Research in the context of global health emergencies: writing a background paper for the Nuffield Council on Bioethics.

By Agomoni Ganguli-Mitra and Nayha Sethi

In 2016, in the wake of the Ebola and the Zika outbreaks, the international community’s response to global health emergencies and their associated moral, regulatory and political implications once again came under intense scrutiny. For the bioethics and governance communities these were real challenges, forcing us to revisit some of the most difficult ethical questions around pandemics, such as health inequality, weak health system and access to care, and reproductive health. The challenges were all the greater for having to address them within the global (heterogenous) regulatory systems. The response to Ebola for example, developing at the intersection between humanitarian response, care, and research activities - each with their values and goals - brought into question well established ethical norms and practices. It was against this background that the Nuffield Council on Bioethics launched a call to commission research on research in the context of global health emergencies.

We were fortunate to win the commission to take on this work. The brief was clear: we were to produce a background paper on the ethical and governance issues raised by research in the context of global health emergencies. The result was a challenging, but extremely interesting experience for both of us. As newcomers to the topic, there were unexpected obstacles. For example, we spent quite a few hours questioning what might, or might not count as a global health emergency. We also faced obstacles many academics will be familiar with: how to reduce a wealth of literature (relevant regulatory and governance tools, laws, partnerships, practices, actors, cases, practices and lessons-learned) into a short, comprehensive document that would be accessible, and of use to the Council.

In the end, however, teasing out some of the conflicts was one of the most interesting exercises. For example, in the particular context of infectious diseases, how do we reconcile the ‘moral obligation to learn as much as possible, as quickly as possible’ (WHO 2016) with the seemingly equally important norm of not sacrificing care for the sake of conducting research? Perhaps unsurprisingly, then, our concluding section was organised around various sets of tensions:

1. Tensions between ‘response’ and ‘research’: for example, how can care, research and innovation co-exist efficiently and ethically?
2. Tensions within research: for example to what extent can we develop anticipatory ethical and regulatory frameworks for research during epidemics, in a context where oversight and governance need to be particularly sensitive and responsive to evolving and emerging situations?
3. Tensions arising in priority-setting and collaboration: for example, when engaging local, regional and global communities, how do we ensure that all voices are heard and differing priorities are taken into account?

It is not often that academics witness their work being put to immediate practical use. In this case, our background paper served to inform a workshop at the Nuffield Council on Bioethics, to which we were also invited. The event brought together
scientists, physicians, responders, regulators, ethicists and other stakeholders to discuss some of the issues arising from the paper. We have certainly been inspired to think in-depth about some of the issues we encountered while writing. We are grateful to the Council for providing us with the opportunity to do so, and we look forward to continuing to contribute to this important field.

The background paper can be accessed here.

The bioethics of transnational commercial pregnancy: reflections on the J Kenyon Mason Annual Lecture with Prof Francoise Baylis

By Agomoni Ganguli Mitra

It isn’t every day that you get to spend a winter evening huddled in a distinguished, old anatomy lecture theatre to listen to some of your favourite topics—social justice, women’s health, India and assisted reproduction—in a captivating talk, followed by a warm, informal exchange over a glass of wine. Yet, last Thursday, was one such evening for me, when the Mason Institute had the pleasure of hosting its J Kenyon Mason Annual Lecture with visiting speaker Professor Françoise Baylis, professor and Canada Research Chair in Bioethics and Philosophy at Dalhousie University. If the steep benches of the University’s Anatomical Museum were enough to give you a head rush, the implications of Prof Baylis’s talk soon grounded you to a rather sombre reality.

I can't seem to take this coat off!

By Nayha Sethi

Last month, the Mason Institute had the privilege of co-hosting a guest lecture by eminent Public Health Law Professor Larry Gostin, entitled ‘Imagining Global Health with Justice’. Professor Gostin discussed his latest book Global Health Law and considered the arguments made therein against the backdrop of the recent Ebola outbreak. This was the first opportunity that I had to listen to him speak and I am so glad that I went along, but I left encased in a motley coat of emotions that I just can’t seem to take off.

First, inspiration: the passion with which Professor Gostin spoke, the considerable progress that has already been made in improving global health and striving towards the UN Post-2015 Development Agenda. It was heartening to hear that so many individuals and institutions are dedicating themselves towards the achievement of global health with justice. Professor Gostin shared with us some very important ways in which we might do so. Then along came shame closely followed by guilt: as we were reminded of the inequalities within the world, the narrative of hardship and suffering, ‘the narrative of the poor’ that remains. The fact that we are focussing on ‘the wrong priority’ and the injustices of global disparities in health. The fact that the international community has failed the countries most affected by Ebola.