The racial politics of visibility and equity in genome-editing therapies for sickle cell disease

While scientists have adopted the language of social justice when discussing genome-editing therapies for sickle cell disease, the first of these treatments to be approved, Casgevy, costs approximately $2M per patient. Suggesting that equity concerns have been eclipsed by market priorities. In doing so, Casgevy sets a precedent for increased stratification of access to genetic therapies more broadly as sickle cell disease is held up as a poster child for the value and effectiveness of genome editing as a biomedical platform. To understand the persistence of this stratification of access, this paper draws on ethnographic observation and discourse analysis of public conferences on genome editing and meetings of the U.S. Food and Drug Administration on the evaluation of Casgevy. Through this case, we build on and contribute to literature on the relationship between processes of racialization and biomedicalization. We argue that the inequitable experiences associated with Blackness influence the development and approval of genome-editing therapies for sickle cell disease. We find that during the development and approval processes which have led genome editing technologies to market, the experiences of patients are selectively deployed to legitimate the technology to the public. Furthermore, at sites of deliberation and governance, patients' narratives are treated by scientists as anecdotes of recovery, rather than heeding patient's concerns about access and the persistence of medical racism. As a result, the processes of biomedicalization that stratify access to new treatments and enable the extraction of value from Black bodies in the name of innovation are obfuscated. Ultimately, efforts to extend access to sickle cell therapies in the name of social justice are bound by socio-historical patterns of racism.