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Is HHGE compatible with disability rights?

The disability rights approach can contribute to the discussions around genome editing.

How disabled people are portrayed and perceived in the context of genetic manipulation is contestable. Persons with disabilities understand their identity as being ability diverse and ability variant. The social dynamic around them sees them as being ability deviant and ability deficient.

It is believed that the focus on a "genetic fix" is decreasing the social situation of disabled people.


Genome editing would be used for fixing a genetic “defects” or "variations" which cause rare diseases. This is based on typical ability expectations.

The disabled people’s right views isn’t taken into account in the debate around genome editing.

The narrative of ability expectations will be a major aspect in deciding about the application of genome editing and whether we use it for human enhancement.


There seems to be an instrumentalisation of individuals with disability. The germline (hereditary) genome editing is using the "prevention of disability" as a concept that coincides how disabled people are usually portrayed and viewed by the broad public.

From there on genome editing will expand into the area of generating “new” or “improved” abilities, and any gene can be changed, based on the ability development it promises.

If genome editing will be deemed to be sufficiently safe it could be applied for all kinds of gene variations and that what is seen as “normal” might be up for debate.


 
 
 

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Corinne Othenin-Girard

PhD Student Sociology

University of Basel,

Switzerland

 

PhD Thesis on:

A critical social view at the projected clinical application of heritable genome editing (HGE).

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