Richard Milne

University of Cambridge | Cam · Faculty of Education

Biomedical research aimed at the development of therapies for chronic and late-onset conditions increasingly concentrates on the early treatment of symptom-less disease. This broad trend is evidenced in prominent shifts in contemporary dementia research. Revised diagnostic criteria and new approaches to clinical trials propose a focus on earlier st...

Trust may be important in shaping public attitudes to genetics and intentions to participate in genomics research and big data initiatives. As such, we examined trust in data sharing among the general public. A cross-sectional online survey collected responses from representative publics in the USA, Canada, UK and Australia (n = 8967). Participants...

New models of data governance for health data are a focus of growing interest in an era of challenge to the social licence. In this article, we reflect on what the data trust model, which is founded on principles of participatory governance, can learn from experiences of involving and engagement of members of the public and participants in the gove...

Background Public trust is central to the collection of genomic and health data and the sustainability of genomic research. To merit trust, those involved in collecting and sharing data need to demonstrate they are trustworthy. However, it is unclear what measures are most likely to demonstrate this. Methods We analyse the ‘Your DNA, Your Say’ onl...

This article explores how the meanings and values of diagnosis are being reconfigured at the interface between technological innovation and imaginaries of precision medicine. From genome sequencing to biological and digital ‘markers’ of disease, technological innovation occupies an increasingly central space in the way we imagine future health and...

As detailed in its flagship report, Genome UK, the UK government recognises the vital role that broad public engagement across whole populations plays in the field of genomics. However, there is limited evidence about how to do this at scale. Most public audiences do not feel actively connected to science, are often unsure of the relevance to their...

The way we “talk” about genetics plays a vital role in whether public audiences feel at ease in having conversations about it. Our research explored whether there was any difference between “what we say” and “what people hear” when providing information about genetics to community groups who are known to be missing from genomics datasets. We conduc...

As detailed in its flagship report, Genome UK, the UK government recognises the vital role that broad public engagement across whole populations plays in the field of genomics. However, there is limited evidence about how to do this at scale, particularly for public audiences who are not especially interested in the science, are unsure of the relev...

Background After years of government inaction, Ireland’s first National Strategy for Accelerating Genetics and Genomic Medicine in Ireland was launched in December 2022. Research, innovation, and robust governance are identified as key to supporting a genomic service. It is critical that any policies developed to support the implementation of this...

Dementia poses a growing challenge for health services but remains stigmatized and under‐recognized. Digital technologies to aid the earlier detection of dementia are approaching market. These include traditional cognitive screening tools presented on mobile devices, smartphone native applications, passive data collection from wearable, in‐home and...

More and more frequently, clinical trials for Alzheimer disease (AD) are targeting cognitively unimpaired individuals who are at increased risk of developing the disease. It is not always clear whether AD biomarker information should be disclosed to research participants: on the one hand, research participants may be interested in learning this inf...

The ability to use clinical and research data at scale is central to hopes for data-driven medicine. However, in using such data researchers often encounter hurdles–both technical, such as differing data security requirements, and social, such as the terms of informed consent, legal requirements and patient and public trust. Federated or distribute...

Introduction: Engagement, education and communication with public audiences have long been seen as important for maximising the benefits of genetics and genomics. An important challenge is how to structure engagement in such a way that recognises the value and legitimacy of diverse public opinions and voices alongside scientific expertise. In other...

The significance of big data for driving health research and improvements in patient care is well recognised. Along with these potential benefits, however, come significant challenges, including those concerning the sharing and linkage of health and social care records. Recently, there has been a shift in attention towards a paradigm of data shari...

The Covid-19 pandemic has demonstrated the potential of genomic technologies for the detection and surveillance of infectious diseases. Pathogen genomics is likely to play a major role in the future of research and clinical implementation of genomic technologies. However, unlike human genetics, the specific ethical and social challenges associated...

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 to passive data and their potential to unlock new insights into health and illness, but as researchers and commentators have noted, this mode of data gathering al...

Purpose The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. Methods We analyzed the “Your DNA, Your Say” online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle-, and high-income countries, and these were gat...

The representation of traditionally scientifically underserved groups in genomic research continues to be low despite concerns about equity and social justice and the scientific and clinical need. Among the factors that account for this are a lack of trust in the research community and limited diversity in this community. The success of the multipl...

Background Mild cognitive impairment (MCI) is a condition that exists between normal healthy ageing and dementia with an uncertain aetiology and prognosis. This uncertainty creates a complex dynamic between the clinicians’ conception of MCI, what is communicated to the individual about their condition, and how the individual responds to the informa...

In this paper, we examine the practice and promises of digital phenotyping. We build on work on the ‘data self’ to focus on a medical domain in which the value and nature of knowledge and relations with data have been played out with particular persistence, that of Alzheimer's disease research. Drawing on research with researchers and developers, w...

Background Mild cognitive impairment (MCI) is a state between normal healthy ageing and dementia with an uncertain prognosis. This uncertainty creates a complex dynamic between the clinicians’ conception of MCI, what is communicated to the individual about their condition, and how the individual perceives the information conveyed to them. The aim o...

Background SPEAR (Study of Participant Experience of Alzheimer’s disease Research) was a sub‐study of work on the Ethical, Legal and Social Implications of the European Prevention of Alzheimer’s Dementia (EPAD) project. The EPAD Longitudinal Cohort Study (LCS) aimed to generate a detailed picture of biological and cognitive change over time, and to...

Genomic science is increasingly central to the provision of health care. Producing and applying robust genomics knowledge is a complex endeavour in which no single individual, profession, discipline or community holds all the answers. Engagement and involvement of diverse stakeholders can support alignment of societal and scientific interests, unde...

In this article, we address the problem of participation and the dominant focus on motivations in clinical research. We explore participation as a relational mode of ‘being in time’ in Alzheimer's dementia prevention—a field profoundly shaped by changing bodies through time, as well as promissory trends towards future‐oriented preventative medicine...

Background : The collection and sharing of genomic and health data underpins global efforts to develop genomic medicine services. ‘Your DNA, Your Say’ is a cross-sectional survey with the goal of gathering lay public attitudes toward the access and sharing of deoxyribonucleic acid (DNA) information and medical information. It suggests significant i...

Patients and families need hope, not false hope

Background: Genomic medicine could improve precise risk stratification, early prevention, and personalised treatment across a broad spectrum of disease. As this reality approaches, questions on the importance of public trust arise. The success of genomic medicine initiatives is influenced by the public’s trust and willingness to engage. Specific so...

Background: Genomic medicine could improve precise risk stratification, early prevention, and personalised treatment across a broad spectrum of disease. As this reality approaches, questions on the importance of public trust arise. The success of genomic medicine initiatives is influenced by the public’s trust and willingness to engage. Specific so...

“Readiness cohorts” are an innovation in clinical trial design to tackle the scarcity of time and people in drug studies. This has emerged in response to the challenges of recruiting the “right” research participants at the “right time” in the context of precision medicine. In this paper, we consider how the achievement of “readiness” aligns tempor...

Background When and how to communicate effectively the results of genetic and biomarker based prediction, detection, and quantification of the brain substrates of dementia involve important ethical and legal issues critical for precision medicine. The urgency of the issue has increased as People Living with Dementia (PLwD) and with Risk for Dementi...

Background Including participants in patient and public involvement activities is increasingly acknowledged as a key pillar of successful research activity. Such activities can influence recruitment and retention, as well as researcher experience and contribute to decision making in research studies. However, there are few established methodologies...

Analyzing genomic data across populations is central to understanding the role of genetic factors in health and disease. Successful data sharing relies on public support, which requires attention to whether people around the world are willing to donate their data that are then subsequently shared with others for research. However, studies of such p...

In this piece we explore the COVID pandemic as an opportunity for the articulation and realization of digital health futures. Our discussion draws on an engagement with emergent discourse around COVID-19 and ongoing work on imaginaries of future care associated with digital tools for the detection of cognitive decline and the risk of dementia. We d...

The legal duty to protect patient confidentiality is common knowledge amongst healthcare professionals. However, what may not be widely known, is that this duty is not always absolute. In the United Kingdom, both the General Medical Council governing the practice of all doctors, as well as many other professional codes of practice recognise that, u...

Background Patient, public and participant involvement (PPPI) is increasingly acknowledged as a key pillar of successful research activity. PPPI can influence recruitment and retention, as well as researcher experience and contribute to decision making in research studies. However, there are few established methodologies of how to set up and manage...

Background: Including participants in patient and public involvement activities is increasingly acknowledged as a key pillar of successful research activity. Such activities can influence recruitment and retention, as well as researcher experience and contribute to decision making in research studies. However, there are few established methodologie...

Background: Research into Alzheimer's disease and other dementias increasingly involves large-scale data-sharing initiatives. The development of novel digital tools and assessments is likely to increase the need for these. This presents ethics and governance challenges to ensure the use of these data is able to maximise the benefit to patients and...

Public acceptance is critical for sharing of genomic data at scale. This paper examines how acceptance of data sharing pertains to the perceived similarities and differences between DNA and other forms of personal data. It explores the perceptions of representative publics from the USA, Canada, the UK and Australia (n = 8967) towards the donation o...

The increasing global prevalence of dementia and the lack of disease-modifying treatments give rise to the need for early detection of dementia-causing diseases to enable the development and targeted administration of preventative interventions. However, current methods that have potential for the early detection of dementia-causing diseases, such...

In this paper I examine how the promissory value of genetics is constituted through processes of scale and scaling, focussing on the relationship between “rare” and “common” forms of disease. I highlight the bodies and spaces involved in the production of post-genomic knowledge and technologies of Alzheimer's disease and the development of new dise...

Dementias Platform UK marks a new phase in the development of data science and experimental medicine for dementias research in the UK. Drawing on relationships with pre-existing studies and participant populations, DPUK has the potential to impact on researcher practices and participant experiences of dementias science. This report examines the eth...

Aim: Despite the growing importance of public and patient involvement in biomedical research, comparatively little attention has been paid to the important role of research participants themselves. Our aim in this paper is to explore the impact research participant involvement has within the PREVENT and the European Prevention of Alzheimer's Demen...

With the use of genetic technology, researchers have the potential to inform medical diagnoses and treatment in actionable ways. Accurate variant interpretation is a necessary condition for the utility of genetic technology to unfold. This relies on the ability to access large genomic datasets so that comparisons can be made between variants of int...

This paper examines the dynamic relationship between data, participation and value through an analysis of developments in Alzheimer’s disease research. Alzheimer’s disease has risen rapidly up national and international policy agendas, particularly in Europe and North America. Research funding and initiatives have proliferated, many of which emphas...

Many healthy volunteers choose to take part in Alzheimer’s disease (AD) prevention studies because they want to know whether they will develop dementia—and what they can do to reduce their risk—and are therefore interested in learning the results of AD biomarker tests. Proponents of AD biomarker disclosure often refer to the personal utility of AD...

Biomedical research aimed at the development of therapies for chronic and late‐onset conditions increasingly concentrates on the early treatment of symptom‐less disease. This broad trend is evidenced in prominent shifts in contemporary dementia research. Revised diagnostic criteria and new approaches to clinical trials propose a focus on earlier st...

Neuroimaging is advancing a new definition of Alzheimer's disease (AD). Using imaging biomarkers, clinicians may begin to diagnose the disease by identifying pathology and neurodegeneration in either cognitively impaired or unimpaired adults. This “biomarker-based” diagnosis may allow clinicians novel opportunities to use interventions that either...

In clinical trials which target pathophysiological mechanisms associated with Alzheimer's disease, research participants who are recruited based on biomarker test results should be informed about their increased risk of developing Alzheimer's dementia. This paper presents the results of a qualitative focus group study of attitudes and concerns towa...

This paper examines the dynamic relationship between data, participation and value through an analysis of developments in Alzheimer’s disease research. Alzheimer’s disease has risen rapidly up national and international policy agendas, particularly in Europe and North America. Research funding and initiatives have proliferated, many of which emphas...

Background: Low participation in research is one of the key challenges to advancing understanding of dementia, and improving the care and treatment of those who live with this condition. Nurses and nurse researchers play a vital role in recruiting people with dementia to studies, as several countries including the United States and the United Kingd...

There is growing interest in the development of novel approaches to secondary prevention trials in Alzheimer's disease to facilitate screening and recruitment of research participants and to reduce the time and costs associated with clinical trials. Several international research collaborations are setting up research infrastructures that link exis...

There is growing interest in the development of novel approaches to secondary prevention trials in Alzheimer's disease to facilitate screening and recruitment of research participants and to reduce the time and costs associated with clinical trials. Several international research collaborations are setting up research infrastructures that link exis...

This paper explores the promise of induced pluripotent stem cells as a model system for the study of neurodegenerative diseases of Alzheimer’s, Parkinson’s and other diseases of the aging brain. Research in these areas, as in neuroscience more broadly, has struggled with the imperfect mapping between human and animal brains. The paper argues that t...

This paper explores the promise of induced pluripotent stem cells as a model system for the study of neurodegenerative diseases of Alzheimer’s, Parkinson’s and other diseases of the aging brain. Research in these areas, as in neuroscience more broadly, has struggled with the imperfect mapping between human and animal brains. The paper argues that t...

Background: Current Alzheimer's disease (AD) research initiatives focus on cognitively healthy individuals with biomarkers that are associated with the development of AD. It is unclear whether biomarker results should be returned to research participants and what the psychological, behavioral and social effects of disclosure are. This systematic r...

This chapter considers changes to research practices within contemporary dementia research. It considers how observational cohort studies are being repositioned as a form of promising sociality on which rest expectations of the future of research into Alzheimer’s and other neurodegenerative disorders. Drawing on empirical research with cohort resea...

Food Words is a series of provocative essays on some of the most important keywords in the emergent field of food studies, focusing on current controversies and on-going debates. Words like ‘choice’ and ‘convenience’ are often used as explanatory terms in understanding consumer behavior but are clearly ideological in the way they reflect particular...

Food Words is a series of provocative essays on some of the most important keywords in the emergent field of food studies, focusing on current controversies and on-going debates. Words like ‘choice’ and ‘convenience’ are often used as explanatory terms in understanding consumer behavior but are clearly ideological in the way they reflect particular...

Food Words is a series of provocative essays on some of the most important keywords in the emergent field of food studies, focusing on current controversies and on-going debates. Words like ‘choice’ and ‘convenience’ are often used as explanatory terms in understanding consumer behavior but are clearly ideological in the way they reflect particular...

Food Words is a series of provocative essays on some of the most important keywords in the emergent field of food studies, focusing on current controversies and on-going debates. Words like ‘choice’ and ‘convenience’ are often used as explanatory terms in understanding consumer behavior but are clearly ideological in the way they reflect particular...

Food Words is a series of provocative essays on some of the most important keywords in the emergent field of food studies, focusing on current controversies and on-going debates. Words like ‘choice’ and ‘convenience’ are often used as explanatory terms in understanding consumer behavior but are clearly ideological in the way they reflect particular...

Food Words is a series of provocative essays on some of the most important keywords in the emergent field of food studies, focusing on current controversies and on-going debates. Words like ‘choice’ and ‘convenience’ are often used as explanatory terms in understanding consumer behavior but are clearly ideological in the way they reflect particular...

Food Words is a series of provocative essays on some of the most important keywords in the emergent field of food studies, focusing on current controversies and on-going debates. Words like ‘choice’ and ‘convenience’ are often used as explanatory terms in understanding consumer behavior but are clearly ideological in the way they reflect particular...

Food Words is a series of provocative essays on some of the most important keywords in the emergent field of food studies, focusing on current controversies and on-going debates. Words like ‘choice’ and ‘convenience’ are often used as explanatory terms in understanding consumer behavior but are clearly ideological in the way they reflect particular...

Food Words is a series of provocative essays on some of the most important keywords in the emergent field of food studies, focusing on current controversies and on-going debates. Words like 'choice' and 'convenience' are often used as explanatory terms in understanding consumer behavior but are clearly ideological in the way they reflect particula...

The importance of date labelling in informing both retailers and consumers how long a food will remain edible, safe and of sufficient quality makes it a prime site for the identification of, and intervention in, food waste. This paper examines the historical and spatial evolution of the date labelling system in the UK. The paper shows how reforms t...