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 Embryo-shaped Elephant in the Room

By Catriona McMillan

Recent scientific research published in Nature and Nature Cell Biology has revealed that researchers have been able to keep in vitro ‘embryos’ alive for 13 days.

This has produced an explosion of commentaries[1], calls for action and expressions of concern regarding the 14-day rule for research on human embryos (contained in s3(3)(a) of the Human Fertilisation and Embryology Act 1990 (as amended)).

To provide some background, this rule was put in place as a statutory embodiment of the ‘compromise position’ adopted by the UK government as a result of the recommendations of the 1984 Warnock Report. In short the conclusion of the Warnock Committee was: yes, we can carry out research on ‘embryos’, but they must be destroyed after 14 days. At the time of the enactment of the original Act, 26 years ago, it was decided that 14 days was an appropriate compromise as, at this stage in early development, the primitive streak[2] begins to form, and the ‘embryo’ can no longer split into twins after this stage. It was thus felt that this stage was morally significant, re-enforced by the belief that this was the earliest known moment when the central nervous system was likely to have formed to a meaningful extent.

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.

Broadening the Medical Ethics Perspective Through Dance

By Shawn Harmon

Answers Too Easily Attained?
One of the fundamental questions that is asked through the field of ethics is: ‘How should we live?’ This question must also be central to medical ethics, or ‘bioethics’. However, we seem to believe that we have answered this question, and we have settled into a comfortable application of that answer across a range of clinical circumstances and technological deployments:

  We should live independently and autonomously, without coercion or interference, with few imposed duties and little sense of obligation, free to avoid risk and to vigorously protect our physical and emotional integrity against state organs, private entities, and individuals. 

While this is an oversimplification, the majority of substantive assessments will either explicitly or implicitly begin from a foundational proposition not far removed. The premise is not generally objectionable, but the lack of depth in our ethical reflexivity is disheartening. How have we embedded this premise so deeply that we proceed from it in most every medical and research encounter?

Assisted Dying, what are the issues and options for Scotland?

By Dr Iain C Kerr

Introduction
My interest in death (which was a matter of great concern to the medical director of my Local Health Care Co-operative when it became clear that I was sympathetic to suicide in certain circumstances) began in the early 1970s, after I read of the works of two pioneers in the care of the dying. One was a Swiss-American psychiatrist called Elizabeth Kubler-Ross who was among the first to interview terminally ill patients and who found that many of them had a profound wish to discuss the issues around death and dying. The other was Dame Cicely Saunders who studied how doctors and nurses dealt with patients in general wards who had a terminal prognosis. She found that staff spent much less time with these patients. Therefore those who had the greatest need for communication had the least opportunity to experience it. I tried during my career to be open to discussion of these issues with my patients if they felt it appropriate.

My only experience is in general practice rather than in hospital practice. I prefer to use the term assisted suicide meaning that a competent person has expressed a wish to end his or her life and needs some guidance.

Art and Bioethics: Natural Partners for Collaboration?

By Lawrence Illsley
Sparkle and Dark Theatre Company Sparkle and Dark Theatre Company

The Mason Institute and Wellcome Trust discuss art, bioethics and assisted dying at the University of Edinburgh.

Background
Sparkle and Dark are migrating from London to Edinburgh this August to perform their new show, Killing Roger, at the Underbelly on the Cowgate during the Edinburgh Festival Fringe. On this visit, they want to make an impact on the consciousness of the city, not only with the show but also by bringing an exciting public debate about the issues raised in the play to the University of Edinburgh under the auspices of the Mason Institute.

Novel Neurotechnologies: Intervening on the Brain

By Graeme Laurie

The Nuffield Council on Bioethics has produced its latest report on the ethical, legal and social implications of novel neurotechnologies. This report is very timely because many of the technologies in question are on the cusp of moving from the research stage to the health context. They are important for a range of patients suffering from neurological conditions such as Parkinson’s Disease, Alzheimer’s, stroke, depression and OCD. Over 800,000 people suffer from dementia in the UK and 1 in 500 people have Parkinson’s Disease.

The Nuffield Council Working Party which produced the report, and which included involvement from MI’s Director, Graeme Laurie, seeks to strike a balance between the necessary caution required whenever science intervenes on the brain and the imperative to improve innovation, access and effective regulation of these technologies to help to ensure that the right treatments get to the right patients at the right time.