Through cross-disciplinary investigations and discussions around the governance of brain-banking (BBing), this Project (AH/J011495/1) explored interactions between science and culture, addressing questions pertaining to conceptions of the brain embedded within BB practice, the impacts of these on law, and the legal and cultural traction of the knowledge produced by BBing. This Project found that the brain is salient in legal debates around death and injury compensation, but it is treated like any other tissue/organ when it comes to science regulation. BBs are governed by de jure law and de facto regulation emerging from routinized practice and codes of conduct. Despite resonance of issues and concerns between BBs and other types of biobanks, dialogue about the ethical, legal and cultural aspects and implications of the work in these domains remains limited. More broadly, neurologic knowledge is contributing to the development of ‘neurolaw’ – a discursive realm within which there is often a poverty of understanding of both the scope and limits of neuroscience and BBs, and the practice and meanings of law. Regarding collaboration, this Project shows how the ambiguities and ambivalences that differences between intellectual traditions might produce can be leveraged to animate new interdisciplinary conversations, initiatives, and innovations.
Through cross-disciplinary investigations/discussions, the Project explored A&H and scientific interactions and the governance of BBing. Structuring questions and findings:
1.To what extent does science reflect A&H conceptions of the brain?
The brain has been an object of inquiry for centuries. Views of the importance and function of the brain have changed: Galen considered it a set of cavities occupied by animal spirits; Descartes was more concerned with the mind, consciousness and the soul; he was critiqued by those who framed the brain as an anatomical object. Mid-18th century scholars associated brain function with thought and electricity. Mid-19th century scholars began isolating parts of the brain associated with specific functions (speech). Modern BBing is reflective of the ‘biomedicalisation’ of society, a phenomenon advanced by the medico-scientific complex and popular desires for deliverance from all manner of conditions and states-of-being.
Although A&H and cultural representations of the brain do not obviously influence scientific practitioners, A&H conceptions have exerted a subtle influence on scientific thinking about the brain. What has emerged from their long-time interaction is a conception of the brain as the seat of ‘self’ (brain function is conflated with ‘self’). Neuroscience, of which BBing is a component, draws on the dominant medical paradigm of ‘disease’: physiological malfunctions can be separated from the person, causatively identified, and symptomatically relieved. BBing also adopts/advances the primary scientific ideology of atomism: the idea that we learn about nature and ourselves by reducing the object of study to its smallest components. Indeed, advances in imaging are leading to claims that it may be the ‘gorse’ of neural connections that are key.
2.To what extent do these conceptions shape the law?
Perhaps surprisingly given the sociological/cultural importance attributed to the brain, the brain has not featured strongly in legal scholarship. It has been the subject of debate regarding brain stem death, and its importance is reflected in awards for brain injuries, but it is treated like any other tissue/organ when it comes to regulation of science. UK legislation does not explicitly mention the brain, and the law has mostly remained steadfastly focused on the self (as subject) rather than the brain (as object); it focuses on capacity and vulnerability and the need for conscious reflection. It resists the neuroscience fixation on brain as self by continuing to rely on ‘illnesses of the mind’, which permit wider sources of evidence than brain structure/function evidence.
3.To what extent might scientific knowledge impact on popular understandings of the brain and/or inform/influence the law?
Scientific metaphors associating the brain with machinery, particularly computers, and modularity, are dominating popular representations. Images of brains held in hands, bandaged brains, brains inserted with usb sticks are common. But genuine public understanding of neurologic knowledge is questionable, partly because it is the more radical and contested claims that are most widely disseminated. Claims that challenge principles fundamental to the law include claims that neuroscience will:
•demonstrate that ‘we are our brains’;
•alter conceptions of rationality and free will;
•permit technological/technical assessment of truthfulness/guilt;
•allow the measurement of intellectual functionality;
•prove the existence of ‘dangerous minds’.
Such claims exert a strong influence on public expectations and demonstrate that debates around ‘neurolaw’ need further and improved input from A&H.
With respect to the regulation of BBs, we found:
•BBing is governed primarily by the Human Tissue Act 2004 (England, Wales, Northern Ireland) and the Human Tissue Act (Scotland) 2006.
•The HTA 2004 erects a licensing scheme with which BBs must comply. The HT(S)A 2006 does not, but Healthcare Improvement Scotland has recently erected a non-statutory accreditation system designed to demonstrate the ‘highest possible professional standards’.
•The HTA 2004 relies on ‘consent’ whereas the HT(S)A 2006 relies on ‘authorisation’. The latter is seen as a departure from passive acceptance; it is more active, reflecting the idea that consent for unspecified future studies cannot be ‘informed’ and is not properly ‘consent’. Both consent/authorisation form characterises donation as a ‘gift’.
•In practice, these divergences make no difference; practices are not standardised, but they are harmonised, a primary motivation being to facilitate tissue sharing within the UK.
•BBs in both jurisdictions are members of, and work to standards agreed by, the MRC Brain Banks Network, which formulates common policies and procedures so as to ensure high standards of operation. Its Codes, combined with actor practices, produce a governance framework that exceeds hard law: statutory provisions around consent/authorisation are very specific, placing decisional power with donors. However, practice more closely follows guidelines and the practicalities of promoting respect and harmony between doctor/nurse and patient/family. Thus, whilst legislation offers no veto for relatives of a deceased who has consented/authorised to the use of his/her brain/tissue, the Code urges caution, stating that the impact of going ahead in light of familial opposition should be considered (and BBers never proceed in the face of family discord).
•BBs must obtain approvals from NHS Research & Development and relevant Research Ethics Committees. REC oversight tends to focus on issues of consent/authorisation, compliance of use with originally claimed/anticipated purposes, and third party access, which is also addressed by the Acts. While BBers cannot monitor how (foreign) researchers handle tissue or data provided from UK BBs, BBers come to know regular users and their practices/legislation.
There are ELSIs relevant to BBing that reflect those in other forms of banking (eg: procurement, storage, access, unknown purpose), but there appears to be little dialogue between such banks.