A comprehensive ethics and data governance framework for data-intensive health research: Lessons from an Italian cancer research institute

Account Res. 2023 Aug 30:1-18. doi: 10.1080/08989621.2023.2248884. Online ahead of print.

Virginia Sanchini^{1

2}, Luca Marelli^{3

4

5}, Massimo Monturano⁵, Giuseppina Bonizzi⁵, Giulia Peruzzotti⁵, Roberto Orecchia⁵, Gabriella Pravettoni^{1

6}

¹ Department of Oncology and Hemato-Oncology, University of Milan, Milan, Italy.
² Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.
³ Department of Medical Biotechnology and Translational Medicine, University of Milan, Milan, Italy.
⁴ Centre for Sociological Research, KU Leuven, Leuven, Belgium.
⁵ European Institute of Oncology IRCCS, Milan, Italy.
⁶ Applied Research Division for Cognitive and Psychological Science, European Institute of Oncology IRCCS, Milan, Italy.

No abstract available

Keywords: broad consent; data governance board; ethics review; governance framework; informed consent.