In a recent article authored by our team in Leeds, we discuss accounts of genomic cancer research from the perspective of doctors, nurses and scientists. A key finding of this article is that expectations for genomic medicine play a key role in shaping the work of these health professionals, and the ways they communicate with patients.
Discussions of expectations for novel medical techniques, for example in the media or by policymakers, are often positive, filled with promise and optimism. This is no different for genomic medicine. The hoped-for benefits of genomic sequencing for cancer include tailoring treatments to individual patients and predicting disease, with the aim of “transforming” the way people are cared for in the NHS (Genomics England, 2018).
Social scientists have investigated the positive ways that genomic research is discussed, and argued that these expectations can both help and hinder its widespread adoption (Samuel and Farsides, 2017). We have found similar conflicts in our research. For example, we have heard doctors talk about positive expectations for genomic technologies, and a sense of inevitability that genomic information will become widespread in cancer care, despite their doubts about its usefulness when compared with existing techniques (Kerr et al, forthcoming). Without even being attained, imagined outcomes can therefore play a role in shaping medical practice.
The anthropologist Mary-Jo Delvecchio Good (2001) argues that emotion and imagination are important aspects of the way we relate to medicine and technology. She says that a ‘medical imaginary’ shapes our interactions with and understandings of medicine – in other words there is a great deal of interest, enthusiasm and investment in ideas and expectations for “medicine’s possibilities”. This makes medical work appealing to the media, policymakers and the public, but also means that it is emotionally charged, particularly with regards hope for what medicine and its technologies can achieve.
These issues are relevant to recent discussions around the use of genomic sequencing techniques to ‘combat’ coronavirus. The COVID-19 pandemic is affecting our lives in the UK and globally, as we adjust to working at home, home-schooling and virtual forms of interaction with friends and family. Adjustment will not be enough for those who are marginalised and most in need, for whom isolation and social distancing have made it difficult to access support, medical care and even food.
Researchers across the world are working hard to find out more about the COVID-19 virus, with some using genome sequencing technology to analyse samples from patients with the disease, tracking how the virus changes over time and monitoring its spread. The way this is reported in news stories and press releases often draws on powerful claims of the transformative potential of genomics, as we have also seen in our research on cancer (Kerr et al, forthcoming).
For example, in a piece discussing The COVID-19 Genomics UK Consortium, a Government-funded initiative performing genomic sequencing on COVID-19 samples, one report described the technology used as a “cutting-edge tool to combat the virus” which “will help clinical care of patients and save lives”. Another notes that genome sequencing “provides the highest possible resolution information about an organism’s genome, and has the potential to transform infectious disease management”, also claiming that this will help “prepare for the future” and ultimately save lives. Both reports also draw on the emotive language we have seen throughout our project on cancer, including metaphors of battle or war against the COVID-19 virus (see our blog post on this).
However, despite talk of the transformative potential of genome sequencing, at the end of the second report we also find a section on “challenges”, that touches on the vast arrangements of individuals, materials and practices required to make COVID-19 genome sequencing work. As well as adequate funding, this includes information about people’s movement whilst they have been infectious, which is also needed to understand the spread of the virus. Further, genome sequencing is dependent on good quality patient samples (the amount of genetic material obtained from nasal swabs, which can be uncomfortable for patients, varies greatly).
In such reports, emotive language and optimism can sometimes hide the complexity and large networks that lie behind ‘transformative’ medical techniques such as genome sequencing. It is often the case that novel and technoscientific developments are singularly presented as the ‘answer’ to a particular medical problem. As Delvecchio Good explains, such techniques are associated with salvation within the public imagination, and create feelings of hope that not only attract public attention, but also that of funders and investors. However, it is important not to lose sight of the fact that novel technologies do not operate in isolation, and need to work alongside more everyday tools, such as nasal swabs and those administering them, to address a global and complex issue like the COVID-19 pandemic.
As we near the end of our research project on cancer genomics and patient care, we have been struck by how, amongst the ‘pioneering’ clinical trials and sequencing techniques they are experiencing, what remains most important for patients is often their interactions with doctors and nurses. The day-to-day efforts made by doctors to have their test results ready on the same day, or by nurses to make their experiences of chemotherapy more comfortable, were just as valued, if not more so, than the ‘transformative’ potential of their treatment. In the midst of this pandemic, with doctors, nurses, paramedics and support staff risking their own health to care for others, it has never been more important for us to acknowledge the complex and demanding care work provided by those within the NHS.
Emily Ross, University of Edinburgh
Image credit: unsplash-logo
Genomics England (2018) ‘The 100,000 Genomes Project’, Genomics England. Accessed June 12, 2018. https://www.genomicsengland.co.uk/the-100000-genomes-project/
Delvecchio Good, M. (2001) ‘The biotechnical embrace’, Culture, medicine and psychiatry, 25, 395-410.
Kerr, A., Chekar, C. K., Ross, E., Swallow, J and Cunningham-Burley, S. (forthcoming) Personalising Cancer Medicine: Future Crafting in the Genomic Era. Manchester University Press.
Samuel, G. N. and Farsides, B. (2017) ‘The UK’s 100,000 Genomes Project: manifesting policymakers’ expectations’, New Genetics and Society, 36, 4:336– 353