Living with and beyond cancer : a study to investigate what it is like to live with and beyond a 'poor prognostic' cancer in contemporary society

In the UK, more than two million people are alive following a cancer diagnosis and people with cancer live an average six times longer than they did forty years ago. There have been dramatic survival improvements in some cancers with six now having median survival expectations of over ten years. This is remarkable but cancer consists of more than two hundred ‘types’ and, for some types, predicted survival is still only weeks. Furthermore, some issues related to long term survival are only just emerging, many remain underresearched and studies that exist have been criticised for being drawn from limited cancer sites and ignoring the coping strategies and social contexts of those diagnosed with cancer. The aim of this work is to explore the experience of living with and beyond the diagnosis of a ‘poor prognostic’ cancer in contemporary society and from a sociological perspective. The work is informed by a literature review which explores lay understanding of cancer, a theoretically driven investigation designed to produce a sociological understanding of what it is like to live with cancer, a feasibility study and a full empirical study, which were both supported by users. Data for the principal study was generated by ‘photovoice’; a novel participatory method in which participants created and discussed photographs to illustrate and describe their experience in depth. This study revealed that living with and beyond cancer was an ongoing disruptive experience for participants and their constant fear of recurrence impacted on future plans. Furthermore, society’s stigmatising perception of cancer bestowed certain responsibilities and obligations on the participants. Photographs added a power and richness to the data. This work adds to the very limited understanding of the experience of cancer and ‘survivorship’ for this group and will hopefully guide appropriate communication, service provision and future research

Science and Technology Studies in Policy: the UK Synthetic Biology Roadmap

In this paper, we reflect on our experience as Science and Technology Studies (STS) researchers who were members of the working group that produced A Synthetic Biology Roadmap for the UK in 2012. We explore how this initiative sought to govern an uncertain future, and describe how it was successfully used to mobilize public funds for synthetic biology from the UK government. We discuss our attempts to incorporate the insights and sensibilities of STS into the policy process, and why we chose to use the concept of Responsible Research and Innovation (RRI) to do so. We analyze how the roadmapping process, and the final report, narrowed and transformed our contributions to the Roadmap. We show how difficult it is for STS researchers to influence policy when our ideas challenge deeply entrenched pervasive assumptions, framings and narratives about how technological innovation necessarily leads to economic progress, about public reticence as a roadblock to that progress, and about the supposed separation between science and society. We end by reflecting on the constraints under which we were operating from the outset, and on the challenges for STS in policy

Spectrum of PEX1 and PEX6 variants in Heimler syndrome

Heimler syndrome (HS) consists of recessively inherited sensorineural hearing loss, amelogenesis imperfecta (AI) and nail abnormalities, with or without visual defects. Recently HS was shown to result from hypomorphic mutations in PEX1 or PEX6, both previously implicated in Zellweger Syndrome Spectrum Disorders (ZSSD). ZSSD are a group of conditions consisting of craniofacial and neurological abnormalities, sensory defects and multi-organ dysfunction. The finding of HS-causing mutations in PEX1 and PEX6 shows that HS represents the mild end of the ZSSD spectrum, though these conditions were previously thought to be distinct nosological entities. Here, we present six further HS families, five with PEX6 variants and one with PEX1 variants, and show the patterns of Pex1, Pex14 and Pex6 immunoreactivity in the mouse retina. While Ratbi et al. found more HS-causing mutations in PEX1 than in PEX6, as is the case for ZSSD, in this cohort PEX6 variants predominate, suggesting both genes play a significant role in HS. The PEX6 variant c.1802G>A, p.(R601Q), reported previously in compound heterozygous state in one HS and three ZSSD cases, was found in compound heterozygous state in three HS families. Haplotype analysis suggests a common founder variant. All families segregated at least one missense variant, consistent with the hypothesis that HS results from genotypes including milder hypomorphic alleles. The clinical overlap of HS with the more common Usher syndrome and lack of peroxisomal abnormalities on plasma screening suggest that HS may be under-diagnosed. Recognition of AI is key to the accurate diagnosis of HS

Life, time, and the organism:Temporal registers in the construction of life forms

In this paper, we articulate how time and temporalities are involved in the making of living things. For these purposes, we draw on an instructive episode concerning Norfolk Horn sheep. We attend to historical debates over the nature of the breed, whether it is extinct or not, and whether presently living exemplars are faithful copies of those that came before. We argue that there are features to these debates that are important to understanding contemporary configurations of life, time and the organism, especially as these are articulated within the field of synthetic biology. In particular, we highlight how organisms are configured within different material and semiotic assemblages that are always structured temporally. While we identify three distinct structures, namely the historical, phyletic and molecular registers, we do not regard the list as exhaustive. We also highlight how these structures are related to the care and value invested in the organisms at issue. Finally, because we are interested ultimately in ways of producing time, our subject matter requires us to think about historiographical practice reflexively. This draws us into dialogue with other scholars interested in time, not just historians, but also philosophers and sociologists, and into conversations with them about time as always multiple and never an inert background

Life after an atrial fibrillation-related stroke : patient testimonial from Dr Claire Balmer

Claire was diagnosed with AF after she was told she’d suffered a stroke. Recently she was invited by AF Association to speak on their behalf at the European Union Summit on Chronic Diseases in Brussels

Using photovoice to study the experience of living with and beyond the diagnosis of a poor prognostic cancer

Background Photovoice is a novel research method which allows the communication of experience through participant-produced photographs. It has the potential to ‘dig deeper’ by offering participants another way of expressing aspects of life that may be difficult to put into words. It also allows researchers access to participants' homes, workplaces and social events. It is firmly rooted in the concept of ‘participation’ as participants have control of their own data and can choose when they produce it and how they share it. So far, it has been used successfully in other areas of health and social research and tentatively in cancer research. Aims The overall aim of the presented study was to explore the experience of living with and beyond cancer from the perspective of people diagnosed with a ‘poor prognostic’ cancer in a society that celebrates survival. Method Participants who have received a diagnosis of and treatment for a variety of ‘poor prognostic’ cancers (defined by site or stage) have been recruited nationally. Data have been gathered via interviews and participant-produced photographs. Participatory workshops have also been held in which participants have had an opportunity to be involved with the analysis of the photographs. Results Analysis is still underway but consistent and interesting themes are emerging. The photographs are offering very strong and succinct portrayals of living with a poor prognostic cancer. Full results will be available to present at the conference. Conclusion This study should provide much needed indepth information for professionals and policy-makers on the meaning of cancer for those with a likely limited survival and the positive and negative aspects of living with such a diagnosis

A 'new normal' : exploring the disruption of a poor prognostic cancer diagnosis using interviews and participant-produced photographs

Cancer survival is increasing, and many people are living years after cancer treatment. For example, it is predicted that 46 per cent of men and 56 per cent of women diagnosed in 2007 in England and Wales will survive their cancer for 5 years or more. However, 'survivors' may be living with significant physical, psychological and social disruption caused by their illness. Furthermore, huge disparities exist in the outcomes for different cancer 'types', and there has been little investigation of those living with 'poor prognostic' cancers. Our aim was to explore the experience of living after the diagnosis of a poor prognostic cancer. Data were gathered from 30 people via interviews and participants' own photographs. Our findings suggest that a full 'recovery' may be impossible after a cancer diagnosis. Such diagnoses will continue to threaten biographical trajectory and self-identity forever. 'Returning to normal' was considered highly important for participants, but a changed normality had to be accepted in which lives were managed carefully and a constant fear of recurrence created liminality and made 'survivorship' ambiguous. Experience was often complicated by the social response associated with cancer that hindered communication and increased isolation. Participant-produced photographs, used here for the first time specifically by a sample of people with poor prognosis cancer, proved to be an acceptable data collection method and have added a poignancy and 'completeness' to the data that have arguably led to a more comprehensive understanding