Table 2 Academic publications included for review
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 |