Sociology of Health & Illness

Human papillomavirus self‐sampling: A tool in cancer prevention and sexual health promotion

AbstractThis article examines human papillomavirus (HPV) self‐sampling as an approach to cervical cancer prevention and the ways self‐sampling kits are promoted directly to consumers in the United States. Public health, biomedicine and health tech have increasingly imagined self‐sampling, which allows individuals to collect their own vaginal specimen, mail to a laboratory for testing and receive delivered results, as a component of cervical cancer prevention and sexual health promotion. This article examines the scientific and biomedical claims used to configure the problem in need of this solution and the ways persons, publics and markets are established. We analyse scientific literature, interviews with clinicians and other key actors, and websites of directly to consumers (DTC) companies. HPV self‐sampling is constructed as both a solution to inequities and gaps in cervical cancer screening and a solution to the wants and needs of those already engaged in self‐projects of body monitoring and risk reduction. These multidirectional biomedical tendencies also reveal how sexuality and sexual health and cervical cancer prevention and sexual health promotion are entangled objects. While we do not want to undermine the potential of HPV self‐sampling, we encourage a focus on equity and care and not commodified markets that reinforce notions of ‘good’ patients monitoring their health.

The importance of rhythms for maintaining consent in diagnostic encounters to detect cervical cancer

AbstractDiagnostic encounters can be seen as complex socio‐material processes. Drawing on the new materialist ideas of Barad, we studied how an innovative technology became part of the intra‐actions between different human and non‐human materialities in a cervical cancer diagnostic process. While researching the development of a technology intended to improve cervical cancer detection, we carried out a series of observations of diagnostic encounters involving clinicians, patients and the device in a hospital. The intra‐actions between the different materialities had rhythmic properties, repeated activities and timings that varied in intensity, for example, movements, exchanged looks, and talk that helped co‐produce the diagnosis and maintain consent. Sadly, the device interfered with the rhythms, undermining the clinicians’ desire to adopt it, despite it being more accurate at diagnosing ill health than previous assistive technologies. Studying rhythms as part of diagnostic encounters could help with the design and subsequent integration of novel technologies in healthcare, because they encompass relationships created by human and non‐human materialities. Importantly, highlighting the role of rhythms contributes another way diagnostic encounters are co‐produced between clinicians and patients, and how they can be disrupted, improving the understanding of how consent is maintained or lost.

Running out of time: The case of patient advocacy for ovarian cancer patients' access to PARP inhibitors

AbstractThis article analyses patient advocacy for ovarian cancer patients' access to a group of new targeted cancer treatments, so‐called poly (adenosine diphosphate ribose) polymerase (PARP) inhibitors. Ovarian cancer is often detected in its advanced stages and has relatively poor survival rates. Based on ethnographic fieldwork with the Gynae Cancer Group, a Swedish patients' group, this article examines ovarian cancer patient advocates' engagement with biomedicine as a rarely considered topic in the social sciences. Adopting a modified version of the science and technology studies perspective on evidence‐based activism, I analyse how ovarian cancer patient advocates engage in the ‘epistemic activities’ of framing, producing and mobilising ‘credentialed’ and ‘experiential’ knowledge. I show how patient advocates, alone and together with professionals and the media, engage in epistemic activities to ‘act upon’ ovarian cancer patients' anticipated limited time and poor prognosis: patient advocates mobilise around PARP inhibitors as offering hope, access to these drugs as an urgent matter and ovarian cancer care as unequal. The article contributes to the sociological literature on novel cancer treatments and patient advocacy through its ethnographic tracing of cancer advocacy tropes and knowledge practices, centred on the temporal figure of ‘the patient running out of time’.