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PubMed: 38012299 DOI: 10.1038/s41434-023-00429-7
Looking ahead: ethical and social challenges of somatic gene therapy for sickle cell disease in Africa.
Gene Ther 31(5-6):202-208
Authors: Nchangwi Syntia Munung, Obiageli E Nnodu, Patrick Ohiani Moru, Akpaka A Kalu, Benido Impouma, Marsha J Treadwell, Ambroise Wonkam
Affiliations
- Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
- Centre of Excellence for Sickle Cell Disease Research and Training (CESRTA), University of Abuja, Abuja, Nigeria.
- World Health Organization Regional Office for Africa, Brazzaville, Republic of Congo.
- Department of Pediatrics, Division of Hematology, University of California San Francisco, Oakland, CA, USA.
- Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
- McKusick-Nathans Institute & Department of Genetic Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Abstract
Somatic gene therapy will be one of the most exciting practices of genetic medicine in Africa and is primed to offer a "new life" for persons living with sickle cell disease (SCD). Recently, successful gene therapy trials for SCD in the USA have sparked a ray of hope within the SCD community in Africa. However, the high cost, estimated to exceed 1.5 million USD, continues to be a major concern for many stakeholders. While affordability is a key global health equity consideration, it is equally important to reflect on other ethical, legal and social issues (ELSIs) that may impact the responsible implementation of gene therapy for SCD in Africa. These include informed consent comprehension, risk of therapeutic misestimation and optimistic bias; priorities for SCD therapy trials; dearth of ethical and regulatory oversight for gene therapy in many African countries; identifying a favourable risk-benefit ratio; criteria for the selection of trial participants; decisional conflict in consent; standards of care; bounded justice; and genetic tourism. Given these ELSIs, we suggest that researchers, pharma, funders, global health agencies, ethics committees, science councils and SCD patient support/advocacy groups should work together to co-develop: (1) patient-centric governance for gene therapy in Africa, (2) public engagement and education materials, and (3) decision making toolkits for trial participants. It is also critical to establish harmonised ethical and regulatory frameworks for gene therapy in Africa, and for global health agencies to accelerate access to basic care for SCD in Africa, while simultaneously strengthening capacity for gene therapy.
MeSH
Cells, Genes, Anemia, Sickle Cell, Global Health, Work, Therapeutics, Genetic Therapy
Cited by
- Science and Society: Pathways to Equitable Access and Delivery of Genomics Medicine in Africa. Curr Genet Med Rep, 2025
- Genome editing strategies for targeted correction of β-globin mutation in sickle cell disease: From bench to bedside. Mol Ther, 2025
- Balancing benefits and burdens: a systematic review on ethical and social dimensions of gene and cell therapies for hereditary blood diseases. BMC Med Ethics, 2025
- The dawn of a cure for sickle cell disease through CRISPR-based treatment: A critical test of equity in public health genomics. Ann Hum Genet, 2025