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.
-------------------------------------
* 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.
