Precision genetic engineering includes somatic and germline genetic manipulations and the synthesis of genomes from the base pair level up. In this analytical essay, we interrogate the recent discussion around gene editing and its impact in relation to disabled people and the utility of the United Nations Convention on the Right of Persons with Disabilities (UNCRPD) and legal instruments covering genetic interventions for protecting disabled people from negative social impacts. We employ in our analytical essay a disability rights approach lens which focuses on the social situation of disabled people. This Laws 2016 , 5 , 37; doi:10.3390/laws5030037
Laws 2016 , 5 , 37 2 of 23 interrogation has been brought forward for the following reasons: (a) the area of gene editing is still in development and as such fits with the premise of anticipatory governance where a discussion around the topic should take place before the product is in place; (b) discussions around gene editing impact how we look at other areas of genetic interventions such as preimplantation genetic interventions [ 1 , 2 ]; (c) gene editing applications will not only be used as an approach for fixing a genetic “defect” based on species typical ability expectations but it will expand into the area of generating “new” or “improved” abilities; and (d) genetic enhancement agendas are influencing discourses around what is considered to be a disease or an impairment. We focused on disabled people using a disability rights approach because how gene editing is discussed (a) impacts the perception of disabled people, whereby how we portray disabled people is still being contested [ 3 – 11 ]; (b) impacts the narrative around what we see as the cause of disablement; (c) impacts the narratives of other genetic interventions such as prenatal genetic testing and pre-implantation genetic diagnostics. We also have the assumption that a disability rights approach would benefit the discussions around gene-editing because the judgment of abilities one ought to have and the consequences of one not fulfilling ability expectations is a main focus of a disability rights approach and part of the academic fields of disability studies and ability studies. We posit that the societal dynamic of ability expectations and how we govern ability expectations will be a major factor in deciding the scope of use of gene editing including whether we use it for human enhancement. 1.1. Precision Genetic Interventions Somatic and germline modifications and genomic synthesis have been discussed for some time; however, the debate around human gene editing intensified in March 2015 [ 2 , 12 , 13 ] when a study was published describing the germline genetic modification of human embryos [ 14 ]. Beyond human germline editing, there are several other applications envisioned for gene editing [ 15 – 17 ]: gene editing also allows synthetic biologists to design and edit whole genomes of biological entities giving them new properties [ 18
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