Image: ‘Uncertainty’ by Natalia Medd https://flic.kr/p/QS9n4a
There is a lot of hope that genomics will transform the way cancer is diagnosed and treated, by giving patients access to more precise information about their particular type of cancer and offering tailored, more effective treatments. A range of clinical trials and research studies are being pursued to try to bring these benefits to more patients, and NHS England have recently announced a flagship National Genomic Medicine Service.
As part of our research on how genomics is experienced by cancer patients and practitioners, we have interviewed a range of doctors, scientists and nurses who are part of these kinds of initiatives to understand how they manage the competing demands of research and care. We’ve been doing our research at a time with the NHS is widely considered to be under pressure because of a combination of growing demand and under-investment. We have seen the effects of these pressures in our research where we have observed and interviewed staff who are managing busy workloads and staffing shortages at the same time as they endeavour to support research and give their patients the best options for care.
Medical sociologists have written about how medicine is not an exact science and part of the work of being a doctor or a nurse is coping with uncertainties and managing patients’ expectations. We are interested in what happens in the case of genomics –
– does genomics bring uncertainties as well as the kinds of precision and tailoring that is part of its promise?
-how do practitioners manage those uncertainties?
-what kinds of additional work does this bring, behind the scenes as they make sense of results, and in their clinical encounters with patients and families?
We’ve written about some of our findings in a paper that’s been published recently. This is based on interviews with 25 practitioners involved with molecular cancer research and diagnosis/treatments for cancer patients.
In this research we found that, although all of our interviewees were enthusiastic about the promise of genomic medicine for cancer, they were also faced with a range of dilemmas and challenges in making it work. Three main issues arose:
1. Practitioners were cautious about interpreting the results of genomic profiling and prescribing tailored treatments for cancer because of their professional ethos of modest, persistent inquiry. They had learned in the course of their careers to be cautious about the ‘latest big thing’ in cancer, and were very careful about over-interpreting data, especially since genomics has revealed further layers of complexity in cancer. As one oncologist put it: “whilst some of it is close to prime time some of it is actually quite exploratory. But … there’s a danger of selling people a dream that won’t be a reality for them.”
2. Our interviewees were also uncertain about the effects of genomics on their role in the institution as services were being re-organised. Some professionals, like pathologists and geneticists, were concerned that their expertise might be side-lined as the analysis of results became centralised or ‘black-boxed’. These practitioners were trying to ensure that due attention was given to the ‘grey areas’ of genomic results. They spoke about the need for people doing genomic testing to understand the specifics of the patient case to be able to properly interpret the results.
3. We also found that practitioners were very concerned about how to explain complex genomic results to patients. They did not want to ‘saturate’ or ‘frighten’ patients with too much detailed information at a stressful time. Some interviewees were also concerned that knowing in advance that particular treatments were less likely to work was not always a good thing, because there was a sense that it was better to try anyway. Managing disappointments involved additional work for practitioners, as one nurse described: “ one of the things we’re having to talk about … is we will understand some of the information we get and we don’t understand some of the other information we get. … I think a lot of our talk now is about how this is going to enhance care, but what about the people who get no useful information back, or the testing fails?”
Our findings show how genomics does not simply resolve uncertainties in cancer medicine, but brings new uncertainties that have to be managed in practice. The high expectations placed on genomics have to be moderated by practitioners handling the day-to-day challenges of care and treatment in what is still an experimental area of medicine. Genomics can also bring unwelcome certainties, for example that hoped for treatments will not be effective, that have to be carefully handled. Through further dialogue with professionals we will be exploring how best to support these kinds of ‘uncertainty work’ as genomics takes on a greater role in cancer care.