Governance of health data in cyberspace
In the 21st century, successful healthcare delivery and medical research are increasingly dependent of the collection and distribution of information in cyberspace. Societal benefits could be enormous. However, the risks associated with misuse of data are significant.
To maintain public trust it is important to develop resilient governance mechanism for health cyberspace. It is central to meet the social expectations of security and privacy of health data, while still enabling broad use of health data to benefit society.
Aims
The central aim of this project is to develop recommendations for resilient governance mechanisms for cyberhealth. This inter-disciplinary project will use a variety of ways to understand the issue of risk and resilience in the governance of health cyberspace in northern Europe. The project will investigate ethical issues that arise with online data. Different empirical methods will be used to investigate what citizens perceive their risk to be when data is used in health cyberspace.
Funding
This project receives funding from Nordforsk from April 2018-April 2021.
Contact
- Deborah Mascalzoni, PhD Bioethics, Researcher
- Jorien Veldwijk, PhD, Risk Economics
- Jennifer Viberg Johansson, PhD, Postdoc Researcher
Collaborators outside CRB
- Jane Kaye, University of Oxford, HeLEX (project leader)
Biobanks and registries in research
We aim for a biobank and registry management that satisfies ethical and legal demands from the research community, the public and the individual.
Handling incidental findings
How should we handle incidental findings in biobank and -omics research? Jennifer Viberg Johansson's PhD project examined the arguments for and against disclosure of incidental findings.