Genomic medicine: Patients’, practitioners’ and family members’ hopes for the future


The “Cancer and Society in the 21st Century” research team presented four papers in three different national and international conferences over the summer. These conference papers drew on our initial findings from our interviews and observations conducted in Leeds and Edinburgh since last year. So far we have conducted over 140 interviews with former and current cancer patients, cancer scientists, health care professionals. We also have conducted over 40 observations of patient-oncologist consultations, consenting processes, and laboratory works.

We have been researching how patients, family members and health professionals engage with genomic medicine and its implications for cancer patients. One of the main questions we have been exploring is how finding out more about a type of cancer is related to patients’, relatives’ and practitioners’ hopes for the future.  To investigate this we have been looking at the kinds of thinking and caring work that is required to make sense of genomic information about cancer and its implications.

Tineke (University of Edinburgh) presented a paper at the British Sociological Association Medical Sociology Annual Conference (abstract can be found on page 84) on how ovarian cancer patients and their carers weigh up their situation in relation to the amount of research that is taking place into their and other kinds of cancers. Drawing on 14 interviews with patients and health professionals, Tineke explored how some of the patients who have been diagnosed with a rarer sub-type of ovarian cancer where there are currently less treatment options deal with this in part by being hopeful about the future of cancer research more generally, which can include taking part in promoting and advancing research for their type of cancer and cancer more generally.

Julia (University of Leeds) and Emily (University of Edinburgh) presented a paper at the European Sociological conference in Athens about patients’ experiences of a genomic test called Oncotype DX, which was approved for use within the UK NHS in 2013. The Oncotype DX test predicts risk of breast cancer coming back after initial treatment for some kinds of early-stage breast cancer, by analysing genomic changes within the tumour. Researching on-line discussions, Julia and Emily have found that that these test results provide reassurance but they also involve a lot of thinking work for women as they weigh up this new information, adjust their hopes for life beyond cancer and make choices around further monitoring and treatments. Julia and Emily received interesting questions from the audience, including how the experiences of their interviewees might compare to those who had other types of health tests, such as for high-cholesterol, or PSA testing for prostate cancer, and we will be exploring this over the coming months.



Looking more broadly, Anne (University of Leeds) also presented a paper at the Annual Meeting of the Society for Social Studies of Science (4S) in Boston, Massachusetts on how a range of cancer patients, their families and practitioners work with hope when they decide on participation in genomic medicine trials, what genomic tests to perform and how to interpret and share genomic results. Drawing on 23 interviews with patients in active trials/studies and patients living with and beyond cancer and family members who act as carers, Anne looked at how participants made choices and developed their understanding of these complicated situations by weighing up and optimising hope for positive outcomes for particular patients in the present and for the patients of the future.

We have also been researching the experiences and perspectives of a growing number of patients who act as a mediator between genomic researchers and cancer patients. Choon Key (University of Leeds) presented a paper at the BSA Medical Sociology Annual Conference (abstract can be found on page 89) on how patient representatives, or patient advocates, act as knowledge broker but also a kind of ‘hope broker’ through their advocacy work. This involves mediating and moderating some of the ‘hype’ of genomic medicine based on their experience as patients and through advocacy work. Choon Key looked at how these 13 advocates craft a balance between advocating for individual patients’ rights to access new tests and treatments, advocating for all patients to have equal access to new advances and prioritising quality of life with and beyond cancer.

As we move forward with our research we will be looking more closely at how patients, advocates, families and practitioners across our entire dataset work with hope to achieve their various goals, and thinking about what this means for how to improve the support offered to participants in genomic medicine research, diagnosis and treatment.