Dr. Kathryn Toure, Regional Director, IDRC Nairobi office for eastern and southern Africa, with assistance from Angela Baiya and other IDRC colleagues[1]
for HUMA-FIFE “Ethical Humanitarianisms” webinar no. 1 on Humanitarianisms: Values, Canons and Ethical Considerations
part of a 9-month series organized Apr.-Dec. 2021 by Institute for Humanities in Africa (HUMA, University of Cape Town, South Africa) and Friedensau Institute for Evaluation (FIFE, Friedensau Adventist University, Germany)
20 April 2021
I was happy to participate in the first session of the nine-month “Ethical Humanitarianisms” webinar series, alongside Carl Manlan of the Ecobank Foundation and Lucy Koechlin of the Oumou Dilly Foundation. This paper summarizes and elaborates my contributions.
Canada’s International Development Research Centre (IDRC) has been supporting researchers in the Global South for over 50 years, to respond to local, national, regional, and global challenges and aspirations. Currently, we fund work at about 340 organizations across the African continent. I have worked with IDRC for eight years and draw here on IDRC experiences in discussing research ethics.
Research ethics have to do with the attitudes and practices of researchers that ensure respect for the rights and dignity of individuals and communities[1]. Easier said than done! Especially when even the term “research” is linked in many people’s minds to European imperialism and colonialism, according to Linda Tuhiwai Smith in her book on Decolonising Methodologies[2].
I will mention the IDRC Corporate Principles on Research Ethics and some findings from research on research ethics in Africa and the Middle East. I will share some lessons we are learning from IDRC grantees, including about participatory research processes and power analysis, and wrap up with some reflections on representation and communications.
On the one hand, research ethics are universal in that that they have to do with respecting rights and dignity, not doing harm, and ensuring community participation in research and benefits to the communities where the research takes place. On the other, context is dynamic and plays a role in determining the ethical considerations in research processes. Tensions exist. How do we ensure that some dominant voices, including those of researchers and research funders, respond to contextual realities and relations rather than dictate ethics to those they research and fund?
I argue for the need to conduct research on research ethics, be cognizant of power relations, promote participation and inclusion, continually learn across cultural, disciplinary, organizational, geographic, linguistic, and other boundaries, and evolve practices to keep up with changing times and situations.
1. IDRC Corporate Principles on Research Ethics
At IDRC, we established an Advisory Committee on Research Ethics (ACRE) to guide Centre employees and promote regular staff learning about research ethics. The IDRC Corporate Principles on Research Ethics are available on our web site. The three principles have to do with respect for persons, animals, and the environment; concern for the welfare of participants in research processes; and the need to treat people fairly, equitable, and with dignity. The research we support endeavours to “adhere to universal concepts of justice and equity while remaining sensitive to the cultural norms and practices of the localities where the research is carried out.”
The IDRC corporate principles on research ethics draw on the Canadian Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS 2). An online tutorial (TCPS 2: CORE Course on Research Ethics) on the statement on ethical conduct is hosted by the Government of Canada for researchers and members of research ethics committees.
Our principles on research ethics do not exhaust all ethical concerns, but they guide us. IDRC states that research work involving human participants must be carried out in accordance with high ethical standards. In contexts where there is no official institutional or national research ethics body, IDRC suggests the research teams set up an ethics committee for the project.
Similarly, guidelines involving ethical use of animals in experimentation have been established by IDRC. All research teams are expected to provide valid proof of permissions for animal experimentation protocols relevant to their legal jurisdiction. For programs such as the Livestock Vaccine Innovation Fund, no more than 15% of the total budget may be expended on studies involving animals until the requisite approvals are in place and notification to that effect has been provided. To ensure proof of compliance with animal welfare laws, rules, and regulations, research teams must (on an annual basis) provide a signed letter from their Institutional Animal Care and Use Committee Chairperson (or equivalent), attesting that all research undertaken during the reporting period conformed to appropriate animal welfare laws and ethics protocols.
Regarding research involving humans, in southern Africa, leaders of the San peoples are “convinced that most academic research on their communities has been neither requested, nor useful, nor protected in any meaningful way.” Thus, in 2017, the South African San published the San Code of Research Ethics. It requires researchers “intending to engage with San communities to commit to four central values”: fairness, respect, care, and honesty, “as well as to comply with a simple process of community approval.”[3]
2. Research on research ethics
To continually deepen understandings of ethical issues, IDRC funds projects specifically on ethical questions in research. The University of Cape Town is exploring tensions in private sector- or industry-funded research, when commercial interests may be at odds with development goals.[4] The results will inform learning modules and toolkits on managing conflicts of interest in ethics review committees and institutional review boards across the continent, to protect people and the integrity of public health research. The findings will inform, for example, the development of learning modules for ethics review committees and institutional review boards via the Advanced Research Ethics Training in Southern Africa program of Stellenbosch University, a collaboration between the university’s Centre for Medical Ethics and Law and the Faculty of Medicine and Health Sciences.
Wits University in collaboration with the Southern African Research and Innovation Management Association (SARIMA) offers an eight-week online course on Research Ethics and Integrity, with professors from South Africa, Zimbabwe, and Nigeria. Those who take the course are expected to learn to articulate the philosophical and moral principles of ethics, resolve ethical problems in decision-making, apply scientific integrity and publication ethics, support research protocol development and good clinical practice, and, finally, and importantly, help sustain a culture of research ethics.
In the Middle East and North Africa, three teams, funded by IDRC, seek to strengthen the application of research ethics. One team is mapping research ethics processes in the social sciences.[5] Another, which includes Birzeit University in the West Bank, is drawing on case studies to produce contextually relevant research ethics protocols in social sciences, public health, and humanities research.[6] A third team is reaching out to young scholars to get their perspectives on ethics.[7]
The Science Granting Councils Initiative (SGCI) brings together 15 national councils in Africa that makes grants for research. Council staff meet regularly to learn from each other, plan transnational collaborations, and advance African leadership in science. In March 2021, SGCI hosted a seminar on ethics and integrity in research and innovation in Africa. The Scinnovent Center, a think tank in Kenya, commissioned a paper[8] for the webinar.
The participating research council representatives noted the need for training of researchers in research ethics and ongoing learning to enhance the application of best practices. They stressed that organisational ethics and integrity guidelines and standards need to reflect specific sociocultural contexts and be adapted over time as situations evolve. Understanding that the world is bigger than the interests of those who fund research, ethics protocols should be elaborated by or in consultation with the communities served by research.
At the SGCI webinar, there was also interest in how to identify and prevent academic bullying, “an important but ignored factor in science’s backyard[9].” Academia needs to be intentional about cultivating environments where collaboration is promoted, and bullying called out. United Kingdom Research and Innovation (UKRI) has a position statement and forum on preventing bullying and harassment. The Ford Foundation explores the role of funders, in the #MeToo era, in responding to abuses alleged[10] in the organizations it supports[11].
As part of the work on research ethics with science granting councils in Africa, the Association of African Universities is collaborating with the African Academy of Sciences to fund participatory studies[12] across the continent at national and regional levels on “Deepening knowledge and implementation of research ethics,” including one study from the perspective of gender transformative approaches[13]. These studies promise to be a rich source of information for researchers and communities as well as for research ethics committees and research funders in Africa and beyond.
IDRC work[14] with about 40 policy research organizations in 20 countries around the world revealed that many of these organizations struggle to integrate strong ethical procedures within their organisational culture and processes. The processes, which may not be particularly inclusive, are often check-box procedures which include criteria that may themselves be outdated. If ethics affect us all, and we are all responsible for how they manifest in our reality, then something more is needed at the organisational level: buy-in from organisational leadership; ownership by all organisational members; feedback and learning loops which support and reinforce positive behaviours and attitudes by all those involved in research.
Despite these ongoing challenges, there is increasing awareness about research ethics among researchers and members of research ethics committees and institutional review boards. Non-researchers sit in audience with researchers in these committees and boards to review research proposals and ethical questions and provide guidance. Together, the diverse members of these committees and boards discuss the risks for participants and the potential benefits of the research. A global researcher funder should account for differences in power and resources among researchers in the Global South and the Global North.
Every year, IDRC hosts a dozen young Research Awardees, some of whom conduct research on research ethics. Through their annual work, we stay abreast of developments and new insights. For example, in 2021, a Research Awardee, working with the Home-Based Care program of the Rwanda Biomedical Center, is researching ethical issues around the use of a widely used mHealth tool, which is part of Rwanda’s public health response to covid-19. The work will support Rwanda’s institutional review boards to create an ethics framework regarding home-based or remote care of patients. The research questions have to do with ethical conduct, the influence of patients and healthcare providers on the evolution of the approach and tools, and equitable access to care.[15]
An IDRC Research Awardee in 2018 researched the ethics of conducting adolescent reproductive health work with Syrian refugee girls in Jordan. The researcher found the need to consider cultural norms about reproductive health, respect autonomy and rights, and analyze power relations including with donors. The research showed how some girls were coerced to participate in studies and over-researched (see Figure 1). The researcher recommended richer ethics curriculum and training for researchers, enhanced public and participant ethics awareness, age-specific ethical guidelines, and increased supervision of ethics.
Figure 1: Ethical challenges and themes found in research on the ethics of reproductive health work with Syrian refugees[16]
In 2018 a cohort of IDRC Research Awardees published their findings from case studies on ethics in a special issue of the Canadian Journal of Bioethics titled Ethics and International Development Research. The case studies from around the world relate the experiences of young researchers studying research ethics. The special issue includes a paper on responsible access to data in Tanzania and one on the role of social capital in obtaining ethics approval in Ethiopia.
Research on research ethics is important. Research methods are also important. How can research respond in real time, given that the contexts in which research is undertaken are also changing rapidly and dynamically? How can the research methods used to explore research ethics reflect the complexity and rapid evolution within different contexts? Can participatory methods help close the gap between research participant, researcher, and funder? Will research better account for the complexity of human predicaments when an intersectional lens is employed?
3. Learning from IDRC grantees and other research communities
At IDRC, we depend a great deal on our grantees and other research communities to learn about ethical issues and come to approaches to ethics that are mutually negotiated. We try to listen to the voices and experiences of our grantees in the different contexts in which we work.
For example Just Associates in southern Africa developed a “Feminist Participatory Action Research Ethics and Security Protocol.”[17] Feminist participatory action research (FPAR) accounts for women’s multiple identities and worldviews. It reconstructs conceptions of power beyond male and mainstream perspectives to help people tell their stories. And it is oriented toward action.
The ethics and security protocol was developed in the context of Just Associates’ research on Strengthening women’s voice, power and safety to address gender-based violence in Malawi and Zimbabwe. According to the protocol, ethics are not just rules, regulations, and laws but rather good practices to be observed during research.
The implementation of the protocol helps to ensure that research participants are protected from potential harm throughout the research process and that unnecessary and unwanted pain and suffering are avoided or alleviated. It suggests processes for listening and responding to each other, on the terms of the research participants. “Ethical decisions during research are often difficult and this is the reason why the FPAR process is guided by ethics which are based on care for self, others and the whole environment in which research is taking place.”
The protocol promotes participation and inclusion by those who will be impacted by the research. It proposes a power analysis to expose existing power dynamics and try to ensure that those power dynamics are not reproduced in the context of the research. This includes an analysis of who is funding the research and how the research problems and objectives are determined.
IDRC promotes learning among grantees across disciplinary, national, and linguistic borders. There are also cultural, social, gender, class, and other boundaries. The sharing of lessons and best practices across borders and boundaries can help deepen understandings of ethnical practices. For example, the work of Just Associates on the development and implementation of its research ethics and security protocol inspires grantees like Youth Empowerment Transformation Trust (YETT) and the Research and Advocacy Unit (RAU), both in Zimbabwe.
A review of literature and of policies and programs in 14 countries of Asia, Africa, and the Middle East, by the “Covid Collective” of the Institute for Development Studies calls not only for participatory approaches but also the use of an intersectional lens in responding to covid-19 and contextualizing data within systems of power[18]. These are ethical concerns, because they have to do with the quality and thus the utility of research and the need to consider humans not as monolithic or in dichotomies (i.e. woman or man, rich or poor, black or white) but as complex multilayered beings with intersecting and intertwining her/histories and identities.
4. Tailoring research ethics
At IDRC we are learning more about research ethics in contexts of multidimensional fragility (including political, societal, economic, environmental, and security dimensions)[19] and in countries, like South Sudan, at critical democratic junctures, where building up the national knowledge system is important for long-term development.
Some question the ethics of referring to “fragile” contexts and consider the term pejorative and the approach deficit (rather than strength or asset) based and prefer more appreciative inquiry. Notwithstanding, “fragile contexts are marked by multiple and mutually reinforcing challenges, including institutional, livelihoods, climate, and economic, and all these render populations and research participants more vulnerable.”[20] The same principles of research ethics apply in fragile situations as elsewhere, and they need be tailored to the circumstances.
Ethical considerations in fragile contexts include the safety of researchers and participants, consideration of trauma, application of the do-no-harm principle, and balancing researcher incentives and risks with societal benefits. Research ownership and localisation of the research agenda matter[21]. People and organizations in the communities in which the research takes place need to be involved for the research to be meaningful, and research partnerships need to be based on equality. The Global Code of Conduct for Research in Resource-Poor Settings highlights key principles to take into consideration.
At a 2019 consultation IDRC organized in Amman, Jordan, the consensus was on the need to “put people at the centre: their vulnerabilities, rights and aspirations, and diversity including gender and ethnicity.” These concepts are being integrated into the guidelines of IDRC’s Advisory Committee on Research Ethics.
Working with migrants and youth and other potentially vulnerable communities of people also brings added ethical considerations. The principle of justice is important, as in the example of Just Associates and its Feminist Participatory Action Research Ethics and Security Protocol. Care should be taken to ensure there is no exploitation of vulnerable groups or any other participants in the research. Researchers need to be aware of and take measures to avoid harmful biases which disempower any group of people. A threat analysis for each group of participants is recommended, because risks vary from context to context and person to person.
Research has for a long time been conducted both in person and virtually[22]. The covid-19 pandemic and the accompanying necessary confinement is bringing more attention to new kinds of research in virtual settings. A researcher from the BRAC Institute of Governance and Development in Bangladesh and co-authors call for sharing innovative methods for “finding out fast” in the context of covid-19 and also for orienting research partnerships across the global North and South for strong Southern leadership[23]. Researchers are also sharing perspectives on doing remote participatory research[24].
Purbita Sengupta and Megan Douglas, two IDRC colleagues and former Research Awardees, in a forthcoming paper[25], use a lens of decolonising knowledge to address the ethics of researchers in the Global South conducting virtual research funded by organizations in the Global North. What are the implications of greater physical distance between researchers and communities where research is conducted? How do researchers remain connected to reality? How do donors ensure relevance to changing contexts? How do all actors question existing hierarchies of power and knowledge production?
As more researchers shift to more virtual methods, it is important to consider how researcher-participant relations are changing and what measures should be taken to limit power differentials and encourage participatory methods. The forthcoming paper proposes that a feminist, decolonizing framework can help address power differentials, because it considers the ways in which power is reproduced, acknowledges different forms of understanding, and recognizes that everyone is a holder of knowledge. The paper applies a decolonization lens to the ethical and methodological challenges surrounding privacy and the consent process for virtual qualitative research that uses online interviews and surveys. There are many different approaches to decolonizing knowledge in the virtual research space, such as creating more inclusive funding mechanisms and promoting broader knowledge sharing channels.
Conversations about and actions to decolonize the production and use of knowledge are critical ethical issues, especially when the Black Lives Matter movement is becoming a global phenomenon. IDRC participated in the November 2020 Victoria Forum on “Bridging Divides in the Wake of a Global Pandemic,” hosted by the University of Victoria and Canadian Parliament, with participation of people from around the world, including First Nation peoples, in a session on decolonizing knowledge to bridge social divides.[26]
Research ethics are seen by some as ways to contribute to the decolonization of research, and not just as box-ticking exercises to meet criteria of research ethics committees, showing adherence for example to ethical practices in the biomedical sciences. The debate from this angle leads to understanding more deeply how research should not do harm. Knowledge processes needs to consider culture and history.
5. Ethics in representation and communications
Using appropriate photos and language in communications is important. At IDRC, because research is publicly funded, we try to make sure that the work of grantees is publicly available. We also reflect on how we aggregate and share research findings, to ensure that how we communicate does justice to communities where the research is conducted, promotes equality, and ensures that we do not unintentionally reinforce us-them stereotypes rooted in global power and colonial legacies (example: using words like “field picture” without names or geographical identification). We have been called out, and we have also called out grantees – for example for oversimplifying complex situations by tweeting how a white man is finding solutions to African women’s mobile telephony conundrums. See the New York Times article Foreign Aid Is Having a Reckoning on decolonising the development sector.
Conclusion
Research ethics are important, to ensure that participants in research processes are respected and protected, and that research benefits the communities in which it takes place. Research ethics are evolving conceptually, for example regarding decolonising knowledge and development. They are also evolving practically, for example by employing an intersectionality lens and being participatory instead of extractive. The augmented use of digital tools may also raise new kinds of ethical issues. Research ethics are rooted in dignity for people and society and need to account for power relations in different contexts and be negotiated. Research on research ethics is necessary to highlight existing and emerging ethical dilemmas and inform practices, protocols, and curricula on research ethics. Communities, like the San peoples of southern Africa are developing tools and processes to hold researchers accountable. Research managers and funders in Africa and beyond are updating courses on ethics to take ethics beyond a checkbox activity to promote attitudes, cultures, and practices of mutual respect. Discussion of ethics like in the 2021 HUMA-FIFE webinar series on “Ethical Humanitarianisms” is also part of the process of understanding and evolving ethical practices in research and the meaningful co-construction of knowledge. Such discussions reveal our human predicaments, complexities, and interconnectedness and make us more human.
[1] Thanks to the following IDRC colleagues for input: Ann Weston, Arjan De Haan, Claire Thompson, Ellie Osir, Kevin Tiessen, Loise Ochanda, Martha Mutisi, Maryam Abo Moslem, Montasser Kamal, Purbita Sengupta, and Roula El-Rifai. Also thanks to former colleague Peter Taylor (now back to Institute of Development Studies) for the review of this reflection on research ethics and his suggestions and additional references.
[1] Rwomire, A., and Nyamnjoh, F. B. (Eds.) (2007). Challenges and responsibilities of social research in Africa: Ethical issues. Addis Ababa: Organisation for Social Science Research in Eastern and Southern Africa (OSSREA).
[2] Smith. L. T. (1999). Decolonizing methodologies: research and indigenous peoples, cited in forthcoming paper by M. Douglas and P. Sengupta, Virtual qualitative methods: Challenges and opportunities for decolonizing knowledge production.
[3] The San Code of Research Ethics | SpringerLink
[4] Reducing risks to research integrity and conflicts of interest in public health research funding in Africa (#109361)
[5] Mapping drivers, capacities and needs for research ethics in the Middle East and North Africa (#109381)
[6] Research ethics discourses, practices and leadership in the Middle East and North Africa – Innovative learning platforms in fragile settings (#109379). The case studies are drawn from, among other sources, research on suicide bombers and their families and research on sexual and reproductive health and rights.
[7] Research ethics discourses, practices, leadership in the Middle East and North Africa – Supporting research and training in fragile settings (#109341)
[8] The Scinnovent Center paper on research ethics, forthcoming in 2021, is by Paul Ndebele (George Washington University), Paulina Tindana, University of Ghana, Accra, Mary Kasule, Baylor clinical Research Centre, Gaborone, Botswana, and Zivai Nenguke, Centre for Sexual and Reproductive Health Rights, Zimbabwe.
[9] “Bullying can consist of inappropriately changing authorship positions, taking credit for ideas or intellectual property for one’s own benefit, verbally abusing others in a regular and progressive way, ridiculing or publicly shaming people, and threatening a bad recommendation or the loss of a job position.” Academic bullying: Desperate for data and solutions | Science | AAAS (sciencemag.org), interview with Morteza Mahmoudi, a nanoscientist at Michigan State University, 16 January 2020.
[10] 2019 article in the Stanford Social Innovation Review magazine
[11] The Ford Foundation also has a funder’s guide and case studies, with real-world experiences and lessons in navigating challenging situations, to help funders build a system of grantmaking based on values of diversity, equity and inclusion (DEI).
[12] Request for proposals: Deepening knowledge and implementation of research ethics in African contexts – AAU Blog
[13] For more on “gender transformative research,” see Transforming gender relations (27 pages and available in English and French) at: Gender equality | IDRC - International Development Research Centre
[14] Via the Think Tank Initiative, 2009-2019, co-funded by IDRC, William and Flora Hewlett Foundation, UK Aid, Bill and Melinda Gates Foundation, Ministry of Foreign Affairs of the Netherlands, and NORAD.
[15] Some of the (draft) research questions: How do ethical policies capture the unique characteristics of mobile health or “mHealth”? In the first year of the pandemic, what benefits and what challenges arose in using mHealth interventions as the primary method of home-based patient follow-up for covid-19? How has patient and provider input helped evolve the approach? How have socioeconomic and gender-based specificities been explored and addressed by healthcare leaders and stakeholders and by mHealth tool designers? How have inequalities in access to care (with and without mHealth) been explored by healthcare providers and policymakers?
[16] From draft paper “Doing no harm in a fragile context: The ethics of conducting adolescent reproductive health work with Syrian refugee girls in Jordan,” by Adele Heagle (IDC Research Awardee), Malak Douglas (Jordan University of Science and Technology), and Qamar Mahmood (IDRC program officer). Paper presented at 24th Canadian Conference on Global Health, on “Fragile environments and Global Health: Examining Drivers of Change,” 19-21 November 2018, Toronto, Canada.
[17] Just Associates collaborates with the African Gender Institute at the University of Cape Town.
[18] Birchall, J. (2021). Intersectionality and responses to covid-19. Covid Collective helpdesk report. Brighton: Institute of Development Studies. See www.covid-collective.net
[19] Multidimensional fragility in 2020 | OECD
[20] According to conclusions from a March 2019 consultation and conference organized in Amman as part of “Research in fragile contexts: A changing landscape and future research agenda” (IDRC project no. 109044). See Doing-Research-in-Fragile-Contexts-Idris-2019.pdf (gsdrc.org).
[21] Leaving no one behind: Principles for research in fragile contexts | IDRC
[22] Lupton, D. (Ed.) (2020). Doing fieldwork in a pandemic (crowd-sourced). https://docs.google.com/document/d/1clGjGABB2h2qbduTgfqribHmog9B6P0NvMgVuiHZCl8/edit?ts=5e88ae0a#
[23] Rahman, H. Z., Matin, I., Banks, N., and Hulme, D. (2021). Finding out fast about the impact of covid-19: The need for policy-relevant methodological innovation. World Development, 140, https://doi.org/10.1016/j.worlddev.2020.105380
[24] See https://odi.org/en/publications/tips-for-collecting-primary-data-in-a-covid-19-era
[25] Virtual qualitative methods: Challenges and opportunities for decolonizing knowledge production
[26] Bridging divides to tackle global challenges: The Victoria Forum