Gene Genie: How the UK is Leading the World on Genetic Solutions for Mitochondrial Disease

On 3rd February, a crucial vote was held which could shape the future of genetic medicine for decades to come. Seated in the austere splendour of the House of Commons on its distinctive green seats, Members of Parliament voted by a majority of around 3:1 in favour of enabling the creation of babies using DNA from two women and one man, in order to stop mitochondrial diseases being passed from mother to child.

A further vote is still required in the House of Lords, which, if passed, will mean the first ‘three-parent’ babies could be born as early as next year. This would make Britain the first nation to allow a true solution for preventing mitochondrial disease, one of the most debilitating and costly-to-treat group of conditions. If the Lords vote ‘yes’  to this amendment to the 2008 Human Fertilisation and Embryology Act, it is estimated that around 150 three-parent babies could be born each year. Ministers who voted for the proposal talked movingly of ‘light at the end of the dark tunnel’ for families, with Prime Minister, David Cameron adding, “We’re not playing God here, we’re just making sure that two parents who want a healthy baby can have one.”

A PERMANENT CURE FOR MITOCHONDRIAL DISEASE

Those who voted ‘no’ argued that too many ethical and safety issues were at stake. And it has to be admitted that even with the best medical understanding, we cannot know with 100% certainty what would result if the go-ahead is given. Yet, the proposed change would be permanent, in that it would effectively end the germ line: Mitochondrial DNA is passed from mother (not father) to child, meaning it is currently possible for women to trace their origins right back to some of the earliest female humans identified.

Personally, I’m curious about the potential long-term effects and evolutionary biology of ending the germ line. Having had my mitochondrial DNA analysed some years ago, I was informed by the lab that out of eight so-called ‘daughters of Eve’ my mother line is traceable back to a woman dubbed ‘Helena’, whose descendants started 20,000 years ago from a hunting family in the Dordogne region of the Pyrenees, southern France. (Apparently, my female ancestors don’t seem to have had the ‘great adventurer’ gene!) Yet, should three-parent baby girls be born next year, they, their daughters, their grand-daughters, and so on, won’t have the direct proof of such ancestral information, as the chain would have been broken. A small matter maybe, considering the enormous upsides of freeing families from debilitating mitochondrial diseases, but an insight into the complexities and subtleties surrounding science policy decision-making.

GREAT BRITAIN AND THE GREAT DEBATE

The UK is a world leader in genetic and genomic research, indeed the medical technique in question was developed in Newcastle (NE England). We have the first and only Life Sciences Minister, George Freeman MP, who was one of several experts who participated in January’s Astellas Innovation Debate, chaired by the august David Dimbleby at the Royal Institution of Great Britain for discussion of the multitude of issues involved in this complex arena.

There is often talk at such moments in medical history of ‘the genie being let out of the bottle’, or of Pandora’s box being let open, only to result in destruction and chaos. But parodies aside, this vote brings into sharp focus our ability to shape the future of medicine. As far as PR is concerned, it also brings into sharp focus the importance of communicating the science properly, so that fully-informed choices can be made.

MITOCHONDRIAL DISEASE

  • Mitochondrial disease is a group of disorders caused by dysfunctional mitochondria – the organelles that generate energy for the cell.
  • Symptoms include poor growth, muscle weakness, blindness, deafness, learning disabilities, heart disease, liver disease, kidney disease, gastrointestinal disorders, respiratory disorders, neurological problems.)

The Astellas Innovation Debate was filmed and can be viewed here.