A5015830268- Ethics in Clinical Research
- BRCA gene mutations in cancer
- Genomics and Rare Diseases
- Biomedical Ethics and Regulation
- Race, Genetics, and Society
- Mental Health and Patient Involvement
- Management and Organizational Studies
- Patient Dignity and Privacy
- Healthcare innovation and challenges
- Evaluation and Performance Assessment
- Technology Use by Older Adults
- Interdisciplinary Research and Collaboration
- Climate Change and Health Impacts
- Biomedical Text Mining and Ontologies
- Aging and Gerontology Research
- Health, Medicine and Society
- Employment and Welfare Studies
- Ethics in medical practice
- Data Quality and Management
- Contemporary Sociological Theory and Practice
- Information Systems Theories and Implementation
- Genetics, Bioinformatics, and Biomedical Research
- Ethics and Legal Issues in Pediatric Healthcare
- Homelessness and Social Issues
- Sustainability and Climate Change Governance
University of Oxford
2022-2024
Centre for Human Genetics
2022-2024
University of Southampton
2016-2024
UK Biobank
2024
University of Leicester
2024
The London College
2024
NIHR Southampton Biomedical Research Centre
2022-2023
The University of Melbourne
2022
Much has been published about the ethical issues encountered by clinicians in genetics/genomics, but those experienced clinical laboratory scientists are less well described. Clinical now frequently face navigating problems their work, how they should be best supported to do this is underexplored. This lack of attention also reflected ethics tools available such as guidance and deliberative forums, developed primarily manage arising within clinic. We explore what being scientists, think...
Abstract Background In recent years, the amount of genomic data produced in clinical genetics services has increased significantly due to advent next-generation sequencing. This influx information leads continuous changes knowledge on how genetic variants relate hereditary disease. These can have important consequences for patients who had testing past, as new may affect their management. When and should be recontacted after becomes available been investigated extensively. However, issue...
Abstract This article aims to explore the ethical issues arising from attempts diversify genomic data and include individuals underserved groups in studies exploring relationship between genomics health. We employed a qualitative synthesis design, combining three sources: 1) rapid review of empirical articles published 2000 2022 with primary or secondary focus on diversifying data, inclusion this, 2) an expert workshop 3) narrative review. Using these sources we found that are interconnected...
Centralised, compliance-focused approaches to research ethics have been normalised in practice. In this paper, we argue that the dominance of such systems has driven by neoliberal governance, where focus on controlling and individualising risk led an overemphasis decontextualised ethical principles conflation requirements with documentation ‘informed consent’. Using a UK-based case study, involving point-of-care-genetic test as illustration, rather than ensuring practice may obstruct...
How 'the patient' is imagined has implications for ethical decision-making in clinical practice. Patients are predominantly conceived an individualised manner as autonomous and independent decision-makers. Fields such genomic medicine highlight the inadequacies of this conceptualisation patients likely to have family members who may be directly affected by outcome tests others. Indeed, professional guidance increasingly taken a view that genetic information should, at times, regarded...
Despite the increasing push towards interdisciplinarity across physical and social sciences, little is known about realities of working such diverse disciplinary boundaries. This article provides empirical insight into challenges collaboration from perspective a sociologist on an interdisciplinary project focused developing medical device. Findings suggest effective contribution sociological research affected by framing projects. From beginning, pursued narrow scientific development, pushing...
As ambitions to 'mainstream' genetic and genomic medicine in the UK advance, patients are increasingly exposed information about data. Unlike results of many other medical investigations which linked time sample collection, testing provides immortal data that do not change across time, may have relevance for relatives generations far beyond patient's own lifespan. This immortality raises new ethical challenges healthcare professionals, families alike, such as ensuring consent possible future...
Innovation occupies a pivotal place in our understanding of knowledge-based economies, and this is raising questions about sources innovation, how it originates, the role played by employees, work practices learning. This paper explores these issues through case study research into new approach to providing healthcare for homeless people England, bringing together conceptual insights from employee-driven innovation literature, more broadly social practice-based learning theory organisational...
This article responds to calls for new approaches understanding and intervening in health inequalities and, particular, attention the processes relations that mediate structural inequality everyday outcomes. Our contribution focuses on part healthcare organizations play this. We draw organizational sociology, which theorizes while structures, cultures, practices may appear neutral – rely their legitimacy this they may, fact, operate interests of some social groups less others. proposition is...
With top-down models of innovation failing to address the entrenched problems healthcare, policy-makers have proposed that staff working on frontline might be better placed innovate solutions. Drawing a study employee-driven in UK public authors explore process through which without resources support policy implementation, showing how translation ideas from problematization practice is underpinned by 'bricolage'—the appropriation and repurposing 'at hand'.
Technological innovation is often positioned as a solution to the challenges of healthcare provision, yet experience bringing new technologies into practice has proven uneven and unpredictable. To realise potential benefits innovation, we need understand complex relations between contingencies contexts that seem be ubiquitous are brought play in settings. This article explores what field Science Technology Studies (STS) can contribute understanding implementation processes, arguing combining...
<title>Abstract</title> <bold>Background</bold>: This paper examines the ethical challenges associated with governance of large-scale biobanks. As collection and interrogation population-scale data is increasingly positioned as route to new understandings health disease, these biobanks that rely on research are becoming essential elements infrastructure. However, their longitudinal nature presents growing for governance. Typically, uses a one-off consent model where participants agree...
The genes found in the genetic code (genome) are sometimes called “building blocks for life” but knowing how they impact human health can be more complicated than it sounds. This article aims to show difficult understand our affect health, and why is not always easy work out a patient’s result from tests. We follow story of Ben, whose muscles have been getting weaker few years. To find why, Ben has had his sequenced, we will walk you through process by which results analyzed. Through this...
Journeys through Genomics is a series of illustrations co-produced with patients and families to communicate their experiences seeking genomic explanations for health condition the wider impact on lives. The resources are embedded within qualitative longitudinal research exploring patient’s medicine. This takes place as medicine becomes an integral part mainstream care UK healthcare system. depiction often focuses its technological components speed by which genetic code can be analysed, but...
La mort d’un sans-abri sur les marches hôpital londonien constitue un traumatisme organisationnel, tant l’événement choque le corps médical et révèle l’incapacité du système à prendre en charge problèmes liés l’itinérance. Un Professeur reconnu mène une enquête remettant question la prise des exclus par NHS 1 , puis entreprend d’imaginer solution innovante de constituer équipe médicale dotée fort esprit entrepreneurial. Celle-ci crée entité ‘Side by side’ (SBS) 2 dédiée aux sans-abri, au...
Abstract Keywords Reinterpretation; reclassification; genetics; laboratory; focus group. Background In recent years, the amount of genomic data produced in clinical genetics services has increased significantly due to advent next-generation sequencing. This influx information leads continuous changes knowledge on how genetic variants relate hereditary disease. These can have important consequences for patients who had testing past, as new may affect their management. When and should be...
Abstract Background. In recent years, the amount of genomic data produced in clinical genetics services has increased significantly due to advent next-generation sequencing. This influx information leads continuous changes knowledge on how genetic variants relate hereditary disease. These can have important consequences for patients who had testing past, as new may affect their management. When and should be recontacted after becomes available been investigated extensively. However, issue...
Advances in technology have resulted the ability to sequence entire human genomes as a routine, relatively inexpensive, investigation healthcare. This offers many promises of personalising, stratifying, and targeting healthcare with an understanding genetic susceptibility particular diseases or conditions. However, research collections (databases, biobanks etc) that underpin these developments are significantly skewed towards populations European ancestry meaning our (or indeed protection...
Abstract Keywords Reinterpretation; reclassification; genetics; laboratory; focus group. Background In recent years, the amount of genomic data produced in clinical genetics services has increased significantly due to advent next-generation sequencing. This influx information leads continuous changes knowledge on how genetic variants relate hereditary disease. These can have important consequences for patients who had testing past, as new may affect their management. When and should be...
We are moving towards a world in which data have life beyond the individual; where value and potential of ever-changing as technological developments bring new possibilities. This immortality raises ethical societal issues that not yet been fully articulated, consequently we unprepared to deal with. The challenges dealing with large volumes personal increasingly apparent many fields practice, although they may manifest different ways. workshop brings together participants from diverse...
Abstract As ambitions to ‘mainstream’ genetic and genomic medicine in the UK advance, data is becoming increasingly familiar patients. Unlike results of many other medical investigations which are linked time sample collection, testing provides immortal that do not change across time, may have relevance for relatives generations far beyond patient’s own lifespan. This immortality raises new ethical challenges healthcare professionals, patients families alike, such as ensuring consent...