Table 4 Themes and principles
Main themes | Norms and principles |
|---|---|
Societal benefits and value | Accessibility [7, 10, 15, 19, 23, 25, 26, 30, 32, 34] Data quality [10, 15, 18,19,20, 23, 24, 29, 30, 35] Sustainability [10, 18, 19, 23, 25, 29, 30] Scientific progress/value [10, 12, 17, 19] Promote health and well-being [9, 10, 37] Scientific validity [25, 29, 35] Collaboration and capacity building [17, 22] Health-related public interest [22] Improved clinical care [8] Enhance healthcare decision-making [8] Social value [17] Individual benefit [22] Improve public health [12] Efficiency [18] |
Distribution of risks, benefits and burdens | Benefit sharing [19, 23, 29, 30] Risk-benefit evaluation [13, 14, 16, 32] Equity and fairness [10, 12, 17, 33] Protection of intellectual property [18, 34, 35] Recognition and attribution [10] |
Respect for individuals and groups | Respect/protect privacy [11, 12, 15, 19, 22,23,24,25, 29,30,31,32, 35, 37, 38, 40,41,42, 44] Protect confidentiality [7, 11, 19, 21, 23, 29,30,31, 37, 42] Ensure data security [10, 18, 19, 21, 23, 24, 30, 39, 44] Respect individuals [10, 16, 31, 33, 37] Respect individual rights [16, 17, 19, 37] Individual autonomy [11, 31, 35, 37] Respect dignity of individuals [31, 37] Respect (the dignity of) communities [10, 12] Prevent discrimination [19, 31] Protect life, health and well-being [37] Respect families [10] Respect welfare of individuals [17] |
Public trust and engagement | Transparency [10, 15, 18, 19, 22, 23, 26, 29,30,31, 33, 43, 44] Accountability [10, 15,16,17,18,19, 21,22,23,24,25, 29,30,31,32] Engagement / participation [10, 15,16,17, 19, 22,23,24,25, 27, 31, 32] Maintain public trust [15, 22,23,24,25,26,27, 31, 32] Maintain integrity [15, 23, 24, 30, 31] Responsibility [21, 23, 25, 29, 39, 42] Professionalism [10, 18, 19, 22] Health democracy [29] Solidarity [45] |