A5009639175- Ethics in Clinical Research
- Biomedical Ethics and Regulation
- Artificial Intelligence in Healthcare and Education
- Health, Environment, Cognitive Aging
- COVID-19 Digital Contact Tracing
- Health Systems, Economic Evaluations, Quality of Life
- Hematopoietic Stem Cell Transplantation
- Forensic and Genetic Research
- Focus Groups and Qualitative Methods
- Social Media in Health Education
- CRISPR and Genetic Engineering
- Healthcare cost, quality, practices
- Climate Change and Health Impacts
- Ethics in medical practice
- Ethics and Social Impacts of AI
- Privacy, Security, and Data Protection
- Neuroethics, Human Enhancement, Biomedical Innovations
- Neurological disorders and treatments
- Green IT and Sustainability
- Patient Dignity and Privacy
- Mesenchymal stem cell research
- Functional Brain Connectivity Studies
- Ethics and Legal Issues in Pediatric Healthcare
- Evaluation and Performance Assessment
- Race, Genetics, and Society
University of Oxford
2022-2024
King's College London
2010-2024
UK Biobank
2024
University of Leicester
2024
Centre for Human Genetics
2022-2023
The White House
2023
NIHR Southampton Biomedical Research Centre
2022
Southampton General Hospital
2022
University of Southampton
2021-2022
University College London
2021
Several major invasive bacterial pathogens are encapsulated. Expression of a polysaccharide capsule is essential for survival in the blood, and thus virulence, but also target host antibodies basis effective vaccines. Encapsulated species typically exhibit antigenic variation express one number immunochemically distinct capsular polysaccharides that define serotypes. We provide sequences biosynthetic genes all 90 serotypes Streptococcus pneumoniae relate these to known structures patterns...
Mobile applications are increasingly regarded as important tools for an integrated strategy of infection containment in post-lockdown societies around the globe. This paper discusses a number questions that should be addressed when assessing ethical challenges mobile digital contact-tracing COVID-19: Which safeguards designed technology? Who access data? What is legitimate role "Big Tech" companies development and implementation these systems? How cultural behavioural issues accounted design...
Artificial Intelligence and associated digital technologies (DTs) have environmental impacts. These include heavy carbon dioxide emissions linked to the energy consumption required generate process large amounts of data; extracting minerals for, manufacturing of, technological components; e-waste. impacts are receiving increasing policy media attention through discourses sustainability. At same time, ‘sustainability’ is a complex nebulous term with multiplicity meanings practices. This paper...
As the closest outgroup to Bilateria, Phylum Cnidaria is likely be critical understanding origins and evolution of body axes. Proteins decapentaplegic (DPP)/bone morphogenetic protein (BMP) 2/4 subfamily are central specification dorsoventral (D/V) axis in bilateral animals, albeit with an inversion between arthropods chordates. We show that a dpp / BMP2 4 ortholog ( bmp2 4-Am ) present reef-building scleractinian coral, Acropora millepora (Class Anthozoa) it capable causing phenotypic...
The relative newness of 'impact' as a criterion for research assessment has meant that there is yet to be an empirical study examining the process its evaluation. This article part broader which exploring panel-based peer and end-user review societal impact evaluation using UK's national exercise, Research Excellence Framework (REF) 2014, case study. In particular, this explores different perceptions REF2014 evaluators had regarding impact, preceding their measure REF2014. Data are drawn...
The UK's 100,000 Genomes Project has the aim of sequencing genomes from UK National Health Service (NHS) patients while concomitantly transforming clinical care such that whole genome becomes routine practice in UK. Policymakers claim project will revolutionize NHS care. We wished to explore Project, and particular, extent which policymaker claims have helped or hindered work those associated with Genomics England – company established by Department deliver project. interviewed 20...
This paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards the virtues healthcare professionals seeking consent, relationships they construct with their patients.We draw focus groups UK working in field genetics, as well in-depth interviews patients who have sought testing UK's National Health Service (data collected 2013-2015). We explore two aspects consent: first, how consider act 'consenting'...
Forensic DNA phenotyping (FDP) is an emerging technology that seeks to make probabilistic inferences regarding a person's observable characteristics ("phenotype") from DNA. The aim aid criminal investigations by helping identify unknown suspected perpetrators, or help with non-criminal missing persons cases. Here we provide results the analysis of 36 interviews those who have professional stake in FDP, including forensic scientists, police officers, lawyers, government agencies and social...
This paper critically explores the research and development of 'digital phenotyping', which broadly refers to idea that digital data can measure predict people's mental health as well their potential risk for ill health. Despite increasing efforts digitally track health, there has been little sociological critical engagement with this field. aims fill gap by introducing phenotyping social sciences. We explore origins phenotyping, concept phenotype its benefit, linking these broader...
In order to combat the COVID-19 pandemic, policymakers around globe have increasingly invested in digital health technologies support 'test, track and trace' approach of containing spread novel coronavirus. These include mobile 'contact tracing' applications (apps), which can trace individuals likely come into contact with those who reported symptoms or tested positive for virus request that they self-isolate. This paper takes a critical public perspective advocates 'genuine participation'...
Social scientists have drawn attention to the role of hype and optimistic visions future in providing momentum biomedical innovation projects by encouraging alliances. In this article, we show how less optimistic, uncertain, modest can also provide with momentum. Scholars highlighted need for clinicians carefully manage expectations their prospective patients. Using example a pioneering clinical team deep brain stimulation children young people movement disorders, confront requirement...
Realising the societal gains from publicly funded health and medical research requires a model for reflexive evaluation precedent impact of research. This explores UK Research Excellence Framework evaluators' values opinions assessing impact, prior to assessment taking place. Specifically, we discuss characteristics two different extremes – "quality-focused" "societal impact-focused" evaluation. We show wide range evaluator views about that these could be conceptually reflected in positions...
In this paper we argue the need to reimagine research ethics frameworks include notions of environmental sustainability. While there have long been calls for healthcare and decision-making aspects sustainability, less attention has focused on how could address this. To do this, first describe traditional approach ethics, which often relies individualised risk. We that broaden notion individual risk consider issues associated with This is because carbon emissions other impacts, both cause...
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...
Social media (SM) research presents new challenges for ethics committees (RECs) who must balance familiar ethical principles with notions of public availability. This article qualitatively examines how U.K. REC members view this in terms risk and consent. While it found significant variance overall, there were discernible experience-based trends. less experience reviewing SM held inflexible consent that could be categorized as either relying on traditional requiring direct consent, or...
Clinical practice and research are governed by distinct rules regulations have different approaches to, for example, consent providing results. However, genomics is an example of where clinical become codependent. The 100 000 genomes project (100kGP) a hybrid venture person can obtain investigation only if he or she agrees to also participate in ongoing research—including industry commercial companies. In this paper, which draws on 20 interviews with professional stakeholders involved...
This paper examines the consequences of a culture "personal ethics" when using new methodologies, such as use social media (SM) sites source data for research. Using SM research an example, this explores practices number actors and researchers within "Ethics Ecosystem" which network governs ethically responsible behaviour. In case research, ethical is currently in dispute, even though it seemingly publically available, concerns relating to privacy, vulnerability, potential harm consent blur...