Accountability ; Human Rights; Research Participation; Research Ethics; Digital privacy ; Informed consent; Big Data; Big Data Health Research ; Privacy
Ferretti Agata, Ienca Marcello, Sheehan Mark, Blasimme Alessandro, Dove Edward S., Farsides Bobbie, Friesen Phoebe, Kahn Jeff, Karlen Walter, Kleist Peter, Liao S. Matthew, Nebeker Camille, Samuel Gabrielle, Shabani Mahsa, Rivas Velarde Minerva, Vayena Effy (2021), Ethics review of big data research: What should stay and what should be reformed?, in BMC Medical Ethics
, 22(1), 51-51.
Ienca Marcello, Vayena Effy (2021), Ethical requirements for responsible research with hacked data, in Nature Machine Intelligence
, 3(9), 744-748.
Ferretti Agata, Hedrich Nadja, Lovey Thibault, Vayena Effy, Schlagenhauf Patricia (2021), Mobile apps for travel medicine and ethical considerations: A systematic review, in Travel Medicine and Infectious Disease
, 43, 102143-102143.
Blasimme Alessandro, Ferretti Agata, Vayena Effy (2021), Digital Contact Tracing Against COVID-19 in Europe: Current Features and Ongoing Developments, in Frontiers in Digital Health
, 3, 660823.
FerrettiAgata (2021), Ethics and Governance of Big Data in Health Research and Digital Health Applications
, /, ETH Zurich.
Ferretti Agata, Ienca Marcello, Hurst Samia, Vayena Effy (2020), Big Data, Biomedical Research, and Ethics Review: New Challenges for IRBs, in Ethics & Human Research
, 42(5), 17-28.
Ferretti Agata, Ronchi Elettra, Vayena Effy (2019), From principles to practice: benchmarking government guidance on health apps, in The Lancet Digital Health
, 1(2), e55-e57.
Ienca Marcello, Vayena Effy (2018), Dual use in the 21st century: emerging risks and global governance, in Swiss Medical Weekly
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.