Research ethics during infectious disease outbreaks: a survey of African research stakeholders using the Ebola virus disease outbreak as a case
Introduction. Conducting research during disease outbreaks can be ethically challenging as evidenced in the 2014-2016 Ebola outbreak in West Africa and COVID-19 pandemic. Yet, there has been little empirical research conducted for understanding the views and perspectives of different stakeholders r...
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| Format: | Article |
| Language: | English |
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PAGEPress Publications
2023-09-01
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| Series: | Journal of Public Health in Africa |
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| Online Access: | https://jphia.btvb.org/jphia/article/view/1632 |
| _version_ | 1797671647453380608 |
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| author | Raji Tajudeen Blessing Silaigwana Alexei Yavlinsky Sarah Edwards |
| author_facet | Raji Tajudeen Blessing Silaigwana Alexei Yavlinsky Sarah Edwards |
| author_sort | Raji Tajudeen |
| collection | DOAJ |
| description |
Introduction. Conducting research during disease outbreaks can be ethically challenging as evidenced in the 2014-2016 Ebola outbreak in West Africa and COVID-19 pandemic. Yet, there has been little empirical research conducted for understanding the views and perspectives of different stakeholders regarding ethical issues in conducting research during disease outbreaks. Objectives. This preliminary study was conducted to empirically explore African public health research stakeholders’ views about research ethics issues during infectious disease outbreaks in Africa. Design. We conducted an online survey of 330 participants attending the International Conference on Re-emerging and Emerging Infectious Disease (ICREID) meeting that took place from 13-15 March 2019 in Addis Ababa, Ethiopia to elicit their views on various research ethics complexities experienced in the 2014 Ebola outbreak. Results. Study results revealed some divergent views on several ethical themes including: ethics of using unregistered interventions in outbreaks; acceptable study design; ethics review processes; risks-benefit assessment; exclusion of pregnant women and children; and biological sample and data sharing. Majority (76.3%) of respondents felt that in the absence of available standard treatments or prevention modalities, the use of investigational interventions can be ethically justifiable if there is a strong scientific rationale and favorable risk-benefit ratio. Regarding conventional placebo-controlled trials during outbreaks with high case fatality rates, respondents that considered this unethical were more than three times those that felt such design were ethically justifiable. We were somewhat surprised that a majority (almost 60%) of respondents were satisfied with the exclusion of pregnant women and children in clinical trials during outbreaks. All respondents concurred with the prioritization of informed consent for research during an outbreak. Conclusions. Based on our findings, research ethics guidance is needed to equip research stakeholders in dealing with ethical complexities arising in the conduct of research during emerging disease outbreaks - especially regarding using experimental interventions; placebo trial design; inclusion or justified exclusion of pregnant women and children; and biological sample/data sharing. The findings will be used in ongoing efforts of developing a consultative and coherent African-centric framework to support ethical conduct of research for future emerging infectious disease outbreaks in Africa.
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| first_indexed | 2024-03-11T21:18:35Z |
| format | Article |
| id | doaj.art-181e5a0a363a46d2b79300a1e3e51706 |
| institution | Directory Open Access Journal |
| issn | 2038-9922 2038-9930 |
| language | English |
| last_indexed | 2024-03-11T21:18:35Z |
| publishDate | 2023-09-01 |
| publisher | PAGEPress Publications |
| record_format | Article |
| series | Journal of Public Health in Africa |
| spelling | doaj.art-181e5a0a363a46d2b79300a1e3e517062023-09-28T10:49:17ZengPAGEPress PublicationsJournal of Public Health in Africa2038-99222038-99302023-09-0114910.4081/jphia.2023.1632Research ethics during infectious disease outbreaks: a survey of African research stakeholders using the Ebola virus disease outbreak as a caseRaji Tajudeen0Blessing Silaigwana1Alexei Yavlinsky2Sarah Edwards3African Union, Africa CDC, Division of Public Health Institutes and Research, Addis AbabaNIHR Group Tackling Infections to Benefit Africa (TIBA), University of EdinburghUniversity College London, Institute of Health Informatics, LondonUniversity College London, Science & Technology Studies, Bloomsbury, London Introduction. Conducting research during disease outbreaks can be ethically challenging as evidenced in the 2014-2016 Ebola outbreak in West Africa and COVID-19 pandemic. Yet, there has been little empirical research conducted for understanding the views and perspectives of different stakeholders regarding ethical issues in conducting research during disease outbreaks. Objectives. This preliminary study was conducted to empirically explore African public health research stakeholders’ views about research ethics issues during infectious disease outbreaks in Africa. Design. We conducted an online survey of 330 participants attending the International Conference on Re-emerging and Emerging Infectious Disease (ICREID) meeting that took place from 13-15 March 2019 in Addis Ababa, Ethiopia to elicit their views on various research ethics complexities experienced in the 2014 Ebola outbreak. Results. Study results revealed some divergent views on several ethical themes including: ethics of using unregistered interventions in outbreaks; acceptable study design; ethics review processes; risks-benefit assessment; exclusion of pregnant women and children; and biological sample and data sharing. Majority (76.3%) of respondents felt that in the absence of available standard treatments or prevention modalities, the use of investigational interventions can be ethically justifiable if there is a strong scientific rationale and favorable risk-benefit ratio. Regarding conventional placebo-controlled trials during outbreaks with high case fatality rates, respondents that considered this unethical were more than three times those that felt such design were ethically justifiable. We were somewhat surprised that a majority (almost 60%) of respondents were satisfied with the exclusion of pregnant women and children in clinical trials during outbreaks. All respondents concurred with the prioritization of informed consent for research during an outbreak. Conclusions. Based on our findings, research ethics guidance is needed to equip research stakeholders in dealing with ethical complexities arising in the conduct of research during emerging disease outbreaks - especially regarding using experimental interventions; placebo trial design; inclusion or justified exclusion of pregnant women and children; and biological sample/data sharing. The findings will be used in ongoing efforts of developing a consultative and coherent African-centric framework to support ethical conduct of research for future emerging infectious disease outbreaks in Africa. https://jphia.btvb.org/jphia/article/view/1632Research ethics, epidemic outbreaks, emerging infectious diseases, ethical issues, Africa |
| spellingShingle | Raji Tajudeen Blessing Silaigwana Alexei Yavlinsky Sarah Edwards Research ethics during infectious disease outbreaks: a survey of African research stakeholders using the Ebola virus disease outbreak as a case Journal of Public Health in Africa Research ethics, epidemic outbreaks, emerging infectious diseases, ethical issues, Africa |
| title | Research ethics during infectious disease outbreaks: a survey of African research stakeholders using the Ebola virus disease outbreak as a case |
| title_full | Research ethics during infectious disease outbreaks: a survey of African research stakeholders using the Ebola virus disease outbreak as a case |
| title_fullStr | Research ethics during infectious disease outbreaks: a survey of African research stakeholders using the Ebola virus disease outbreak as a case |
| title_full_unstemmed | Research ethics during infectious disease outbreaks: a survey of African research stakeholders using the Ebola virus disease outbreak as a case |
| title_short | Research ethics during infectious disease outbreaks: a survey of African research stakeholders using the Ebola virus disease outbreak as a case |
| title_sort | research ethics during infectious disease outbreaks a survey of african research stakeholders using the ebola virus disease outbreak as a case |
| topic | Research ethics, epidemic outbreaks, emerging infectious diseases, ethical issues, Africa |
| url | https://jphia.btvb.org/jphia/article/view/1632 |
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