North Carolina Law Review

University of North Carolina School of Law

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Chapel Hill, NC 27514

SOMATIC GENOME EDITING IN SICKLE CELL DISEASE: REWRITING A MORE JUST FUTURE

97 N.C. L. REV. 1093 (2019)

 

Genome-editing technologies promise novel therapies for hematologic disorders. Sickle cell disease (“SCD”), the most common inherited blood disorder, has been identified as one condition where somatic genome editing may provide a cure to alleviate the burden and suffering of the disease. SCD has been slated as one of the first targets for Phase I clinical trials. Given the legacy of discrimination and health inequities for individuals living with the disease and individuals living with sickle cell trait (“SCT”), carriers of one sickle cell gene, policymakers and scientists developing genome-editing research and clinical programs must consider the history of SCD. This Article surveys the social and legal context of SCD and current somatic genome editing research. It maintains that development and access to curative genetic therapies should be based on the principle of fairness. Equitable application of human genome editing must serve as the core legal, ethical, and social compass that guides the implementation of somatic genome-editing research and clinical treatment. Proactive steps must be taken to ensure that SCD globally is not left behind in the development of genome-editing technologies.

 

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