Open Access (free)
Participation to build the bioeconomy
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

Genomic research, with the aim of developing personalised cancer therapies, is not just being pursued through trials or smaller-scale studies in cancer clinics and laboratories. It is increasingly taking place on larger, national and industrial scales too, as data is gathered en masse from patients and publics (Hilgartner 2017 ). In this chapter we investigate one such flagship national genomic sequencing programme to explore how genomic data, alongside other health and social data, is being gathered via mainstream

in Personalised cancer medicine
Gene-expression profiling in early-stage breast cancer
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

Breast cancer has long been a focus of research and innovation in genomic medicine, from one of the first targeted therapies, Herceptin, as discussed in Chapter 1 , to testing for mutations in breast cancer susceptibility genes such as BRCA1 and BRCA2, which developed through the course of the 2000s. Research into the molecular biology and gene expression of breast cancer tumours has spurred the identification of a range of variants or subtypes of breast cancer according to their molecular make-up. In addition to the development of Herceptin

in Personalised cancer medicine
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

In this chapter, we explore how the promise and the work of personalised cancer medicine has evolved as genomic medicine has advanced. We trace some of the forms of value this has generated for patients and practitioners, industry and economies, and set the scene for our wider exploration of how this kind of future-crafting is reshaping the roles and responsibilities of cancer patients and practitioners. Drawing on a range of social scientific literatures and studies on genomic medicine for cancer, together with data from our own case studies

in Personalised cancer medicine
Future crafting in the genomic era
Series: Inscriptions

What does it mean to personalise cancer medicine? Personalised cancer medicine explores this question by foregrounding the experiences of patients, carers and practitioners in the UK. Drawing on an ethnographic study of cancer research and care, we trace patients’, carers’ and practitioners’ efforts to access and interpret novel genomic tests, information and treatments as they craft personal and collective futures. Exploring a series of case studies of diagnostic tests, research and experimental therapies, the book charts the different kinds of care and work involved in efforts to personalise cancer medicine and the ways in which benefits and opportunities are unevenly realised and distributed. Investigating these experiences against a backdrop of policy and professional accounts of the ‘big’ future of personalised healthcare, the authors show how hopes invested and care realised via personalised cancer medicine are multifaceted, contingent and, at times, frustrated in the everyday complexities of living and working with cancer. Tracing the difficult and painstaking work involved in making sense of novel data, results and predictions, we show the different futures crafted across policy, practice and personal accounts. This is the only book to investigate in depth how personalised cancer medicine is reshaping the futures of cancer patients, carers and professionals in uneven and partial ways. Applying a feminist lens that focuses on work and care, inclusions and exclusions, we explore the new kinds of expertise, relationships and collectives involved making personalised cancer medicine work in practice and the inconsistent ways their work is recognised and valued in the process.

Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

participation was troubled through the process of our own research and engagement practices and in the genomic technologies and initiatives we studied. In this chapter we explore how non-participation and limited participation in interviews and observations unfolded over the course of our project as a means of critically interrogating the participatory impetus in personalised cancer medicine, offering this as a useful counterpoint to the stories of participation we have presented thus far, and extending our analysis of the threads of resistance we have identified

in Personalised cancer medicine
Bridging the gap between science and society

Never have the scope and limits of scientific freedom been more important or more under attack. New science, from artificial intelligence to genomic manipulation, creates unique opportunities to make the world a better place. But it also presents unprecedented dangers, which many believe threaten the survival of humanity and the planet. This collection, by an international and multidisciplinary group of leading thinkers, addresses three vital questions: (1) How are scientific developments impacting on human life and on the structure of societies? (2) How is science regulated, and how should it be regulated? (3) Are there ethical boundaries to scientific developments in some sensitive areas (e.g. robotic intelligence, biosecurity)? The contributors are drawn from many disciplines, and approach the issues in diverse ways to secure the widest representation of the many interests engaged. They include some of the most distinguished academics working in this field, as well as young scholars.

Open Access (free)
Exploring personalised cancer medicine
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

based on a five-year UK-based multi-sited qualitative study of a diversity of patient, carer, practitioner, researcher, manager and policymaker experiences and accounts of genomic medicine in cancer, funded by a joint Senior Investigator Award in Society and Ethics from the Wellcome Trust. 1 We draw on a rich diversity of interviews, observations in clinics, laboratories and public events as well as textual analysis of public, policy and professional literatures and media discourses. 2

in Personalised cancer medicine
Prolonging foreshortened futures
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

Commercially produced genomic tests for cancer diagnosis, prediction and treatment are being incorporated into NHS care, albeit unevenly and with much contingency in practice. A range of genomic tests are under research and development as part of the widening diagnostics market: a recent report estimated that the tumour-profiling market would be worth $12.4 billion by 2024, with genetic biomarkers accounting for the largest share. 1 Companies are producing suites of tests for different cancers

in Personalised cancer medicine
Adaptive trials for intractable cancers
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

. As we discussed in Chapter 1 , randomised control trials (RCTs), the ‘gold standard’ of evidence-based medicine, have been superseded by what Keating and Cambrosio ( 2011 ) describe as a ‘new style of practice’ in medical oncology, based on large trials across multiple sites to develop targeted therapies for subtypes of cancers based on genomic profiling. Multi-arm trials test several different treatments at once. If a particular drug is not proving efficacious the trial arm can be closed and new treatment arms brought in (Medical Research Council 2014 ; West

in Personalised cancer medicine
Open Access (free)
Digital culture and personalised medicine
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

Tensions around the value generated by the complicated nexus of private, public and industry arrangements of large-scale genomic sequencing initiatives can also be found in the wider political economy of targeted therapies. Personalised cancer drugs promise cures and economic growth. But their expense presents a problem for healthcare providers and patients alike. Recent reports suggest that in one of the largest markets, the USA, spending on cancer drugs in the genomic era has increased dramatically – rising from $26 billion in 2012 to more

in Personalised cancer medicine