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CRISPR and disability

kcronin's picture

CRISPR offers opportunities to help cure many lethal diseases that create suffering in members of the population; however, it also has the potential to wipe out certain forms of human diversity such as disability. As CRISPR gets closer to being marketed as a medical and reproductive technology, we are forced to ask ourselves is our goal to enhance or to edit the human genome, and what should be edited out of existence. Though disability is a positive form of human diversity, it is a widely held belief that it is not. This has been demonstrated with the use of current reproductive technology. For example, parents have used in vitro fertilization to select against disability and disabled individuals have been sterilized during the eugenics movement. The medical model of disability assumes that disability is a disease that can be cured. However, how do you cure something that is not broken? Many individuals with disability do not wish to edit out the trait from their blood lines because they feel that the disability has been a crucial part in shaping who they are. This information though is often not conveyed to physicians or prospective parents who are asked to make these difficult decisions. These individuals prove that a disabled life is a valuable as the life of a non-disabled person, but to what extent can we limit parents’ ability to edit their child’s genome? Is it ethical to edit someone’s genome when they do not have a say in it and is it ethical to remove a guardians right to make medical decisions for their unborn child? Clearly, a major issue associated with this technology is the fact that disability may decrease in the population; however, an additional issue lies in the fact that stigma against disability may increase if individuals opt out of the “curative” technology.