Monday, 22 August 2022

Thence We Will Create Superhumans

by Corinne Othenin-Girard *


IMAGINE A WORLD IN WHICH parents have the option to go to a geneticist to discuss the ‘genetic fix’ choices of their unborn child.

If you should think that this is a fantasy of a dystopian fiction, you would be mistaken. Not only is the above, to a point, technologically possible today, but the parents' option could be made possible, too, in the not-too-distant future. 

Human Genome Editing is a kind of genetic engineering, where DNA is deleted and inserted, modified and replaced. 

The main argument in support of this technology is that it would be used to prevent the transmission of genetic diseases from one generation to the other. 

There seems now to be an instrumentalisation of individuals with disability, which means that concepts become instruments which serve as a guide to action. The proponents of (Germline) Genome Editing are using ‘the prevention of disability’ as a concept that coincides with how people with disabilities are usually portrayed and viewed by the broad public. 

There are two kinds of such editing—Somatic Genome Editing, and Germline Genome Editing—and there are, broadly, three possible applications. These applications include the following: 

1. Somatic Genome Editing is performed in the non-reproductive cells, and may contribute to treating diseases in existing individuals. It is said that it has the potential to revolutionise healthcare. A stunning success of this method was shown recently in the (possibly permanent) cure of hemophilia. And by now nearly 300 experimental gene-based therapies are in clinical testing. Changes made by somatic genome therapy are not passed down to future generations.

2. Germline Genome Editing is performed in early-stage embryo (before ‘it’ is even called an embryo), or in germ cells (sperm and egg cells). These modifications affect all cells of the potential future child, and will also be passed on to future generations. This technology would be used to prevent the transmission of diseases from one generation to the next. In other words, Genome editing would be used for fixing genetic ‘defects’ or ‘variations’ which cause rare diseases. Germline Genome Editing does not treat, cure, or prevent disease in any living individual. It is used to create embryos with altered genomes. 

3. From there on, the technology of Germline Genome Editing will inevitably expand into the area of generating ‘new’ or ‘improved’ abilities. Any gene can change, based on the ability-development it promises. ‘Treating disease’ or ‘preventing disability’ would therefore merge with ‘enhancement’. If genome editing should be deemed to be ‘sufficiently safe’, it could be applied to all kinds of gene variations—and that which is seen as ‘normal’ might be up for debate. The proponents of enhancement by genome editing mean to improve the human body and mind to its maximum potential. They conceive the natural human body as limited, defective, and in need of improvement, and support functioning beyond species-typical boundaries. 

Assuming that so-called ‘glitches’ of gene editing would be overcome, is it ethically acceptable to use this technology in order to ‘design’ future babies? It has already been done, in fact, and this issue has already come up, through the so-called CRISPR-Baby Scandal. In 2018, a Chinese researcher He Jiankui made the first CRIPRS-edited babies, twin girls called Lulu and Nana. Many researchers condemned his action. The actual editing wasn’t executed well. 

At the moment, public opinion is thought to carry a lot of weight. Therefore, various polls have been conducted to assess it. For example, the parent may have a severe heritable muscle disease: whether gene editing for (unborn) babies is acceptable, when it greatly reduces their risk of serious diseases or conditions. Assuming, again, that the technology is safe and effective. 

But for the technology to be declared as safe, don’t individuals with changed DNA need to be monitored throughout their life? 

The emerging field of enhancement medicine is due to push the boundaries through genetic manipulation, and will apply a shift to what is the human norm. 

Would using genome editing technology to create the 'perfect' or 'ideal' human risk making us become less tolerant of 'imperfections'? A person who couldn't embrace the norm of perfection would be perceived as 'disabled' and not as a person with a difference that needs to be sustained.

A genuinely inclusive and pro-equality society has no preferences between all possible future persons. Instead all existing and future individuals are perceived as having equal worth and value.

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* Corinne Othenin-Girard is a PhD student in sociology in Basle, Switzerland. She is currently working on a participatory project on the topic of Human Germline Genome Editing. Corinne invites readers of Pi to join a Zoom Conference, 9 September 2022 on Human Germline Gene editing (HGGE), more specifically on how it could change the future of humanity.

5 comments:

Thomas O. Scarborough said...

Thank you Corinne. The benefits are like magic. Already, people drink a potion as it were, and they are changed. You highlight the issues well, and some that I had not considered myself. I would worry about two things, re ‘enhancement’:

• We cannot foresee the physical side-effects, not even with the greatest of care.
• More than that, there are social concerns. This is already the case with GM crops.

Keith said...

A very interesting essay, Corinne. Thank you. My thoughts here have more to do with germline genome editing . . .

It seems that as the science matures, gene editing — using CRISPR and more sophisticated follow-on editing technologies — will likely not be limited to preventing or fixing health disorders. We may expect that ‘human enhancement’ will increasingly become the watchword.

To that point, controlling for a baby’s traits will likely become a prominent aspect of our species’ future, encompassing an ever-expanding and every-complex range of cognitive and physical qualities. The challenge is daunting but, I suggest, not insurmountable.

No one wants a Wild West of gene editing, of course. Ethicists, policymakers, natural scientists, social scientists, philosophers, legal scholars, and the public will need to debate regulations and the field’s direction as part of family planning and the budding science.

We need to stay humble, unrushed, and alert. But I feel quite sure we’ll get there. Eventually.

Corinne said...

Gene editing, as in Germline Genome Editing, is at odds with time. Keith, you mentioned it: unrushed! The long-term monitoring of Lulu and Nana, the CRISPR babies, would put a spoke in gene editor’s wheel, who give it about 6 or 10 years, but not more, to convince us, that the technology is safe. Then we would be ready to get on with it, as well with ‘human enhancement’…….
There is public disquiet about ‘human enhancement’. The concern is that germline genome editing is ‘meddling with nature’, and therefore should be avoided.

Corinne said...

You said, Thomas, with ‘enhancement’ we cannot foresee the physical side-effects. But that is not just for ‘enhancement’. We can’t foresee the physical and psychological side-effects of all the applications of germline genome editing. ‘Enhancement’ is one of the application of it. For this reason, we need ongoing analysis and debate.

Keith said...

Thank you, Corinne, for taking a moment to respond to my earlier comment.

You mentioned ‘public disquiet’. As you likely know, the biochemist Jennifer Doudna was jointly awarded the Nobel Prize in Chemistry in 2020 for her work on CRISPR-cas9. Perhaps of interest, according to a Freakonomics Radio transcript, she offered this balanced take on the genome editing’s potential — which walks the line between the ‘disquiet’ you refer to and the seeming inevitability of the technology’s use for human enhancement:

“I’ve seen an evolution in my own thinking, quite frankly. I have gone from feeling very uncomfortable with the idea of making changes to human embryos, especially for anything that would be considered not medically essential, to thinking that there may come a time . . . when that application is embraced and it’s going to be deployed. For me, the important thing is not to reject it. It’s actually to understand it and really think through the implications.”

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