A Utilitarian Assessment of the Relevance of Genetic Therapies for HIV-AIDS in Africa, with Special Reference to the Situation in Kenya by Tom Joel Obengo Dissertation presented for the fulfilment of the requirements for the degree of Doctor of Philosophy in Applied Ethics in the Department of Philosophy at the Faculty of Arts & Social Sciences University of Stellenbosch Supervisor: Prof. Anton A. van Niekerk March 2020 Stellenbosch University https://scholar.sun.ac.za DECLARATION By submitting this dissertation electronically, I declare that the entirety of the work contained therein is my own, original work, that I am the sole author thereof (save to the extent explicitly otherwise stated), that reproduction and publication thereof by the University of Stellenbosch will not infringe any third party rights, and that I have not previously in its entirety or in part submitted it for obtaining any qualification. March 2020 Copyright © 2020 University of Stellenbosch All rights reserved ii Stellenbosch University https://scholar.sun.ac.za ACKNOWLEDGEMENTS My foremost gratitude is to the Almighty God for the gift of life, good health, and faithful sustenance to this present time. I am deeply thankful to my Supervisor, Professor Anton A. van Niekerk, Distinguished Professor of Philosophy at the Department of Philosophy, Faculty of Arts and Social Sciences, University of Stellenbosch, for his strong supervision, intellectual guidance, support, advice and encouragement which directly contributed to the successful completion of this study. Although this study was funded primarily from family income, together with scholarships and bursaries from the Department of Philosophy at Stellenbosch, I am also thankful to two individuals for gifts that supported aspects of it: Prof. John F. Kilner of Trinity International University, Deerfield, Illinois, and Dr. Theodore H. Palmatier of Yakima Worker Care Clinic, Washington DC. The Principal of Moffat Bible College, Dr. Paul Kamunge, graciously granted me leave of absence from my teaching and administrative duties in order to pursue this study programme to its conclusion. My wife Dorothy and our two daughters Rebekka Mich and Hannah Gweth gave me unwavering support and constant encouragement; they joyfully allowed time for me to study and write. My parents Michael (deceased) and Paskalia Oria-Ongadi taught me in childhood the human virtues that caused my interest in ethics; my parents-in-law Daniel and Mary Ndetei constantly prayed for me. My friends encouraged me throughout the duration of this study: Dr. Chris Jones who had been my Master’s degree thesis Supervisor, Daudi & Truphie Sumba, Prof. Philip Mbithi, Dr. Tim Teusink of SIM France, Nathan & Jane Chiroma, as well as professors and fellow post-graduate students in the Department of Philosophy at Stellenbosch. I sincerely acknowledge their kindness and support to me. iii Stellenbosch University https://scholar.sun.ac.za ABSTRACT As African countries continue to bear the largest global burden of HIV-AIDS, the use of Highly Active Antiviral Treatment (HAART) for suppression of viral multiplication is the best available treatment option in which one is advised to take a dose at least once a day for the rest of his or her life. Of the HIV-infected number people globally, some are well into their second decade of treatment with these antiretroviral drugs. Although the survival rates and the quality of life for HIV-AIDS patients have been significantly improved by the intervention, missing the pills for a number of days unleashes a rapid viral replication. Additionally, some patients experience adverse effects which may interfere with their usual daily activities or lifestyles, leading to poor adherence for some, thereby posing risks of treatment failure of the drugs in use. In other words, with continued treatment interruptions, resistance to these drugs may occur. This means there is still no cure for HIV-AIDS, hence the need to consider alternatives that may become available through emerging technologies such as genetic therapies. This research titled “A Utilitarian Assessment of the Relevance of Genetic Therapies for HIV-AIDS in Africa, with Special Reference to the Situation in Kenya,” seeks to establish if genetic therapies would be suitable for treating HIV-AIDS which affects millions of patients in the world, 70% of whom are in Africa. Kenya is among the ten leading countries in Africa in the prevalence of HIV-AIDS, hence a review of the country’s healthcare system, especially in relation to the problem of HIV-AIDS, including some on-going research. A comprehensive review of genetic therapies shows a distinction between somatic and germline genetic therapies as different but potentially effective cures for the illness. Special attention has been given to CRISPR Cas9 because, so far, it is the only technology close to providing real treatment for HIV-AIDS although there is need for caution and further development. Based on the ethics theory of utilitarianism, the dissertation concludes that genetic therapies are the most appropriate solution to the HIV-AIDS scourge that will have justifiable benefit-sharing for the people, with minimum negative consequences. The therapies are most likely to turn misery into good health, pain into happiness, and shame into dignity. From a utilitarian perspective, when genetic therapies will be made available for the treatment of HIV- AIDS, the patient will be cured, the descendants of the patient will be prevented from inheriting the disease, and future societies will be saved from a deadly disease. Therefore, there is sufficient utilitarian justification in investing both technologically and scientifically in the on- going research into genetic therapies. The dissertation recommends that there be iv Stellenbosch University https://scholar.sun.ac.za collaborative effort in supporting on-going research into genetic therapies, propagating a positive understanding of genetic therapies, commitment to using the therapies once fully developed, and governments agreeing to take final responsibility with regard to results, whether negative or positive. In view of the discussions, findings and recommendations of this research, genetic therapies are viewed as the most viable solution to the effects of HIV-AIDS. v Stellenbosch University https://scholar.sun.ac.za OPSOMMING Aangesien Afrika steeds die grootste wêreldwye las van MIV-vigs dra, is die gebruik van Hoogs Aktiewe Antiretrovirale Terapie (HAART) vir die onderdrukking van virale vermenigvuldiging die beste beskikbare behandelingsopsie, waarin ‘n mens aanbeveel word om minstens een maal per dag ‘n dosis te neem vir die res van sy of haar lewe. Van die mense wat wêreldwyd met MIV geïnfekteer is, is sommige reeds in hul tweede dekade van die behandeling met hierdie antiretrovirale medisyne. Alhoewel die oorlewingsyfers en die lewensgehalte van MIV-vigs-pasiënte aansienlik verbeter is deur die ingryping, word ‘n vinnige virusreplikasie veroorsaak wanneer die pasiënt die pille vir ‘n aantal dae nie gebruik nie. Boonop ervaar sommige pasiënte nadelige gevolge wat hul gewone daaglikse aktiwiteite of lewenstyl kan beïnvloed, wat vir sommige tot ‘n slegte nakoming daarvan kan lei, wat die risiko vir behandelingsmislukking van die medisyne in gebruik, kan inhou. Met ander woorde, met voortgesette behandelingsonderbrekings kan weerstand teen hierdie middels opgebou word. Dit beteken dat daar nog steeds geen geneesmiddel vir MIV-vigs is nie, en dus moet daar gekyk word na alternatiewe wat beskikbaar mag word deur opkomende tegnologieë soos genetiese terapieë. Hierdie navorsing, met die titel “’n Utilitêre Beoordeling van die Toepaslikheid van Genetiese Terapieë vir MIV-vigs in Afrika, met Spesiale Verwysing na die Situasie in Kenia,” wil vasstel of genetiese terapieë geskik is vir die behandeling van MIV-vigs wat miljoene pasiënte regoor die wêreld affekteer, waarvan 70% in Afrika is. Kenia is een van die tien voorste lande in Afrika in die voorkoming van MIV-vigs. ‘n Oorsig word gebied van die land se gesondheidsorgstelsel, veral met betrekking tot die probleem van MIV-vigs, insluitend deurlopende navorsing. ‘n Uitgebreide oorsig van genetiese terapieë toon ‘n onderskeid tussen somatiese en kiemsel genetiese terapieë as verskillende, maar potensieel effektiewe geneesmiddels vir die siekte. Spesiale aandag word gevestig op CRISPR Cas9 omdat dit tot dusver die enigste tegnologie is wat naby kom aan die behandeling van MIV-vigs, hoewel versigtigheid en verdere ontwikkeling nodig is. Deur middel van die aanwending van die etiek-teorie van utilitarisme, kom die proefskrif tot die gevolgtrekking dat die genetiese terapieë die mees geskikte oplossing vir die MIV-vigs-plaag is wat regverdige bevoordeeldeling vir die mense sal inhou, met die minimum negatiewe gevolge. Dit is waarskynlik dat die terapieë ellende in goeie gesondheid, pyn in geluk en skande in waardigheid kan verander. Vanuit ‘n utilitaristiese perspektief, wanneer genetiese terapieë beskikbaar gestel sal word vir die behandeling van MIV-vigs, sal die pasiënt genees word, dit sal voorkom dat die nasate van die pasiënt geïnfekteer is en toekomstige vi Stellenbosch University https://scholar.sun.ac.za samelewings sal gered word van ‘n dodelike siekte. Daar is dus voldoende utilitaristiese regverdiging om te belê in die deurlopende navorsing, beide tegnologies en wetenskaplik, van genetiese terapieë. Die proefskrif beveel aan dat daar gesamentlike pogings aangewend word om deurlopende navorsing oor genetiese