The social licence for data-intensive health research: towards co-creation, public value and trust
Abstract Background The rise of Big Data-driven health research challenges the assumed
contribution of medical research to the public good, raising questions about whether the …
contribution of medical research to the public good, raising questions about whether the …
Responsible data sharing in international health research: a systematic review of principles and norms
S Kalkman, M Mostert, C Gerlinger, JJM van Delden… - BMC medical …, 2019 - Springer
Background Large-scale linkage of international clinical datasets could lead to unique
insights into disease aetiology and facilitate treatment evaluation and drug development …
insights into disease aetiology and facilitate treatment evaluation and drug development …
[图书][B] Experiment Earth: Responsible innovation in geoengineering
J Stilgoe - 2015 - taylorfrancis.com
Experiments in geoengineering–intentionally manipulating the Earth's climate to reduce
global warming–have become the focus of a vital debate about responsible science and …
global warming–have become the focus of a vital debate about responsible science and …
Health research with big data: time for systemic oversight
E Vayena, A Blasimme - The journal of law, medicine & …, 2018 - journals.sagepub.com
To address the ethical challenges in big data health research we propose the concept of
systemic oversight. This approach is based on six defining features (adaptivity, flexibility …
systemic oversight. This approach is based on six defining features (adaptivity, flexibility …
What can data trusts for health research learn from participatory governance in biobanks?
R Milne, A Sorbie, M Dixon-Woods - Journal of medical ethics, 2022 - jme.bmj.com
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 …
challenge to the social licence. In this article, we reflect on what the data trust model, which …
Understanding public reactions to commercialization of biobanks and use of biobank resources
Biobanks will be essential to facilitate the translation of genomic research into real
improvements to healthcare. Biobanking is a long-term commitment, requiring public support …
improvements to healthcare. Biobanking is a long-term commitment, requiring public support …
[HTML][HTML] A marathon, not a sprint–neuroimaging, Open Science and ethics
MJS Beauvais, BM Knoppers, J Illes - Neuroimage, 2021 - Elsevier
Open Science is calling for a radical re-thinking of existing scientific practices. Within the
neuroimaging community, Open Science practices are taking the form of open data …
neuroimaging community, Open Science practices are taking the form of open data …
Recognizing the right not to know: conceptual, professional, and legal implications
G Laurie - Journal of Law, Medicine & Ethics, 2014 - cambridge.org
The right not to know is a contested matter. This can be because the inversion of the normal
framing of entitlement to information about one's own health is thought to be illogical and …
framing of entitlement to information about one's own health is thought to be illogical and …
Public trust and trustworthiness in biobanking: The need for more reflexivity
Low levels of public trust in biobanks are perceived to be a deterrent to participation and a
threat to their sustainability. Acting in a “trustworthy” manner is seen to be one approach to …
threat to their sustainability. Acting in a “trustworthy” manner is seen to be one approach to …