Two different research papers caught my eye this week, and for once both were open for anyone to read. Drawing on studies in very different places – a neuro-degenerative research centre in the UK (Brosnan et al.), and a research institution in western Kenya (Kingori) – both address what might be called ‘ethics at the coalface’ in the work of medical research. The context for the papers is the rise of ‘bioethics’ as a discipline – debating questions about the right way to pursue medical research or clinical work. As Kingori notes, this provides a set of principles that have been translated into tools and structures for regulation across all sorts of different places. This diversity highlights the difficulties faced by researchers (and human beings) as they try to conduct ethically sound research in complex social and political situations.
Both papers express an ambition to look at questions of ethics in the context of local work and discussions. Though ‘ethics’ had different meaning and salience for neuroscientists and fieldworkers, it is comforting that both groups of people were shown to be struggling to do what they felt to be ‘right’. As a result their actions often went beyond the regulatory and institutional frameworks that embody ‘formal ethics’.
Brosnan talks about the neuroscience laboratory, where scientists narrated their own efforts to do only the right kinds of science, such as choosing not to work with monkeys as experimental animals. More subtly they described moments when their work just felt wrong.
‘[Today] we had a quite large nine-week foetus, which was larger than average … Everything is much more defined and easy to identify. So we were having discussions about that. And neither of us [LR1 & LR3] are that keen on actually opening up the head, do you know what I mean? It just seems like a wrong thing to do.’
Brosnan and her co-authors nicely describe these reactions to scientific work as examples of ‘personal’ and ‘tangible ethics’.
In Kingori’s paper Kenyan fieldworkers are also shown to be thinking beyond regulatory frameworks. She suggests that they are faced with dilemmas as they manage the dissonance between institutional rules (for example that people should be autonomous when deciding about taking part in research), ‘community expectations’ and personal ‘values’ or ‘conscience’. Thus some of the researchers accepted that the decision to participate was effectively forced on people living in poverty, whose need for medicines overrode their concerns about the risks of participating in research.
‘If these mothers had money they would be taking their kids to health facilities. But then it’s because of the poverty level that’s why they want to get involved in a study, because like in a study all who get involved, the kids get free medication so they don’t have to go round looking for money to bring their kids to hospital… I mean this is an area that is prone to diseases, like diarrhoea, malaria… the level of malaria has gone high, diarrhoea it’s serious.’
Fieldworkers struggled to live with the knowledge that this reality compromised the ethical principle of autonomy, but also their desire to help people in poverty. Thus both papers make visible the variety of ‘everyday ethics’ (Brosnan et al.) and local ‘ethical labour’ (Kingori). But I wonder about the effects of narrating these decisions in terms of ethics at all?
It may be that the authors want to talk to ‘bioethics’ as a discipline or community. Having shown that there are different ways of doing ethics beyond the animal research license, ethics application or the consent form, one could imagine creating loops back from people’s local and individual experiences of medical research, emotions and dilemmas into shared principles and procedures.
Yet one might also chose to talk about these practices and feelings in other terms, whether those are ‘social values’, ‘human rights’ ‘moral commitments,’ or (as the Cost of Living blog might have it) the politics of health. The choice of language also frames the solution, highlighting some aspects and obscuring others, and leading towards particular institutions and sites for the resolution of tricky issues.
Talk of ‘social values’ invokes a collective or community with shared beliefs, but raises issues about how these might be agreed, and how far they might be codified, a current debate at NICE for example. Talk about ‘human rights’ to me appears to turn attention to the global dimension, and is unfamiliar to many working in healthcare, where the focus has tended to be more on professional responsibilities, but has some recent advocates (for example see this paper by Yamin on maternal health). Talk about ‘morality’ may lead away from the institutional response to attempts to support individuals trying to do good, perhaps strengthening the space for personal reflection and action, or a choice to employ people with particular qualities. Recent political discussion of the loss of ‘compassion’ in the NHS has been conducted in this vein. Talk about the politics of research suggests we might look to redistribute power and create new sites for debate and disagreement.
The papers did not set out to settle these issues. As I said earlier, one of the things I liked about them was that they pointed to quite everyday examples of people thinking about right and wrong, and acting accordingly. However for those of us working in this area I think there is a choice about how far we buy into frameworks of ‘ethics’ or other ways of approaching normative questions. These often fail to do justice to the overwhelming complexity of the social, moral, legal and political contexts in which research (and life) takes place.
