Emily Ross
Originally posted on August 7, 2015 on the University of Leeds Centre for Health, Technologies and Social Practice blog.
Whilst working on this project, it is important that the team keep up-to-date with developments in cancer research. A very helpful, and accessible, source of information is the Cancer Research UK (CRUK) science blog. Looking through the archives, I found a post addressing public reaction to a recent article on the relationship between ‘lifestyle’ factors and cancer (Childs, 2012). The post described that CRUK
“…sometimes hear[s] from some people with cancer…they feel the finger of blame is being pointed at them when they read or hear about the preventable causes of cancer in the media…Several people wrote about the media being “judgemental” and having a “moralistic streak” when talking about the preventable causes of disease. But most concerning, some cancer patients said that the coverage made them “feel guilty” about their disease…how should we go about telling people about the results of this work, without playing the “blame game”?”
The article goes on to highlight its efforts to “equip individuals with information” and “empower” to prevent cancer, whilst being careful not to imply blame. It also outlines the “moral duty” of CRUK to report research findings to the public, including those linking lifestyle factors and cancer.
This discussion resonates with existing research in the sociology of health and illness. It has been noted that health promotion strategies in European and American regions generally encourage individuals to keep themselves well, for example by engaging in regular exercise regimes, and following healthy diets. As Petersen and Lupton (1996: ix) describe, “individuals are expected to take responsibility for the care of their bodies and to limit their potential to harm others”. Petersen and Lupton attribute this in part to contemporary forms of governance over populations, which favour free-markets and individual autonomy (1996: xiii). However, as those responding to the CRUK article (above) point out, these messages carry with them a sense of expectation that individuals will avoid ‘risks’ to their health, and disapproval when they do not. This is particularly marked in the areas of obesity and smoking-related illnesses (Bell et al, 2011).
These judgements, however, often do not account for the circumstances in which these behaviours take place, or the fact that complex factors, both biological and environmental, interact to make some individuals more susceptible to poor health than others. As in the article quoted above, when researchers and authors describe certain behaviours as lifestyle choices, and write about preventable causes of cancer, they downplay the constraints imposed on individual choices by their wider social contexts.
A recent article by Bell and Ristovski-Slijepcevic (2015), describes how these notions nevertheless continue to be disseminated amongst medical professionals. They noted at the cancer prevention conferences they attended that talks often focused on lifestyle factors, with cancer presented as a matter of choice: for patients and medical professionals alike. Bell and Ristovski-Slijepcevic observed that these presentations were often not based on conclusive evidence, but rife with moral and ideological claims.
Although cancer is often described as preventable, today it is also increasingly understood in terms of the complexities of genetic mutation and hereditary risk. It is important to consider during this project how discourses of guilt, blame and responsibility might be experienced by those with a cancer attributed to their genetic make-up, and thus seemingly ‘unpreventable’. Existing work already explores these issues. Hallowell’s (1999; 2004) research has described women’s accounts of genetic counselling, testing or surgery for hereditary breast and ovarian cancer (HBOC). She notes that though genetic risk is constructed as ‘involuntary’ by biomedical discourses, this does not seem to absolve those with ‘risky’ genes of responsibility for their health (1999: 599). In the case of HBOC, this includes the expectation that women will endeavor to prevent an ‘at-risk’ status from manifesting into a cancer diagnosis. One participant in Hallowell’s research described that undergoing testing was a way of “doing everything I can to give myself the best chance” (Hallowell, 2004: 558).
Similarly, Hesse-Biber (2014) argues that her participants, following identification of a BRCA mutation, were expected by medical professionals to accord with one of the courses of action they recommended. This course of action usually entailed surveillance or surgery to “eliminate” their chance of developing cancer. Blame and judgement, then, also have the potential to figure in patients’ experiences of hereditary cancer. This could be the case if a patient’s decision-making does not accord with medical advice. Here, the patient does not conform to the vision of the ‘responsible-genetic subject’ (Novas and Rose, 2000: 505), who gains as much knowledge about their condition as possible and applies this to oneself, aiming to optimise health.
Such feelings may be intensified when responsibilities to others are also introduced. The majority of women in Hallowell’s (2004) work, who had experienced cancer in the past, described that their main reason for undergoing mutation testing was to “generate information that could be used by other family members” (2004: 558). This was also the main motivator for men being tested for their BRCA mutation status (Hallowell et al., 2006). With only a small risk (6%) of developing breast cancer themselves, the men Hallowell et al interviewed all claimed that they had undergone testing to determine their carrier status for their children’s sake, with one describing this as a “duty” (2006: 975). Some men in her study explicitly raised feelings of blame and guilt in their accounts, should they be identified as a carrier, thus putting their child at risk.
Hesse-Biber’s (2014) work also describes a notion of participants ‘owing it’ to relatives to get tested. This could refer to those who had died, whereby her participants wanted to take advantage of modern tests and preventative surgeries, unavailable to previous generations. Some women in Hesse-Biber’s research purposefully memorialised their female relatives through the genetic testing process, for example by scheduling a test on their mother’s birthday.
Though a diagnosis of cancer attributable to an inherited genetic mutation has the potential to be perceived as inevitable, and thus out of an individual’s control, it is clear that responsibility, guilt and blame may nevertheless figure in patients’ experiences, in multiple ways. According to Hallowell (1999), this can shape and even constrain decisions about whether or not to undergo testing and/or treatment.
To date, much genetic cancer research and clinical application focuses on testing individuals and their relatives for specific mutations, which entail a risk of developing cancer. Today, findings from biomarker research have extended testing to other signs of risk. Some biomarkers may be indicative of cancer, and can be easily collected and tested (for example in blood or urine).
In thinking about the best way to present and provide these emerging forms of testing, we need to consider forms of responsibility and feelings of guilt and blame, but also hope and optimism, that they might elicit in people offered the tests and their families. We also need to consider how other members of the public view the tests, and the people who take them.
It is also essential to explore people’s understandings of the interplay between genetic and so-called ‘lifestyle’ factors as influencing cancer, and how guilt, blame and responsibility may be attenuated or reinforced through cancer prevention strategies. We will be tackling these concerns in our Wellcome Trust funded research on ‘Transformations and Translations in Cancer Patienthood’.
References
Bell, K. & Ristovski-Slijepcevic, S. (2015) Communicating “Evidence”: Lifestyle, Cancer, and the Promise of a Disease-free Future. Medical Anthropology Quarterly, n/a–n/a.
Childs, O. 2012. Lifestyle and cancer: against the blame game. Cancer Research UK Science Blog [Online]. Available from: http://scienceblog.cancerresearchuk.org/2012/04/11/lifestyle-and-cancer-against-the-blame-game/ [Accessed 29th June 2015].
Hallowell, N. (1999) Doing the right thing: genetic risk and responsibility. Sociology of Health & Illness, 21(5), pp. 597-621.
Hallowell, N., Arden-Jones, A., Eeles, R., Foster, C., Lucassen, A., Moynihan, C. & Watson, M. (2006) Guilt, blame and responsibility: men’s understanding of their role in the transmission of BRCA1/2 mutations within their family. Sociology of Health & Illness, 28(7), pp. 969–988.
Hallowell, N., Foster, C., Eeles, R., Ardern-Jones, A. & Watson, M. (2004) Accommodating risk: Responses to BRCA1/2 genetic testing of women who have had cancer. Social Science & Medicine, 59(3), pp. 553 – 565.
Hesse-Biber, S. N. (2014) Waiting for Cancer to Come: Women’s Experiences with Genetic Testing and Medical Decision Making for Breast and Ovarian Cancer, Ann Arbor, University of Michigan Press.
Novas, C. & Rose, N. (2000) Genetic risk and the birth of the somatic individual. Economy and Society, 29(4), pp. 485-513.