The narrative paradox of the BRCA gene: an ethnographic study in the clinical encounters of ovarian cancer patients

Abstract

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.

Keywords:

• BRCA genes
• suffering
• hope
• personalised medicine
• cancer

Acknowledgements

There are a number a people who made this ethnographic research and writing of this paper possible. First, I would like to extend my deepest gratitude to Sahra Gibbon, my dissertation supervisor and Chief Investigator. I would also like to express my sincerest thanks to both Anne Lanceley, the Project Investigator, and Belinda Rahman PhD and co-supervisor, for this research opportunity and ongoing support. I would like to thank Nina Hallowell for your insightful comments during the writing of this paper. To all patients and oncologists who participated in this ethnographic project - thank you for your time, acceptance, expertise and openness.

Ethical approval

This research was given ethical approval by NHS Research Ethics Committee (REC) in the UK.

In accordance with Taylor & Francis and my ethical obligation as a researcher, I am reporting that I have no conflict of interest.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1. This type of cancer comprises over seventy percent of all epithelial ovarian cancers. This histology type is associated with BRCA mutations.

2. PARP inhibitors act by blocking the DNA repair activity of the PARP enzyme, on which cancer cells are dependent. When PARP activity is suppressed, cancer cells become sensitive to PARP chemotherapeutic drugs and cancer cell death occurs.