Skip to main content

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

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

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