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For those who have seen it, serious mitochondrial disease is not something that is easily forgotten. In the worst cases starved cells in the body's extremities cause a lack of development, fatigue, tiredness, the inability to perform basic tasks without becoming exhausted or needing help and brain disease.
With life expectancies in the twenties at best, at all of that life spent needing care and often in discomfort, sensory deprivation (from common onset blindness or deafness).
What god could have created this? Yet for some on Britainās religious right, this dreadful plight is not something to solve but instead embraced! As āan accepted human limitationā. Those are the words of the Earl of Avon, former NUP Grandee recently rehabilitated in the Conservative party.
For those who cannot see past the world as it is, there is no way to make it better. To conserve a world of suffering and pain is complicity in it no matter how it is justified in faith or fervour.
Even less cogent are the good earls agreements that we are creating āubermenschā or engaging in eugenics.
Nothing could be further from the truth, the legislation would allow for specified individual licenses to transfer mitochondria, for only a small number of people, perhaps 150 IFV procedures per year at most this would alter no human dna, only the DNA of small sub cellular structure - mitochondria which are critical for giving our cells energy to perform the functions of our bodies.
So when the Earl says;
This legislation and the associated research could bring great wealth to Mankind by eliminating conditions such as Huntingdon's, but this house must consider the ethical dilemmas faced by this.
He shows himself to have no idea what is actually being proposed. Huntingdons is a disease caused by deformed X chromosomes.
And neither does he has ever any credibility in discussing parentage. The transferred DNA would amount less than 1% of 1% of our genetic material in no reasonable world could a mitochondrial donor be seen to be any more a parent than a blood donor. The suggestion is ludicrous.
Britain must break with this worst tradition of religious Conservatism, from its fetishisation of pain and suffering to its ignorance of the science that it wishes to stymie.
Instead of simply dumping more and more money into our NHS libertarians recognise that sometimes health policy needs to be smarter not more expensive so to close by answering the good Earls question;
we may never in our lifetimes know the true costs and effects.
The true cost will be Ā£320 million net in saving for the NHS over a decade from the reduced cost in care and treatment for the seriously ill and the priceless benefit of allowing couples with at risk carriers of disease mitochondria to have healthy related babies who they will not have to bury.
We hold in our hands the ability to stop some fathers from being forced to bury their sons, let us not be afraid to pursue it.
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