Adam Hedgecoe
Biographic Data
| ID | 132937 |
|---|---|
| NAME | Adam Hedgecoe |
| GIVEN NAMES | Adam |
| FAMILY NAME | Hedgecoe |
| SIGNATURE | HEDGECOE A |
| AFFILIATIONS | University of Sussex |
| ORCID | 0000-0002-8965-3889 |
| VERIFIED | Yes |
| TOTAL WORKS | 28 |
| TOTAL CITATIONS | 254 |
| AUTHOR COUNT | 28 |
| EDITOR COUNT | 0 |
| FIRST PUBLICATION YEAR | 1999 |
| LATEST PUBLICATION YEAR | 2024 |
| H-INDEX | 9 |
Taking after a parent: Phenotypic resemblance and the professional familialisation of genomics
This article draws on 2 years' worth of ethnographic observation of team meetings to explore decision-making in an NHS clinical genomics service. The focus of discussions was on ambiguous genomic results known as VUS or Variants of Uncertain Significance, which may be pathogenic but which also may turn out to be benign. In examining decision-making around such results, we note how, in contrast to much policy and promotional material in this area,…
Reflexive standardization and the resolution of uncertainty in the genomics clinic
In genomics, the clinical application of Next Generation Sequencing technologies (such as Whole Genome or Exome Sequencing) has attracted considerable attention from UK policymakers, interested in the benefits such technologies could bring the National Health Service. However, this boosterism plays little attention to the challenges raised by a kind of result known as a Variant of Uncertain Significance, or VUS, which require clinical geneticists…
In Memoriam of Andrew Webster
Scandals, Ethics, and Regulatory Change in Biomedical Research
This paper explores how a particular form of regulation-prior ethical review of research-developed over time in a specific context, testing the claims of standard explanations for such change (which center on the role of exogenous shocks in the form of research scandals) against more recent theoretical approaches to institutional changes, which emphasize the role of gradual change. To makes its case, this paper draws on archival and interview mat…
Selling ‘impact’: Peer reviewer projections of what is needed and what counts in REF impact case studies. A retrospective analysis
The intensification of an audit culture in higher education is made no more apparent than with the growing prevalence of performance-based research funding systems like the UK’s Research Excellence Framework (REF) and the introduction of new measures of assessment like ‘impact’ or more specifically, the economic and societal impacts of research. Detractors of this regulatory intervention, however, question the legitimacy and credibility of such a…
Reputational Risk, Academic Freedom and Research Ethics Review
Drawing on scholarship around academic freedom and new public management, this article explores the way in which research ethics committees in UK universities (URECs) can come to exhibit behaviour - common in their US equivalents - that prioritises the reputational protection of their host institution over and above academic freedom and the protection of research subjects. Drawing on two case studies the article shows both how URECs can serve to …
A deviation from standard design? Clinical trials, research ethics committees, and the regulatory co-construction of organizational deviance
Focusing on the high-profile drug disaster at London’s Northwick Park Hospital in 2006, this article explores how such an event can be seen as an example of organizational deviance co-constructed between the company running the research and the research ethics committee which approved the trial. This deviance was the result of the normalization of a specific dosing practice in the broader regulatory field, allowing the researchers and regulators …
Trust and regulatory organisations: The role of local knowledge and facework in research ethics review
While trust is seen as central to most social relations, most writers, including sociologists of science, assume that modern trust relations--especially those in regulatory relationships - tend towards the impersonal. Drawing on ethnographic material from one kind of scientific oversight body--research ethics committees based in the UK NHS--this paper argues that interpersonal trust is crucial to regulatory decision-making and intimately bound up…
Bioethics and the Reinforcement of Socio-technical Expectations
Over the past few years, considerable interest has been paid to the way in which social expectations (hopes, hypes, fears) about new genomic technologies help shape, and in themselves are shaped by, emerging technologies, regulatory regimes and social concerns. In comparison, little attention has been paid to the role of expectations in related, but non-scientific discourses, such as bioethics. Drawing on a review of publications addressing the e…
From Resistance to Usefulness: Sociology and the Clinical Use of Genetic Tests
Research Ethics Review and the Sociological Research Relationship
For years, sociologists working in other countries or UK-based medical sociologists have complained about the effects of having to seek approval from a research ethics committee (REC) or its equivalent before starting work. With the arrival of the ESRC's Research Ethics Framework, concern about ethics review has expanded to sociologists working on a wider range of topics. This article uses ethnographic data from a study of UK RECs to examine how …
Genetic databases and pharmacogenetics: Introduction
Context, ethics and pharmacogenetics
Pharmacogenetics as Alien Science: Alzheimer's Disease, Core Sets and Expectations
This paper takes Harry Collins' concept of the ‘core set’ and combines it with emerging work in the sociology of sociotechnical expectations to explore the continued citation in review papers of a research result that is widely rejected by experts. The result in question, a putative pharmacogenetic link between carrying the APOE4 allele and reduced response to the anti-Alzheimer's disease (AD) drug Tacrine, was first reported in 1995. Since then …
La maladie d'Alzheimer, les spécialistes et les débats éthiques sur les tests génétiques
La découverte, au milieu des années quatre-vingt-dix, de l’association entre l’allèle ApoEε4 et un risque accru de développer la forme tardive de la maladie d’Alzheimer, a été annoncée à l’époque, à la fois dans la presse scientifique et dans les médias, comme un résultat significatif. Pourtant, ceux qui traitent la maladie d’Alzheimer considèrent que cette découverte scientifique est sans intérêt au plan clinique. Cet article montre comment la c…
It's money that matters: The Financial Context of Ethical Decision-Making in Modern Biomedicine
While the importance of patient autonomy is widely acknowledged and discussed in the bioethics literature, clinicians' autonomy, their ability to make the best choices about patients' care free from outside interference, is far less debated. This paper takes one form of external influence over clinical decisions - the cost of drugs - and applies it to a specific case, that of HER2 positive breast cancer and the use of the drug Herceptin in the UK…
At the point at which you can do something about it, then it becomes more relevant: Informed consent in the pharmacogenetic clinic
The Politics of Personalised Medicine: Pharmacogenetics in the Clinic
Pharmacogenetics, the use of genetic testing to prescribe and develop drugs, has been hailed as a revolutionary development for the pharmaceutical industry and modern medicine. Supporters of 'personalised medicine' claim the result will be safer, cheaper, more effective drugs, and their arguments are beginning to influence policy debates. Based on interviews with clinicians, researchers, regulators and company representatives, this book explores …
Critical Bioethics: Beyond the Social Science Critique of Applied Ethics
This article attempts to show a way in which social science research can contribute in a meaningful and equitable way to philosophical bioethics. It builds on the social science critique of bioethics present in the work of authors such as Renée Fox, Barry Hoffmaster and Charles Bosk, proposing the characteristics of a critical bioethics that would take social science seriously. The social science critique claims that traditional philosophical bio…
A reply to Anne Kerr
In this reply to Anne Kerr's response to my article, I want to focus on three main themes that arise from her critique of my work: the inclusion, or not, of CBAVD within the CF classification scheme; the expansion of cystic fibrosis (CF) to other conditions; and the value of geneticization as an analytic tool. To be clear, I will not be discussing the size of the sample I used for my work, which is covered in the article itself and builds on the …
The Drugs Don't Work: Expectations and the Shaping of Pharmacogenetics
This article examines one particular set of technologies arising from developments in human genetics, those aimed at improving the targeting, design and use of conventional small molecule drugs-pharmacogenetics. Much of the debate about the applications and consequences of pharmacogenetics has been highly speculative, since little or no working technology is yet on the market. This article provides a novel analysis of the development of pharmacog…
Terminology and the Construction of Scientific Disciplines: The Case of Pharmacogenomics
This article explores the way in which social explanations underpin the names of particular disciplines. Taking the example of pharmacogenomics (a spin-off from the Human Genome Project), it shows how this term has been constructed since it appeared in 1997, the differences and similarities between it and its precursor, pharmacogenetics, and the way in which commercial interests underpin this new term. Drawing on the idea of visions and the socio…
Expansion and uncertainty: Cystic Fibrosis, Classification and Genetics
This paper presents an empirical examination of geneticization, the process where genetic explanations gain ascendancy in medical and social discourse. By focusing on Cystic Fibrosis (CF), this study shows how genetic explanations play a role in the reclassification of Cystic Fibrosis. One result of this geneticization is a nosological expansion, where the boundaries of the disease expand to include a certain form of male infertility. In addition…
Reinventing diabetes: Classification, division and the geneticization of disease
This paper shows how diabetes underwent geneticization to become the exemplar of a complex genetic disorder. My analysis focuses on the debates that took place in the mid-to-late-1970s over the classification of, and the role of genetic factors in, diabetes. By exploring the work of an influential researcher and clinician, Andrew Cudworth, I show how the discourse around diabetes constructed it as a genetic condition divided into different types …
Genetics in Society/Society in Genetics
The Drugs Don't Work: Expectations and the Shaping of Pharmacogenetics
This article examines one particular set of technologies arising from developments in human genetics, those aimed at improving the targeting, design and use of conventional small molecule drugs-pharmacogenetics. Much of the debate about the applications and consequences of pharmacogenetics has been highly speculative, since little or no working technology is yet on the market. This article provides a novel analysis of the development of pharmacog…
Expansion and uncertainty: Cystic Fibrosis, Classification and Genetics
This paper presents an empirical examination of geneticization, the process where genetic explanations gain ascendancy in medical and social discourse. By focusing on Cystic Fibrosis (CF), this study shows how genetic explanations play a role in the reclassification of Cystic Fibrosis. One result of this geneticization is a nosological expansion, where the boundaries of the disease expand to include a certain form of male infertility. In addition…
Schizophrenia and the Narrative of Enlightened Geneticization
In this paper I explore the way in which scientists attempt to construct schizophrenia as a genetic disease using various discursive strategies. These strategies involve: referring back to earlier twin and adoption studies on schizophrenia inheritance; constructing genetic models to allow some rôle for single gene versions of the condition; a cautious and responsible limit on the strength of current research; and the construction of a range of bo…
Reputational Risk, Academic Freedom and Research Ethics Review
Drawing on scholarship around academic freedom and new public management, this article explores the way in which research ethics committees in UK universities (URECs) can come to exhibit behaviour - common in their US equivalents - that prioritises the reputational protection of their host institution over and above academic freedom and the protection of research subjects. Drawing on two case studies the article shows both how URECs can serve to …
Research Ethics Review and the Sociological Research Relationship
For years, sociologists working in other countries or UK-based medical sociologists have complained about the effects of having to seek approval from a research ethics committee (REC) or its equivalent before starting work. With the arrival of the ESRC's Research Ethics Framework, concern about ethics review has expanded to sociologists working on a wider range of topics. This article uses ethnographic data from a study of UK RECs to examine how …
Trust and regulatory organisations: The role of local knowledge and facework in research ethics review
While trust is seen as central to most social relations, most writers, including sociologists of science, assume that modern trust relations--especially those in regulatory relationships - tend towards the impersonal. Drawing on ethnographic material from one kind of scientific oversight body--research ethics committees based in the UK NHS--this paper argues that interpersonal trust is crucial to regulatory decision-making and intimately bound up…
A deviation from standard design? Clinical trials, research ethics committees, and the regulatory co-construction of organizational deviance
Focusing on the high-profile drug disaster at London’s Northwick Park Hospital in 2006, this article explores how such an event can be seen as an example of organizational deviance co-constructed between the company running the research and the research ethics committee which approved the trial. This deviance was the result of the normalization of a specific dosing practice in the broader regulatory field, allowing the researchers and regulators …
Transforming genes: Metaphors of information and language in modern genetics
(1999). Transforming genes: Metaphors of information and language in modern genetics. Science as Culture: Vol. 8, BIOLOGISTIC METAPHORS, THEN AND NOW, pp. 209-229
Terminology and the Construction of Scientific Disciplines: The Case of Pharmacogenomics
This article explores the way in which social explanations underpin the names of particular disciplines. Taking the example of pharmacogenomics (a spin-off from the Human Genome Project), it shows how this term has been constructed since it appeared in 1997, the differences and similarities between it and its precursor, pharmacogenetics, and the way in which commercial interests underpin this new term. Drawing on the idea of visions and the socio…
Selling ‘impact’: Peer reviewer projections of what is needed and what counts in REF impact case studies. A retrospective analysis
The intensification of an audit culture in higher education is made no more apparent than with the growing prevalence of performance-based research funding systems like the UK’s Research Excellence Framework (REF) and the introduction of new measures of assessment like ‘impact’ or more specifically, the economic and societal impacts of research. Detractors of this regulatory intervention, however, question the legitimacy and credibility of such a…
Pharmacogenetics as Alien Science: Alzheimer's Disease, Core Sets and Expectations
This paper takes Harry Collins' concept of the ‘core set’ and combines it with emerging work in the sociology of sociotechnical expectations to explore the continued citation in review papers of a research result that is widely rejected by experts. The result in question, a putative pharmacogenetic link between carrying the APOE4 allele and reduced response to the anti-Alzheimer's disease (AD) drug Tacrine, was first reported in 1995. Since then …
At the point at which you can do something about it, then it becomes more relevant: Informed consent in the pharmacogenetic clinic
Genetics in Society/Society in Genetics
Scandals, Ethics, and Regulatory Change in Biomedical Research
This paper explores how a particular form of regulation-prior ethical review of research-developed over time in a specific context, testing the claims of standard explanations for such change (which center on the role of exogenous shocks in the form of research scandals) against more recent theoretical approaches to institutional changes, which emphasize the role of gradual change. To makes its case, this paper draws on archival and interview mat…
It's money that matters: The Financial Context of Ethical Decision-Making in Modern Biomedicine
While the importance of patient autonomy is widely acknowledged and discussed in the bioethics literature, clinicians' autonomy, their ability to make the best choices about patients' care free from outside interference, is far less debated. This paper takes one form of external influence over clinical decisions - the cost of drugs - and applies it to a specific case, that of HER2 positive breast cancer and the use of the drug Herceptin in the UK…
A reply to Anne Kerr
In this reply to Anne Kerr's response to my article, I want to focus on three main themes that arise from her critique of my work: the inclusion, or not, of CBAVD within the CF classification scheme; the expansion of cystic fibrosis (CF) to other conditions; and the value of geneticization as an analytic tool. To be clear, I will not be discussing the size of the sample I used for my work, which is covered in the article itself and builds on the …
Context, ethics and pharmacogenetics
Transforming genes: Metaphors of information and language in modern genetics
(1999). Transforming genes: Metaphors of information and language in modern genetics. Science as Culture: Vol. 8, BIOLOGISTIC METAPHORS, THEN AND NOW, pp. 209-229
Thrilling Yarns And Genetic Stories
review of GENOME: THE AUTOBIOGRAPHY OF A SPECIES IN 23 CHAPTERS, by Matt Ridley
Schizophrenia and the Narrative of Enlightened Geneticization
In this paper I explore the way in which scientists attempt to construct schizophrenia as a genetic disease using various discursive strategies. These strategies involve: referring back to earlier twin and adoption studies on schizophrenia inheritance; constructing genetic models to allow some rôle for single gene versions of the condition; a cautious and responsible limit on the strength of current research; and the construction of a range of bo…
Reinventing diabetes: Classification, division and the geneticization of disease
This paper shows how diabetes underwent geneticization to become the exemplar of a complex genetic disorder. My analysis focuses on the debates that took place in the mid-to-late-1970s over the classification of, and the role of genetic factors in, diabetes. By exploring the work of an influential researcher and clinician, Andrew Cudworth, I show how the discourse around diabetes constructed it as a genetic condition divided into different types …
Genetics in Society/Society in Genetics
The Drugs Don't Work: Expectations and the Shaping of Pharmacogenetics
This article examines one particular set of technologies arising from developments in human genetics, those aimed at improving the targeting, design and use of conventional small molecule drugs-pharmacogenetics. Much of the debate about the applications and consequences of pharmacogenetics has been highly speculative, since little or no working technology is yet on the market. This article provides a novel analysis of the development of pharmacog…
Terminology and the Construction of Scientific Disciplines: The Case of Pharmacogenomics
This article explores the way in which social explanations underpin the names of particular disciplines. Taking the example of pharmacogenomics (a spin-off from the Human Genome Project), it shows how this term has been constructed since it appeared in 1997, the differences and similarities between it and its precursor, pharmacogenetics, and the way in which commercial interests underpin this new term. Drawing on the idea of visions and the socio…
Expansion and uncertainty: Cystic Fibrosis, Classification and Genetics
This paper presents an empirical examination of geneticization, the process where genetic explanations gain ascendancy in medical and social discourse. By focusing on Cystic Fibrosis (CF), this study shows how genetic explanations play a role in the reclassification of Cystic Fibrosis. One result of this geneticization is a nosological expansion, where the boundaries of the disease expand to include a certain form of male infertility. In addition…
The Politics of Personalised Medicine: Pharmacogenetics in the Clinic
Pharmacogenetics, the use of genetic testing to prescribe and develop drugs, has been hailed as a revolutionary development for the pharmaceutical industry and modern medicine. Supporters of 'personalised medicine' claim the result will be safer, cheaper, more effective drugs, and their arguments are beginning to influence policy debates. Based on interviews with clinicians, researchers, regulators and company representatives, this book explores …
Critical Bioethics: Beyond the Social Science Critique of Applied Ethics
This article attempts to show a way in which social science research can contribute in a meaningful and equitable way to philosophical bioethics. It builds on the social science critique of bioethics present in the work of authors such as Renée Fox, Barry Hoffmaster and Charles Bosk, proposing the characteristics of a critical bioethics that would take social science seriously. The social science critique claims that traditional philosophical bio…
A reply to Anne Kerr
In this reply to Anne Kerr's response to my article, I want to focus on three main themes that arise from her critique of my work: the inclusion, or not, of CBAVD within the CF classification scheme; the expansion of cystic fibrosis (CF) to other conditions; and the value of geneticization as an analytic tool. To be clear, I will not be discussing the size of the sample I used for my work, which is covered in the article itself and builds on the …
At the point at which you can do something about it, then it becomes more relevant: Informed consent in the pharmacogenetic clinic
Genetic databases and pharmacogenetics: Introduction
Context, ethics and pharmacogenetics
Pharmacogenetics as Alien Science: Alzheimer's Disease, Core Sets and Expectations
This paper takes Harry Collins' concept of the ‘core set’ and combines it with emerging work in the sociology of sociotechnical expectations to explore the continued citation in review papers of a research result that is widely rejected by experts. The result in question, a putative pharmacogenetic link between carrying the APOE4 allele and reduced response to the anti-Alzheimer's disease (AD) drug Tacrine, was first reported in 1995. Since then …
La maladie d'Alzheimer, les spécialistes et les débats éthiques sur les tests génétiques
La découverte, au milieu des années quatre-vingt-dix, de l’association entre l’allèle ApoEε4 et un risque accru de développer la forme tardive de la maladie d’Alzheimer, a été annoncée à l’époque, à la fois dans la presse scientifique et dans les médias, comme un résultat significatif. Pourtant, ceux qui traitent la maladie d’Alzheimer considèrent que cette découverte scientifique est sans intérêt au plan clinique. Cet article montre comment la c…
It's money that matters: The Financial Context of Ethical Decision-Making in Modern Biomedicine
While the importance of patient autonomy is widely acknowledged and discussed in the bioethics literature, clinicians' autonomy, their ability to make the best choices about patients' care free from outside interference, is far less debated. This paper takes one form of external influence over clinical decisions - the cost of drugs - and applies it to a specific case, that of HER2 positive breast cancer and the use of the drug Herceptin in the UK…
From Resistance to Usefulness: Sociology and the Clinical Use of Genetic Tests
Research Ethics Review and the Sociological Research Relationship
For years, sociologists working in other countries or UK-based medical sociologists have complained about the effects of having to seek approval from a research ethics committee (REC) or its equivalent before starting work. With the arrival of the ESRC's Research Ethics Framework, concern about ethics review has expanded to sociologists working on a wider range of topics. This article uses ethnographic data from a study of UK RECs to examine how …
Bioethics and the Reinforcement of Socio-technical Expectations
Over the past few years, considerable interest has been paid to the way in which social expectations (hopes, hypes, fears) about new genomic technologies help shape, and in themselves are shaped by, emerging technologies, regulatory regimes and social concerns. In comparison, little attention has been paid to the role of expectations in related, but non-scientific discourses, such as bioethics. Drawing on a review of publications addressing the e…
Trust and regulatory organisations: The role of local knowledge and facework in research ethics review
While trust is seen as central to most social relations, most writers, including sociologists of science, assume that modern trust relations--especially those in regulatory relationships - tend towards the impersonal. Drawing on ethnographic material from one kind of scientific oversight body--research ethics committees based in the UK NHS--this paper argues that interpersonal trust is crucial to regulatory decision-making and intimately bound up…
A deviation from standard design? Clinical trials, research ethics committees, and the regulatory co-construction of organizational deviance
Focusing on the high-profile drug disaster at London’s Northwick Park Hospital in 2006, this article explores how such an event can be seen as an example of organizational deviance co-constructed between the company running the research and the research ethics committee which approved the trial. This deviance was the result of the normalization of a specific dosing practice in the broader regulatory field, allowing the researchers and regulators …
Reputational Risk, Academic Freedom and Research Ethics Review
Drawing on scholarship around academic freedom and new public management, this article explores the way in which research ethics committees in UK universities (URECs) can come to exhibit behaviour - common in their US equivalents - that prioritises the reputational protection of their host institution over and above academic freedom and the protection of research subjects. Drawing on two case studies the article shows both how URECs can serve to …
Selling ‘impact’: Peer reviewer projections of what is needed and what counts in REF impact case studies. A retrospective analysis
The intensification of an audit culture in higher education is made no more apparent than with the growing prevalence of performance-based research funding systems like the UK’s Research Excellence Framework (REF) and the introduction of new measures of assessment like ‘impact’ or more specifically, the economic and societal impacts of research. Detractors of this regulatory intervention, however, question the legitimacy and credibility of such a…
Scandals, Ethics, and Regulatory Change in Biomedical Research
This paper explores how a particular form of regulation-prior ethical review of research-developed over time in a specific context, testing the claims of standard explanations for such change (which center on the role of exogenous shocks in the form of research scandals) against more recent theoretical approaches to institutional changes, which emphasize the role of gradual change. To makes its case, this paper draws on archival and interview mat…
Sociology (21 works) · Political science (15 works) · Engineering ethics (13 works) · Biology (11 works) · Genetics (11 works) · Psychology (11 works) · Law (10 works) · Medicine (10 works) · Social science (10 works) · Engineering (9 works)