Abstract
We previously proposed a structure for recording consent-based data use ‘categories’ and ‘requirements’ – Consent Codes – with a view to supporting maximum use and integration of genomic research datasets, and reducing uncertainty about permissible re-use of shared data. Here we discuss clarifications and subsequent updates to the Consent Codes (v4) based on new areas of application (e.g., the neurosciences, biobanking, H3Africa), policy developments (e.g., return of research results), and further practical considerations, including developments in automated approaches to consent management.
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1 Montreal Neurological Institute, McGill University, McGill Centre for Integrative Neuroscience, Department of Neurology & Neurosurgery, Faculty of Medicine and Health Sciences, Montreal, Canada (GRID:grid.14709.3b) (ISNI:0000 0004 1936 8649)
2 Health Level 7 (HL7) & Veterans Health Administration, Washington, D.C, USA (GRID:grid.239186.7) (ISNI:0000 0004 0481 9574)
3 University of Cape Town, Computational Biology Division, IDM, Faculty of Health Sciences, Cape Town, South Africa (GRID:grid.7836.a) (ISNI:0000 0004 1937 1151); University of Cape Town, Division of Human Genetics, Faculty of Health Sciences, Cape Town, South Africa (GRID:grid.7836.a) (ISNI:0000 0004 1937 1151)
4 University of Cape Town, Division of Human Genetics, Faculty of Health Sciences, Cape Town, South Africa (GRID:grid.7836.a) (ISNI:0000 0004 1937 1151)
5 Broad Institute of MIT and Harvard, Cambridge, USA (GRID:grid.66859.34) (ISNI:0000 0004 0546 1623)
6 European Bioinformatics Institute, European Molecular Biology Laboratory, Hinxton, UK (GRID:grid.225360.0) (ISNI:0000 0000 9709 7726)
7 University of Cape Town, Computational Biology Division, IDM, Faculty of Health Sciences, Cape Town, South Africa (GRID:grid.7836.a) (ISNI:0000 0004 1937 1151)
8 Centre for Genomic Regulation, Barcelona, Spain (GRID:grid.11478.3b) (ISNI:0000 0004 1766 3695); Universitat Pompeu Fabra, Barcelona, Spain (GRID:grid.5612.0) (ISNI:0000 0001 2172 2676)
9 McGill University Health Centre & Montreal Neurological Institute, McGill University, Department of Pathology, Faculty of Medicine and Health Sciences, Montreal, Canada (GRID:grid.14709.3b) (ISNI:0000 0004 1936 8649)