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  1. Defining ethical challenge(s) in healthcare research: a rapid review.Richard Huxtable, Lucy Ellen Selman, Mariana Dittborn & Guy Schofield - 2021 - BMC Medical Ethics 22 (1):1-17.
    BackgroundDespite its ubiquity in academic research, the phrase ‘ethical challenge(s)’ appears to lack an agreed definition. A lack of a definition risks introducing confusion or avoidable bias. Conceptual clarity is a key component of research, both theoretical and empirical. Using a rapid review methodology, we sought to review definitions of ‘ethical challenge(s)’ and closely related terms as used in current healthcare research literature.MethodsRapid review to identify peer-reviewed reports examining ‘ethical challenge(s)’ in any context, extracting data on definitions of ‘ethical challenge(s)’ (...)
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  • Motives of contributing personal data for health research: (non-)participation in a Dutch biobank.R. Broekstra, E. L. M. Maeckelberghe, J. L. Aris-Meijer, R. P. Stolk & S. Otten - 2020 - BMC Medical Ethics 21 (1):1-11.
    BackgroundLarge-scale, centralized data repositories are playing a critical and unprecedented role in fostering innovative health research, leading to new opportunities as well as dilemmas for the medical sciences. Uncovering the reasons as to why citizens do or do not contribute to such repositories, for example, to population-based biobanks, is therefore crucial. We investigated and compared the views of existing participants and non-participants on contributing to large-scale, centralized health research data repositories with those of ex-participants regarding the decision to end their (...)
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