Table 5.

Necessary conditions for trustworthy governance of systems that link and aggregate personal administrative, medical and biological data

Characteristic	Example
Representativeness	• Consideration of the full range of individual and public interests
Accountability	• Ability to audit data use and management within operating organization; repercussions when violations occur
Transparency	• Overview of operations and decision making are open to scrutiny
Reflective Practice	• Regular review of operations and data use, including assessment of fit with original intent, approvals and consents
Sustainability	• Consideration of long-term financing and management

Table adapted from O’Doherty et al. [75]