Abstracts
Abstract
Some countries are already approving therapeutic applications of human genome editing. For example, recently the United Kingdom and USA have approved Casgevy as part of a treatment protocol for sickle cell disease. Should Canada follow this lead? Here we discuss the most important, yet unresolved, ethical issues in a Canadian context, and argue that much more public engagement and deliberation is needed.
Keywords:
- Casgevy,
- equity,
- inclusion,
- ethics,
- human genome editing,
- justice,
- public engagement,
- sickle cell disease
Résumé
Certains pays approuvent déjà des applications thérapeutiques de l’édition du génome humain. Par exemple, le Royaume-Uni et les États-Unis ont récemment approuvé Casgevy dans le cadre d’un protocole de traitement de la drépanocytose. Le Canada doit-il suivre cette voie? Nous examinons les questions éthiques les plus importantes, mais non résolues, dans le contexte canadien, et soutenons qu’un engagement public et des délibérations beaucoup plus poussés sont nécessaires.
Mots-clés :
- Casgevy,
- équité,
- inclusion,
- éthique,
- édition du génome humain,
- justice,
- engagement public,
- drépanocytose
Download the article in PDF to read it.
Download
Appendices
Remerciements / Acknowledgements
Les auteurs remercient le Conseil de recherches en sciences humaines du Canada pour son soutien financier (subvention #430-2022-00408).
The authors are grateful for funding support provided by the Social Sciences and Humanities Research Council of Canada (grant #430-2022-00408).
Bibliography
- 1. FDA Approves First Gene Therapies to Treat Patients with Sickle Cell Disease. FDA Press Release. 8 Dec 2023.
- 2. Vertex announces approval of first CRISPR/cas9 gene-edited therapy, CASGEVYTM, for the treatment of sickle cell disease (SCD) and transfusion-dependent beta thalassemia (TDT) in Kingdom of Saudi Arabia. Vertex. 9 Jan 2024.
- 3. Vertex announces new drug submission for Exagamglogene Autotemcel (exa-cel) has been accepted for priority review by Health Canada for the treatment of sickle cell disease and transfusion-dependent beta thalassemia. CNW Group. 1 Apr 2024.
- 4. The CASGEVYTM Treatment Journey. Casgevy. 2024.
- 5. Pendergrast J, Ajayi LT, Kim E, Campitelli MA, Graves E. Sickle cell disease in Ontario, Canada: An Epidemiologic profile based on Health Administrative Data. CMAJ Open. 2023;11(4):E725-33.
- 6. Merkeley H, Bolster L. Thalassemia. CMAJ. 2020;192(41):E1210.
- 7. Sickle cell disease and blood donation. Canadian Blood Services. 2024.
- 8. Robbins R, Nolen S. New sickle cell therapies will be out of reach where they are needed most. The New York Times. 8 Dec 2023.
- 9. Robbins R, Nolen S, Galdieri D. A dilemma for governments: How to pay for million-dollar therapies. The New York Times. 24 Jan 2023.
- 10. Normile D. CRISPR bombshell: Chinese researcher claims to have created gene-edited twins. Science. 26 Nov 2018.
- 11. Government of Canada. Assisted Human Reproduction Act. S.C. 2004, c. 2
- 12. Truth and Reconciliation Commission of Canada. Truth and Reconciliation Commission of Canada: Calls to Action. Winnipeg; 2015.
- 13. Government of Canada. Principles Respecting the Government of Canada’s Relationship with Indigenous Peoples. 2021.
- 14. Government of Canada. Crown-Indigenous Relations and Northern Affairs Canada. 2024.
- 15. Government of Canada. Moving forward on reconciliation. Department of Finance Canada. 7 Apr 2022
- 16. Tonkens R. Vulnerable groups and the hollow promise of benefit from human gene editing. Bioethics. 2021;35(6):574-80.
- 17. Aydin M, Dovern E, Leeflang MMG, et al. Haploidentical allogeneic stem cell transplantation in sickle cell disease: A systematic review and meta-analysis. Transplantation and Cellular Therapy. 2021;27(12):1004.e1-e8.
- 18. Sickle Cell Awareness Group of Ontario (2022). Hydroxyurea. 2022.
- 19. Rankine-Mullings AE, Nevitt SJ. Hydroxyurea (hydroxycarbamide) for sickle cell disease. Cochrane Database of Systematic Reviews. 2022;9(9):CD002202.