A research Ethics Working Group has presented a draft framework for doing research during medical emergencies in Africa. The group gathered recently at the headquarters of African Center for Disease Control, ACDC, in Addis Ababa, at a special African Union Membership Consultative session. It was the culmination of a two-year long task to formulate an African-centered Ethics Framework for Health Research During Epidemics.
“The lack of an African research ethics framework has been a glaring concern amongst African scholars [and public health professionals] for decades,” said Godfrey B. Tangwa, Emeritus Professor of Philosophy, University of Yaoundé.
“Yet the need for such a framework for research during epidemic/pandemic emergencies has become more apparent. Emerging and reemerging infections are increasingly prevalent and continue to be a major concern for global health. The Ebola outbreaks in Western and Eastern Africa and the recent COVID-19 pandemic have made clear the critical role played by ethical and scientifically valid research in informing epidemic/pandemic responses.”
Tangwa added that, “However, undertaking research in suddenly emerging epidemic emergencies encounters present complex ethical challenges owing to high morbidity and/or mortality, scarcity of resources, and time-pressured decision making.
Emerging epidemic emergencies often necessitate the need to act with speed or urgency and thereby, increases individuals’ and communities’ vulnerabilities. Also, research conducted within the context of urgency has the potential to lead to ethical
violations such as injustice and exploitation.
The framework seeks to establish the balance by proposing a framework informed
by Africa indigenous values and principles aimed at guiding ethical research practice regarding Africa.” While ethics guidance for undertaking research in pandemics and other public health emergencies have recently been published (e.g. by WHO and Nuffield Council on Bioethics), there is currently no African-centred and continent-wide, coherent guidance which promotes African values, elaborated by Africans for hosting research during epidemic emergencies on the continent – a framework informed by contextual features distinct to the African continent. Instead, most of the currently available international documents are imported and espouse foreign and sometimes inconsistent values which may even be in tension with moral norms and values dominant in African societies.
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Despite the plethora of literature calling on the need for African bioethics, existing international research ethics guidelines are still predominated by high-level ethical principles influenced by Euro-American traditions of ethics and conceptions, thus often lacking practical ethics guidance to engage in ethically and culturally appropriate research practices in the diverse African cultural contexts.
“To address this gap,” said Dr. Elvis Temfack, Senior Research Officer, Division of Public Health Institutes and Research at ACDC, “the African Center for Disease Control (a continental agency of the African Union established to support public health initiatives of Member States and strengthen the capacity of their public health institutions to detect, prevent, control and respond quickly and effectively to disease threats) convened an Ethics Working Group to develop an African-centred framework that embraces dominant African principles and values that might guide ethical conduct of research in Africa during epidemic emergencies to prevent harm to participants and communities in which such research is conducted.”
First, the framework intends to delve into the context-specific realities, nuances and challenges experienced by African countries and participating communities during research. Secondly, through this lens, the framework seeks to expound the
realities, nuances and challenges experienced in the African context during health emergencies namely epidemics/pandemics.
Another leading member of the Ethics Working Group, Dr. Blessing Silaigwana and faculty member at University of Cape Town, SA, explained that “The framework seeks to consider the historical experiences and exploitation of Africans during health research and how the rights, dignity, wellbeing of participating communities has not been respected. By acknowledging this past, the framework seeks to redress through applying African values, and acceptable ways of conducting research in Africa during epidemic emergencies, where vulnerabilities within affected societies and participants can often be exacerbated.
It is important to focus on how emergencies may increase risks of harm and injustices to participants. This framework takes into consideration historical experiences of disasters and emergencies in Africa and their impact and how these precarious situations have exposed African research participants to exploitation.”
This framework seeks to redress an image of Africa often perceived as a place where researchers from high-income countries can easily engage in exploitative, unjust, and unethical research practices due to less stringent ethical standards or less
oversight in Africa, so-called “helicopter research” and “ethics dumping”.
Whilst taking seriously the rights of communities and regions to make informed decisions about what research to permit in their region with specific focus on addressing priority problems, this framework also seeks to limit arbitrariness in research during emergencies “divide and research” – by setting minimum standards that are grounded in commonly accepted values across African societies.
The framework aims for the longterm relevance and applicability of such standards even for secondary use of data arising from research during emergencies on
the continent.
It is important to clarify that this framework does not intend to make existing international guidelines for research ethics obsolete. Instead, it is designed to ensure that African culture and values are taken into consideration in research in Africa, and key research ethics principles like the respect for one’s relational autonomy, the social value of research and minimisation of risks and fair beneficiation are prioritized and adequately contextualized to accommodate African realities.
Against this background, the framework acknowledges the guidelines by the Council for International Organizations for Medical Sciences (CIOMS) and World Health Organization (WHO) as well as the recent Nuffield Council on Bioethics guidance on
Research in Global Health Emergencies: Ethical Issues.
The CIOMS and WHO guidelines provide thorough and clear guidance that interpret ethical issues associated with research, including matters related to social value, research conducted in low-resourced settings, caring for participants’ health needs, community engagement, collaborative partnerships and capacity building and
research during health disasters and viral outbreaks.
This guideline is for researchers, sponsors, research ethics committees, health regulators and policymakers. The Nuffield Council on Bioethics report focuses on ethical issues during global health emergencies and proposes an ethical compass of three core values: ‘equal respect’ (respect for others as moral equals), fairness
and helping reduce suffering.
Shedding more light, Dr Cornelius Ewuoso, Senior Lecturer and director of Steve Biko Centre for Bioethics, University of the Witwatersrand, Johannesburg, South Africa, said that “Both documents cover salient ethical issues that must be considered and prioritized when conducting research in general and when conducting research during outbreaks, disasters, and emergencies.
Our framework concurs with these global guidelines. Although there are points of convergence with the afore-mentioned guidelines, the scope of this guideline is for the African context.
Secondly, this framework is distinct from the guidelines above because it applies values from the African continent to inform principles and the three steps of the research cycle (pre-research, research, and post-research).
This framework targets the relationships between the researcher and their participants, communities, partners, and sponsors/funders. Notwithstanding, this framework can be used by other key stakeholders, such as research ethics committees, policymakers, and regulators.”
Despite the value of existing international frameworks in guiding ethical conduct of research in public health emergencies, they do not sufficiently capture African values and principles that may be important to consider when conducting research during epidemic emergencies in Africa.
This framework attempts to close that gap. To make explicit the goal of this project, Dr. Temfack, who was also the convener of the Addis Ababa special session, reiterated the need to stamp out the practice of “ethical dumping everywhere in Africa,” adding that “If we want to move far, we must move together.”
The idea of the development of an Africa framework for research ethics in epidemics was born in March 2019 through the project lead of the Pan-African Network for Rapid Research, Response, Relief and Preparedness for Infectious Disease Epidemics (PANDORA-ID-NET) consortium and ACDC during the International Conference on Re-emerging and Emerging Infectious Disease that took place from 13-15 March 2019 in Addis Ababa.
In 2022 a concept note was developed by the PANDORA-ID-NET project lead and initial funding to start developing the framework idea was provided by Chatham House. A select working group of 15 African experts in African philosophy, bioethics, social science, public health, and epidemiology were identified through a mapping process based on expertise and track records of work addressing ethical issues on the African continent.
The members are from different countries across Africa namely Zimbabwe, South Africa, Ghana, Kenya, Nigeria, Cameroon, Ethiopia, Sudan, Uganda and Liberia.
Designing an African ethical framework for research during epidemics emergencies obviously presents many challenges, more so because it ought to be tailored to the African cultural milieu. However, it is an auspicious and timely opportunity to learn lessons from the 2014 – 2016 Ebola outbreak in West Africa and the currently waning COVID-19 pandemic.
Said Dr. Ike Iyioke, a founding member of the Ethics Working Group and faculty at Michigan State University, “The AU has 55 member states, comprising over 3,000 ethnic groups and more than 2,000 languages spoken in different parts of the continent.
Therefore, it is challenging to find a single framework that encompasses and fits across different cultures and covers all the different worldviews and experiences that are dominant on the continent or the unique challenges that pandemics often raise for individual countries in Africa. Hence, the AU-ACDC does not claim to comprehensively undertake such a task.
Nonetheless, this framework builds on the conviction that a research ethics guideline informed by key concepts and salient values in Africa is possible and imperative to address the growing call for research practices on the continent to be informed by worldviews dominant in Africa and which are culturally sensitive. In this regard, this research ethics framework proposed in this document is epistemic justice in action, that is, it demonstrates concrete ways knowledge systems in Africa and experiences of Africans can influence research ethics guidelines.
The people and communities ought not to be a mere means to an end. The special session concluded on December 16, 2023. The next phase of the process in the coming months, is to present the draft document at special regional sessions across Africa.
Written by Ike Iyioke, Michigan State University.
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