Accountability ; Human Rights; Research Participation; Research Ethics; Digital privacy ; Informed consent; Big Data; Big Data Health Research ; Privacy
Ienca Marcello, Ferretti Agata, Hurst Samia, Puhan Milo, Lovis Christian, Vayena Effy (2018), Considerations for ethics review of big data health research: A scoping review, in PLOS ONE
, 13(10), e0204937-e0204937.
Vayena Effy, Ienca Marcello (2018), Digital Medicine and Ethics: Rooting for Evidence, in The American Journal of Bioethics
, 18(9), 49-51.
Ienca Marcello, Vayena Effy, Blasimme Alessandro (2018), Big data and dementia: charting the route ahead for research, ethics and policy., in Frontiers in Medicine
, 5(13), 00.
Ferretti Agata, Schneider Manuel, Blasimme Alessandro (2018), Machine Learning in Medicine., in European Data Protection Law Review
, 4(3), 320-332.
This research project aims to develop an ethical framework for big data uses in health research. The framework will fill a current policy gap in how to ethically use a variety of data sets, that extend beyond the typical biomedical data, to conduct health research. Through a robust methodology we will develop: a typology of the ethical issues when big data are used in health; a set of ethical norms that address the ethical issues; and finally tools that can be used by researchers and ethics review committees to develop and review big data health research. BEHALF is the kind of innovative approach that is urgently needed in order for big data health research to fulfill its potential in Switzerland and globally.