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Response to commentaries on ‘Should free-text data in electronic medical records be shared for research? A citizens’ jury study in the UK’
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    Response to Ford and Oswald
    • Stacy M. Carter, Professor Australian Centre for Health Engagement, Evidence and Values, University of Wollongong

    It is useful to have a further opportunity to understand Ford and Oswald’s methodological decision making. Methodology, as always, is contestable.

    There is one key misconstrual in the authors’ response that I’d like to address. Like all empirical bioethicists, I am committed to conducting respectful and systematic research designed to learn from people by taking their perspectives seriously. Like all deliberative researchers, I regularly provide inclusive groups of members of the public with information and support to deliberate on matters of public importance, with the goal of ensuring that their recommendations have consequences in policy. The final criticism made by the authors in their response is thus somewhat wide of the mark.

    What I had proposed in my commentary was not that only the work of philosophers should inform policymakers, but that the basis for drawing normative conclusions in empirical bioethics is different for different kinds of research.

    In a qualitative study or survey of people’s ethical judgements about their everyday practices, for example, empirical work is likely to produce evidence of diversity of values and judgements, to different levels of detail. A bioethics researcher then inevitably needs to do the work of developing normative conclusions through their analysis and interpretation.

    My central point was that deliberative research has different foundations. It arises from democratic theory, and is thus intende...

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    Conflict of Interest:
    None declared.