A5050245343- Ethics in Clinical Research
- Genomics and Rare Diseases
- BRCA gene mutations in cancer
- Mental Health and Patient Involvement
- CRISPR and Genetic Engineering
- Privacy-Preserving Technologies in Data
- Genomic variations and chromosomal abnormalities
- Biomedical Text Mining and Ontologies
- Cancer Genomics and Diagnostics
- Climate Change Communication and Perception
- Participatory Visual Research Methods
- Autism Spectrum Disorder Research
- Health Policy Implementation Science
- Biomedical Ethics and Regulation
- Health, Environment, Cognitive Aging
- Race, Genetics, and Society
- Dementia and Cognitive Impairment Research
- Ethics and Social Impacts of AI
- Privacy, Security, and Data Protection
- Ethics in medical practice
- Artificial Intelligence in Healthcare and Education
- Geriatric Care and Nursing Homes
- Frailty in Older Adults
- Patient Dignity and Privacy
- COVID-19 Digital Contact Tracing
Wellcome Sanger Institute
2025
Wellcome Connecting Science
2020-2024
University of Cambridge
2024
University of Exeter
2023
King's College London
2019-2022
Florence Nightingale Foundation
2021
Nightingale Hospital
2019
VisionTree
2009
Abstract Background Public trust is central to the collection of genomic and health data sustainability research. To merit trust, those involved in collecting sharing need demonstrate they are trustworthy. However, it unclear what measures most likely this. Methods We analyse ‘Your DNA, Your Say’ online survey public perspectives on including responses from 36,268 individuals across 22 low-, middle- high-income countries, gathered 15 languages. examine how participants perceived relative...
<ns3:p>As detailed in its flagship report, Genome UK, the UK government recognises vital role that broad public engagement across whole populations plays field of genomics. However, there is limited evidence about how to do this at scale. Most audiences not feel actively connected science, are often unsure relevance their lives and rarely talk family friends it; we term dis-connection a ‘disengaged audience’. We use narrative review explore: (i) attitudes towards genetics genomics what may...
In this paper, we examine the practice and promises of digital phenotyping. We build on work 'data self' to focus a medical domain in which value nature knowledge relations with data have been played out particular persistence, that Alzheimer's disease research. Drawing research researchers developers, consider intersection hopes concerns related both tools using metaphor shadow'. suggest as tool for engaging self, shadow is usefully able capture dynamic distorted representations, unease...
In this piece we explore the COVID pandemic as an opportunity for articulation and realization of digital health futures. Our discussion draws on engagement with emergent discourse around COVID-19 ongoing work imaginaries future care associated tools detection cognitive decline risk dementia. We describe how post-COVID futures are narrated in terms timing speed which they being brought into being, market actors attempt to establish scale durability transformation. However, also point...
The aim of this study was to determine how attitudes toward the return genomic research results vary internationally.We analyzed "Your DNA, Your Say" online survey public perspectives on data sharing including responses from 36,268 individuals across 22 low-, middle-, and high-income countries, these were gathered in 15 languages. We participants responded when asked whether (RoR) would motivate their decision donate DNA or health data. examined variation countries compared other with those...
The way we "talk" about genetics plays a vital role in whether public audiences feel at ease having conversations it. Our research explored there was any difference between "what say" and people hear" when providing information to community groups who are known be missing from genomics datasets. We conducted 16 focus with 100 members of the British had limited familiarity self-identified as belonging communities Black African, Caribbean, Pakistani ancestry well various ancestral heritage...
Abstract This article explores how the meanings and values of diagnosis are being reconfigured at interface between technological innovation imaginaries precision medicine. From genome sequencing to biological digital ‘markers’ disease, occupies an increasingly central space in way we imagine future health illness. These usually centred on promise faster, more precise personalised diagnosis, associated hope that if detected early enough disease can be effectively treated prevented....
Growing interest is being directed to the health applications of so-called 'passive data' collected through wearables and sensors without active input by users. High promises are attached passive data their potential unlock new insights into illness, but as researchers commentators have noted, this mode gathering also raises fundamental questions regarding subject's agency, autonomy privacy. To explore how these tensions negotiated in practice, we present discuss findings from an interview...
Abstract The legal duty to protect patient confidentiality is common knowledge amongst healthcare professionals. However, what may not be widely known, that this always absolute. In the United Kingdom, both General Medical Council governing practice of all doctors, as well many other professional codes recognise that, under certain circumstances, it appropriate break confidentiality. This arises when there a wider health others, and risk non-disclosure outweighs potential harm from breaking...
Health research has begun to pay increasing attention inactivity in its broadest sense as lack of meaningful activity and boredom. Few studies however have taken a critical look at this phenomenon. We explore (in)activity drawing on ethnographic data from observations an acute stroke unit post-discharge interviews with survivors their families. Four themes emerged that explain patients’ (in)activity: (i) planned activities; (ii) ‘doing nothing’, (iii) the material environment unit; (iv)...
Abstract The communication of genomic results to patients and families with rare diseases raise distinctive challenges. However, there is little evidence about optimal methods communicate this group service users. To address gap, we worked disease health professionals from two genetic/genomic services, one in the United Kingdom Czech Republic, co-design that best meet their needs. Using participatory methodology Experience-Based Co-Design (EBCD), conducted observations clinical appointments...
Drawing on three years of ethnographic engagement with the rare disease community in United Kingdom and Europe, this article explores experiences families who seek (sometimes) receive a genomic diagnosis. I trace how learn to enact unexplained symptoms common disabilities as rare, genetic disorders, they coordinate non-genomic ways "doing" within beyond clinic. These shed light socio-material processes through which variants become "diseases" (or fail do so), implications for those whose...
<ns4:p>As detailed in its flagship report, Genome UK, the UK government recognises vital role that broad public engagement across whole populations plays field of genomics. However, there is limited evidence about how to do this at scale, particularly for audiences who are not especially interested science, unsure relevance their lives or feel disengaged from it. We use a narrative review explore: (i) attitudes towards genetics and genomics what may influence reluctance engage with these...