Sarah Cunningham-Burley
Biographic Data
| ID | 116556 |
|---|---|
| NAME | Sarah Cunningham-Burley |
| GIVEN NAMES | Sarah |
| FAMILY NAME | Cunningham-Burley |
| SIGNATURE | CUNNINGHAM-BURLEY S |
| AFFILIATIONS | University of Edinburgh |
| ORCID | 0000-0002-0009-7653 |
| VERIFIED | Yes |
| TOTAL WORKS | 70 |
| TOTAL CITATIONS | 485 |
| AUTHOR COUNT | 69 |
| EDITOR COUNT | 1 |
| FIRST PUBLICATION YEAR | 1984 |
| LATEST PUBLICATION YEAR | 2024 |
| H-INDEX | 13 |
Beyond the hype
AI and robotic technologies attract much hype, including utopian and dystopian future visions of technologically driven provision in the health and care sectors. Based on 30 interviews with scientists, clinicians and other stakeholders in the UK, Europe, USA, Australia, and New Zealand, this paper interrogates how those engaged in developing and using AI and robotic applications in health and care characterize their future promise, potential and …
Living With and Beyond Cancer With Comorbid Conditions
INTRODUCTION: There is a pressing need to understand and explore the complex experiences and psychosocial support needs of people LWBC-CM and their informal caregivers, to inform survivorship and supportive care interventions. METHODS: In-depth qualitative interviews were conducted with people LWBC-CM and their informal caregivers in Scotland, invited via primary care. One-to-one, face-to-face interviews were conducted with informed consent explo…
Laboratory Practices, Potentiality, and Material Patienthood in Genomic Cancer Medicine
Laboratory practitioners working in oncology are increasingly involved in implementing genomic medicine, operating at the intersection of the laboratory and the clinic. This includes molecular diagnostic work and molecular testing to direct entry into molecular-based clinical trials and treatment decision-making based on molecular profiling. In this article, we draw on qualitative interviews with laboratory practitioners in the United Kingdom to …
Unsettling the treatment imperative? Chemotherapy decision-making in the wake of genomic techniques
Social scientists have argued that a treatment imperative shapes experiences of biomedicine. This is evident within oncology, where discourses of hope are tempered by persistent fears surrounding cancer. It is within this context that genomic decision-making tools are entering routine care. These may indicate that a treatment is not appropriate for a particular disease profile. We draw on qualitative interviews and observations centred on gene ex…
Temporal Imaginaries in Accounts of Parenting Practices
In recent decades, scientific knowledge, especially about the brain, has been leveraged within policies and programmes aimed at parents of infants and young children. However, the ways in which parents engage with (neuro)science, and how they value recommendations based on this vis-à-vis other forms of expertise, is not often examined. Drawing on 22 interviews, we present an analysis of how parents and care-givers in Scotland negotiated (neurosci…
Index
Molecular profiling for advanced gynaecological cancer
Chapter 3 explores another technique that offers personalised predictions of responses to treatments for cancer based on molecular profiling, this time for later stage gynaecological cancer patients seeking to prolong foreshortened futures in a non-curative context. Gynaecological cancers encompass cancer of the womb, ovaries, cervix, vagina and vulva, and mainly, but not exclusively, affect post-menopausal women. Awareness of these cancers is lo…
Going private
While many cancer patients experience molecular diagnostics and targeted therapies as part of standard treatment or through clinical trials provided free-of-charge through the NHS, others turn to private providers to craft their own care pathways, utilising private health insurance, savings, taking out loans or raising money via crowdfunding online. In Chapter 6, we explore how practitioners, patients and their relatives seek to tailor their care…
Genomics at scale
Chapter 5 is about large-scale national studies, recruiting patients with a range of cancers to collect extensive molecular information about cancer and ultimately inform routine patient care via precision medicine. We focus on Genomics England’s 100,000 Genomes Project. After discussing the rise of these mass-participation initiatives and their strong national imaginaries of economic development and cutting-edge healthcare, we explore how practi…
Genomic techniques in standard care
Chapter 2 explores the promise of prediction and prevention of recurrence in personalised medicine for some kinds of breast cancer through the case of a genomic technique already widely adopted within the NHS across the UK: gene-expression profiling. We consider a genomic test, Oncotype DX, which seeks to identify, among early breast cancer patients, those who would or would not benefit from chemotherapy to prevent future recurrence. The aim here…
Optimising personalisation
In Chapter 4 we explore another route by which advanced cancer patients are offered the promise of tailored treatments that may prolong their lives, focusing on an adaptive multi-centre trial for lung cancer that aims to optimise treatments through a process of ongoing adaptation. Lung cancer has a lower public profile than some other cancers and it remains highly stigmatised because of its associations with smoking and higher prevalence among di…
Conclusion
In today's world, we are offered a constantly expanding number of technologies to integrate into our lives. We now utilise a range of interconnected technologies at work, at home and at leisure. The realm of sport is no exception, where new technologies or enhancements are available to athletes, coaches, scientists, umpires, governing bodies and broadcasters. However, this book argues that in a world where time has become a precious commodity and…
At the limits of participation
Chapter 7 considers non-participation and exclusions as well as reservation, consternation and rejections around genomic medicine in our research and in the public sphere more generally. We investigate the particular social and cultural contexts in which disengagement and resistance are generated. Exploring negative views and experiences or simply a lack of response to genomic medicine, we consider when these kinds of personalised medicine are ‘n…
Personalising cancer treatment and diagnosis through genomic medicine
Chapter 1 sets the scene for the case studies in the book, drawing on STS and related literatures to trace the development of molecular understandings of cancer, tests and treatments and their place in the cancer clinic. The chapter covers the evolution of clinical trials and biobank research, including the rise of adaptive, basket and umbrella trials. We also explore the development of new molecular taxonomies of cancer and the implications of t…
Public involvement in the governance of population-level biomedical research
Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 exper…
Accessing targeted therapies for cancer
As precision oncology has evolved, patients and their families have become more involved in efforts to access these treatments via fundraising and campaigning that take place outside of the larger cancer charities. In this paper, we explore the solidarities, networks, and emotional work of the UK-based access advocates, drawing on the stories of nine advocates, which included interviews and content analyses of their social media posts and coverag…
Personalised cancer medicine
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 stu…
Diagnostic layering
Social scientific work has considered the promise of genomic medicine to transform healthcare by personalising treatment. However, little qualitative research attends to already well-established molecular techniques in routine care. In this article we consider women's experiences of routine breast cancer diagnosis in the UK NHS. We attend to patient accounts of the techniques used to subtype breast cancer and guide individual treatment. We introd…
What makes AI 'intelligent' and 'caring'? Exploring affect and relationality across three sites of intelligence and care
Neurobiological limits and the somatic significance of love
While parents have long received guidance on how to raise children, a relatively new element of this involves explicit references to infant brain development, drawing on brain scans and neuroscientific knowledge. Sometimes called 'brain-based parenting', this has been criticised from within sociological and policy circles alike. However, the engagement of parents themselves with neuroscientific concepts is far less researched. Drawing on 22 inter…
Accomplishing an adaptive clinical trial for cancer
Diagnosing uncertainty, producing neonatal abstinence syndrome
The use of alcohol and other drugs during pregnancy is understood to be an important public health problem. One way in which this problem is expressed and responded to is via the identification and treatment of neonatal abstinence syndrome (NAS). In this article, we demonstrate how the processes of anticipating, identifying and responding to NAS are characterised by significant uncertainty among parents and health and social care practitioners. W…
Online accounts of gene expression profiling in early‐stage breast cancer
BACKGROUND: Genomic techniques are being developed within oncology and beginning to be experienced within routine cancer care. Little is known about how these tools feature in patients' experiences of treatment decision making. OBJECTIVE: This research explores the ways in which women interpret and discuss gene expression profiling for breast cancer treatment decision making, as articulated within online accounts. DESIGN: This study used a qualit…
Genomic research and the cancer clinic
This paper explores clinicians' and scientists' accounts of genomic research in cancer care and the complexities and challenges involved with delivering this work. Contributing to the sociology of (low) expectations, we draw on sociological studies of uncertainty in medicine to explore their accounts of working with uncertainty as part of the management of patient and institutional expectations. We consider their appeals to the importance of mode…
Problematisation and regulation
Shifting Subject Positions
Public dialogue about science, technology and medicine is an established part of the activities of a range of charities, private corporations, governmental departments and scientific institutions. However, the extent to which these activities challenge or bridge the lay—expert divide is questionable. Expertise is contested, by the public and the community of scholars who study and/or facilitate public engagement. In this paper, we explore the dyn…
Mapping the new molecular landscape
Epigenetics is the study of changes in gene expression caused by mechanisms other than changes in the DNA itself. The field is rapidly growing and being widely promoted, attracting attention in diverse arenas. These include those of the social sciences, where some researchers have been encouraged by the resonance between imaginaries of development within epigenetics and social theory. Yet, sustained attention from science and technology studies (…
Contrasting lives, contrasting views? understandings of health inequalities from children in differing social circumstances
On Ambivalence and Risk
This critical examination of theories of reflexive modernity with respect to the new human genetics draws on a range of empirical studies and conceptual critiques. In it we explore the ways in which genetic knowledge and testing technologies offer new choices, construct new risks and generate public and professional ambivalence. We contrast this with the processes of ordering, reduction and control suffusing these developments. We argue that redu…
Constituting neurologic subjects
Personalised cancer medicine
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 stu…
The New Genetics
In this paper we examine new genetics professionals' accounts of the social context of their work. We analyse accounts given in interview by an 'elite' group of scientists and clinicians. Drawing on the work of Gilbert and Mulkay (1984), we consider interviewees' discourse about knowledge, exploring the way in which they separate science from society through the use of what we have called the 'micro/macro split'. We then go on to consider the rea…
The sociology of cancer
Biomedicine is often presented as the driving force behind improvements in cancer care, with genomics the latest innovation poised to change the meaning, diagnosis, treatment, prevention and lived experience of cancer. Reviewing sociological analyses of a diversity of patient and practitioner experiences and accounts of cancer during the last decade (2007-17), we explore the experiences of, approaches to and understandings of cancer in this perio…
Defining the 'social
The way in which 'the social' is treated in discourses about the new human genetics is an important marker of the interests and relative power of the groups it concerns. Scientists and clinicians are powerful players in such discussions and seem to be able to direct attention towards the social implications of genetics, often viewed as beneficial, rather than to the science and technology itself. This can serve to protect their cognitive authorit…
Young people, biographical narratives and the life grid
Research into potentially sensitive issues with young people presents numerous methodological and ethical challenges. While recent studies have highlighted the advantages of task-based activities in research with young people, the literature on life history research provides few suggestions as to effective and appropriate research tools for encouraging young people to tell their stories. This article explores the contribution that may be made to …
Health related behavioural change in context
Constructing health and sickness in the context of motherhood and paid work
Changes in the labour market, especially the rise in the employment of women (lone or partnered) with children, alongside an increased policy emphasis on work as a component of active citizenship for men and women, have stimulated the development of research examining the balance between work and home. Although sociologists have long been interested in the interface between the spheres of paid work and domestic life, understandings of the subject…
Home and away
Little is known about children's views and experiences of their parents’ work−life reconciliation and how these are negotiated in everyday family practices. This article examines families' experiences of work−life reconciliation from both children's and parents' perspectives, drawing on a qualitative longitudinal study with 14 families in Scotland. Such experiences have implications for the spatial and temporal construction of family and childhoo…
The Consequences of Love
In recent years, there has been a resurgence of sociological work exploring the importance and meaning of kinship. Much of this work has criticized the 'individualization' thesis according to which changes in family structures over time have been interpreted as reflecting a fundamental decline in family values. Highlighting continuities as well as change in family life, this work has also suggested ways to move beyond the individualization debate…
Tackling community concerns about commercialisation and genetic research
Eugenics and the New Genetics in Britain
This article explores the accounts of eugenics made by a small but important group of British scientists and clinicians working on the new genetics as applied to human health. These scientists and clinicians used special rhetorical strategies for distancing the new genetics from eugenics and to sustain their professional autonomy. They drew a number of boundaries or distinctions between eugenics and their own field, describing eugenics as politic…
Constructing Grandparenthood
Drawing on data from a study of grandparenthood, this paper examines the nature of projected action, and the value of the concept of 'rule' in both lay and sociological reasoning. The way in which people becoming grandparents for the first time defined grandparenthood is analysed through an examination of their formulations of appropriate grandparenting behaviour, as elicited in qualitative interviews. Although much was left ill-defined, grandpar…
What makes AI 'intelligent' and 'caring'? Exploring affect and relationality across three sites of intelligence and care
Diagnostic layering
Social scientific work has considered the promise of genomic medicine to transform healthcare by personalising treatment. However, little qualitative research attends to already well-established molecular techniques in routine care. In this article we consider women's experiences of routine breast cancer diagnosis in the UK NHS. We attend to patient accounts of the techniques used to subtype breast cancer and guide individual treatment. We introd…
The burden of care
Parenting and family support are key prevention and intervention strategies for improving outcomes for children and families affected by parental drug misuse. However, little is known about the delivery of parenting support for drug-dependent parents, particularly within universal healthcare services. This study aimed to explore the way healthcare practitioners engage with this challenging agenda. Four multidisciplinary focus groups involving a p…
The role of the chemist in primary health care for children with minor complaints
Accomplishing an adaptive clinical trial for cancer
Becoming a Grandparent
Focusing on a neglected area of the life cycle, this paper explores the meaning and significance of becoming a grandparent, from the perspective of a sample of couples, becoming grandparents for the first time. The paper falls into four sections. The first considers why grand-parenthood has been a neglected area in family sociology and in research on the life cycle. The second and third sections use interview data from a prospective study of eigh…
Challenging Childhoods
Concern is increasing about children growing up in families where there are substance use problems but relatively little is known about the perspectives of the children themselves. This article reports on a qualitative study with young people who grew up in such families, exploring their accounts of their daily lives at home, school and leisure. The study focuses on the everyday interactions, practices and processes the young people felt helped t…
Prudence, pleasure, and cognitive ageing
The use of 'brain training' games is often regarded as relating to wider ideals of self-improvement and youthfulness. Hence, use is intertwined with discourses of 'active' ageing. This paper analyzes how the use and users of brain training games were configured in the UK media, from 2005 to 2015, and examines how notions of active ageing relate to these representations. Game users were rarely constructed solely as gamers, and were more often pres…
We Don't Talk about it…' Issues of Gender and Method in the Portrayal of Grandfatherhood
The problems involved in assessing the meaning and significance of becoming a grandfather are tied to the issue of the contextual production of sociological data. Grandfatherhood is analysed by taking into account the way in which the grandfathers contributed in research interviews. Since they did not speak readily about grandfatherhood, it becomes difficult for an investigator to describe its features. An assessment of grandfathers' roles showed…
Rules, Roles and Communicative Performance in Qualitative Research Interviews
Denzin has noted that the interview is a ‘conversational production, anticipated in the investigator's mind and imagination, but realised only in the world of conversational interaction’ (1970:188). This article aims to examine the processes involved in the production of a sociological interview especially, although not exclusively, at the level of conversational interaction. By focussing attention on to one specific piece of empirical work,(1) I…
Constructing Grandparenthood
Drawing on data from a study of grandparenthood, this paper examines the nature of projected action, and the value of the concept of 'rule' in both lay and sociological reasoning. The way in which people becoming grandparents for the first time defined grandparenthood is analysed through an examination of their formulations of appropriate grandparenting behaviour, as elicited in qualitative interviews. Although much was left ill-defined, grandpar…
Becoming a Grandparent
Focusing on a neglected area of the life cycle, this paper explores the meaning and significance of becoming a grandparent, from the perspective of a sample of couples, becoming grandparents for the first time. The paper falls into four sections. The first considers why grand-parenthood has been a neglected area in family sociology and in research on the life cycle. The second and third sections use interview data from a prospective study of eigh…
The role of the chemist in primary health care for children with minor complaints
The New Genetics
In this paper we examine new genetics professionals' accounts of the social context of their work. We analyse accounts given in interview by an 'elite' group of scientists and clinicians. Drawing on the work of Gilbert and Mulkay (1984), we consider interviewees' discourse about knowledge, exploring the way in which they separate science from society through the use of what we have called the 'micro/macro split'. We then go on to consider the rea…
Drawing the line
“Where do we draw the line?” is a question that is frequently asked in discussions about the new genetics. In this paper we explore a range of lay people's accounts of drawing the line. We show that, beyond its rhetorical function, answering this question involves important discussions about genetic research, testing, regulation, and social provision for people who are sick or disabled. It raises difficult questions about clients' and service pro…
The new genetics and health
Public understanding of the new genetics is often criticized in discussions about the social and ethical issues the new genetics raise. In this paper we challenge the “deficit model” evident in this dominant discourse, and offer a constructivist approach. We explore lay expertise about the new genetics, presenting an analysis of data from ten focus group discussions with a range of lay people. After distinguishing four different types of knowledg…
Eugenics and the New Genetics in Britain
This article explores the accounts of eugenics made by a small but important group of British scientists and clinicians working on the new genetics as applied to human health. These scientists and clinicians used special rhetorical strategies for distancing the new genetics from eugenics and to sustain their professional autonomy. They drew a number of boundaries or distinctions between eugenics and their own field, describing eugenics as politic…
Health related behavioural change in context
Defining the 'social
The way in which 'the social' is treated in discourses about the new human genetics is an important marker of the interests and relative power of the groups it concerns. Scientists and clinicians are powerful players in such discussions and seem to be able to direct attention towards the social implications of genetics, often viewed as beneficial, rather than to the science and technology itself. This can serve to protect their cognitive authorit…
On Ambivalence and Risk
This critical examination of theories of reflexive modernity with respect to the new human genetics draws on a range of empirical studies and conceptual critiques. In it we explore the ways in which genetic knowledge and testing technologies offer new choices, construct new risks and generate public and professional ambivalence. We contrast this with the processes of ordering, reduction and control suffusing these developments. We argue that redu…
Exploring the Body
Introduction PART I: THEORIZING EMBODIED PRACTICE: METAPHOR AND METHODS The Storyteller's Paradox: Homeopathy in the Borderlands A.Scott Bodies, Battlefields and Biographies: Scars and the Construction of the Body as Heritage K.A.Burnett & M.Holmes Dissonant Choreographies: Performativity and Method in Social-cultural Research J.van Loon & B.H.Rockwell Refusing to Fight: A Playful Approach to Chronic Disease G.Pillsbury PART II: NEGLECTED BODIES …
Exploring the Body
Contrasting lives, contrasting views? understandings of health inequalities from children in differing social circumstances
Constructing health and sickness in the context of motherhood and paid work
Changes in the labour market, especially the rise in the employment of women (lone or partnered) with children, alongside an increased policy emphasis on work as a component of active citizenship for men and women, have stimulated the development of research examining the balance between work and home. Although sociologists have long been interested in the interface between the spheres of paid work and domestic life, understandings of the subject…
Exploring Ambivalence about Genetic Research and its Social Context
Shifting Subject Positions
Public dialogue about science, technology and medicine is an established part of the activities of a range of charities, private corporations, governmental departments and scientific institutions. However, the extent to which these activities challenge or bridge the lay—expert divide is questionable. Expertise is contested, by the public and the community of scholars who study and/or facilitate public engagement. In this paper, we explore the dyn…
Tackling community concerns about commercialisation and genetic research
Young people, biographical narratives and the life grid
Research into potentially sensitive issues with young people presents numerous methodological and ethical challenges. While recent studies have highlighted the advantages of task-based activities in research with young people, the literature on life history research provides few suggestions as to effective and appropriate research tools for encouraging young people to tell their stories. This article explores the contribution that may be made to …
Generation Scotland
A preliminary consultation about Scotland's first family-based, population DNA database (Generation Scotland) involved 10 focus groups with diverse publics and a series of 17 interviews with key stakeholders in various locations in Scotland throughout 2003/2004. Unlike similar consultations on genetic databases, this took place at the concept phase of the proposed genetic research. We report on the specific concerns that arose around participatio…
Joined up’ thinking? Unsupported ‘fast-track’ transitions in the context of parental substance use
Recent policy responses to the risks entailed in ‘fast-track’ school–work transitions have targeted careleavers and young people identified as ‘not in education, employment or training’ (NEET). However, this approach has been criticised as diverting attention away from the fragile circumstances of others who may receive little parental or service support. We draw on a qualitative study with young people affected by parental substance use to furth…
Challenging Childhoods
Concern is increasing about children growing up in families where there are substance use problems but relatively little is known about the perspectives of the children themselves. This article reports on a qualitative study with young people who grew up in such families, exploring their accounts of their daily lives at home, school and leisure. The study focuses on the everyday interactions, practices and processes the young people felt helped t…
Action to achieve smoke-free homes- an exploration of experts' views
The expert panels were very aware of the sensitivities around the boundary between the 'private' home and public health interventions; but also the lack of evidence on the relative effectiveness of specific individual and community approaches on increasing restrictions on smoking in the home. Future action on smoke-free homes needs to consider and address these complexities. In particular health professionals and other key stakeholders need appro…
Sociologies of Disability and Illness - by Thomas, C
Thomas, C. Sociologies of Disability and Illness . 2007 Basingstoke : Palgrave Macmillan xi +213pp £19.99 ISBN: 9781403936370 (pbk) This book will be a useful addition to reading lists for both undergraduate and postgraduate students within the Sociology of Health and Illness, Disability Studies, Social Policy and Public Health. Although the book is about ‘sociologies’ of disability and illness, it is necessarily interdisciplinary in scope and sh…
Sociology (50 works) · Psychology (40 works) · Political science (36 works) · Medicine (34 works) · Social science (24 works) · Social Psychology (20 works) · Epistemology (19 works) · Public relations (19 works) · Law (17 works) · Qualitative research (15 works)