A Sociology of Medical Innovation: Deep brain stimulation and the treatment of children with dystonia Abstract Objective The research site To explore the day-to-day social, ethical, and clinical challenges The research site is a paediatric ward in a large hospital within the This doctoral research encountered by a specialist interdisciplinary medical team using UK. Here, an interdisciplinary medical team treats children with project explores the day-to- deep brain stimulation to manage dystonia in children. severe neuromuscular conditions such as dystonia. DBS is one of day challenges faced by a the treatments they offer. The youngest patient this team has treated with DBS was four years old. specialist medical team Background using deep brain The team is made up of health professionals from a range of stimulation (DBS) to treat What is deep brain stimulation (DBS)? backgrounds. It consists of: children with severe DBS involves using constant electrical stimulation to reduce the • Two neurologists dystonia. effects of pathological neural activity. DBS is currently being used • A psychologist to treat Parkinson’s disease, essential tremor, dystonia, obsessive • A specialist nurse compulsive disorder and major depression. • A physiotherapist The application of DBS • An occupational therapist poses significant Surgically implanted electrodes deliver electrical stimulation to a • A speech and language therapist challenges to clinicians, specific region of the brain. These electrodes are connected to a patients and policy makers. pulse generator (very similar to a cardiac pacemaker), implanted in Other health professionals work extensively with this team and will the upper chest. also be included in this project. These include neurosurgeons, While in most cases DBS is radiographers and administrative staff. effective, clinical outcomes can vary significantly between patients. The rate Why is DBS sociologically interesting? of adverse reactions is DBS provides an opportunity to explore how technologies are both unknown, and in some shaped by, and influence, the social world. patients DBS has induced New technologies and therapies such as DBS can influence how significant changes in mood individuals perceive their body and their sense of self, and can and personality. It is not known exactly how DBS works, but it is thought that alter how they express agency. constant electrical stimulation can mask the pathological neural activity that causes various neuromuscular and neuropsychiatric For example, some commentators have argued that patients This project uses qualitative disorders. undergoing DBS experience changes in mood and personality. methods to explore how This raises some interesting questions: such issues are dealt-with What is dystonia? • How do clinicians detect and define a “change in personality”? • How do clinicians manage patients whose personality has in-practice by health Dystonia is a neuromuscular condition. Pathological neural activity changed? professionals. Fieldwork will causes muscles to contract violently or become rigid and stiff. • How do you determine whether a child’s personality has commence in February changed? Generalised dystonia usually begins in childhood, beginning in the 2012: medical team lower limbs before spreading to other parts of the body. DBS, like many new medical therapies, has also become subject to members will be interviewed, media hype and speculation. Patients can also have unrealistic and observations will be Large muscle groups are affected, often those in the legs and back. expectations of the therapy, and this can hinder the obtaining of undertaken of team This can be painful and crippling for patients. informed consent. This also raises some interesting questions for the sociologist: meetings and consultations While medications can provide relief for many patients, some • How are the expectations of patients managed in-practice? with patients. require surgical intervention. Recently deep brain stimulation is • How do clinicians obtain informed consent from young patients being offered to those with dystonia in a few specialist centres in and their parents when there is a great deal of uncertainly North America, Europe and the UK. surrounding the therapy? Contact • How do clinicians communicate this uncertainty to patients Methodology New technologies also prompt the formation of novel social groups. Ethicists, for instance, have argued that DBS patients should be An in-depth qualitative study of a specific medical offering DBS assessed and managed by specialist interdisciplinary medical therapy to children will be undertaken. This approach will enable teams. Again, this raises some interesting questions: an exploration of the complexity of the team’s day-to-day activities, • How do individuals from different disciplinary backgrounds work and how team members make sense of their work. together? • How are courses of action decided upon within an Specifically, the following methods will be used: interdisciplinary setting? John Gardner, PhD Candidate • How does this interdisciplinary approach affect the experience of Department of Sociology 1. Semi-structured interviews with members of the medical team patients? Brunel University London and associated health professionals. These will be used to • How well-suited are current policy and NHS structures to catering firstname.lastname@example.org draw out their own perspectives on using DBS to treat children. for such interdisciplinary teams? 2. Observations of routine meetings of the medical team. These are some of the questions that are addressed in this project. CBAS Observations will provide a means to explore how By addressing these issues, this project will shed light on the interdisciplinary collaboration and decision-making take place. relationship between technological innovation and wider social change. 3. Observations of routine consultations involving health Centre for Biomedicine professionals, young patients, and patients’ caregivers. These and Society observations will provide a means of witnessing the day-to-day Key references ‘messiness’ of working with DBS therapy and with young patients and their caregivers. Bell, E., Mathieu, G., & Racine, E. (2009). Preparing the ethical future of deep brain stimulation. [doi: 10.1016/j.surneu.2009.03.029]. Surgical Neurology, 72(6), 577-586. Gilbert, & Ovadia, D. (2011). Deep brain stimulation in the media: over-optimistic portrayals call for a new strategy involving journalists and scientists in ethical debates. [Perspective]. Frontiers in Integrative Neuroscience, 5. Gisquet, E. (2008). Cerebral implants and Parkinson's disease: A unique form of biographical disruption? [doi: 10.1016/j.socscimed.2008.09.026]. Social Science & Medicine, 67(11), 1847-1851. Glannon, W. (2009). Stimulating brains, altering minds. Journal of Medical Ethics, 35(5), 289-292. Mol, A. (2002). The body multiple: ontology in medical practice: Duke University Press. Morrison, D. R., & Bliton, M. J. (2011). Exploring Layers of Meaning with Deep Brain Stimulation Patients. [doi: 10.1080/21507740.2010.539995]. AJOB Neuroscience, 2(1), 26-28. Rabinow, P. (2008). Artificiality and Enlightenment: From Sociobiology to Biosociality Anthropologies of Modernity (pp. 179-193): Blackwell Publishing Ltd.
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