The morality of breast cancer research

Several of those I met, discussed how working in this particular area of basic science had a particular moral 'value' compared to other areas of research. This was linked, in part, to the public profile of cancer research, particularly breast cancer research, which conferred a certain significance to the science they studied Gillian I didn't select it because it was breast cancer, I didn't choose it but I am glad I did as it is good to know you are doing something to help everyday. It has...

Developing lay expertise and advocacy

But there was also another attempt at this time to articulate and form an ethical space in relation to the genetic research undertaken by the charity. The 'supporter advocacy project', as it was first known, was initially a research project to investigate the possibility of incorporating fundraisers more directly in the organisation and the work that it did through the developments of what has been called 'lay expertise'. It has been suggested that inclusionary initiatives have become a key...

The instability of containment contingent knowledge and technology

The diverse strategies for undertaking the triage of patients outlined in this chapter, whether in efforts to enrol appropriate patients or discharge those considered at low risk, were however not always containable. That is, the narrative explanations and the tools that secure the authority of current or future predictive practices can be de-stabilised at the clinical interface, in ways that clinicians do not always intend. As Margaret Lock points out, extensive work in anthropology has...

The morality of health awareness

The value of health awareness as a preventative strategy has become especially salient in relation to breast cancer over the last 15 years in Euro-American societies. Targeting women in particular, much has been made of the need to identify the disease in its early stages by encouraging individual women to be aware of their breasts or to attend routine mammography screening (Lantz and Booth 1998 Lerner 2001). It is an agenda that is informed by a burgeoning growth in health activism around...

The Alchemy of Loss and Hope Fundraising as Memorialisation

Recent expansion and developments in the bio-sciences have been accompanied by the growth of a diverse and fairly heterogeneous range of 'patient organisations', who increasingly have some sort of stake in the direction and outcome of different arenas of scientific or medical research (Epstein 1996, 2007 Brown etal. 2004). Such developments are also now reflected in the field of genetics (Rabeharisoa and Callon 1998 Rabinow 1999 Stockdale 1999). While many emphasis the novelty of these new...

Diviners and Pastoral Keepers Working in Clinical Breast Cancer Genetics

The ubiquity of a 'lay professional' distinction in much medical sociology and anthropology has often produced a somewhat reified analysis of the relationship between doctors and patients, contributing to a description and perception of medicine as unified or monolithic (Mol and Berg 1998). Although this distinction has been useful in highlighting how patients' 'experience' of new technologies and knowledge is constituted within their 'lifeworld', constant recourse to this difference has also...

The Enrolment of Patients Visibility Voice and Breast Cancer Activism

This book starts by considering a group of persons who have traditionally been situated at the centre of analysis in medical anthropology, where attending to the embodied or narrative experience of a patient's illness normally takes centre stage (Good 1993). However, as Landzelius and Dumit point out, the figure of the patient is currently 'undergoing an accelerated process of change' (2006). Responding to their calls for further 'scrutiny' and 'problematisation' of the very concept of...

Geneticisation and the social impact of the new genetics

Questions of 'impact' have been central to the ways in which social science has begun to address developments in genetic knowledge and technology. However, this work has been somewhat narrowly defined Kaufert 2000 . On the one hand, there has been a tendency to examine the psychological or social consequences of technologies, such as genetic testing, for the relatively small numbers of persons undergoing these procedures.3 At the same time attempts to broaden the field of analysis have tended...