Bioethical Decision-Making About Somatic Cell Genome Editing: Sickle-Cell Disease as a Case Study

In Erick Valdés & Juan Alberto Lecaros (eds.), Handbook of Bioethical Decisions. Volume I: Decisions at the Bench. Springer Verlag. pp. 49-77 (2023)
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Abstract

Somatic cell genome editing (SCGE) now allows exquisitely precise and targeted non-heritable changes to be made to human DNA. While SCGE has many possible applications, clinical trials indicate its great potential to provide new forms of medical treatment, as well as cures, for a range of prevalent monogenic diseases, including several disorders of the blood (hemoglobinopathies). This chapter provides an overview of the nature of somatic cells, a discussion of their connection with genetic disease, and a summary of the bioethical issues that attend various therapeutic uses of the system. The chapter takes sickle-cell disease as a case study, identifying the advantages that SCGE promises over the current best treatment, as well as the issues that will likely compel patients, clinicians and others to engage in difficult bioethical decision-making. Lastly, the chapter takes up four bioethical principles—nonmaleficence, beneficence, autonomy and justice—to analyze some of the most pressing bioethical issues associated with SCGE, as well as recent recommendations for governing the technology published by the World Health Organization.

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