Equity, challenge studies, and community engagement in bioethics?
By Bridget Pratt and Dorcas Kamuya, Vice Chair and Co-Chair (resectively) for the HSG Ethics of Health Systems Research TWG
At the beginning of July we attended the Oxford Global Health and Bioethics Conference which had participants from 40 countries (this is despite the UK government denying visas to a fair number of younger African scholars – which is a systemic problem). The conference explored the current and future role and agenda of bioethics, so with our health systems and health systems research hats on, we wanted to share some of the stand out moments.
What is the role of bioethics in a changing world?
Interestingly, International Association of Bioethics president, Anant Bhan (Yenepoya University, India), and Dr Caesar Atuire (University of Ghana, Ghana) both used their plenary talks to discuss the role of bioethics. Anant said bioethics’ role is to focus on inequities and to be more politically engaged. This means performing ethics research on topics like migration, climate change, the rise of isolationism and xenophobia, resistance to evidence-based medicine, and sexual harassment. He also highlighted “new frontiers in science” that raise ethical questions: data sharing, the changing nature of biomedical research (e.g. Challenge studies), and public and community engagement.
Caesar proposed that bioethics should try to cultivate moral characteristics in researchers and health professionals like empathy and an understanding of interconnectedness (your interests are my interests), rather than simply setting rules about what the right thing to do is for health research and clinical care.
Fakes and buzzwords in global health discourse
There are four ethical issues at the heart of the global health discourse as identified by Katherine Littler, Head of Ethics at the World Health Organization (WHO): community engagement, benefit sharing, equity, and capacity development. She called these issues poorly defined “buzzwords” that the global health community wants defined. She further issued a call to action, challenging the bioethics community to clarify the meanings of these issues within the next two years before interest in them wanes.
The topic of “fakes” in global health was raised by Patricia Kingori (Oxford University). Fake drugs, doctors, students, and publications. She noted that “shadow scholars”—academic essay writers for hire—are often individuals (and more commonly women) from lower- and middle-income countries (LMICs) who are educated in higher income countries (HICs) but return to their countries and cannot find work in their discipline. From our perspective, we see this as an issue highly relevant to returning health systems researchers. Health systems research is a much less developed field and is likely to have less jobs available relative to biomedical research in LMICs.
Challenge studies in bioethics
Presentations also covered topics like the ethics of Human Infection studies (also called ‘challenge studies’), community engagement, biobanking, and the ethics of care. Challenge studies involve the deliberate infection of healthy volunteers with pathogens to study immune response, drug or vaccine efficacy. These types of study design are on the rise globally, including in LMICs. They can significantly reduce the length of time needed to conduct clinical trials to 2-3 months, deselect non-efficacious vaccine candidates, and unpack the innate immune responses to pathogens.
Inevitably, challenge studies raise numerous ethical issues. They have high potential to significantly affect health systems in the countries where they are undertaken. Many study participants (pdf) will develop illnesses and require access to high-quality health services. This perhaps requires conducting studies in countries that have strong enough health systems or, in settings where health systems are not strong, it demands that challenge studies be accompanied by health system strengthening that is supported by funders. An ethical framework for challenge studies is currently being developed using empirical data, and will feed into a WHO framework.
The community perspective on biobanking
Another area where there is need for greater understanding of community views is biobanking – sharing of samples and associated pseudo-anonymised data for research purposes – and its ethics. Biobanking promises to contribute to the fast turnaround of research relevant to the Global South. Yet the considerable existing discourse on the ethics of biobanking contains relatively few voices from (ethicists, researchers and communities) the Global South.
Presentations highlighted that current ethical frameworks and ethics review systems, with their narrow focus on individual autonomy, do not adequately address some of the key issues that biobanking raises. These include distributive justice and repurposing of samples collected in clinical care, which can overly extend already constrained clinical staff.
Ethical issues on biobanking speak to its position as a resource for research (and not research on its own) and its positioning as a platform for ‘open science’. Approaches for engaging African communities to get their views how to address these complex topics were presented, including deliberative approaches that can inform ethics policy and practice.
Ethics of care
Moving the agenda of ‘ethics of care’ forward, the REACH Programme highlighted everyday ethical dilemmas encountered by researchers working with vulnerable populations. While ethics is often seen as part of protocol development and submission to ethics review committees, they showed the dilemmas that researchers in the frontline regularly encounter. Some of these dilemmas require an immediate response that might not be articulated in protocols or ethics applications. The use of ‘ethics reflection’ sessions with study teams was suggested to be a useful approach to unpacking these and co-designing response mechanisms. This approach is being developed to assist research studies, including health systems research, across diverse contexts.
These sessions are very relevant for health systems researchers. Ethics dilemmas for frontline researchers and others often arise during studies that haven’t necessarily been anticipated or thought through in ethics applications. For that reason, we (along with members of REACH) ran a skills building workshop at the Fifth Global Symposium for Health Systems Research that covered how to conduct ‘ethics reflection’ sessions. And on the flipside, it is also important for HSR studies to embed ethicists to facilitate these sessions during project implementation. We cannot work in our own little siloes.
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Image credit: Judit Klein, Creative Commons license 2.0
