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. To make this claim, we buil on theories of #racialcapitalism, #racialization, and #Blackbioethics.

We found that during the development and approval of GE therapies, the experiences of patients are deployed to legitimate the GE to the public. Furthermore, patients' narratives are treated as anecdotes of recovery, rather than heeding their concerns about access and medical #racism.

We wanted to understand the persistence of #stratification of access to new therapies (Casgevy costs around $2.2M/patient) despite efforts to make genome editing for sickle cell accessible and equitable.

#bioethics #healthequity

This paper draws on ethnographic observation and discourse analysis of public conferences on genome editing and meetings of the FDA on the evaluation of #Casgevy, the first CRISPR-based treatment for #sicklecell to be approved.