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)
Biobanker och register i forskning
Hanteringen av biobanker och register behöver möta juridiska och etiska krav från forskarsamhället, allmänheten och individen.
Hantera oväntade fynd
Hur ska man hantera oväntade fynd i biobanksforskning och genomstudier? Jennifer Viberg Johanssons doktorandprojekt har undersökt argumenten för och mot att ge information till forskningsdeltagare.