[HTML][HTML] Patient perspectives and preferences for consent in the digital health context: State-of-the-art literature review

I Kassam, D Ilkina, J Kemp, H Roble… - Journal of medical …, 2023 - jmir.org
Background The increasing integration of digital health tools into care may result in a greater
flow of personal health information (PHI) between patients and providers. Although privacy …

[HTML][HTML] Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review

A Cumyn, JF Ménard, A Barton, R Dault… - Journal of Medical …, 2023 - jmir.org
Background: Secondary use of health data has reached unequaled potential to improve
health systems governance, knowledge, and clinical care. Transparency regarding this …

[HTML][HTML] Public preferences for digital health data sharing: Discrete choice experiment study in 12 European countries

R Biasiotto, J Viberg Johansson, MB Alemu… - Journal of Medical …, 2023 - jmir.org
Background With new technologies, health data can be collected in a variety of different
clinical, research, and public health contexts, and then can be used for a range of new …

The challenges of big data for research ethics committees: A qualitative Swiss study

A Ferretti, M Ienca, MR Velarde… - Journal of Empirical …, 2022 - journals.sagepub.com
Big data trends in health research challenge the oversight mechanism of the Research
Ethics Committees (RECs). The traditional standards of research quality and the mandate of …

[HTML][HTML] One digital health intervention for monitoring human and animal welfare in smart cities: Viewpoint and use case

A Benis, M Haghi, TM Deserno… - JMIR medical …, 2023 - medinform.jmir.org
Smart cities and digital public health are closely related. Managing digital transformation in
urbanization and living spaces is challenging. It is critical to prioritize the emotional and …

What ethical approaches are used by scientists when sharing health data? An interview study

J Viberg Johansson, HB Bentzen, D Mascalzoni - BMC Medical Ethics, 2022 - Springer
Background Health data-driven activities have become central in diverse fields (research, AI
development, wearables, etc.), and new ethical challenges have arisen with regards to …

[HTML][HTML] Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review

R Baines, S Stevens, D Austin, K Anil… - Journal of Medical …, 2024 - jmir.org
Background International advances in information communication, eHealth, and other digital
health technologies have led to significant expansions in the collection and analysis of …

Implications of the genomic revolution for education research and policy

TT Morris, S von Hinke, L Pike… - British Educational …, 2024 - Wiley Online Library
Research at the intersection of social science and genomics,'sociogenomics', is transforming
our understanding of the interplay between genomics, individual outcomes and society. It …

21st Century Cures Act: ethical recommendations for new patient-facing products

BN Durieux, M DeCamp… - Journal of the American …, 2022 - academic.oup.com
Background Recent legislation ensuring patient access to their electronic health records
represents a promising national commitment to patient empowerment. Access and …

Consent as a compositional act–a framework that provides clarity for the retention and use of data

MC Rivas Velarde, C Lovis, M Ienca, C Samer… - Philosophy, Ethics, and …, 2024 - Springer
Background Informed consent is one of the key principles of conducting research involving
humans. When research participants give consent, they perform an act in which they utter …