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  1. Ethical navigation of biobanking establishment in Ukraine: learning from the experience of developing countries.Oksana N. Sulaieva, Oksana Artamonova, Oleksandr Dudin, Rostyslav Semikov, Dmytro Urakov, Yurii Zakharash, Arman Kacharian, Vasyl Strilka, Ivan Mykhalchuk, Oleksii Haidamak, Olena Serdyukova & Nazarii Kobyliak - forthcoming - Journal of Medical Ethics.
    Building a biobank network in developing countries is essential to foster genomic research and precision medicine for patients’ benefit. However, there are serious barriers to establishing biobanks in low-income and middle-income countries (LMICs), including Ukraine. Here, we outline key barriers and essential milestones for the successful expansion of biobanks, genomic research and personalised medicine in Ukraine, drawing from the experience of other LMICs. A lack of legal and ethical governance in conjunction with limited awareness about biobanking and community distrust are (...)
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  • 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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  • Ethical Issues in Consent for the Reuse of Data in Health Data Platforms.Alex McKeown, Miranda Mourby, Paul Harrison, Sophie Walker, Mark Sheehan & Ilina Singh - 2021 - Science and Engineering Ethics 27 (1):1-21.
    Data platforms represent a new paradigm for carrying out health research. In the platform model, datasets are pooled for remote access and analysis, so novel insights for developing better stratified and/or personalised medicine approaches can be derived from their integration. If the integration of diverse datasets enables development of more accurate risk indicators, prognostic factors, or better treatments and interventions, this obviates the need for the sharing and reuse of data; and a platform-based approach is an appropriate model for facilitating (...)
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