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  1. “Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore.Tamra Lysaght, Angela Ballantyne, Vicki Xafis, Serene Ong, Gerald Owen Schaefer, Jeffrey Min Than Ling, Ainsley J. Newson, Ing Wei Khor & E. Shyong Tai - 2020 - BMC Medical Ethics 21 (1):1-11.
    Background We aimed to examine the ethical concerns Singaporeans have about sharing health-data for precision medicine and identify suggestions for governance strategies. Just as Asian genomes are under-represented in PM, the views of Asian populations about the risks and benefits of data sharing are under-represented in prior attitudinal research. Methods We conducted seven focus groups with 62 participants in Singapore from May to July 2019. They were conducted in three languages and analysed with qualitative content and thematic analysis. Results Four (...)
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  • Towards trust-based governance of health data research.Marieke A. R. Bak, M. Corrette Ploem, Hanno L. Tan, M. T. Blom & Dick L. Willems - 2023 - Medicine, Health Care and Philosophy 26 (2):185-200.
    Developments in medical big data analytics may bring societal benefits but are also challenging privacy and other ethical values. At the same time, an overly restrictive data protection regime can form a serious threat to valuable observational studies. Discussions about whether data privacy or data solidarity should be the foundational value of research policies, have remained unresolved. We add to this debate with an empirically informed ethical analysis. First, experiences with the implementation of the General Data Protection Regulation (GDPR) within (...)
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  • The social licence for data-intensive health research: towards co-creation, public value and trust.Johannes J. M. van Delden, Menno Mostert, Ghislaine J. M. W. van Thiel, Shona Kalkman & Sam H. A. Muller - 2021 - BMC Medical Ethics 22 (1):1-9.
    BackgroundThe rise of Big Data-driven health research challenges the assumed contribution of medical research to the public good, raising questions about whether the status of such research as a common good should be taken for granted, and how public trust can be preserved. Scandals arising out of sharing data during medical research have pointed out that going beyond the requirements of law may be necessary for sustaining trust in data-intensive health research. We propose building upon the use of a social (...)
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  • Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence.Shona Kalkman, Johannes van Delden, Amitava Banerjee, Benoît Tyl, Menno Mostert & Ghislaine van Thiel - 2022 - Journal of Medical Ethics 48 (1):3-13.
    IntroductionInternational sharing of health data opens the door to the study of the so-called ‘Big Data’, which holds great promise for improving patient-centred care. Failure of recent data sharing initiatives indicates an urgent need to invest in societal trust in researchers and institutions. Key to an informed understanding of such a ‘social license’ is identifying the views patients and the public may hold with regard to data sharing for health research.MethodsWe performed a narrative review of the empirical evidence addressing patients’ (...)
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  • Establishing a social licence for Financial Technology: Reflections on the role of the private sector in pursuing ethical data practices.Aad van Moorsel, Karen Elliott, Kovila Coopamootoo, Peter Carmichael, Ehsan Toreini & Mhairi Aitken - 2020 - Big Data and Society 7 (1).
    Current attention directed at ethical dimensions of data and Artificial Intelligence have led to increasing recognition of the need to secure and maintain public support for uses of people’s data. This is essential to establish a “Social Licence” for current and future practices. The notion of a “Social Licence” recognises that there can be meaningful differences between what is legally permissible and what is socially acceptable. Establishing a Social Licence entails public engagement to build relationships of trust and ensure that (...)
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