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, 18–20, 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, 22–25, 29–32, 35, 37, 38, 40–42, 44] Protect confidentiality [7, 11, 19, 21, 23, 29–31, 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, 29–31, 33, 43, 44] Accountability [10, 15–19, 21–25, 29–32] Engagement / participation [10, 15–17, 19, 22–25, 27, 31, 32] Maintain public trust [15, 22–27, 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]