Hastings Center Report
Transformed but Not Cured: The Ethics of Describing Gene-Editing Therapy for Sickle Cell Disease
Abstract: In December 2023, the U.S. Food and Drug Administration approved gene-editing therapies as sickle cell disease treatments. Such approvals for gene-editing not only mark radical scientific innovations for populations living with sickle cell disease (SCD) across the United States but also generate an expectation of a potential cure—the end or eradication of an illness and its effects. This essay, however, cautions against framing gene-editing therapy as a “cure” for SCD. Our argument illustrates that, even if gene editing is proven to permanently normalize the hematologic function of the body, there are other painful aspects of SCD that gene editing is unable to transform. Scientific researchers and health care practitioners could benefit from further bioethical consideration of the effects of using curative language with regards to SCD. The curative framing can easily generate misunderstandings in patient-provider communication and elicit unrealistic expectations. Raising awareness about the importance of how gene-editing therapies for SCD are described and about the need to discuss their limitations can prevent further harm.
