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  1. Trust and The Acquisition and Use of Public Health Information.Stephen Holland, Jamie Cawthra, Tamara Schloemer & Peter Schröder-Bäck - 2022 - Health Care Analysis 30 (1):1-17.
    Information is clearly vital to public health, but the acquisition and use of public health data elicit serious privacy concerns. One strategy for navigating this dilemma is to build 'trust' in institutions responsible for health information, thereby reducing privacy concerns and increasing willingness to contribute personal data. This strategy, as currently presented in public health literature, has serious shortcomings. But it can be augmented by appealing to the philosophical analysis of the concept of trust. Philosophers distinguish trust and trustworthiness from (...)
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  • What Can Data Trusts for Health Research Learn From Participatory Governance in Biobanks?Richard Milne, Annie Sorbie & Mary Dixon-Woods - 2022 - Journal of Medical Ethics 48 (5):323-328.
    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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  • Community Partnered Participatory Research in Southeast Louisiana Communities Threatened by Climate Change: The C-Learn Experience.Benjamin F. Springgate, Olivia Sugarman, Kenneth B. Wells, Lawrence A. Palinkas, Diana Meyers, Ashley Wennerstrom, Arthur Johnson, Catherine Haywood, Daniel Sarpong & Richard Culbertson - 2021 - American Journal of Bioethics 21 (10):46-48.
    Community Partnered Participatory Research is grounded in the ethical principle of respect for persons participating in the research enterprise. The critical importance of respect for person...
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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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