Research into moral implications of current developments in the definitions of disease.
“O knit me, that am crumbled dust!“
Concepts of Disease: Dysfunction, Responsibility and Sin
Aim of this research: to identify current developments in the definitions of disease and their moral implications. To enable researchers and healthcare workers to connect this to debates on how healthcare is, or should be, practiced and organised.
Publication: research from this project has been in a special issue of Theology in March 2018 which brought together insights from theology, healthcare and medical law.
The special issue is available here.
The notion of disease is formed at the borderline of the sciences and the humanities. It is crucial for what it means to be a patient, for the interpretation of pain and suffering, for how the sick and dying are cared for, and for how the healthcare system is organised. The way we understand disease—or indeed illness, understood as the patient perception of disease—defines the practical scope for medical research and intervention, but also the horizon of hope.
Philosophical, technological and social-political shifts in recent decades have not remained without effects on the understanding of disease both as a biomedical and a moral concept. The turn away from old-school, “priestly” medical paternalism towards autonomous, in parts libertarian notions of the individual has purportedly resulted in new freedoms, especially those which safeguard a place for patients’ own interpretations. At the same time, they seem to imply a new set of responsible authorities that define, administer and control disease. Technology, in particular new molecular, stratified and personalised medicines, have generated conceptual questions about how disease is both a matter of genetic risk, or even determinism, but also something one may be held responsible for. In terms of socio-political developments, the neoliberal modernisation of healthcare systems has impacted on the communal, social and political understandings of disease. It has begun to be understood as part of the tragic conditio humana, a self-inflicted state implying guilt, but also a “good” that large industries trade in.
How disease is related to the nexus of responsibility, sin, fault and guilt seems to have significant civic and political implications with respect to how patients, especially those thought to be irresponsible in some way, are regarded. The movement towards ‘responsibilisation’ in healthcare may stand in some tension with the more common view in welfarist polities that ill-health should be regarded, from a procedural prospective, as a matter of bad luck; and especially so since causal, environmental connections between disease and responsibility are so uncertain. This raises the broader question of what implications for the nature and role of compassion follow from how disease and sin are interrelated.
A conference in January 2017 explored the understanding of disease as an evolving concept of multi-disciplinary concern in medicine, the humanities—e.g. research in philosophy, the Hebrew Scriptures, the New Testament, Christian moral theology and Buddhist thought—and the social sciences. In particular, contributors investigated the moral responsibilities or failures that are implied by present and emerging notions of disease, but also the conceptual components of these notions. Is disease a biological and/or molecular dysfunction, a failure of will and responsibility, and/or sin? Conversely, how are these terms defined with regards to disease? How do they relate to each other? And how does the medical and/or moral understanding of disease impact on philosophical and theological, technological and legal negotiations? What are the endpoints of emerging developments in medicine implied by the understanding of disease? If identifiable, are these developments irreversible? How might any of these developments relate to the broader civic place of healthcare and the regard citizens have for each other?
Further questions of interest under this research theme include:
- How does the emphasis on increased patient autonomy, including versions of consumer-autonomy, influence both the concept of disease and moral responsibility?
- What implications for the societal meaning of healthcare can be gleaned both from synchronic and diachronic insights from theology, the philosophy of medicine, literature, possibly even music? What can these fields tell us about the connection between disease, sin and moral responsibility? Conversely, what are the heuristic, moral and legal limitations of these terms?
- What are the implications of developments in genomic and personalised medicine for the connection between disease, responsibility and sin?
- What are the implications of a ‘responsibilisation’ of healthcare for what should be meant by ‘compassion’ in healthcare?
- What can we learn about emerging moral conceptions of disease from particular diseases such as cancer, AIDS, epidemics, or psychiatric conditions?
- How do philosophies such as transhumanism or neuro-philosophy value or devalue disease?
We are grateful to the Sir Halley Stewart Trust for their support of this research.