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Table 5 Necessary conditions for trustworthy governance of systems that link and aggregate personal administrative, medical and biological data

From: Community perspectives on the benefits and risks of technologically enhanced communicable disease surveillance systems: a report on four community juries

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