By Julian C. Hughes and Julian Sheather.
COVID-19 has indeed, to quote Hamlet, brought, ‘Contagion to this world’. Less than a month after it was first reported, the Nuffield Council on Bioethics (NCoB) issued its report, Research in Global Health Emergencies: Ethical Issues. In its discussion of the ethical issues raised by global health emergencies, the Report could not have been more timely. It is no surprise that the subsequent guidance issued by the World Health Organization (WHO) about research in connection with COVID-19 should have drawn on the report. Both the Report and the WHO’s guidance can be read with profit and are freely available on the web. Here we wish to highlight the Report’s ethical compass.
The aim of the ethical compass was to establish the values that might help those involved in planning and implementing research, from policy-makers to first line researchers. The compass highlights three overarching values: equal respect, fairness and the reduction of suffering. These values are relevant in a variety of ways to research to do with COVID-19, and, it should also be noted, to the health and humanitarian response itself.
Equal respect involves treating everyone as moral equals by asking questions such as how can we respect and protect people’s dignity, agency, humanity and human rights throughout the research. One facet of such respect is that participants should receive feedback from the researchers. Those agreeing to take part in research should be treated as equal participants, not just passive subjects, with rights to information and feedback. People who put themselves forward for early vaccine studies, for instance, should be told the results. Equally, in the COVID-19 pandemic the results of post-mortem research might be of some comfort to relatives.
Equal respect also suggests the need to be sensitive to local values, which means that there should be local involvement in the planning of research. For instance, in previous emergencies ‘helicopter research’, where researchers from resource rich settings ‘parachute’ into health emergencies, often in the global South, and effectively export rich data and other intellectual value, has come in for sustained criticisms. Indeed, there have been warnings that the poorer nations are likely to be the ones that suffer most from the current pandemic.
Equal respect argues that participants in research should be informed of how they have contributed to the bigger picture in terms of understanding. People must feel, in Kantian terms, that they are ends in themselves and not mere means.
The second value of fairness relates to equal respect in that it suggests that processes should be inclusive and transparent, that the benefits and burdens of research should be distributed equitably and that collaborations between researchers should be fair for all. In COVID-19 the need for international collaboration and openness is imperative. However, this point of the compass highlights the requirement for results and the ensuing benefits to be distributed fairly. Samples collected from a variety of countries, including poorer countries, should not be used to create vaccines predominantly for distribution within richer countries.
Epidemiologists must be able to make accurate comparisons between countries to identify the effectiveness of different policies of control and containment and what might contribute to differences in pathophysiology between countries. This sort of fairness will be essential for future planning; but it depends upon states and institutions collecting data in a uniform and honest manner, as well as on collaboration.
Ultimately any research in this arena should be aimed at reducing suffering. But it is worth asking, in connection with COVID-19, questions about suffering quite broadly. What are people’s actual needs and how might research help? There is the obvious suffering caused by the disease itself, where developing treatment interventions and protocols in a timely manner will be obviously beneficial. Is it possible, for instance, to establish the symptoms and signs that point towards the need for earlier intensive treatment?
A pandemic is much more than a biomedical event. It has profound implications for all aspects of our social and personal lives. Another type of suffering might derive from the social measures taken to stop the spread of the disease. What is the real experience of older people who are told to self-isolate? What are the broader costs, in terms of physical and mental health, of governmental policies around work and leisure during the COVID-19 epidemic? Who is determining the types of questions that are being researched? Where does power lie in the setting of the research and who benefits from it?
The answers to the contagion in the world will in large measure come from scientific research with its own imperatives; but research is also a matter of moral choices and ethical values being put into effect. The overarching values of equal respect, fairness and the reduction of suffering are a good place to start.
Authors: Julian C. Hughes and Julian Sheather
Julian C. Hughes was a NHS consultant for over 20 years and professor in old age psychiatry. He remains honorary professor at the University of Bristol and visiting professor at Newcastle University, UK.
Julian Sheather is a specialist adviser in ethics and human rights to the BMA and a consultant ethicist for Médecins Sans Frontières (MSF) and Save The Children.
Conflict of Interest: Both authors served on the working group of the Nuffield Council on Bioethics (from Jan 2018- Jan 2020) which produced the report discussed in this paper: ‘Research in Global Health Emergencies: Ethical Issues’. Professor Hughes was a member of the Nuffield Council on Bioethics from 2013-2019.