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  1.  24
    Research involving adults lacking capacity to consent: the impact of research regulation on ‘evidence biased’ medicine.Victoria Shepherd - 2016 - BMC Medical Ethics 17 (1):55.
    Society is failing in its moral obligation to improve the standard of healthcare provided to vulnerable populations, such as people who lack decision making capacity, by a misguided paternalism that seeks to protect them by excluding them from medical research. Uncertainties surround the basis on which decisions about research participation is made under dual regulatory regimes, which adds further complexity. Vulnerable individuals’ exclusion from research as a result of such regulation risks condemning such populations to poor quality care as a (...)
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  2.  14
    Ethical Understandings of Proxy Decision Making for Research Involving Adults Lacking Capacity: A Systematic Review (Framework Synthesis) of Empirical Research.Victoria Shepherd, Kerenza Hood, Mark Sheehan, Richard Griffith, Amber Jordan & Fiona Wood - 2018 - AJOB Empirical Bioethics 9 (4):267-286.
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  3.  8
    Constructing Authentic Decisions: Proxy Decision Making for Research Involving Adults Who Lack Capacity to Consent.Victoria Shepherd, Mark Sheehan, Kerenza Hood, Richard Griffith & Fiona Wood - 2021 - Journal of Medical Ethics 47 (12):e42-e42.
    Research involving adults who lack capacity to consent relies on proxy decision making. Proxy decisions about participation are ethically complex, with a disparity between normative accounts and empirical evidence. Concerns about the accuracy of proxies’ decisions arise, in part, from the lack of an ethical framework which takes account of the complex and morally pluralistic world in which proxy decisions are situated. This qualitative study explored the experiences of family members who have acted as a research proxy in order to (...)
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  4.  25
    Healthcare Professionals’ Understanding of the Legislation Governing Research Involving Adults Lacking Mental Capacity in England and Wales: A National Survey.Victoria Shepherd, Richard Griffith, Mark Sheehan, Fiona Wood & Kerenza Hood - 2018 - Journal of Medical Ethics 44 (9):632-637.
    ObjectiveTo examine health and social care professionals’ understanding of the legislation governing research involving adults lacking mental capacity in England and Wales.MethodsA cross-sectional online survey was conducted using a series of vignettes. Participants were asked to select the legally authorised decision-maker in each scenario and provide supporting reasons. Responses were compared with existing legal frameworks and analysed according to their level of concordance.ResultsOne hundred and twenty-seven professionals participated. Levels of discordance between responses and the legal frameworks were high across all (...)
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    (Re)Conceptualising ‘Good’ Proxy Decision-Making for Research: The Implications for Proxy Consent Decision Quality.Victoria Shepherd - 2022 - BMC Medical Ethics 23 (1):1-11.
    People who are unable to make decisions about participating in research rely on proxies to make a decision based on their wishes and preferences. However, patients rarely discuss their preferences about research and proxies find it challenging to determine what their wishes would be. While the process of informed consent has traditionally been the focus of research to improve consent decisions, the more conceptually complex area of what constitutes ‘good’ proxy decision-making for research has remained unexplored. Interventions are needed to (...)
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