BRCA Patients and Clinical Collectives

Abstract

Since the late 1980s, in France and in a number of other countries, cancer genetics testing has become a clinical reality, particularly for hereditary breast and ovarian cancer. BRCA tests allowing for the assessment of an increased cancer risk among patients and their healthy relatives are now being routinely performed as part of clinical practice. Based on fieldwork on French clinical cancer genetics and on the French Cancer Genetics Collaborative Network, this paper examines the configuration of entities, actors and activities mobilized by the performance of BRAC testing, and argues that the development of clinical molecular genetic practices is predicated upon the development of new forms of collaborative work that lead to a transformation of the content and organization of medical activities and judgements. The paper analyses three major collective configurations - local multidisciplinary collectives, data collectives and new clinical collectives - and argues that they not only provide the material conditions needed to carry out the relevant activities, but also articulate a series of distinctive bio-clinical interventions. These interventions provide an interface with research activities, produce the epidemiological measurements and tools that are a sine qua non for clinical work in this field, and, most importantly, establish the conventions that underlie practices, which define the criteria that turn tools and novel entities into operational components of clinical settings. It thus appears that in the field of clinical cancer genetics, bioclinical collectives, as a locus of expertise, have replaced the individual judgement of the practicing clinician.

Reframing translational research as transactional research:

“…More recent research has focussed on the socio-technical, regulatory and ethical practices of working across research and clinic (e.g. Moreira, May, and Bond 2009;Michael, Wainwright, and Williams 2007) and has established a new understanding of scientific research and clinical work as performed and intersecting within biomedical collectives (Bourret, 2005;Keating and Cambrosio, 2012). This work has served to disrupt the notion of research and clinic as two separate domains and to shift focus to how these very categories are contingent and relational.…”

“…Here, the relations to and around patients were cared for in order to ensure patients and patient data for research purposes. (Bourret, 2005;Keating and Cambrosio, 2012). Another interesting path for further inquiry is the very definition of translational research (Rushforth, 2016) (Rushforth et al, 2016).…”

Transgenerational epigenetic inheritance and social responsibility: perspectives from the social sciences

“…Other studies have been exploring what it might mean socially and politically if new forms of at-risk status are generated by genetic testing technologies: Which new forms of being affected as individuals, families and groups are being created through the availability of genetic tests? Are individuals empowered or imperilled by these new types of risk information [ 52 , 53 ]? Still others investigate how genetic types of health information contribute to the formations of new norms of what counts as rational and responsible behaviour with regard to health risks, disease prevention and care for the self, family and society [ 54 , 55 ].…”

Introduction

“…The rapid expansion of the field of BRCA medicine has, not surprisingly, been an area of interest for social scientists, with studies examining patients’ perceptions of risk and questions of identity for those caught up with this novel field of health care (Finkler 2000 ; Gibbon 2007 ; Gibbon et al 2010 ; Gibbon et al In press ; Hallowell 1999 ). Others have turned attention to the institutional cultures and practices that surround the application of this novel medical intervention, often linked to the specificities of public health in different cultural contexts (Bourret 2005 ; Löwy and Gaudillière 2009; Parthasarathy 2007 ) but also often associated with cultures of activism (Gibbon 2008 ) or religious and community organization (Kampriani 2009 ). A growing body of work is also exploring the meaning of BRCA medicine for specific populations, including underserved groups in the United States and Ashkenazi Jewish women (Mozersky 2012 ; Mozersky and Galen 2010 ).…”