DO FAIR AND JUST SYSTEMS REQUIRE COMPENSATION FOR THE DISADVANTAGES OF THE NATURAL LOTTERY? A DISCUSSION ON SOCIETY’S DUTIES ON THE PROVISION OF GENE THERAPY
Ekmekci PE1,*, Güner MD2
*Corresponding Author: Perihan E. Ekmekci, M.D., Ph.D., Department of History of Medicine and Ethics, TOBB Economics and Technology University Medical School, Sogutozu Cad. No: 43, 06560 Ankara, Turkey. Tel: +90-532-262-0350. Fax: +90-312-292-4432. E-mail: p.ekmekci@etu.edu.tr; drpelifek@gmail.com
page: 69

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1. Glybera EPAR summary for public (https://www. ema.europa.eu/en/medicines/human/EPAR/glybera). 2. Strimvelis EPAR summary for public (https://www. ema.europa.eu/en/medicines/human/EPAR/strimvelis). 3. Aiuti A, Roncarolo MG, Naldini L. Gene therapy for ADA-SCID, the first marketing approval of an ex vivo gene therapy in Europe: Paving the road for the next generation of advanced therapy medicinal products. EMBO Mol Med. 2017; 9(6): 737-740. 4. Food and Drug Administration. Approval History, Letters, Reviews, and Related Documents. IMLYGIC. 2015 (https://www.fda.gov/BiologicsBloodVaccines/ CellularGeneTherapyProducts/ApprovedProducts/ ucm 469411. htm). 5. Food and Drug Administration. Approval History, Letters, Reviews and Related Documents. KYMRIAH. 2017 (https://www.fda.gov/Biologics Blood Vaccines/ CellularGeneTherapyProducts/Approved- Products/ ucm573706.htm). 6. Food and Drug Administration. Approval History, Letters, Reviews and Related Documents. YESCARTA. 2017 (https://www.fda.gov/BiologicsBloodVaccines/ CellularGeneTherapyProducts/ApprovedProducts/ ucm58122 2. htm). 7. Food and Drug Administration. December 19, 2017 Approval Letter. LUXTURNA. 2017 (https://www. fda. gov/BiologicsBloodVaccines/CellularGeneTherapyProducts/ ApprovedProducts/ucm589507.htm). 8. Flotte TR. Ethical implications of the cost of molecularly targeted therapies. Hum Gene Ther. 2015; 26(9): 573-574. 9. Regalado A. The world’s most expensive medicine is a bust. MIT Technol Rev. 2016 (https://www. technology review.com/s/601165/the-worlds-mostexpensive- medicine-is-a-bust/). 10. Rawls JA. Theory of Justice (original ed). Cambridge, MA, USA: The Belknap Press, 2005; 60-65; 118-142. 11. O’Brian WE Jr. Equality in law and philosophy. Inquiry. 2010; 53(3): 257-284. doi: 10.1080/0020174100 3784648. 12. Buchanan A, Brock DW, Daniels N, Wilker D. From Chance to Choice. Genetics and Justice. Cambridge, Cambridgeshire, UK: University Press, 2000. 13. Daniels N. Just Health: Meeting Health Needs Fairly. New York, NY, USA: Cambridge University Press, 2008. 14. Arneson RJ. Luck egalitarianism interpreted and defended. Philosophical Topics. 2004; 32(1-2): 1-20. 15. Ekmekci PE, Arda, B. Luck egalitarianism, individual responsibility and health. Balkan Med J. 2015; 32(3): 244-254.



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