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Table 2 Academic publications included for review

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

No. Authors (year) Organisation, Working group or Institution Country Status
1 Board of Directors of the American College of Medical Genetics and Genomics, 2017 [44] American College of Medical Genetics and Genomics (ACMG) USA Policy statement
2 Alfonso, 2017 [7] International Committee of Medical Journal Editors (ICMJE) International Policy statement
3 Allen et al, 2014 [28] Beacon Community Cooperative Agreement Program USA Lessons learned
4 Andrew et al, 2016 [38] Research collaboration to link data from the Australian Stroke
Clinical Registry (AuSCR), the National Death Index, and state held hospital data
Australia Process evaluation
5 Antman et al, 2015 [25] American Heart Association Data Summit 2015 USA Summit report
6 Auffray et al, 2016 [13] Expert workshop organized by the European Commission (EC) EU Expert workshop
7 Baker et al, 2016 [15] Fair Information Practices Principles (FIPPs) by the Department of Health and Human Services (USA) USA  
8 Banzi et al, 2014 [41] Discussion of the European Medicines Agency (EMA) draft policy on publication and access to clinical trial data EU Commentary
9 Bredenoord et al, 2015 [29] International Stem Cell Forum Ethics Working Party International Policy statement
10 Chan et al, 2016 [21] UK National Data Guardian for Health and Care’s Review of Data Security, Consent and Opt-Outs UK  
11 Chokshi et al, 2006 [34] MalariaGEN (Malaria Genomic Epidemiology Network) International Process evaluation
12 Deverka et al, 2017 [27] Meet-up of representatives of a range of stakeholders, including healthcare systems, clinical laboratories, technology companies, academia, government, nongovernmental organizations, and patient and community advocacy groups International Policy recommendations
13 Dove et al, 2013 [24] Safe Harbor Framework for International Ethics Equivalency International Policy framework
14 Duchange et al, 2014 [36] EU LeukoTreat program EU Process evaluation
15 Dyke & Hubbard, 2011 [11] Wellcome Trust Sanger, Human Genome Project International Process evaluation
16 Dyke et al, 2016 [40] Global Alliance for Genomics and Health International Guidance recommendations
17 Floridi et al, 2018 [33] European Medical Information Framework (EMIF) project EU Process evaluation
18 Knoppers & Thorogood, 2017 [6] Global Alliance for Genomics and Health International Governance framework
19 Knoppers, 2014 [23] Global Alliance for Genomics and Health International Governance framework
20 Knoppers et al, 2011 [26] Public Population Project in Genomics (P3G), the European Network for Genetic and Genomic Epidemiology (ENGAGE) and the Centre for Health, Law and Emerging Technologies (HeLEX) International Code of Conduct
21 Kostkova et al, 2016 [43] Stakeholder roundtable debate, set up by University College London (UCL) UK Policy recommendations
22 Kuehn, 2014 [8] Institute of Medicine (IOM) USA Policy framework
23 Laurie & Sethi, 2013 [32] Scottish Health Informatics Programme (SHIP) UK Guidance recommendations
24 Lea et al, 2016 [14] The Farr Institute and use of Data Safe Havens UK Process evaluation
25 Mascalzoni et al, 2015 [35] Stakeholder workshop, considered by the Rare Diseases Connect Patient Ethics Council and the Rare Diseases Connect Patient Advisory Council, which endorsed the Draft Charter as the patient consulting bodies of Rare Diseases Connect International International Charter of Principles
26 Paltoo et al, 2014 [46] National Institutes of Health USA Policy statement
27 Prainsack & Buyx, 2013 [45] King’s College and University College London UK Governance model
28 Rodriguez et al, 2009 [20] International summit, convened by the National Cancer Institute (NCI) of the National Institutes of Health (NIH) International Amsterdam Principles
29 Shenkin et al, 2017 [39] BRAINS (Brain Imaging in Normal Subjects) Expert Working Group   Policy recommendations
30 Sugano et al, 2014 [30] Regulatory and Ethics Working Group, Global Alliance for Genomics & Health International Code of Conduct
31 Tucker et al, 2016 [42] EFSPI (European Federation of Statisticians in the Pharmaceutical Industry) and PSI (Statisticians in the Pharmaceutical Industry) Data Sharing Working Group International Policy recommendations