Human Germline Genome Editing and the Identity Politics of Genetic Disability

Felicity Boardman, PhD  - University of Warwick

ELSIconversations - April 2, 2021

The intersection of human germline genome editing with identity politics has a range of implications for the disability community. Based on in-depth interviews (n=146) and surveys (n= 1,436) with people living with a range of different genetic conditions in the UK (Cystic Fibrosis, Spinal Muscular Atrophy, Thalassaemia, Haemophilia, Fragile X Syndrome and Alström Syndrome), this presentation will explore the complex and multifaceted relationship between genetic conditions and personal identity, relating this to current debates surrounding germline genome editing. Whilst genome editing circumvents some of the key disability rights ‘expressivist’ critiques of prenatal testing and selective termination- through its preservation of the life of the would-have-been disabled person- it will nevertheless be argued that ‘expressivist’ concerns, grounded in the identity politics of disability, remain valid. Whilst technological methods of selective reproduction may evolve and shift, its underlying premise - that acceptable life is contingent on the absence of a genetic impairment- endures. Moreover, unlike equivalent methods of selective reproduction (e.g. PGD), germline genome editing has the long-term potential to remove, or at least significantly reduce, the incidence, and consequently prevalence, of genetic conditions within society. The consequences of this editing for the identities of future generations, whose genetic code may straddle the boundaries between health and illness are not yet clear. This presentation will discuss these implications of human germline editing from the perspectives of people currently living with genetic conditions, with a particular emphasis on their lived realities and experiential knowledge of genetic disability and its intersection with identity politics.