1. A Sociology of Medical Innovation: Deep brain stimulation and the treatment of children with dystonia Centre for Biomedicine and Society Abstract This doctoral research project explores the day-to- day challenges faced by a specialist medical team using deep brain stimulation (DBS) to treat children with severe dystonia. The application of DBS poses significant challenges to clinicians, patients and policy makers. While in most cases DBS is effective, clinical outcomes can vary significantly between patients. The rate of adverse reactions is unknown, and in some patients DBS has induced significant changes in mood and personality. This project uses qualitative methods to explore how such issues are dealt-with in-practice by health professionals. Fieldwork will commence in February 2012: medical team members will be interviewed, and observations will be undertaken of team meetings and consultations with patients. Contact John Gardner, PhD Candidate Department of Sociology Brunel University London john.gardner@brunel.ac.uk Objective To explore the day-to-day social, ethical, and clinical challenges encountered by a specialist interdisciplinary medical team using deep brain stimulation to manage dystonia in children. Background What is deep brain stimulation (DBS)? DBS involves using constant electrical stimulation to reduce the effects of pathological neural activity. DBS is currently being used to treat Parkinson’s disease, essential tremor, dystonia, obsessive compulsive disorder and major depression. Surgically implanted electrodes deliver electrical stimulation to a specific region of the brain. These electrodes are connected to a pulse generator (very similar to a cardiac pacemaker), implanted in the upper chest. It is not known exactly how DBS works, but it is thought that constant electrical stimulation can mask the pathological neural activity that causes various neuromuscular and neuropsychiatric disorders. What is dystonia? Dystonia is a neuromuscular condition. Pathological neural activity causes muscles to contract violently or become rigid and stiff. Generalised dystonia usually begins in childhood, beginning in the lower limbs before spreading to other parts of the body. Large muscle groups are affected, often those in the legs and back. This can be painful and crippling for patients. While medications can provide relief for many patients, some require surgical intervention. Recently deep brain stimulation is being offered to those with dystonia in a few specialist centres in North America, Europe and the UK. Methodology An in-depth qualitative study of a specific medical offering DBS therapy to children will be undertaken. This approach will enable an exploration of the complexity of the team’s day-to-day activities, and how team members make sense of their work. Specifically, the following methods will be used: 1.Semi-structured interviews with members of the medical team and associated health professionals. These will be used to draw out their own perspectives on using DBS to treat children. 2.Observations of routine meetings of the medical team. Observations will provide a means to explore how interdisciplinary collaboration and decision-making take place. 3.Observations of routine consultations involving health professionals, young patients, and patients’ caregivers. These observations will provide a means of witnessing the day-to-day ‘messiness’ of working with DBS therapy and with young patients and their caregivers. The research site The research site is a paediatric ward in a large hospital within the UK. Here, an interdisciplinary medical team treats children with severe neuromuscular conditions such as dystonia. DBS is one of the treatments they offer. The youngest patient this team has treated with DBS was four years old. The team is made up of health professionals from a range of backgrounds. It consists of: Two neurologists A psychologist A specialist nurse A physiotherapist An occupational therapist A speech and language therapist Other health professionals work extensively with this team and will also be included in this project. These include neurosurgeons, radiographers and administrative staff. Why is DBS sociologically interesting? DBS provides an opportunity to explore how technologies are both shaped by, and influence, the social world. New technologies and therapies such as DBS can influence how individuals perceive their body and their sense of self, and can alter how they express agency. For example, some commentators have argued that patients undergoing DBS experience changes in mood and personality. This raises some interesting questions: How do clinicians detect and define a “change in personality”? How do clinicians manage patients whose personality has changed? How do you determine whether a child’s personality has changed? DBS, like many new medical therapies, has also become subject to media hype and speculation. Patients can also have unrealistic expectations of the therapy, and this can hinder the obtaining of informed consent. This also raises some interesting questions for the sociologist: How are the expectations of patients managed in-practice? How do clinicians obtain informed consent from young patients and their parents when there is a great deal of uncertainly surrounding the therapy? How do clinicians communicate this uncertainty to patients New technologies also prompt the formation of novel social groups. Ethicists, for instance, have argued that DBS patients should be assessed and managed by specialist interdisciplinary medical teams. Again, this raises some interesting questions: How do individuals from different disciplinary backgrounds work together? How are courses of action decided upon within an interdisciplinary setting? How does this interdisciplinary approach affect the experience of patients? How well-suited are current policy and NHS structures to catering for such interdisciplinary teams? These are some of the questions that are addressed in this project. By addressing these issues, this project will shed light on the relationship between technological innovation and wider social change. Key references 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. CBAS