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Table 4 Themes and principles

From: Responsible data sharing in international health research: a systematic review of principles and norms

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]
Interoperability [18, 19, 27]
Scientific validity [25, 29, 35]
Societal benefit [22, 26, 31]
Duty to share [7, 8]
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]
Reciprocity [10, 23, 30, 35]
Risk-benefit evaluation [13, 14, 16, 32]
Equity and fairness [10, 12, 17, 33]
Protection of intellectual property [18, 34, 35]
Attribution [23, 30, 34]
Proportionality [24, 29, 30]
Ownership [21, 38]
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]
Legal compliance [24, 25]
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]