Jane Glover Barrister – Mediator – Adjudicator

HUMAN GENOME EDITING: NOT JUST FOR THE MAGPIES

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I can’t deny it – I am a terrible magpie. I want to learn about everything that is new and shiny and sparklingly original.

It was because of this tendency that I spent quite a large chunk of last year learning about human genome editing. And what I discovered is that – as many of you will no doubt know already – this technology really is more than just a sparkling new toy to be tossed around for a while and then cast aside for the next enthusiasm. This is truly important, and the implications are surely more wide-ranging and profound than we can imagine.

Advances in genome-editing technology mean that at a technical level it is now relatively simple to tinker with the DNA of plants and animals, including humans. That is not to say that the outcomes of that tinkering are necessarily predictable, but at a scientific level the door is definitely open. Scientists can edit a human embryo at its earliest stage of development and reverse a mutation or make a change in the DNA of a single cell. As the embryo develops, the repaired or altered DNA is copied into every daughter cell – including the germ cells that will eventually transmit the DNA to future generations. This technology has species-level ramifications.

Already, two little girls in China are learning their first words and meeting their developmental milestones, oblivious to the fact that they are the first humans ever to be born with deliberately edited germlines. The scientist responsible, He Jiankui, edited their genomes by altering the CCR5 gene that allows HIV to enter cells. Unfortunately, the gene editing was imperfect and incomplete across all of the cells in the embryos. Also, rumours have swirled about the extent to which He Jiankui was acting with the knowledge and blessing of the Chinese government. Regardless of the political drama though, the scientific reality is that we now have flesh and blood reminders that this technology exists and that each country must now wrestle with its implications.

At its most benign, genome editing technology could be used to delete certain terrible genetic conditions from the germline. Arguably, where those conditions cause a great deal of suffering and a shortened life span, it would be unethical not to use any available technology to avoid them. Beyond that very narrow category, however, the rights and wrongs quickly become murky. Are conditions such as deafness or dwarfism part of the rich tapestry of humanity, or disabilities best eliminated where possible? And it gets trickier still. For example, stimulating muscle growth by inactivating the myostatin gene may help with muscle-wasting diseases such as muscular dystrophy, but the same gene could be used to produce humans with abnormal physical strength. Genome editing is a live topic within the military of some countries.

Medical tourism is also a concern. We may see wealthy prospective parents travelling to the most permissive jurisdiction in order to undertake procedures for the purpose of securing real or perceived advantages for their offspring.

The ethical issues are immense – particularly, the extent to which parents (and in more authoritative regimes, governments) should be free to make these decisions on behalf of unborn children, and those children’s descendants.

Commentators’ views range from those who would impose a blanket moratorium on this technology, to those – such as academic Steven Pinker – who thinks that we should not thwart research that has likely benefits now or in the near future by sowing panic about speculative harms in the distant future.

I think this is something that as citizens we need to think about and keep an eye on. These issues aren’t going to go away. So, click on those headlines, maintain a watching brief – or perhaps get even more involved, if this is your area of expertise or interest. The Royal Society Te Apārangi has developed various resources, if you are looking for a useful entry point.

And on the plus side, doing your civic duty has never been so fascinating.

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Jane Glover

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Jane Glover Barrister – Mediator – Adjudicator

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