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  1. Precision Medicine, Data, and the Anthropology of Social Status.Hugh Desmond - 2021 - American Journal of Bioethics 21 (4):80-83.
    The success of precision medicine depends on obtaining large amounts of information about at-risk populations. However, getting consent is often difficult. Why? In this commentary I point to the differentials in social status involved. These differentials are inevitable once personal information is surrendered, but are particularly intense when the studied populations are socioeconomically or socioculturally disadvantaged and/or ethnically stigmatized groups. I suggest how the deep distrust of the latter groups can be partially justified as a lack of confidence that their (...)
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  • The Principle-at-Risk Analysis (PaRA): Operationalising Digital Ethics by Bridging Principles and Operations of a Digital Ethics Advisory Panel.André T. Nemat, Sarah J. Becker, Simon Lucas, Sean Thomas, Isabel Gadea & Jean Enno Charton - 2023 - Minds and Machines 33 (4):737-760.
    Recent attempts to develop and apply digital ethics principles to address the challenges of the digital transformation leave organisations with an operationalisation gap. To successfully implement such guidance, they must find ways to translate high-level ethics frameworks into practical methods and tools that match their specific workflows and needs. Here, we describe the development of a standardised risk assessment tool, the Principle-at-Risk Analysis (PaRA), as a means to close this operationalisation gap for a key level of the ethics infrastructure at (...)
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  • Consent in organ transplantation: putting legal obligations and guidelines into practice.James Neuberger & Farrah Raza - 2022 - BMC Medical Ethics 23 (1):1-10.
    Consent in medical practice is a process riddled with layers of complexities. To some extent, this is inevitable given that different medical conditions raise different sets of issues for doctors and patients. Informed consent and risk assessment are highly significant public health issues that have become even more prominent during the course of the Covid-19 pandemic. In this article we identity relevant factors for clinicians to consider when ensuring consent for solid organ transplantation. Consent to undergo solid organ transplantation is (...)
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  • Exploring Consent to Use Real-World Data in Lung Cancer Radiotherapy: Decision of a Citizens’ Jury for an ‘Informed Opt-Out’ Approach.Arbaz Kapadi, Hannah Turner-Uaandja, Rebecca Holley, Kate Wicks, Leila Hamrang, Brian Turner, Tjeerd van Staa, Catherine Bowden, Annie Keane, Gareth Price, Corinne Faivre-Finn, David French, Caroline Sanders, Søren Holm & Sarah Devaney - forthcoming - Health Care Analysis:1-22.
    An emerging approach to complement randomised controlled trial (RCT) data in the development of radiotherapy treatments is to use routinely collected ‘real-world’ data (RWD). RWD is the data collected as standard-of-care about all patients during their usual cancer care pathway. Given the nature of this data, important questions remain about the permissibility and acceptability of using RWD in routine practice. We involved and engaged with patients, carers and the public in a two-day citizens’ jury to understand their views and obtain (...)
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