10 found
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  1.  23
    Trust and the Goldacre Review: why trusted research environments are not about trust.Mackenzie Graham, Richard Milne, Paige Fitzsimmons & Mark Sheehan - 2023 - Journal of Medical Ethics 49 (10):670-673.
    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 sharing centred on the ‘trusted research environment’ (TRE). TREs are being widely adopted by the UK’s health data initiatives including Health Data Research UK (HDR UK),1 Our Future Health2 (...)
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  2.  11
    Disruption and dislocation in post-COVID futures for digital health.Alessia Costa & Richard Milne - 2020 - Big Data and Society 7 (2).
    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 describe how the post-COVID futures of digital health are narrated in terms of the timing and speed with which they are being brought into being, as (...)
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  3.  26
    On the personal utility of Alzheimer’s disease-related biomarker testing in the research context.Eline M. Bunnik, Edo Richard, Richard Milne & Maartje H. N. Schermer - 2018 - Journal of Medical Ethics 44 (12):830-834.
    Many healthy volunteers choose to take part in Alzheimer’s disease 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 biomarkers, claiming that research participants will be able to use AD biomarker information for personal purposes, such as planning ahead or making important life decisions. In this (...)
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  4.  23
    What can data trusts for health research learn from participatory governance in biobanks?Richard Milne, Annie Sorbie & Mary Dixon-Woods - forthcoming - Journal of Medical Ethics.
    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 governance of large-scale biobanks. We distinguish between upstream and ongoing governance models, showing how they require careful design and operation if they (...)
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  5.  9
    From “Inclusion in What” to “Equity in What”: (Re)Thinking the Question of In/Equity in Precision Medicine and Health.Alessia Costa, Jerome Atutornu, Tuba Bircan, Daniela Boraschi, Sasha Henriques, Richard Milne, Lydia Okoibhole, Christine Patch & Anna Middleton - 2024 - American Journal of Bioethics 24 (3):89-91.
    Precision medicine (PM) and genomics are increasingly scrutinized through the lens of health inequities. This is a welcome development for a field that, while concerned with health-related differen...
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  6.  20
    What Difference Can Public Engagement in Genome Editing Make, and for Whom?Richard Milne, Ugbaad Aidid, Jerome Atutornu, Tuba Bircan, Daniela Boraschi, Alessia Costa, Sasha Henriques, Christine Patch & Anna Middleton - 2023 - American Journal of Bioethics 23 (7):58-60.
    Conley and colleagues (2023) explore how calls for broad public engagement (PE) in the case of heritable human genome editing are being put into action, reviewing the activities of five different i...
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  7.  16
    Digital phenotyping and the (data) shadow of Alzheimer's disease.Natassia Brenman, Alessia Costa & Richard Milne - 2022 - Big Data and Society 9 (1).
    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, we consider the intersection of hopes and concerns related to both digital tools and Alzheimer's disease using the metaphor of the ‘data shadow’. We (...)
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  8.  11
    TREs are still not about trust.Mackenzie Graham, Richard Milne, Paige Fitzsimmons & Mark Sheehan - 2023 - Journal of Medical Ethics 49 (9):658-660.
    In our recent paper ‘Trust and the Goldacre Review: Why TREs are not about trust’1 we argue that trusted research environments (TREs) reduce the need for trust in the use and sharing of health data, and that referring to these data storage systems as ‘trusted’ raises a number of concerns. Recent replies to our paper have raised several objections to this argument. In this reply, we seek to build on the arguments presented in our original paper, address some of the (...)
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  9.  12
    Ethical Challenges Associated with Pathogen and Host Genetics in Infectious Disease.Richard Milne & Christine Patch - 2022 - The New Bioethics 29 (1):24-36.
    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 with the implementation of infectious disease genomics has received comparatively little attention. In this paper, we contribute to this literature, focusing on the potential consequences for individuals and communities of the use (...)
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  10.  11
    “Ready for What?”: Timing and Speculation in Alzheimer’s Disease Drug Development.Richard Milne & Natassia F. Brenman - 2022 - Science, Technology, and Human Values 47 (3):597-622.
    “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 temporalities, biologies, and market processes of pharmaceutical innovation: how the promise of “willing bodies” in research emerges in relation to intertwined economic and biological time imperatives. (...)
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