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Abstract

What can academics do during a lockdown situation to contribute to the fight against COVID-19? They can reflect upon COVID-19 challenges in their areas of expertise and provide suggestions for difficult dilemmas. That is what the 11 authors who contributed to this special issue did. Working to tight deadlines, they drafted manuscripts related to COVID-19 research ethics, responded graciously and with flexibility to the expedited double review and submitted their final versions at double speed. For some this meant late evening work after online meetings on various COVID-19 committees. For others it meant an additional workload in their already full schedules. We are very grateful to each of the 11 authors for their generosity of spirit. We hope that this special issue will be as valuable to readers as it is valuable to us. Compelling messages emerge from this collection about how to ensure that COVID-19 research is ethical. These include the pressing need for care, solidarity and trustworthiness.

Care

While many have assumed a less active life during lockdown, 30,000 healthy people from 140 countries registered their interest to enrol in vaccine studies within unknown risks (Chappell and Singer, 2020¹). Motivations for taking part in vaccine research vary widely. On the one hand, in resource-poor settings, ‘financial incentives and access to health care are a major driver for enrolment in studies’ (Mduluza et al., 2013; Mfutso-Bengo et al., 2008). On the other hand, preliminary results from a study undertaken in Canada (in relation to an Ebola vaccine) suggest that, in high-income settings, participant motivations include the desire to help develop a new vaccine, and the desire to help others (Tangwa et al., 2018).

Whatever the reason for wanting to take part in vaccine research, care for the welfare of research participants is paramount. This includes measures for risk reduction, strict containment, specific informed consent and avoiding high monetary inducements (Tambornino and Lanzerath, 2020). In resource-poor settings, care must also be taken to avoid ethics dumping, the export of research from higher income to lower income settings (Schroeder et al., 2019). Indian COVID-19 guidelines require that vulnerable people should only be involved in clinical research where support systems have been established to deal with associated medical and social problems (Kumar and Muthuswamy, 2020).

Moreover, while these extraordinary times might require extraordinary actions, care must be taken to avoid shortcuts that may have serious consequences beyond those for volunteers. As Dawson (2020) highlights, there are sound ethical and scientific reasons for why vaccine studies proceed through certain phases, which also contribute to trust-building.

Solidarity

Coordinated international collaboration will hasten research efforts and improve the chances of successful outcomes (Bompart, 2020). This message resonates globally and across domains, along with calls for sharing of data and research findings. For instance, UNESCO (2020) describe the need for multi-dimensional, global cooperation as an imperative whilst the Organisation for Economic Co-operation and Development (OECD, 2020) maintain that open science is critical to combatting COVID-19. To this end, researchers are sharing their investigations and findings to an extent that has never been seen before. Platforms have been created specifically for hosting COVID-19 / SARS-CoV-2 research articles such as medRxiv and BioRxiv, which offer free online archive and distribution services for preprints in medicine and biology. Between them, these two servers currently host more than 6,000 papers, accrued in less than six months (medRxiv, 2020). More than 30 leading publishers, including SAGE, have committed to making their COVID-19 and SARS-CoV-2-related publications and data immediately accessible (Wellcome, 2020).

These activities are to be commended but one important aspect must not be forgotten. For global success in the fight against COVID-19, all nations and peoples must be included. In this respect, much can be learnt from African countries that have displayed a considerable sense of solidarity in the face of COVID-19 (Tangwa and Munung, 2020). Central to this view of solidarity is acceptance that all people are inextricably linked and ‘if we are to survive in such an interconnected and interdependent world where we face common challenges, we must begin to perceive the world as a global community with a shared destiny’ (Tosam et al., 2018: 242).

Trustworthiness

Around the world, people are desperate for news of effective measures to combat SARS-CoV-2. But while collaboration and sharing of research data has reached unprecedented levels, trust in at least some of the data, is relatively low (OECD, 2020). Publications shared on medRxiv and BioRxiv are preprints. They have not been subjected to a peer review process and hence readers are advised that they should not be regarded as conclusive (medRxiv, 2020). Even the peer review process is no guarantee of trustworthy information as became apparent when a highly influential study involving hydroxychloroquine was retracted from the Lancet (Mehra et al., 2020).

Controversial statements and unproven claims from researchers have been published by media outlets, leading to confusion and loss of trust among the public (ENRIO, 2020). In this context, the media have a responsibility to avoid spreading fake news (Kumar and Muthuswamy, 2020).

Ultimately, successful management of COVID-19, be it through newly discovered vaccines, treatments or tracking apps (Klar and Lanzerath, 2020), will rely upon public trust. Therefore, the need for researchers and the media to act with integrity cannot be overstated.

Conclusion

Perhaps our experience with COVID-19 is encouraging us to pose some of the big ethical questions of the 21st century in a different way. It might even help us to find more inclusive answers. How should frontline workers who care for the sick and the elderly be rewarded? How should scarce resources be allocated when non-allocation leads to fatalities? Who should assist those who face severe hardships, for instance, through unemployment? Can our ways of working be altered to protect current and future generations from the impacts of climate change? A big ethical question that awaits the arrival of a vaccine or COVID-19 treatment fits neatly into the spirit of these others. How can we ensure that we leave no one behind? Research ethics has a role to play in shaping a society that is more inclusive by pushing for more equitable research. We hope this volume has taken a small step in this direction.

Footnotes

Notes

References

Bompart

(2020) Ethical rationale for better coordination of clinical research on COVID-19. Research Ethics. DOI: 10.1177/1747016120931998.

Chappell

Singer

(2020) Pandemic ethics: the case for risky research. Research Ethics. DOI: 10.1177/1747016120931920.

Dawson

(2020) Pandemic vaccine trials: expedite, but don’t rush. Research Ethics.

ENRIO (2020) COVID-19 the importance of research ethics and research integrity standards during the pandemic. Available at: http://www.enrio.eu/news-activities/covid-19-the-importance-of-research-ethics-and-research-integrity-standards-during-the-pandemic/ (accessed 2 July 2020).

Klar

Lanzerath

(2020) The ethics of COVID-19 tracking apps – challenges and voluntariness. Research Ethics.

Kumar

Muthuswamy

(2020) Fostering ethical biomedical and health research in India during the COVID-19 pandemic. Research Ethics.

Mduluza

Midzi

Duruza

, et al. (2013) Study participants incentives, compensation and reimbursement in resource-constrained settings. BMC Medical Ethics 14(suppl 1): S4.

medRxiv (2020) COVID-19 SARS-CoV-2 preprints from medRxiv and bioRxiv. Available at: https://connect.medrxiv.org/relate/content/181 (accessed 2 July 2020).

Mehra

Desai

Ruschitzka

, et al. (2020) Hydroxychloroquine or chloroquine with or without a macrolide for treatment of COVID-19: a multinational registry analysis. The Lancet. DOI: 10.1016/S0140-6736(20)31180-6.

10.

Mfutso-Bengo

Ndebele

Jumbe

, et al. (2008) Why do individuals agree to enrol in clinical trials? A qualitative study of health research participation in Blantyre, Malawi. Malawi Medical Journal 20(2): 37–41.

11.

OECD (2020) Why open science is critical to combatting COVID-19. Available at: http://www.oecd.org/coronavirus/policy-responses/why-open-science-is-critical-to-combatting-covid-19-cd6ab2f9/ (accessed 2 July 2020).

12.

Schroeder

Chatfield

Chennells

, et al. (2019) Equitable Research Partnerships - A Global Code of Conduct to Counter Ethics Dumping. New York and London: Springer.

13.

Tambornino

Lanzerath

(2020) COVID-19 human challenge trials – what research ethics committees need to consider. Research Ethics.

14.

Tangwa

Munung

(2020) COVID-19: Africa’s relation with epidemics and some imperative ethics considerations of the moment. Research Ethics. DOI: 10.1177/1747016120937391.

15.

Tangwa

Browne

Schroeder

(2018) Ebola vaccine trials. In: Schroeder

Cook

Hirsch

, et al. (eds) Ethics Dumping: SpringerBriefs in Research and Innovation Governance. New York and London: Springer.

16.

Tosam

Chi

Munung

, et al. (2018) Global health inequalities and the need for solidarity: a view from the Global South. Developing World Bioethics 18(3): 241–249.

17.

UNESCO (2020) COVID-19 - Open science and reinforced scientific cooperation. Available at: https://en.unesco.org/covid19/sciencesresponse (accessed 2 July 2020).

18.

Wellcome (2020) Sharing research data and findings relevant to the novel coronavirus (COVID-19) outbreak. Available at: https://wellcome.ac.uk/coronavirus-covid-19/open-data (accessed 2 July 2020).

Ethical research in the COVID-19 era demands care,solidarity and trustworthiness