DNP-7108 v1

Bollinger, J., Zuk, P., Majumder, M., Versalovic, E., Villanueva, A., Hsu, R., McGuire, A. &, Cook-Deegan, R. (2019). What is a medical information commons? Journal of Law, Medicine & Ethics, 47(1), 41-50.
Examine governance, access, data collection, and privacy in the context of a Medical Information Commons (MICs). Stakeholders' attitudes about  MICs align with the National Academic of Sciences (NAS) vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.

Lunker, A. (2019). The new data protection regulation claims under GDPR. Journal of Information Systems & Operations Management, 13(2), 100-116.
Personal data stores (PDS) enable individuals to regain control of their personal data and a means to exercise their rights to healthcare information. PDS provides opportunities to enable more research on healthcare and enable innovative growth by opening up big data analytics.

Mouton, D., Baumann H. & Biller-Andorno N. (2018). Patient data and patient rights: Swiss healthcare stakeholders' ethical awareness regarding large patient data sets - a qualitative study. BMC Med Ethics, 19(1), 1-15.
This article provides material from which to develop further ethical reflection towards a more cooperative approach involving patients and citizens in the governance of their health-related big data.

Skatova, A. & Goulding James. (2019). Psychology of personal data donation. PLoS ONE, 14(11), 1-20.
The General Data Protection Regulation (GDPR) has reshaped how data is handled. This article discusses what would drive people to donate their personal data.

Tsui, L. & Hargreaves, S. (2019 April). Who decides personal data? Testing access principle with telecommunications companies and internet providers. International Journal of Communication, 1648-1663.
Discusses problems with data protection laws of the Personal Data Privacy Ordinance with telecommunication and internet providers.

Wilton, R. (2017). Trust and ethical data handling in the healthcare context. Health and Technology, 1-10.
This article provides material from which to develop further ethical reflection towards a more cooperative approach involving patients and citizens in the governance of their health-related big data.