An ethnographic perspective on the use of genetics in cancer care
Research type
Research Study
Full title
The development of personalised molecular therapeutics: A comparative ethnographic perspective on the use of genetic testing in ovarian cancer and colorectal clinics
IRAS ID
265756
Contact name
Sahra Gibbon
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
No Z6364106/2019/11/86, UCL Data Protection Reference
Duration of Study in the UK
3 years, 0 months, 22 days
Research summary
This is a comparative ethnographic study, which will be conducted in the gynaecology cancer Department and the colorectal cancer Department at University College Hospital. This study is part of a Co-funded doctoral project, that will be using analytical methods from anthropology and other disciplines to examine the sociocultural and ethical implications of the use of genetic testing technologies in the treatment of patients with advanced disease in the NHS. The aim of the study is to understand how as the NHS aims to deliver personalised medicine to cancer patients(1) the use of genetic testing technologies and genetic knowledge impact upon the experience of patients being treated for late-stage disease, (2) the use of genetic technologies impact clinical judgement and experiences of health professionals using and delivering these technologies and (3) how breakthroughs in personalised molecular technologies bring new socio-political and ethical challenges into the clinic and beyond. The study aims to generate important empirical qualitative data, which contributes to local, national and international discussions about how genetic technologies not only facilitate the delivery of personalised medicine across cancer care pathways but raise new challenges. Up to thirty observations will be conducted in the consultations between oncologists and patients in both the ovarian cancer clinic and the colorectal clinic. Observations of the consultations will be followed up with face-to-face, one-on-one interviews with up to three oncologists working in each clinic, and up to three other health care professionals, such as clinical nurse specialists who are caring for patients recruited onto the study in each clinic and 3 pharmaceutical employees working on personalised oncology therapeutics. One-to-one face-to-face interviews will be conducted with up to thirty patients (up to 15 in each clinic) being offered genetic testing and or being treated with personalised molecular technologies.
Summary of Results
Study aims As the development and delivery of personalised medicine gathers pace the aim of this study was to find out about its socio-cultural impact across treatment landscapes of late-stage cancer care, and specifically on different NHS patients experience of receiving and health care professionals delivering this form of care. This study was set within the ovarian cancer and colorectal cancer treatment setting.
Main study findings
The changing nature of the care pathway
1. The study found that in late-stage ovarian cancer and colorectal cancer treatment settings personalised medicine care pathways are far more than simply an objective clinical practice with various treatment branches, steps, and stages. Rather, patient and health care professional narratives revealed how pathways were increasingly complex spaces, which foster new kinds of social relations, ethical practice, and ways to sustain hope.
2. In relation to hope, the study found that hope is no longer simply a feeling to sustain but a practice attached to personalised medicine technologies, techniques and social relations unfolding across the depths and scales of these pathways.
Hope, personalised medicine, and its effect on patienthood
3. Importantly, the study found interconnections between hope in personalised medicine and transformations to patienthood. For example, a number of patients described how hope in personalised medicine evoked profound feelings of gratitude to be part of this unfolding form of care. Many patients also spoke about and strengthened hope through feelings of trust in, dependency on and a sense of belonging to care teams at the frontiers of personalised medicine development and delivery.
4. Some but not all patients’ stories revealed how hope was sustained by belonging to online biosocial networks, created around and specifically focused on personalised medicine therapeutics. The study also highlighted how belonging to patient communities formed around hope in personalised medicine helped (some) patients navigate uncertainty about these novel therapeutics. A number of patients stories revealed how hope in personalised medicine heightened desires to monitor (self) care practices and processes within and beyond clinical encounters.
5. In addition, patients increasingly empowered hope by asking clinicians questions about treatment progress, at times questioning choices, as well as enacting novel kinds of ethical practice as they called out the rights or wrongs of past and/or present care.
6. Another study finding demonstrated the way (some) colorectal cancer patients nurtured a heightened sense of hope in immunotherapy by contrasting that present lived experience with their perceptions and /or memories of past chemotherapy treatment.
Socio-cultural implications of (BRCA) stratification practices
7. One key study finding concerned the strengths and weaknesses of BRCA cancer risk stratification and its effect on ovarian cancer patients’ felt experience of care. In essence, the finding demonstrated how the protocol for determining patient access to NHS germline testing for the BRCA genes (prior to an ovarian cancer diagnosis) shapes and effects patients’ feelings of trust, sense of belonging and being cared for, in this evolving era of personalised medicine.
Hope in personalised medicine: its shadow side
8. Whilst, within these cultures of oncology, hope in personalised medicine was clear, study findings demonstrate that the risk associated with germline genes does not translate smoothly into hope, for patients on personalised medicine pathways. Rather, hope was shown to be closely tethered to a range of other complex feelings, sentiments, ideas, and emotions, such as anguish, uncertainty, and harm in relation to a germline genetic mutations potential to run through a patients present and future family generations.
The consequences of germline mutations for patients
9. Indeed, a recurring study theme was the psychological, physical, and emotional impact germline mutations had on patients and their wider family networks. Equally, some patients described how uncovering hereditary cancer risk evoked a desire to overcome secrecy, silence and stigma attached to conversations about cancer within the intimate frames of family life.
Understanding how patients live with different kinds of trauma
10. In addition to complexities surrounding hope in personalised medicine the study also found that the nature of trauma is changing. Specifically, patients’ stories highlighted how trauma manifested differently, not just between the bodies of different cancer patients but also within a patient’s body as their narratives revealed the effect of simultaneously living with cancer and that of a germline genetic identity.
11. Within the context of uncertainty and potential harm the study also revealed how germline mutations galvanised, within families, what the researcher called, a heightened ethic of intergenerational care as some patients described ways they tried to equip younger generations with awareness of hereditary cancer risk and greater choice about their future care.
How personalised medicine shapes subjective experiences of health care professionals
12. Although health care professionals clinical and emotional investment to deliver personalised medicine was clear, the study highlighted the challenges they face in terms of managing patients’ heightened expectation and hope in personalised medicine as well as its many uncertainties.
13. Indeed, a number of study findings highlighted that personalised medicine was an evolving practice and culture situated within wider oncology communities. For example, the study shone a spotlight on the way personalised medicine delivery was mobilised by and through socio-clinical relations of exchange between oncologists and pharmaceutical companies at the frontiers of personalised medicine development. Importantly, the study found that these upstream social relations cultivated longer-term socio-cultural implications downstream, as personalised medicine knowledge-making and delivery was made to travel within oncology communities.
The role of meso-level social relations in personalised medicine knowledge exchange
14. Specifically, the study found that downstream, at meso-level infrastructures of care, intersubjective relationships of trust, between oncologists at the centre and those at the margins of this form of care, act as a critical and valued medium through which personalised medicine knowledge is exchanged. Indeed, this finding suggests that evolving networks of socio-clinical relations not only bridge gaps between public/private domains of care and NHS research and mainstream practice but also between suffering, hope and expectation to deliver personalised medicine across cancer care.Has the registry been updated to include summary results?: No
If yes - please enter the URL to summary results:
If no – why not?: This non grant funded qualitative ethnographic study was not registered on a public registry. The study results will be shared with the public via publications in accordance with our dissemination plan.
Did you follow your dissemination plan submitted in the IRAS application form (Q A51)?: Pending
If yes, describe or provide URLs to disseminated materials:
If pending, date when dissemination is expected: 30/12/2024
If no, explain why you didn't follow it:
Have participants been informed of the results of the study?: Pending
If yes, describe and/or provide URLs to materials shared and how they were shared:
If pending, date when feedback is expected: 30/12/2024
If no, explain why they haven't:
Have you enabled sharing of study data with others?: No
If yes, describe or provide URLs to how it has been shared:
If no, explain why sharing hasn't been enabled: Data available on request because of privacy/ethical restrictions.
Have you enabled sharing of tissue samples and associated data with others?: No
If yes, describe or provide a URL:
If no, explain why: Tissue samples and associated data were not collected for this study.REC name
London - Stanmore Research Ethics Committee
REC reference
20/LO/0788
Date of REC Opinion
16 Jun 2020
REC opinion
Favourable Opinion