MakBRC Bioethics Center Publications
February 15, 2025
Year |
Publications |
| 2025 | Ali, J., Esmonde, K., Agudelo-Londoño, S., Jannat, Z., Shrestha, P., Torres-Quintero, A., & Mwaka, E. (2025). “Digital benefit sharing” for non-communicable disease risk factor surveillance in low–and middle-income countries: implications for digital health governance. Policy Studies, 1-18. |
| 2024 | Schultz, B., Agamah, F. E., Ewuoso, C., Madden, E. B., Troyer, J., Skelton, M., & Mwaka, E. (2024). Webinar report: stakeholder perspectives on informed consent for the use of genomic data by commercial entities. Journal of Medical Ethics, 50(1), 57-61. |
| Nankya, H. (2024). Considerations for Community Engagement in Artificial Intelligence in Africa: A Review of Literature. The Journal of Hospital Ethics, 10(2), 85-85. | |
| Nankya, H., Alibu, V. P., Wamala, E., Matovu, E., & Barugahare, J. (2024). Understanding of Key Considerations for Effective Community Engagement in Genetics and Genomics Research: A Qualitative Study of the Perspectives of Research Ethics Committee Members and National Research Regulators in a low Resource Setting. Journal of Empirical Research on Human Research Ethics, 19(4-5), 197-207. | |
| Nankya, H., Wamala, E., Alibu, V. P., & Barugahare, J. (2024). Community engagement in genetics and genomics research: a qualitative study of the perspectives of genetics and genomics researchers in Uganda. BMC Medical Ethics, 25(1), 1. | |
| Nanyonga, M. M., Kutyabami, P., Kituuka, O., & Sewankambo, N. K. (2024). Exploration of Clinical Ethics Consultation in Uganda: A case study of Uganda Cancer Institute. Research Square. | |
| Kampi, R., Okello, C., Ochieng, J., & Mwaka, E. S. (2024). Informed consent in cancer clinical care: perspectives of healthcare professionals on information disclosure at a tertiary institution in Uganda. Plos one, 19(4), e0301586. | |
| Nalubega, S., Kutyabami, P., Twimukye, A., Kaawa-Mafigiri, D., & Sewankambo, N. K. (2024). Practices and attitudes of herbalists regarding informed consent in Uganda: a qualitative study. BMC Medical Ethics, 25(1), 106. | |
| Owino, R. S., Sewankambo, N. K., Kituuka, O., & Kutyabami, P. (2024). Experiences and ethical issues during shared decision-making in healthcare at rural health facilities in Uganda: An exploratory qualitative study. Research Square, rs-3. | |
| Nabukenya, S., Kyaddondo, D., Munabi, I. G., Waitt, C., Twimukye, A., & Mwaka, E. S. (2024). The role of community engagement in promoting research participants’ understanding of pharmacogenomic research results: Perspectives of stakeholders involved in HIV/AIDS research and treatment. Plos one, 19(4), e0299081. | |
| Nabukenya, S., Kyaddondo, D., Twimukye, A., Munabi, I. G., Waitt, C., & Mwaka, E. S. (2024). ‘It is a complex process, but it’s very important to return these results to participants’. Stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV. Research Ethics, 20(2), 363-387. | |
| Twimukye, A., Nabukenya, S., Kawuma, A. N., Bayigga, J., Nakijoba, R., Asiimwe, S. P., … & Waitt, C. (2024). ‘Some parts of the consent form are written using complex scientific language’: community perspectives on informed consent for research with pregnant and lactating mothers in Uganda. BMC medical ethics, 25(1), 149. | |
| Ochieng, J., Kwagala, B., Barugahare, J., Möller, M., & Moodley, K. (2024). Awareness, experiences and perceptions regarding genetic testing and the return of genetic and genomics results in a hypothetical research context among patients in Uganda: a qualitative study. Journal of Medical Ethics. | |
| Barugahare, J., Kwagala, B., & Ochieng, J. (2024). Stakeholder’s Perspectives on Rationing COVID-19 Vaccines Amidst Scarcity: a Qualitative Study. Archives of Microbiology and Immunology, 8, 23-34. | |
| 2023 | Nabukenya, S., Waitt, C., Senyonga, R., Castelnuovo, B., Munabi, I. G., Kyaddondo, D., & Mwaka, E. S. (2023). Research participants’ preferences for individual results of pharmacogenomics research: A Case of a Ugandan HIV Research Institute. Journal of Empirical Research on Human Research Ethics, 18(4), 218-232. |
| Mijumbi, A. O., Mugenyi, L., Nanfuka, M., Agaba, C., & Ochieng, J. (2023). Regulation of community advisory boards during conduct of clinical trials in Uganda: a qualitative study involving stakeholders. BMC Health Services Research, 23(1), 119. | |
| 2022 | Sylvia, N., Joseph, O., David, K. M., Ian, M., Janet, N., Nelson, N. F., … & Erisa Sabakaki, M. (2022). Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study. Research ethics, 18(3), 193-209. |
| Amayoa, F. A., Nakwagala, F. N., Barugahare, J., Munabi, I. G., & Mwaka, E. S. (2022). Understanding of critical elements of informed consent in genomic research: A case of a paediatric HIV-TB research project in Uganda. Journal of Empirical Research on Human Research Ethics, 17(4), 483-493. | |
| Mwaka, E. S., Bagenda, G., Sebatta, D. E., Nabukenya, S., & Munabi, I. (2022). Benefit sharing in genomic and biobanking research in Uganda: Perceptions of researchers and research ethics committee members. Frontiers in Genetics, 13, 1037401. | |
| Ochieng, J., Kwagala, B., Barugahare, J., Möller, M., & Moodley, K. (2022). Feedback of individual genetic and genomics research results: A qualitative study involving grassroots communities in Uganda. PLoS One, 17(11), e0267375. | |
| Ochieng, J., Kwagala, B., Barugahare, J., Mwaka, E., Ekusai-Sebatta, D., Ali, J., & Sewankambo, N. K. (2022). Perspectives and experiences of researchers regarding feedback of incidental genomic research findings: A qualitative study. PloS one, 17(8), e0273657. | |
| 2021 | Mwaka, Erisa Sabakaki, Deborah Ekusai Sebatta, Joseph Ochieng, Ian Guyton Munabi, Godfrey Bagenda, Deborah Ainembabazi, and David Kaawa-Mafigiri. “Researchers’ perspectives on return of individual genetics results to research participants: a qualitative study.” Global Bioethics 32, no. 1 (2021): 15-33. |
| Ochieng, Joseph, Betty Kwagala, John Barugahare, Erisa Mwaka, Deborah Ekusai-Sebatta, Joseph Ali, and Nelson K. Sewankambo. “Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda.” (2021). | |
| Ochieng, Joseph, Betty Kwagala, and Nelson Sewankambo. “Collection and use of human materials during TB clinical research; a review of practices.” (2021). | |
| Ali, Joseph, Betty Cohn, Erisa Mwaka, Juli M. Bollinger, Betty Kwagala, John Barugahare, Nelson K. Sewankambo, and Joseph Ochieng. “A scoping review of genetics and genomics research ethics policies and guidelines for Africa.” BMC Medical Ethics 22, no. 1 (2021): 1-15. | |
| Mbalinda, Scovia Nalugo, Sabrina Bakeera-Kitaka, Derrick Lusota Amooti, Eleanor Namusoke Magongo, Philippa Musoke, and Dan Kabonge Kaye. “Ethical challenges of the healthcare transition to adult antiretroviral therapy (ART) clinics for adolescents and young people with HIV in Uganda.” BMC medical ethics 22, no. 1 (2021): 1-14. | |
| Kaye, Dan Kabonge. “Motivation to participate and experiences of the informed consent process for randomized clinical trials in emergency obstetric care in Uganda.” BMC Medical Ethics 22, no. 1 (2021): 1-12. | |
| Nichol, Ariadne A., Erisa S. Mwaka, and Valerie A. Luyckx. “Ethics in Research: Relevance for Nephrology.” In Seminars in Nephrology, vol. 41, no. 3, pp. 272-281. WB Saunders, 2021. | |
| Kamuya, Dorcas, Mary A. Bitta, Adamu Addissie, Violet Naanyu, Andrea Palk, Erisa Mwaka, Eunice Kamaara et al. “The Africa Ethics Working Group (AEWG): a model of collaboration for psychiatric genomic research in Africa.” Wellcome Open Research 6, no. 190 (2021): 190. | |
| Wolde, Telahun Teka, Rosemary Musesengwa, Andrea Palk, S. Mwaka Erisa, Violet Naanyu, Adamu Addissie, and Getnet Tadele. “Ethics review of multicenter neuro-psychiatric & neurodevelopmental genetics research protocols: a case study of the NeuroDev & NeuroGap-Psychosis studies.” Wellcome Open Research 6, no. 193 (2021): 193. | |
| 2020 | Kaye, Dan Kabonge. “Why ‘understanding’of research may not be necessary for ethical emergency research.” Philosophy, Ethics, and Humanities in Medicine 15, no. 1 (2020): 1-8. |
| Mbalinda, Scovia Nalugo, Sabrina Bakeera-Kitaka, Derrick Lusota Amooti, Eleanor Namusoke Magongo, Philippa Musoke, and Kaye K. Dan. “Ethical challenges of the healthcare transition to adult Antiretroviral therapy (ART) clinics for HIV infected adolescents and young people in Uganda.” (2020). | |
| Barugahare, John, Fredrick Nelson Nakwagala, Erisa Mwaka Sabakaki, Joseph Ochieng, and Nelson K. Sewankambo. “Ethical and human rights considerations in public health in low and middle-income countries: an assessment using the case of Uganda’s responses to COVID-19 pandemic.” BMC Medical Ethics 21, no. 1 (2020): 1-12. | |
| Ochieng, Joseph, Erisa Mwaka, Betty Kwagala, and Nelson Sewankambo. “Evolution of research ethics in a low resource setting: A case for Uganda.” Developing world bioethics 20, no. 1 (2020): 50-60. | |
| Obasa, A. E., S. Singh, E. Chivunze, T. Burgess, F. Masiye, T. Mtande, J. Ochieng et al. “Comparative strategic approaches to COVID-19 in Africa: Balancing public interest with civil liberties.” South African medical journal= Suid-Afrikaanse tydskrif vir geneeskunde 110, no. 9 (2020): 858. | |
| Barugahare, John, and Paul Kutyabami. “Nature and history of the CIOMS International Ethical Guidelines and implications for local implementation: A perspective from East Africa.” Developing world bioethics 20, no. 4 (2020): 175-183. | |
| 2019 | Kaye, Dan K., Gershom Chongwe, and Nelson K. Sewankambo. “Ethical tensions in the informed consent process for randomized clinical trials in emergency obstetric and newborn care in low and middle-income countries.” BMC medical ethics 20, no. 1 (2019): 1-8. |
| Kaye, Dan Kabonge. “The ethical justification for inclusion of neonates in pragmatic randomized clinical trials for emergency newborn care.” BMC pediatrics 19, no. 1 (2019): 1-8. | |
| Mwaka, Erisa, Janet Nakigudde, Joseph Ali, Joseph Ochieng, Kristina Hallez, Raymond Tweheyo, Alain Labrique, Dustin G. Gibson, Elizeus Rutebemberwa, and George Pariyo. “Consent for mobile phone surveys of non-communicable disease risk factors in low-resource settings: an exploratory qualitative study in Uganda.” Mhealth 5 (2019). | |
| Mwaka, Erisa, and Lyn Horn. “Researchers’ perspectives on informed consent and ethical review of biobank research in South Africa: A cross-sectional study.” Journal of Empirical Research on Human Research Ethics 14, no. 4 (2019): 307-317. | |
| NABUKENYA, SYLVIA. “AN ASSESSMENT OF UNDERSTANDING OF INFORMATION PROVIDED IN GENETIC RESEARCH AMONG PEOPLE LIVING WITH HIV AT THE INFECTIOUS DISEASES INSTITUTE (IDI).” PhD diss., Makerere University, 2019. | |
| Barugahare, John. “‘Bioethical Realism’: A Framework for Implementing Universal Research Ethics.” Developing world bioethics 19, no. 3 (2019): 128-138. | |
| Barugahare, John. “Bioethical reflexivity and requirements of valid consent: conceptual tools.” BMC medical ethics 20, no. 1 (2019): 1-10. | |
| 2018 | Barugahare, John. “African bioethics: methodological doubts and insights.” BMC medical ethics 19, no. 1 (2018): 1-10. |
| 2017 | Mwaka, Erisa S. “Responsible conduct of research: enhancing local opportunities.” African health sciences 17, no. 2 (2017): 584-590. |
| Mwaka, Erisa Sabakaki. “Stakeholder perspectives on informed consent and ethics review of research involving human specimen resource repositories (biobanks) in South Africa: a quantitative study.” PhD diss., 2017. | |
| 2016 | Mwaka, Erisa. “Ethical Issues in Translational Research: From the Bench to Theatre.” Annals of African Surgery 13, no. 2 (2016). |
| Barugahare, John, and Reidar K. Lie. “Understanding the futility of countries’ obligations for health rights: realising justice for the global poor.” BMC international health and human rights 16, no. 1 (2016): 1-11. | |
| Barugahare, John. “Can Resource-Poor Countries Bear any Obligations for Global Distributive Justice? A Reflection on the Distribution of Global health Opportunities.” (2016). | |
| 2015 | Ochieng, Joseph, William Buwembo, Ian Munabi, Charles Ibingira, Haruna Kiryowa, Gabriel Nzarubara, and Erisa Mwaka. “Informed consent in clinical practice: patients’ experiences and perspectives following surgery.” BMC research notes 8, no. 1 (2015): 1-6. |
| Barugahare, John, and Reidar K. Lie. “Obligations of low income countries in ensuring equity in global health financing.” BMC medical ethics 16, no. 1 (2015): 1-11. | |
| Simmons, David, Christopher Bunn, Fred Nakwagala, Monika M. Safford, Guadalupe X. Ayala, Michaela Riddell, Jonathan Graffy, and Edwin B. Fisher. “Challenges in the ethical review of peer support interventions.” The Annals of Family Medicine 13, no. Suppl 1 (2015): S79-S86. | |
| 2014 | Ochieng, Joseph, Charles Ibingira, William Buwembo, Ian Munabi, Haruna Kiryowa, David Kitara, Paul Bukuluki, Gabriel Nzarubara, and Erisa Mwaka. “Informed consent practices for surgical care at university teaching hospitals: a case in a low resource setting.” BMC medical ethics 15, no. 1 (2014): 1-5. |