Originally posted on February 15, 2016 on the University of Leeds Centre for Health, Technologies and Social Practice blog.
In November 2015, my colleague Emma Doyle and I attended the Scottish Cancer Conference, hosted by Cancer Research UK. This one day event featured speakers from across the cancer community, and included presentations on cancer prevention, research participation and treatment.
Three issues of relevance to our Wellcome Trust project stood out for us following our attendance at this event:
Continued emphasis on ‘lifestyle factors’ as causes of cancer
Several of the presenters at this conference drew on the concept of ‘lifestyle factors’ (often referring to smoking, alcohol consumption, diet and exercise). In relation to this, a statistic often cited during the day was that ‘4 in 10 cancers can be prevented’. These discussions focused on successes in the realm of smoking cessation, and the need to translate this to alcohol consumption in Scotland (in a talk from Shona Robison MSP), and the role of primary care in this regard (discussed by Professor David Weller). These behaviours were framed during the day in terms of individual behaviour, and the status of this as amenable to prevention. Focus was given to ‘hard to reach groups’, and the successes achieved through targeted prevention activities.
However, though socioeconomic status was invoked as connected to patterns of these ‘preventable’ causes of cancer, such discussions often focused on the responsibility of the individual to change these behaviours, with support and guidance from health services. As we have discussed in a previous blog post, these discourses have the potential to imply blame for not avoiding particular cancer risks, or for not seeking support to do this, although that was not the tone of the presentations or discussions.
Much sociological work has pointed to wider structural factors shaping health and illness in the UK, which were not expanded upon during the conference. Since the 1980s sociologists have described environmental and psychosocial barriers to the adoption of ‘healthy behaviours’ (Graham, 1987). More recent work has shown that embodied dispositions may shape the extent to which individuals are able to access and engage with health promotion messages (Dumas et al., 2014). From the perspective of our Wellcome Trust project, Emma and I were interested in the emphasis on ‘lifestyle’ causes at the conference, though cancer research increasingly shows the complex factors contributing to the disease, including interactions between multiple genes, environmental risk factors and gene expression (Knox, 2010). Further, we were surprised that reference to wider (health) inequality in Scotland was rarely made.
The impact of genomics
Related to the emphasis on lifestyle factors as causes of cancer, we noted that the conference did not feature more discussion of the potential for genomic techniques and technologies to re-shape current conceptualisations of cancer, and to change the landscape of cancer screening, diagnosis and treatment. In two presentations, speakers drew on genomics – Professor David Weller discussed the possibilities for genomics to transform screening programmes (and importantly, the need to develop appropriate patient information and counselling alongside this), and Professor David Cameron’s talk pointed to personalised medicine as providing new opportunities for patients to participate in research.
The relative absence of these discussions from the conference may reflect how the impact of genomics is experienced in day-to-day clinical practice. Though some clinical trials such as the Matrix trial (lung cancer) draw on genomics and personalised medicine, by using the genetic make-up of a patient’s tumour to guide their treatment, the dissemination of techniques drawn from genomics into daily practice is not yet widespread. Recent news articles have pointed to the complexity of cancer, the ‘potholes’ genomic techniques have faced (including the difficulties in storing the huge amounts of data produced through genome sequencing), and described cancer genomics research in terms of a ‘slow revolution’. It seems that as genomic techniques generate increased knowledge of cancer and its progression, they also unlock more complexity for scientists working to understand and develop treatments for cancer.
Patient involvement in research
Professor David Cameron’s talk presented clinical research as essential to NHS practice, in terms of improving service provision (including cost effectiveness), and to provide the best treatments for patients. He refuted common objections to clinical research within the NHS, which include the potential exploitation of patients, and the time and financial pressures research adds to already constrained services. Professor Cameron also described that research is becoming more difficult within the NHS, due to increasing levels of regulation.
One of the most striking aspects of Professor Cameron’s talk, which framed clinical research as a duty of both academics and clinicians, was the feedback from patients and the public in the Q&A session. Two women who had experienced breast cancer commented on their positive experiences of participation in research trials, with one describing that data protection could hinder the progression of trials, in the eyes of both clinicians and participants. She described her stance on this, and past participation in research, in altruistic terms – wanting to prevent others from having to go through as much treatment as she did. Another audience member explained that amongst patients he had talked to, there was a consensus that they wanted their data to be used for worthwhile research.
Social science research has documented that patients consent to take part in genetic (cancer) research for a myriad of reasons. The notion of providing a ‘gift’ to society has been used by research institutions to establish and maintain public trust, and encourage participation in biological research (Tutton, 2004), and like those described above, explanations concerning altruism have been given by participants themselves (Pellegrini et al., 2014). However, other work has documented that patients may participate in clinical research for some personal benefit, including access to potentially curative treatments and receiving additional care from research nurses or study coordinators (Holmberg et al., 2015). This is relevant to recent ethical debates which advance the notion of a ‘right’ to participate in clinical research (Chan et al., 2011) notwithstanding the possibility of the ‘therapeutic misconception’. This positioning of patients as active participants in research, and blurring of boundaries between ‘patient’ and ‘research participant’, as research becomes increasingly embedded into care and treatment, is of interest to our Wellcome Trust project. We will explore motivations for participation in contemporary cancer research, patient views on providing samples of tissue for genomics research, and the potential for patient groups to shape research agendas.
Overall, the cancer conference provided much to think about for our work, and ended with a rousing talk given by Alan Clayton. He described his own, and his family’s, experiences of living with cancer. This was a great way to end the conference, and reminded the audience that the experiences of patients must be placed at the heart of cancer care, and that we should do the same as part of our research.
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DUMAS, A., ROBITAILLE, J. & JETTE, S. L. 2014. Lifestyle as a choice of necessity: Young women, health and obesity. Social Theory and Health, 12, 138-158.
GRAHAM, H. 1987. Women’s smoking and family health. Social Science & Medicine, 25, 47-56.
HOLMBERG, C., WHITEHOUSE, K., DALY, M. & MCCASKILL‐STEVENS, W. 2015. Gaining control over breast cancer risk: Transforming vulnerability, uncertainty, and the future through clinical trial participation–a qualitative study. Sociology of health & illness.
KNOX, S. S. 2010. From ‘omics’ to complex disease: a systems biology approach to gene-environment interactions in cancer. Cancer Cell International, 10, 11-11.
PELLEGRINI, I., CHABANNON, C., MANCINI, J., VIRET, F., VEY, N. & JULIAN-REYNIER, C. 2014. Contributing to research via biobanks: what it means to cancer patients. Health Expectations, 17, 523-533.