By Dr Ignacia Arteaga
For the last four years, I have been working on an anthropological study that explores the practices and views of scientists and health professionals developing early detection methods, and the lived experiences of research volunteers. Observing the real-life impact of early cancer detection studies is invaluable to better understand the social acceptability of early detection technologies and how to foster trust, as well as diversity in early detection research. This information may lead to future changes in the ways people like you are invited to participate in research studies, how test results are communicated to you, and how studies are conducted in the future.
The ethnographic study aimed to unpack the diverse ways stakeholders engage with early cancer detection technologies from bench to the bedside.
With a focus on technologies, I was interested in:
- Looking at how scientists develop these technologies for the early detection of cancer,
- Understanding how health professionals and researchers interact with each other and make decisions when using these technologies in clinical research, and
- Finding out what the impact of using these technologies is for research participants.
My scholarship argues that people’s engagement in early detection practices is mediated by ‘biomedical affects’: essentially the emotions that arise in those involved in the making, circulation and consumption of early detection technologies. I developed this concept to tease apart the practices through which people charge early detection technologies with affective capacities and how those capacities circulate across people and spaces, creating particular kinds of experiences for those involved. These biomedical affects play a central role in explaining knowledge production practices as well as inclusion and diversity issues in cancer clinical research and care.
The affects I focused on were expressions of fear, regret, reassurance and trust related to cancer care and clinical studies seeking to intercept the development of cancer. Yet, to fully apprehend these experiences, it is essential to understand the circumstances in which stakeholders such as scientists, health professionals, research participants and patients are situated. Only when we contextualise the perceptions, doubts and beliefs driving peoples’ practices and engagement with biomedical innovation in early detection, can we see these emerging. This impetus took me in three different directions.
First, as an ethnographer in 5 pre-clinical laboratories developing novel early cancer detection technologies in the UK, I learned how scientists render cancer visible at the edge of perception. In Learning to See Cancer (published in Medicine Anthropology Theory open access journal), I describe the practices pre-clinical scientists use to navigate the uncertainty that characterises their work. Following one group leader’s provocation, I concur with him in thinking that ‘developing a technology that is an opportunity rather than a threat in the clinic’ requires huge amounts of ethical thinking and emotional investment from pre-clinical scientists. Consideration of these biomedical affects then is, for the scientists, part and parcel of developing a technology that can be implemented successfully in day-to-day healthcare settings.
Secondly, as part of a multidisciplinary team carrying out the first-in-human clinical trials testing promising early cancer technologies, I witnessed how emotion or ‘affect’ is a driving force in motivating research participation. As I discussed at the Society of Behaviorial Medicine Annual Meeting, including patient ‘reassurance’ as an outcome of clinical interactions, could enable us to move away from a narrowly conceived binary logic of costs and benefits to assess cancer screening options, informing how early cancer detection technologies might be offered to the public.
A third and last stream of work came up when I started paying attention to how those biomedical affects spilled out of the clinic through ‘community-engagement and involvement’ interventions promoting public participation in clinical research and screening opportunities. To investigate this, I led REPRESENT, a multidisciplinary pilot across four universities in the USA and the UK. My team unpacked how those affects are inscribed in engagement models and how they can be negotiated with diverse groups to foster inclusion and trustworthiness. Practical recommendations to build mutually beneficial partnerships with minoritised groups in early cancer detection research are now under review for a top-tier medical journal.
You can learn more about the project, the publications that are arising from it, and some of the public dissemination materials we are putting together at: www.anthced.com
Acknowledgements: I am grateful for the unwavering support from Dr Perveez Mody at the Department of Social Anthropology. This research was possible thanks to the generous support received from the Philomathia Foundation Social Sciences Programme, the Cambridge Early Detection Institute, and the International Alliance for Cancer Early Detection (ACED).