The narrative paradox of the BRCA gene

An Ethnographic Study in the Clinical Encounters of Ovarian Cancer Patients

Bibliographic Data

ID7640769
AuthorsClara Therond (0000-0002-3613-9210, University College London, Anthropology, London, UK;, corresponding author), Anne Lanceley (0000-0001-9143-9710, Department of Women’s Cancer, University College London, Elizabeth Garrett Anderson Institute for Women’s Health, London, UK), Sahra Gibbons (0000-0002-5185-9750, University College London, Anthropology, London, UK;), Belinda Rahman (0000-0002-6674-7081, Gynaecological Cancer Unit, University College London Hospital NHS Foundation Trust, London, UK)
Year2020
Volume27
Issue4
Pages449-464
Publication date2020-10-01
Peer ReviewedYes
Open AccessNo
TypeARTICLE
VenueAnthropology and Medicine (JOURNAL)
Journal identifiersISSN: 1364-8470 • E-ISSN: 1469-2910
PublisherInforma UK Limited (PUBLISHER • GB)
DOI10.1080/13648470.2019.1663784
PMID32009452
OpenAlexW3004083805
LanguageEN
Citations received7
References cited18

In this era of personalisation a patient's molecular profile plays an increasingly central role in development and delivery of personalised medicine. This paper sets out to explore the sociocultural implications of mainstreaming BRCA genetic testing in the treatment of advanced ovarian cancer patients, who carry a BRCA1 or BRCA2 gene mutation. It draws on ethnographic research conducted by between April-June 2016 in a large tertiary London hospital. Participant observation was conducted across two sites. For the first two weeks participant observation was conducted in the traditional genetic testing setting in two separate clinics. From thereon, participant observation was conducted in the clinical encounters of treating patients in the ovarian cancer clinic. In addition, face-to-face interviews were conducted with medical oncologists who worked in the clinic. Contributing to the fields of cancer genetics, personalised medicine and medical material culture studies in medical anthropology the paper seeks to further discussions about the interactions and relationships unfolding between medical objects and subjects across the landscape of cancer care. It highlights the importance of clinic-based ethnography to examine the complexities of identities and technologies as they intersect with the themes of suffering and hope in new and contradictory ways for BRCA-positive patients with late-stage disease. The paper argues that a BRCA mutation is not only central to the political economy of hope but takes on a more materialist nature as it becomes an embodied practice that moves in and beyond the clinic

Ethnography · Family medicine · Medical anthropology · Narrative · Participant observation · Pathology · Sociocultural evolution · Sociology · Anthropology · Biomedical Ethics and Regulation · CRISPR and Genetic Engineering · Medicine · Neuroethics, Human Enhancement, Biomedical Innovations

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