{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,18]],"date-time":"2026-01-18T23:16:42Z","timestamp":1768778202158,"version":"3.49.0"},"reference-count":46,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2022,12,15]],"date-time":"2022-12-15T00:00:00Z","timestamp":1671062400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2022,12,15]],"date-time":"2022-12-15T00:00:00Z","timestamp":1671062400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Neuroinform"],"published-print":{"date-parts":[[2023,1]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>We previously proposed a structure for recording consent-based data use \u2018categories\u2019 and \u2018requirements\u2019\u00a0\u2013\u00a0Consent Codes\u00a0\u2013\u00a0with 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.<\/jats:p>","DOI":"10.1007\/s12021-022-09577-4","type":"journal-article","created":{"date-parts":[[2022,12,15]],"date-time":"2022-12-15T05:21:53Z","timestamp":1671081713000},"page":"89-100","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Consent Codes: Maintaining Consent in an Ever-expanding Open Science Ecosystem"],"prefix":"10.1007","volume":"21","author":[{"given":"Stephanie O. M.","family":"Dyke","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kathleen","family":"Connor","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Victoria","family":"Nembaware","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nchangwi S.","family":"Munung","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kathy","family":"Reinold","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Giselle","family":"Kerry","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mamana","family":"Mbiyavanga","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lyndon","family":"Zass","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mauricio","family":"Moldes","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Samir","family":"Das","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"John M.","family":"Davis","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jordi Rambla","family":"De Argila","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J. Dylan","family":"Spalding","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alan C.","family":"Evans","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nicola","family":"Mulder","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jason","family":"Karamchandani","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2022,12,15]]},"reference":[{"issue":"1","key":"9577_CR1","doi-asserted-by":"publisher","first-page":"68","DOI":"10.1038\/gim.2014.151","volume":"17","author":"ACMG Board of Directors","year":"2015","unstructured":"ACMG Board of Directors. (2015). ACMG policy statement: updated recommendations regarding analysis and reporting of secondary findings in clinical genome-scale sequencing. Genetics in Medicine: Official Journal of the American College of Medical Genetics, 17(1), 68\u201369.","journal-title":"Genetics in Medicine: Official Journal of the American College of Medical Genetics"},{"issue":"2","key":"9577_CR2","doi-asserted-by":"publisher","first-page":"100031","DOI":"10.1016\/j.xgen.2021.100031","volume":"1","author":"MN Cabili","year":"2021","unstructured":"Cabili, M. N., Lawson, J., Saltzman, A., Rushton, G., O\u2019Rourke, P., Wilbanks, J., Lyman Rodriguez, L., Nyronen, T., Courtot, M., Donnelly, S., & Philippakis, A. A. (2021). Empirical validation of an automated approach to data use oversight. Cell Genomics, 1(2), 100031.","journal-title":"Cell Genomics"},{"key":"9577_CR3","doi-asserted-by":"publisher","first-page":"180039","DOI":"10.1038\/sdata.2018.39","volume":"5","author":"MN Cabili","year":"2018","unstructured":"Cabili, M. N., Carey, K., Dyke, S. O. M., Brookes, A. J., Fiume, M., Jeanson, F., et al. (2018). Simplifying research access to genomics and health data with Library Cards. Scientific Data, 5, 180039.","journal-title":"Scientific Data"},{"key":"9577_CR4","unstructured":"Caulfield, Mark; Davies, Jim; Dennys, Martin; Elbahy, Leila; Fowler, Tom; Hill, Sue; et al. (2017): The National Genomics Research and Healthcare Knowledgebase. figshare. Dataset. https:\/\/doi.org\/10.6084\/m9.figshare.4530893.v5"},{"issue":"1","key":"9577_CR5","doi-asserted-by":"publisher","first-page":"e1007808","DOI":"10.1371\/journal.pgen.1007808","volume":"15","author":"C Chi","year":"2019","unstructured":"Chi, C., Shao, X., Rhead, B., Gonzales, E., Smith, J. B., Xiang, A. H., et al. (2019). Admixture mapping reveals evidence of differential multiple sclerosis risk by genetic ancestry. PLoS Genetics, 15(1), e1007808.","journal-title":"PLoS Genetics"},{"issue":"12","key":"9577_CR6","doi-asserted-by":"publisher","first-page":"e1007752","DOI":"10.1371\/journal.pgen.1007752","volume":"14","author":"MS Cline","year":"2018","unstructured":"Cline, M. S., Liao, R. G., Parsons, M. T., Paten, B., Alquaddoomi, F., Antoniou, A., et al. (2018). BRCA Challenge: BRCA Exchange as a global resource for variants in BRCA1 and BRCA2. PLoS genetics, 14(12), e1007752.","journal-title":"PLoS genetics"},{"key":"9577_CR7","unstructured":"Council for International Organizations of Medical Sciences (CIOMS) in collaboration with the World Health Organization (WHO). (2016) International Ethical Guidelines for Health-related Research involving Humans. Available from https:\/\/cioms.ch\/working_groups\/bioethics\/"},{"key":"9577_CR8","doi-asserted-by":"publisher","unstructured":"Das, S., Abou-Haidar, R., Sun, S. D. L. W., Rabalais, H., Rosli, Z., Chatpar, K., Boivin, M. N., Tabatabaei, M., Rogers, C., Legault, M., Lo, D., Degroot, C., Dagher, A., Dyke, S. O. M., Durcan, T. M., Seyller, A., Doyon, J., Poupon, V., Fon, E. A., Genge, A., Rouleau, G. A., Karamchandani, J., Evans, A. C., et al. (2021). The C-BIG Repository: An institution-level open science platform. Neuroinformatics. https:\/\/doi.org\/10.1007\/s12021-021-09516-9","DOI":"10.1007\/s12021-021-09516-9"},{"issue":"Pt B","key":"9577_CR9","doi-asserted-by":"publisher","first-page":"1188","DOI":"10.1016\/j.neuroimage.2015.08.076","volume":"124","author":"S Das","year":"2016","unstructured":"Das, S., Glatard, T., MacIntyre, L. C., Madjar, C., Rogers, C., Rousseau, M. E., et al. (2016). The MNI data-sharing and processing ecosystem. NeuroImage, 124(Pt B), 1188\u20131195.","journal-title":"NeuroImage"},{"key":"9577_CR10","doi-asserted-by":"publisher","first-page":"53","DOI":"10.3389\/fninf.2016.00053","volume":"10","author":"S Das","year":"2017","unstructured":"Das, S., Glatard, T., Rogers, C., Saigle, J., Paiva, S., MacIntyre, L., et al. (2017). Cyberinfrastructure for open science at the montreal neurological institute. Frontiers in Neuroinformatics, 10, 53.","journal-title":"Frontiers in Neuroinformatics"},{"issue":"12","key":"9577_CR11","doi-asserted-by":"publisher","first-page":"1676","DOI":"10.1038\/ejhg.2016.115","volume":"24","author":"SO Dyke","year":"2016","unstructured":"Dyke, S. O., Kirby, E., Shabani, M., Thorogood, A., Kato, K., & Knoppers, B. M. (2016). Registered access: A triple-a approach. European Journal of Human Genetics: EJHG, 24(12), 1676\u20131680.","journal-title":"European Journal of Human Genetics : EJHG."},{"issue":"1","key":"9577_CR12","doi-asserted-by":"publisher","first-page":"e1005772","DOI":"10.1371\/journal.pgen.1005772","volume":"12","author":"SO Dyke","year":"2016","unstructured":"Dyke, S. O., Philippakis, A. A., Rambla De Argila, J., Paltoo, D. N., Luetkemeier, E. S., Knoppers, B. M., et al. (2016). Consent Codes: Upholding Standard Data Use Conditions. PLoS Genetics, 12(1), e1005772.","journal-title":"PLoS Genetics"},{"key":"9577_CR13","volume-title":"Responsible genomic data sharing: Challenges and approaches","author":"SOM Dyke","year":"2020","unstructured":"Dyke, S. O. M. (2020). Genomic data access policy models. In X. Jiang & H. Tang (Eds.), Responsible genomic data sharing: Challenges and approaches. London, UK: Elsevier Academic Press."},{"issue":"12","key":"9577_CR14","doi-asserted-by":"publisher","first-page":"1721","DOI":"10.1038\/s41431-018-0219-y","volume":"26","author":"SOM Dyke","year":"2018","unstructured":"Dyke, S. O. M., Linden, M., Lappalainen, I., De Argila, J. R., Carey, K., Lloyd, D., et al. (2018). Registered access: Authorizing data access. European Journal of Human Genetics: EJHG, 26(12), 1721\u20131731.","journal-title":"European Journal of Human Genetics : EJHG."},{"issue":"1","key":"9577_CR15","doi-asserted-by":"publisher","first-page":"31","DOI":"10.1186\/s13073-019-0646-6","volume":"11","author":"SOM Dyke","year":"2019","unstructured":"Dyke, S. O. M., Saulnier, K. M., Dupras, C., Webster, A. P., Maschke, K., Rothstein, M., et al. (2019). Points-to-consider on the return of results in epigenetic research. Genome Medicine, 11(1), 31.","journal-title":"Genome Medicine."},{"key":"9577_CR16","doi-asserted-by":"publisher","first-page":"284","DOI":"10.1038\/d41586-019-01894-0","volume":"570","author":"Editorial.","year":"2019","unstructured":"Editorial. (2019). Africa\u2019s science academy leads push for ethical data use. Nature, 570, 284\u2013285.","journal-title":"Nature"},{"issue":"3","key":"9577_CR17","doi-asserted-by":"publisher","first-page":"220","DOI":"10.1038\/s41587-019-0046-x","volume":"37","author":"M Fiume","year":"2019","unstructured":"Fiume, M., Cupak, M., Keenan, S., Rambla, J., de la Torre, S., Dyke, S. O. M., et al. (2019). Federated discovery and sharing of genomic data using Beacons. Nature Biotechnology, 37(3), 220\u2013224.","journal-title":"Nature Biotechnology."},{"issue":"6291","key":"9577_CR18","doi-asserted-by":"publisher","first-page":"1278","DOI":"10.1126\/science.aaf6162","volume":"352","author":"Global Alliance for Genomics and Health","year":"2016","unstructured":"Global Alliance for Genomics and Health. (2016). GENOMICS. A federated ecosystem for sharing genomic, clinical data. Science, 352(6291), 1278\u20131280.","journal-title":"Science"},{"issue":"9","key":"9577_CR19","doi-asserted-by":"publisher","first-page":"520","DOI":"10.1038\/s41576-019-0144-0","volume":"20","author":"D Gurdasani,","year":"2019","unstructured":"Gurdasani, D., Barroso, I., Zeggini, E., & Sandhu, M. S. (2019). Genomics of disease risk in globally diverse populations. Nature Reviews Genetics, 20(9), 520\u2013535. https:\/\/doi.org\/10.1038\/s41576-019-0144-0 Epub 24 Jun 2019 PMID: 31235872.","journal-title":"Nature Reviews Genetics"},{"issue":"6190","key":"9577_CR20","doi-asserted-by":"publisher","first-page":"1346","DOI":"10.1126\/science.1251546","volume":"344","author":"C Rotimi","year":"2014","unstructured":"H3Africa Consortium, Rotimi, C., Abayomi, A., Abimiku, A., Adabayeri, V. M., Adebamowo, C., et al. (2014). Research capacity. Enabling the genomic revolution in Africa. Science, 344(6190), 1346\u20131348.","journal-title":"Science"},{"issue":"6","key":"9577_CR21","doi-asserted-by":"publisher","first-page":"818","DOI":"10.1016\/j.ajhg.2014.04.009","volume":"94","author":"GP Jarvik","year":"2014","unstructured":"Jarvik, G. P., Amendola, L. M., Berg, J. S., Brothers, K., Clayton, E. W., Chung, W., et al. (2014). Return of genomic results to research participants: The floor, the ceiling, and the choices in between. American Journal of Human Genetics, 94(6), 818\u2013826.","journal-title":"American Journal of Human Genetics."},{"key":"9577_CR22","doi-asserted-by":"crossref","unstructured":"Knoppers, B. M., Nguyen, M. T., Senecal, K., Tasse, A. M., & Zawati, M. H. (2016). Next-Generation Sequencing and the Return of Results. Cold Spring Harbor Perspectives in Medicine, 6(10).","DOI":"10.1101\/cshperspect.a026724"},{"issue":"7","key":"9577_CR23","doi-asserted-by":"publisher","first-page":"692","DOI":"10.1038\/ng.3312","volume":"47","author":"I Lappalainen","year":"2015","unstructured":"Lappalainen, I., Almeida-King, J., Kumanduri, V., Senf, A., Spalding, J. D., Ur-Rehman, S., et al. (2015). The European Genome-phenome Archive of human data consented for biomedical research. Nature Genetics., 47(7), 692\u2013695.","journal-title":"Nature Genetics."},{"key":"9577_CR24","doi-asserted-by":"crossref","unstructured":"Lawson, J., Cabili, M. N., Kerry, G., Boughtwood, T., Thorogood, A., Alper, P., Bowers, S. R., Boyles, R. R., Brookes, A. J., Brush, M., Burdett, T., Clissold, H., Donnelly, S., Dyke, S. O. M., Freeberg, M., Haendel, M., Jeanson, F., Jene, A., Hata, C., Kawashima, M., Kawashima, S., Konopko, M., Kyomugisha, I., Li, H., Linden, M., Rodriguez, L. L., Morita, M., Mulder, N., Muller, J., Nagaie, S., Nasir, J., Ogishima, S., Wang, V. O., Paglione, L., D., Pandya, R. N., Parkinson, H., Philipakis, A., Prasser, F., Rambla, J., Reinold, K., Rushton, G., Saltzman, A., Saunders, G., Sofia, H. J., Spalding, J. D., Swertz, M. A., Tulchinsky, I., van Enckevort, E. J., Varma, S., Voisin;, C., Yamamoto, N., Yamasaki, C., Zass, L., Auvil, J. G., Nyronen, T., & Courtot, T. (2021). The Data Use Ontology to integrate and streamline access to ethically and legally diverse datasets. Cell Genomics, 1, 100028.","DOI":"10.1016\/j.xgen.2021.100028"},{"key":"9577_CR25","doi-asserted-by":"publisher","first-page":"115","DOI":"10.1186\/s13073-021-00928-5","volume":"13","author":"A Lewis","year":"2021","unstructured":"Lewis, A., Knoppers, B. M., & Green, R. C. (2021). An international policy on returning genomic research results. Genome Medicine, 13, 115.","journal-title":"Genome Medicine"},{"issue":"7","key":"9577_CR26","doi-asserted-by":"publisher","first-page":"655","DOI":"10.1056\/NEJMsa1507092","volume":"375","author":"AK Manrai","year":"2016","unstructured":"Manrai, A. K., Funke, B. H., Rehm, H. L., Olesen, M. S., Maron, B. A., Szolovits, P., et al. (2016). Genetic misdiagnoses and the potential for health disparities. The New England Journal of Medicine, 375(7), 655\u2013665.","journal-title":"The New England Journal of Medicine."},{"issue":"4","key":"9577_CR27","doi-asserted-by":"publisher","first-page":"635","DOI":"10.1016\/j.ajhg.2017.03.004","volume":"100","author":"AR Martin","year":"2017","unstructured":"Martin, A. R., Gignoux, C. R., Walters, R. K., Wojcik, G. L., Neale, B. M., Gravel, S., et al. (2017). Human demographic history impacts genetic risk prediction across diverse populations. American Journal of Human Genetics, 100(4), 635\u2013649.","journal-title":"American Journal of Human Genetics."},{"key":"9577_CR28","first-page":"59","volume":"11","author":"N Mulder","year":"2018","unstructured":"Mulder, N., Abimiku, A., Adebamowo, S. N., de Vries, J., Matimba, A., Olowoyo, P., et al. (2018). H3Africa: Current perspectives.\u00a0Pharmacogenomics and Personalized Medicine, 11, 59\u201366.","journal-title":"Pharmgenomics Pers Med."},{"issue":"12","key":"9577_CR29","doi-asserted-by":"publisher","first-page":"e018647","DOI":"10.1136\/bmjopen-2017-018647","volume":"7","author":"C Ohmann","year":"2017","unstructured":"Ohmann, C., Banzi, R., Canham, S., Battaglia, S., Matei, M., Ariyo, C., et al. (2017). Sharing and reuse of individual participant data from clinical trials: principles and recommendations. BMJ Open, 7(12), e018647.","journal-title":"BMJ Open"},{"issue":"10","key":"9577_CR30","doi-asserted-by":"publisher","first-page":"915","DOI":"10.1002\/humu.22858","volume":"36","author":"AA Philippakis","year":"2015","unstructured":"Philippakis, A. A., Azzariti, D. R., Beltran, S., Brookes, A. J., Brownstein, C. A., Brudno, M., et al. (2015). The Matchmaker Exchange: A Platform for Rare Disease Gene Discovery. Human Mutation, 36(10), 915\u2013921.","journal-title":"Human Mutation"},{"issue":"5","key":"9577_CR31","doi-asserted-by":"publisher","first-page":"1002","DOI":"10.1016\/j.neuron.2017.07.026","volume":"95","author":"V Poupon","year":"2017","unstructured":"Poupon, V., Seyller, A., & Rouleau, G. A. (2017). The Tanenbaum Open Science Institute: Leading a paradigm shift at the montreal neurological institute. Neuron, 95(5), 1002\u20131006.","journal-title":"Neuron"},{"issue":"4","key":"9577_CR32","doi-asserted-by":"publisher","first-page":"321","DOI":"10.1353\/cpr.0.0046","volume":"2","author":"L Santos","year":"2008","unstructured":"Santos, L. (2008). Genetic research in native communities. Progress in Community Health Partnerships, 2(4), 321\u2013327.","journal-title":"Progress in Community Health Partnerships"},{"issue":"4","key":"9577_CR33","doi-asserted-by":"publisher","first-page":"205","DOI":"10.1136\/jme.2006.016790","volume":"33","author":"D Schroeder","year":"2007","unstructured":"Schroeder, D. (2007). Benefit sharing: It\u2019s time for a definition. Journal of Medical Ethics., 33(4), 205\u2013209.","journal-title":"Journal of Medical Ethics."},{"key":"9577_CR34","unstructured":"Bradford, K., and Carton, T.W. Standardizing Consent for REACHnet\u2019s Pediatric Research Registry (HiOH Kids), available at https:\/\/confluence.hl7.org\/download\/attachments\/66929847\/REACHnet%20ONC%20Patient%20Choice%20Phase%202%20White%20Paper.docx?version=1&modificationDate=1572924291379&api=v2"},{"key":"9577_CR35","doi-asserted-by":"crossref","unstructured":"Swart, Y., van Eeden, G., Sparks, A., & Uren, C., (2020). M\u00f6ller M. Prospective avenues for human population genomics and disease mapping in southern Africa. Molecular Genetics and Genomics.","DOI":"10.1007\/s00438-020-01684-8"},{"issue":"1","key":"9577_CR36","doi-asserted-by":"publisher","first-page":"11","DOI":"10.4067\/S0034-98872016000100002","volume":"144","author":"DB Taichman","year":"2016","unstructured":"Taichman, D. B., Backus, J., Baethge, C., Bauchner, H., de Leeuw, P. W., Drazen, J. M., et al. (2016). Sharing clinical trial data: A proposal from the International Committee of Medical Journal Editors. Revista Medica De Chile, 144(1), 11\u201313.","journal-title":"Revista Medica De Chile"},{"key":"9577_CR37","doi-asserted-by":"crossref","unstructured":"The \u201cAll of Us\u201d Research Program. (2019). New England Journal of Medicine, 381(7), 668\u2013676.","DOI":"10.1056\/NEJMsr1809937"},{"key":"9577_CR38","doi-asserted-by":"publisher","unstructured":"Tremblay-Mercier, J., Madjar, C., Das, S., Pichet Binette, A., Dyke, S.O.M., \u00c9tienne, P., Lafaille-Magnan, M.E., Remz, J., Bellec, P., Louis Collins, D., Natasha Rajah, M., Bohbot, V., Leoutsakos, J.M., Iturria-Medina, Y., Kat, J., Hoge, R.D., Gauthier, S., Tardif, C.L., Mallar Chakravarty, M., Poline, J.B., Rosa-Neto, P., Evans, A.C., Villeneuve, S., Poirier, J., Breitner, J.C.S. & PREVENT-AD Research Group. (2021) Open science datasets from PREVENT-AD, a longitudinal cohort of pre-symptomatic Alzheimer's disease. Neuroimage Clin. 2021(31),102733. https:\/\/doi.org\/10.1016\/j.nicl.2021.102733.","DOI":"10.1016\/j.nicl.2021.102733"},{"key":"9577_CR39","doi-asserted-by":"crossref","unstructured":"Tryka, K. A., Hao, L., Sturcke, A., Jin, Y., Wang, Z. Y., Ziyabari, L., et al. (2014). NCBI's database of genotypes and phenotypes: dbGaP. Nucleic Acids Research, 42(Database issue), D975-D979.","DOI":"10.1093\/nar\/gkt1211"},{"key":"9577_CR40","unstructured":"United Nations Secretary-General's High-Level Panel on Access to Medicines Report. (2016). Promoting innovation and access to health technologies. United Nations."},{"key":"9577_CR41","doi-asserted-by":"publisher","unstructured":"Vears, D. F., Minion, J. T., Roberts, S. J., Cummings, J., Machirori, M., Blell, M., Budin-Lj\u00f8sne, I., Cowley, L., Dyke, S. O. M., Gaff, C., Green, R., Hall, A., Johns, A. L., Knoppers, B. M., Mulrine, S., Patch, C., Winkler, E., & Murtagh, M. J. (2021). Return of individual research results from genomic research: A systematic review of stakeholder perspectives. PLoS One, 16(11), e0258646.\u00a0https:\/\/doi.org\/10.1371\/journal.pone.0258646. eCollection 2021. PMID: 34748551","DOI":"10.1371\/journal.pone.0258646"},{"key":"9577_CR42","doi-asserted-by":"publisher","first-page":"100030","DOI":"10.1016\/j.xgen.2021.100030","volume":"1","author":"C Voisin","year":"2021","unstructured":"Voisin, C., Linden, M., Dyke, S. O. M., Bowers, S., Alper, P., Barkley, M., Bernick, D., Courtot, M., Jeanson, F., Jianpeng, C., Konopko, M., Kuba, M., Lawson, J., Leinonen, J., Philippakis, A., Reinold, K., Rodamer, K., Rushton, G., Spalding, J. D., \u2026 Nyr\u00f6nen, T. H. (2021). GA4GH Passport data access technology standard for distributed genomics and health research. Cell Genomics, 1, 100030.","journal-title":"Cell Genomics"},{"issue":"4","key":"9577_CR43","doi-asserted-by":"publisher","first-page":"361","DOI":"10.1038\/gim.2012.23","volume":"14","author":"SM Wolf","year":"2012","unstructured":"Wolf, S. M., Crock, B. N., Van Ness, B., Lawrenz, F., Kahn, J. P., Beskow, L. M., et al. (2012). Managing incidental findings and research results in genomic research involving biobanks and archived data sets. Genetics in Medicine\u202f: Official Journal of the American College of Medical Genetics., 14(4), 361\u2013384.","journal-title":"Genetics in Medicine : Official Journal of the American College of Medical Genetics."},{"issue":"D1","key":"9577_CR44","doi-asserted-by":"publisher","first-page":"D819","DOI":"10.1093\/nar\/gkw1139","volume":"45","author":"KM Wong","year":"2017","unstructured":"Wong, K. M., et al. (2017). The dbGaP data browser: a new tool for browsing dbGaP controlled-access genomic data. Nucleic Acids Research, 45(D1), D819\u2013D826. https:\/\/doi.org\/10.1093\/nar\/gkw1139","journal-title":"Nucleic Acids Research"},{"key":"9577_CR45","doi-asserted-by":"publisher","first-page":"17","DOI":"10.1038\/s41525-018-0057-4","volume":"3","author":"JP Woolley","year":"2018","unstructured":"Woolley, J. P., Kirby, E., Leslie, J., Jeanson, F., Cabili, M. N., Rushton, G., et al. (2018). Responsible sharing of biomedical data and biospecimens via the Automatable Discovery and Access Matrix (ADA-M). NPJ Genomic Medicine, 3, 17.","journal-title":"NPJ Genomic Medicine"},{"key":"9577_CR46","doi-asserted-by":"publisher","first-page":"13","DOI":"10.12688\/aasopenres.12844.2","volume":"1","author":"A Yakubu","year":"2018","unstructured":"Yakubu, A., Tindana, P., Matimba, A., Littler, K., Munung, N. S., Madden, E., et al. (2018). Model framework for governance of genomic research and biobanking in Africa - a content description. AAS Open Research, 1, 13.","journal-title":"AAS Open Res."}],"container-title":["Neuroinformatics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s12021-022-09577-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s12021-022-09577-4\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s12021-022-09577-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,2,16]],"date-time":"2023-02-16T06:20:53Z","timestamp":1676528453000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s12021-022-09577-4"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,12,15]]},"references-count":46,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2023,1]]}},"alternative-id":["9577"],"URL":"https:\/\/doi.org\/10.1007\/s12021-022-09577-4","relation":{},"ISSN":["1539-2791","1559-0089"],"issn-type":[{"value":"1539-2791","type":"print"},{"value":"1559-0089","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,12,15]]},"assertion":[{"value":"23 February 2022","order":1,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"15 December 2022","order":2,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}}]}}