentioned as one of those ‘diseases’ (though not in the Mail article). My immediate reaction to this news was a further belief in the vindication of the StopEugenics campaign, but via email correspondence with an informed researcher I have learnt that with this particular issue it is not so simple. The mitochondria is a ‘mini-organelle’ found within individual cells; the function of the mitochondria is to generate energy, and when they are faulty they can lead to, for example, liver failure, stroke episodes, muscular dystrophy. It can bring about multiple diseases in the person, and so deafness is likely to come along with these. Deafness can’t (yet) be isolated within mitochondria. Therefore the creation of ‘disease-free mitochondria embryo’s’ is being done to try and stop ALL traits developing; it can’t be engineered to only stop some and not others. There is no way of knowing how it will develop in each individual, although it can develop as early as childhood.
Before continuing I do understand that when a person is affected by multiple diseases due to faulty mitochondria it can be quite distressing for carers and those who live with with the person who suffers, not to mention the effect on the person; I do not want to downplay that. My attention is drawn to it due to the links with the StopEugenics campaign. What is interesting is the fact that the Mail are reporting that a ban on using these embryo’s might *not* go ahead: that seems to be a direct reference to Clause 14/4/9, and if so, it’s the first I have seen the media report in this way (though perhaps they are also taking into account the general opposition to the Bill from the ‘right-to-life’ lobby).
This news story reminds me of a couple of things. Firstly, that the media and politicians continue to refer to deafness as if it is a serious or life-threatening disease when it is anything but. Such use of the example of deafness may appear subtle to the unobservant reader, but it nevertheless assumes deafness is something to be ‘cured’ or ‘rectified’. Secondly, and as we have found in the StopEugenics campaign, this really is a very complex issue that the Bill is trying to push through to make law. It reminds me of the need for clear background information on all aspects of genetic research, but that is not always forthcoming or obvious.
On a different note, a detailed and informative journal article on the HFEB Bill, this time in BioNews: http://www.bionews.org.uk/commentary.lasso?storyid=3721