ABSTRACT
This chapter examines the silences of cancer research in Britain from 1970 to the present. It considers the process of communication and decision making in the consultation room, an experience that we might assume to have moved from a shadowy and silent past toward a more transparent and outspoken present. However, as I will show, silences remain, albeit differently configured and charged with different meanings. The period begins with almost complete silence on the subject of cancer
and the conduct of research. From the perspective of 2015, when individuals can expect to be empowered and autonomous participants in research into their illnesses, it is difficult to grasp just how different things were in 1970. I will begin by briefly mapping out this period of considerable change. Information – or an absence of silence – is the unit of currency in the process
of patient empowerment, autonomy and choice, whether we speak of it in terms of enhancing understanding of illness and treatment, as a tool to enable parity with health professionals, or simply as the expectation that one’s questions will be cogently and honestly answered (Tomes, 2006; 2007; Mold, 2010; 2013). At the beginning of the 1970s, there were no accessible sources of information for the person with cancer. It was a diagnosis engulfed in silence. Libraries held basic medical text books for those with the literacy to comprehend them. Women’s magazines, and the occasional newspaper article, offered scant and often sensational coverage. The journalist and well-known agony aunt Claire Rayner observed in 1980 that cancer storylines evoked considerable interest from readers but editors remained reluctant to cover such material, fearful that it would compromise sales. For information about what to expect of the diagnosis or its treatment, individuals had to rely instead on the people caring for them. This reliance was confounded by the fact that it was common practice
among doctors in Britain to withhold information about a cancer diagnosis. The prevailing paternalism ensured that patients were prevented from exposure to the unvarnished truth for fear of a catastrophic loss of hope. The merits or otherwise of disclosure attracted heated debate throughout the 1970s and
were widely debated in medical journals and sociological analyses (McIntosh, 1977; Novack et al., 1979). This situation resulted in corresponding silences in the conduct of cancer
research. How could consent to participation in cancer research be sought if the individual did not know they had cancer? When medical practitioners began to reconsider the question of cancer disclosure, they were influenced by an increasing demand for enhanced scrutiny of research practice. From the 1970s until the turn of the twenty-first century, scrutiny of research moved from internal professional self-governance to external independent review, culminating in the mandating of external regulation by impartial research ethics committees. These committees became increasingly insistent that researchers should seek the informed consent of research subjects, a process that necessitated the provision of information about trial rationale, discussion of potential risks, opportunities to ask questions and the ability to grant consent free from coercive influence. Of course, the process was contested. On the subject of informed consent,
for example, although enshrined in good practice since the 1964 Declaration of Helsinki, there is evidence to indicate that people taking part in cancer clinical trials were not routinely asked to give consent until well into the 1980s. But by degrees the silences associated with research conduct were progressively challenged (Gilmour Hamilton, 2013; Hedgecoe, 2009; Hazelgrove, 2002). This, coupled with the rise of cancer information provision in the voluntary
sector and the advent of the world wide web, meant that by the 2010s the individual with cancer might expect to feel suitably empowered and respected as an equal partner, equipped with the information to facilitate autonomous choice. To rely on that big picture, however, risks an assumption: that current
patients benefit from an improved regulatory environment such that the ‘research partners’ of today are reliably protected from the silences of the past. Yet the ubiquity of cancer information and the official recognition of the patient voice might be misleading. To avoid this risk of complacency, it is necessary to attend to the hitherto silent voice of the individual research participant.
