Social and Epistemic Justice: Are we really including Africa in the Bioethics discourse?

In their article, Fabi and Goldberg (2021) discuss concerns of racial injustice and the continued exclusion of people – based on race – in ethics research funding allocation, and how that impacts knowledge production as well as efforts to address population health priorities in the United States. Whilst we welcome their timely analysis, we would like to draw attention to a similar pattern in ethics research funding targeting low- and middle income countries (LMICs). Several large funding bodies in the United States, including for instance the National Institutes of Health and philanthropic organizations such as the Chan Zuckerberg Foundation, fund ethics research in LMICs. They do this either directly through ethics-specific grants or indirectly through funding ethics components of larger scientific research grants. Yet time and again, such funding is awarded to primary investigators or research teams in countries other than where the research is conducted. In the health research domain in Africa, this has led to repeated reminders of the enduring impact of coloniality (Sengupta 2021). We suggest that a similar problem prevails for bioethics research conducted on the African continent and that there are three interrelated challenges.

First is that virtually all the bioethics research funding currently supporting ethics research in Africa originates from organizations in high-income countries (HICs). This impacts on everything from research priority setting and the topics that can be investigated, to the composition of review committees. At the level of priority-setting, there are important questions about whether and how the current ethics-related research priorities are relevant to people based in LMICs and what is left out. For instance, in neuroscience ethics, there is a strong emphasis on investigating the ethical, legal, and social implications related to the use of expensive novel technologies like deep brain stimulation, neurowearables, responsive neurostimulators and brain-computer interfaces. If funding calls for international research are guided by such topics, and scholars in LMICs feel pressured to develop research grant applications aligning to that agenda, then even if funding is awarded, the research may not resonate with the needs and priorities of individuals in LMICs, who – because of endemic global health inequality – are unlikely to have access to these neurotechnologies (Matshabane 2021).

Furthermore, for reasons ranging from cost to trust, funding review panels tend to largely be composed of people in the HICs where the funding body is based, not of people from the LMIC where the research will take place. This biases funding in that the applications will be assessed on relevance and originality as compared to research in the country where the funding body is based, or as perceived in the eyes of HIC scholars working in LMICs. This necessarily limits the kinds of topics and methods that researchers may propose (Laudel 2006). For example, bioethics researchers in Africa may well be of the impression that a proposal that focuses on some of the ‘hot topics’ in bioethics discourses in the HICs where the funding body is based, may be more competitive than an application that explores a topic that is more locally than internationally relevant. Beninese philosopher Paulin Hountondji called this process ‘extraversion’ and we suggest it may well be at play in bioethics. Furthermore, due to a range of concerns relating to systemic bias, practical issues as well as trust in the ability of LMIC institutions to manage research funds, there tends to be a preference for funds to be awarded to investigators based in the Global North, with limited opportunities for African bioethics researchers to apply for funding as primary investigators. The lack of allocated funding that prioritizes research led by African bioethics scholars, stifles their ability to develop and lead research programs that are relevant and responsive to the ethical needs of people based in Africa or other LMICs.

Second, to a very large extent, bioethics research conducted in Africa continues to interrogate the ethics principles and practices articulated in the Global North with very little scope for methodological and conceptual innovation. Yet in order for ethics research to be relevant to the populations onto whom the ethics will be inscribed, it is imperative that it engages with their ontologies, culture and lived experiences. For instance, despite much published work on the ethics of African genomics research, only a subset of papers critically interrogates how relational ontology and notions of solidarity and reciprocity impact thereon (Ralefala et al. 2020). Furthermore, in our own work we have become increasingly attuned to the importance of ensuring that deliberation, emancipation, and empowerment are central to the methods we use to involve participants in research about ethical aspects of genomics research.

Third, we would like to draw attention to how this translates to the ‘epistemic contributions’ in the global bioethics literature. If bioethics scholars in LMICs are disadvantaged in relation to obtaining funding for their research, it impacts on their ability to contribute contextually-relevant scholarship on important bioethics debates. One way this is evident is through the limited visibility of scholars from LMICs in journal publications. A review investigating the representation of contributions from LMIC bioethics scholars found that 96% of bioethics articles published between 1990 to 2003 were from scholars in HICs and only 3.9% were from scholars in LMICs (Borry, Schotsmans, and Dierickx 2005). A more recent review in the context of psychiatry and mental health found that 93% of articles published in highly ranked psychiatry and mental health journals in 2019 were written exclusively by authors in HICs and only 2.3% were written only by authors in LMICs (El Khoury et al. 2021). This suggests that even in bioethics it is unlikely that this trend has significantly changed. This under-representation of LMIC voices is particularly disturbing considering that more than 80% of the world’s population resides in LMICs and because these contexts are affected by the greatest burden of physical and psychiatric disorders (Vos et al. 2016). Furthermore, this reality sustains the hegemony of Western bioethics and philosophical traditions and excludes other approaches such as African philosophy.

Nevertheless, here we provide some suggestions on how funders can remedy this and intentionally structure funding streams that support African bioethics researchers and bioethics research in Africa. First, funding agencies or organizations should insist on cultivating a diverse group of scientific advisers and reviewers. Specifically, if proposals are formulated that target the health and ethics of people in (selected) LMICs, then it is imperative that people from the intended LMICs are involved in administrative processes around funding, including priority setting, the drafting of calls for applications and funding application reviews. But beyond ensuring mere LMIC representation, it is important to ensure that the right people are involved. For instance, across the African continent, people from the LGBTQI+ community have been treated unjustly and their voices have and continue to be ignored. If we are to take diversity and inclusion seriously then decisions around research funding that revolves around the health or ethics needs of the LGBTQI+ community in Africa should ideally involve critical voices from that community for instance.

Secondly, when funding is awarded for health research to be conducted in Africa on African people, it is critical that the funding also be awarded to African institutions as opposed to it being held by institutions in HICs. Additionally, when funding is held by African institutions it is equally important that indirect costs are fully covered (Faure et al. 2021). That, we believe, is a more equitable alternative than having scholars from institutions in HICs come to Africa to conduct their research on African people. When that occurs, an important part of African participants’ experiences fails to be captured into the knowledge base.

Thirdly, in events where funding is allocated to an institution in a HIC, funders should hold scientists accountable for ensuring that the collaborations initiated in the grant are ethical and take seriously the contributions of African stakeholders (Faure et al. 2021). Promoting equitable collaborations is crucial and requires ensuring that there is a real opportunity for African intellectual leadership (Yakubu et al. 2018), which involves ensuring authentic and active participation of African scientists and stakeholders in the research process and dissemination of findings. Respecting African researchers means recognizing that they have the skills and expertise of other scientists and therefore should not just be viewed as field workers.

It feels like there has never been a better moment to disrupt the power dynamics and address structural barriers in biomedical science in general – and bioethics in particular. A good starting point is having authentic inclusive discussions on the role that bioethics should play as we move forward with that vision. It is indeed encouraging to witness the sudden influx of scientific spaces willing to have difficult discussions on colonization, structural racism, white supremacy, patriarchy, and other similar topics. We welcome these engagements as we move forward with the quest towards social and epistemic justice. Despite it being a long journey with a lot more work that needs to be done – day by day we are indeed changing the narrative.