• Conceptualizing disability ethics in the age of CRISPR

      Bisguier, Nissa (2020-05)
      The incipient gene-editing technology, CRISPR (clustered regularly interspaced short palindromic repeats), has raised critical ethical questions regarding the elimination of genetic defects, potential risks about the efficacy and downsides of its use, and parental and medical agency over modifying the genetic material of future generations. This paper will first explain what CRISPR is and how it compares to previous technologies used to modify genes, such as TALENs and ZFNs. After describing the possible short and long-term expectations for CRISPR’s applications, I provide a survey of the ethical concerns addressed by the medical community and how they differ from those that worry some advocates for marginalized communities due to the history of eugenics. I will rely on the work of Joel Reynolds, George Estreich, Alison Kafer, and Elizabeth Barnes that problematizes the cultural values and medical assumptions behind gene-editing and its potential use as a tool for a new wave of eugenics. I explain how the tragic narrative of disability has come from a societal perspective influenced by a position of power and must be re-examined. Many disability ethicists argue that their disability is crucial to their identity and determines a different yet not lesser existence. The idea that gene- editing could be used as a tool in eliminating disability perpetuates a tragic narrative of disability that not only degrades the lives of the disabled, but is incomplete. I end with a contemplation of the concrete ways in which CRISPR could benefit people with severe health conditions, while remaining aware of the dangers involved in the idealization of gene-editing that the discourse has propagated.