On the 7th July 2015, a colleague (Gwen Jacques) and I attended the Wellcome Trust Humanities and Social Science Early Career Day. This event brought together those working on Wellcome Trust funded projects, with the aim of developing the support and opportunities offered to its early career scholars. Those in attendance included PhD students, Research Assistants and Research Fellows, involved with a diverse range of projects. Representatives from the Wellcome Trust outlined the many schemes and sources of funding available to its scholars in Humanities and Social Sciences. These encourage involvement in public engagement work, or in policy formation. The event gave Gwen and I some inspiring ideas for our work on cancer patienthood in the post-genomic era. It also underscored the importance of the Humanities and Social Sciences to the charity’s mission.
The day started with a presentation from Dan O’Connor, Head of Humanities and Social Sciences at the Wellcome Trust. He shared an anecdote from a recent visit to the World Health Organisation in Geneva. Witnessing a discussion of the Ebola epidemic in West Africa, and the search for a treatment, Dan O’Connor related an incident whereby two eminent clinicians described ‘gold standard’ randomised controlled trials (RCTs) as the only means by which an effective treatment could be developed. RCTs are often considered to be the most rigorous method of determining the effects of a treatment. They involve the random allocation of individuals to a new treatment, or the ‘standard package of care’, with both patients and researchers unaware of which group has received which intervention.
A representative from Médecins Sans Frontières, however, working with communities affected by the virus, exasperatedly described how removed the concept of the ‘gold standard’ RCT was from the reality of what was happening to people “on the ground”. Indeed, the conditions within which the epidemic was situated have been widely reported by the media – a ‘standard package of care’ entailed healthcare professionals who were overworked and had received insufficient training, as well as poor medical equipment and facilities. As well as poverty, some culturally specific practices within these regions would also challenge attempts to conduct the RCTs heralded by some clinical researchers, as well as other efforts to tackle the virus. Anthropologists in the region have made these explicit, thanks to their understanding of traditional beliefs and practices. For example, longstanding rituals enacted by these communities following a death, including close contact with and preparation of the body, have been linked to the fast spread of the disease in these areas (Fassassi, 2014). A distrust of healthcare workers, either due to an understanding of hospitalisation as causing sickness, or due to anxieties that overseas volunteers would cause them harm (which some scholars associate with the history of colonialism in Africa), has also shaped the treatment provided to communities (see also Yahya, 2007). These potential barriers to Ebola prevention and treatment have can only be recognised through attention to the socio-cultural milieus in which the virus occurs. Understanding these, and thus working with traditional beliefs and practices, for example by encouraging the adaptation of burial rituals to reduce physical contact with the deceased (Fassassi, 2014), demonstrates the powerful role that a perspective from the humanities and social sciences can play in disease prevention.
Dan O’Connor thus emphasised the importance of the Humanities and Social Sciences in ‘bridging the gap’ between clinical research, with its focus on the physiology of the body and the molecular effects of illness and treatments, and the social and historical contexts in which these operate. As we can see from the example of Ebola, whilst ground-breaking biomedical research is constantly increasing our understanding of illness, and moving towards better prevention, more effective treatments and cures, it is important to acknowledge not only the biological mechanisms of diseases, but the people and relationships in which they are located.
This forms a foundation for our research on the Wellcome Trust project ‘Translations and Transformations in Patienthood: Cancer in the Post-genomic Era’. The project will explicitly consider how the experience of illness, availability of treatments and engagement with healthcare, must all be examined within their wider context. For example, it is only through exploring experiences of stigma and blame associated with lung cancer in the UK, that can we understand why some individuals may attempt to hide this disease from others, or delay seeking medical help (Chapple et al., 2004). In terms of hereditary cancer risk, family histories, and individuals’ concerns regarding the potential disruption to family dynamics, must be taken into account when considering decisions to accept or decline genetic tests for BRCA mutations (Hesse-Biber, 2014). In addition, our research will consider whether and how cancer is experienced differently among those from varying socioeconomic backgrounds, and the role of patient groups in defining and supporting cancer research.
Recognising how cancer is socially shaped, both in terms of patient experience and clinical efforts to tackle the disease, is an important aspect of this project. It is anticipated that through our work, assumptions regarding what it means to be a patient, and indeed the very notion of ‘patienthood’ will be challenged, inequalities exposed, and that barriers to seeking testing and treatment will be better understood. It is hoped this will contribute to improved care for patients and their families, including those designated as ‘at-risk’ through the diverse interventions propelled by genomics.
Chapple, A., Ziebland, S. & McPherson, A. (2004) Stigma, shame, and blame experienced by patients with lung cancer: qualitative study. British Medical Journal, 328(7454), pp. 83-85.
Fassassi, A. 2014. How anthropologists help medics fight Ebola in Guinea. Sci Dev Net [Online]. Available from: http://www.scidev.net/global/cooperation/feature/anthropologists-medics-ebola-guinea.html [Accessed 8th July 2015].
Hesse-Biber, S. N. (2014) Waiting for Cancer to Come: Women’s Experiences with Genetic Testing and Medical Decision Making for Breast and Ovarian Cancer, Ann Arbor, University of Michigan Press.
Yahya, M. (2007) Polio vaccines—“no thank you!” barriers to polio eradication in Northern Nigeria. African Affairs, 106(423), pp. 185-204.
The Lancet: ethics of randomised controlled trials in context of Ebola
Guardian: poverty as fuelling the Ebola epidemic