This is a guest blog post by Dr Martyn Pickersgill and Dr Emilie Cloatre, co-investigators for the AHRC Science in Culture Theme Research Network ‘Technoscience, Law and Society: Interrogating the Nexus.’ Martyn Pickersgill, @PickersgillM, is a Wellcome Trust Senior Research Fellow in Biomedical Ethics at Edinburgh Medical School, and Dr Emilie Cloatre,@emiliecloatre, is a Senior Lecturer in Law at Kent Law School.
Have you ever given any thought about what should happen to your brain after you die? It’s a question that doesn’t really occur to many people, especially those lucky enough to live without any form of neurological illness. Donating kidneys, bone marrow, even eyes – these are widely known as organs that are often needed and donated in life or following death, to loved ones or perfect strangers. Not surprisingly, social scientists and medical humanities scholars have long been attentive to the societal dimensions of organ donation.
Brains, however, are a little different. The brain occupies an unusual role within the body and society – it is an organ of ‘mundane significance’. It can be treated as special and important, but equally can sometimes also be de-emphasised in everyday discourse, with priority given to genes, hormones, and friendships as loci of identity.
The brain is different too in terms of donation. We can’t donate a brain to someone else – but we can donate brain tissue for use in scientific research. In order to be available for studies, tissue needs to be stored in ‘brain banks’. These include those set up and maintained by the Medical Research Council Brain Bank Network, which “will provide high quality brain tissue to scientists and clinicians to carry out cutting edge neurosciences research, and will support major initiatives on research into neurological disorders”.
Scientists today are using ‘banks’ of brain tissue for a range of research activities. But this raises challenging legal and ethical questions. Who should give consent for the use of tissue? Who should get to access it? What kind of organisation should regulate brain banks?
To consider these and other questions, we held a public event in Edinburgh on the 25th March. Several speakers gave short talks, and the public participants were invited to ask questions, and share their own thoughts and concerns. The event was held as part of a national network (funded by the UK Arts and Humanities Research Council) of academics and other professionals researching the interactions between science, technology and law.
Since it was part of the Technoscience, Law and Society Network, our aim was not simply to ‘inform’ people about developments in biomedicine, but rather to use a compelling case study to animate public engagement with law and ethics (rather than just science per se). It was important to us that not only specialists came along; instead, we saw in attendance a constellation of publics of different ages and backgrounds, including a variety of health professionals, scientists, lawyers, and people whose interest developed from their own health biographies or for a range of other reasons.
After we made our introductions, two ‘scene setting’ talks were given by Dr Tineke Broer and Professor James Ironside, both of the University of Edinburgh. Drawing on a project funded by the Leverhulme Trust, Tineke began with a sociological overview of ‘Brains in Society’, speaking about the place, role and impact of neuroscience in and on society. She showed how the brain has come to occupy a key place in societal discourse and biomedical practices, but that wider ‘lay’ understandings of health and identity also shaped the ways the science was used (and what was researched). James spoke about ‘The Need for Brains’ from a scientific perspective. In particular, he evidenced the importance of dementia, and described the how brain tissue could help with research in this area. Ms Aisling McMahon (of Newcastle University) and Edinburgh’s Dr Shawn Harmon then went on to speak about the legal and regulatory aspects of brain banking.
Aisling noted that the donation of brains, and their use in research, was governed by the Human Tissue Authority. There is no ‘bespoke’ legislation for the brain, and individuals can express a wish to donate themselves, or family members may be approached directly by a nurse about donation following a bereavement. Many protections are in place with regards to donor autonomy and capacity, but this invites further discussion of the interests to the wider public of people (not) donating their brains for research.
The international context of brain donation was the focus of Shawn’s talk. He described a variety of national and supranational regulatory instruments designed to promote socially- and ethically-robust scientific research. Some of these instruments came with expectations about their use, but they were not legally-binding. Further, there were issues about which ethical principles should underpin them, and the extent to that these should carry through and shape regulatory content.
Following the talks, a group activity was convened by Dr Catherine Rhodes from the University of Manchester. This was designed to prompt and develop small group discussions that would cast light on the difficulties of regulating in this area, and the challenge of deciding decision-making criteria to begin with.
The audience discussion and debate that followed each of these talks and which carried on throughout the rest of the afternoon (following the group activity) was as wide-ranging as we’d hoped for. Brains came to be one of several cases through which to discuss the practices and potential of tissue donation, and the means by which this was and should be regulated. Some people had particular questions to the speakers – about the ways that brains could be donated, for instance. Others wished to share concerns; for example, about the degree to which research approved by ethics committees really was ‘ethical’.
The participants came later to focus especially on the importance of tissue donation for health – and how important it was to encourage donation in ways that were not coercive, and did not discriminate (or offend) particular populations. Regulatory guidance and ethical debate emerged as particularly important for types of tissue where the cost for donation to the individual (or their family) was perceived as high, but where the potential health benefit to others was regarded as low.
Overall, we were excited about the enthusiasm and interest of the audience – not just in the science of brain donation, but also (and perhaps more so) in the legal and ethical issues that shaped and were propelled by it. The engagements of ‘the public’ with the academic research presented also provoked us and the speakers into thinking more carefully about our own assumptions about the practices of regulation and governance, as well as providing stimuli for further research and deliberation.
A blog post titled ‘The Material Life of Science and Law’, detailing a previous event held as part of the Technoscience, Law and Society Network, can be found here. Follow @TechLawSociety for updates from the project.
This is one of a series of guest blog posts written by AHRC Science in Culture Theme Award Holders. The Science in Culture Theme is a key area of AHRC Funding and supports projects committed to developing reciprocal relationships between scientists and arts and humanities researchers. More information about the Technoscience, Law and Society Network can be found here. Follow us on twitter at @AHRCSciCulture for updates from the theme.
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