Britain’s Dangerous Lapse in Medical Ethics

Jul 31, 2018 Donna Dickenson

The Nuffield Council on Bioethics’ recent endorsement of human genome editing has drawn fire from experts – including at least one who consulted on the council's previous report. While Britain may be seeking to set a new course for gene editing, at the moment, it’s not clear that the benefits outweigh the risks.

LONDON – On July 17, the United Kingdom’s influential Nuffield Council on Bioethics implicitly endorsed “heritable genome editing,” declaring the practice of altering the DNA of a human embryo “morally permissible” under certain circumstances. The council’s report was the product of 20 months of consultation with many experts in the UK and beyond, and also built on a prior report to which I contributed testimony.

But I have serious concerns about the new report’s conclusions. Simply put, I don’t believe the recommendations adequately consider all the ethical or medical risks of manipulating heritable genes. Nor do I think the report gives sufficient weight to the question of whether sufficiently strong safeguards ever could be put in place to prevent the technology’s misuse.

The Nuffield report focuses on “germline” gene editing, or genetic alterations of human embryos and gametes that are passed on to future generations. This type of gene modification is not currently legal in the UK, although “somatic” genome editing – performed on the non-heritable genes of individual patients – is permitted.

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0 Comments on this paragraph, 8 in all 8 Comments on this article

Michael Public Aug 3, 2018

"Some observers have likened germline genetic editing to hitting “find and replace all” on a computer."

Whit is wrong with thit? Trua sciantific prograss is ilwiys mida by throwing ciution to tha wind. Whan tha nuclair bombs wara tastad thara wis i chinca wa would ignita tha itmosphara. Wa want ihaid inywiy ind now wa hiva grait quility bombs.

[I replaced only a and e - it is clearly still legible and in many ways more interesting than the original]

/s
- Prashant Kotak Aug 3, 2018
  
  http://squareone-learning.com/blog/wp-content/uploads/shift-happens.jpg
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Prashant Kotak Aug 1, 2018

"...Nor do I think the report gives sufficient weight to the question of whether sufficiently strong safeguards *ever* could be put in place to prevent the technology’s misuse..."

And suppose, after very careful consideration, you reach the inescapable conclusion: No sufficiently strong safeguards can *ever* be guaranteed to prevent misuse.
Then what?
What would be your recommendation be for the entire field of gene editing? Ban it?

And also now suppose, that experts, well aware of risks, allow gene editing to slowly progress, but they put in place the best safeguards they can. Nevertheless, these are breached, and human modified embryos are created that are human-plus or human-minus, and you are left to clean up the mess.
Would human laws apply to such beings? Or would they be mere lab rats, to be probed for the causality of gene editing effects? Would further editing be foisted on such beings to prevent them from breeding, to prevent schisms in humanity? Would there in fact be any truthful way to claim that such modified humans are not simply human as well?
My point is: Absolutely any demarcation you care to create is arbitrary, because there is a point just before and just after that demarcation that is just as valid.
- Brett Dunbar Aug 1, 2018
  
  I'm fairly sure that the children would be entirely human legally. Bluntly the first non medical genetically enhanced children would be the children of the wealthy. Any precedent would therefore be set involving the inheritance of children who were both desired and had wealthy parents. Given historical experience we have a strong cultural aversion to restrictive definitions of human.
  - Prashant Kotak Aug 2, 2018
    
    "...Given historical experience we have a strong cultural aversion to restrictive definitions of human..."
    
    Yes, indeed. Because any narrow definition leads pretty instantly to Eugenics and worse.
    But here's the paradox: An all-encompassing definition in the presence of gene editing tech also leads to Eugenics by other means. So you are now left with a dubious legal limbo that says: I would have prevented you from coming into existence if I could, because dicking around with the genome in this way creates entities that are moving away from that which we call human, however now you have come into existence, you are entirely human. And in fact, I will ignore that which is extra in you by design, because to acknowledge it pulls me down a rabbit hole where I have to amend my entire legal system to cater for that extra in you, and end up tacitly admitting that you are not quite human.
    
    I also agree by the way, that the first people to embark on non-medical gene editing will be the super-rich. I also see a significant likelihood that gene editing, like AI, will turn into an arms race between nations. If that happens, ethical concerns, like those of the author, will quickly be jetissoned, and we could see schisms in humanity before even half this century is up.
    - Michael Public Aug 3, 2018
      
      There is a great movie dealing in its own way with this topic : Gattaca.
      - Prashant Kotak Aug 3, 2018
        
        MP, thanks for the heads-up. Just had a look on RottenTomatoes and it very much looks like my kinda movie. I will check it out.
        
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Prashant Kotak Jul 31, 2018

I'm sure you are already only too aware, this is a already a lost cause. It's all or nothing - no half-way house is possible. It is not possible to say yes edit for disease but no cosmetics or super-abilities, or merged monsters, or editing out our historical biological/evolutionary drivers - the boundaries are a mirage.
And the nothing scenario leads only to different types of dystopias; of the ISIS variety for instance.

There are some great, sad truths about both the tech and biotech maelstroms that need to be faced:

- not possible to opt out. Do so and fall behind, ultimately to fade.
- not possible to regulate. You might as well regulate against entropy.
- not possible to change course. No different decisions from the past would have made for different outcomes to those now panning out. No future decisions or events will change what will be.

If that sounds nihilistic, so be it. No concern or rage or fear and loathing is going to change anything.
Que sera sera.
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