Stephanie O M Dyke, Kathleen Connor, Victoria Nembaware, Nchangwi S Munung, Kathy Reinold, Giselle Kerry, Mamana Mbiyavanga, Lyndon Zass, Mauricio Moldes, Samir Das, John M Davis, Jordi Rambla De Argila, J Dylan Spalding, Alan C Evans, Nicola Mulder, Jason Karamchandani
{"title":"同意代码:在不断扩大的开放科学生态系统中维护同意。","authors":"Stephanie O M Dyke, Kathleen Connor, Victoria Nembaware, Nchangwi S Munung, Kathy Reinold, Giselle Kerry, Mamana Mbiyavanga, Lyndon Zass, Mauricio Moldes, Samir Das, John M Davis, Jordi Rambla De Argila, J Dylan Spalding, Alan C Evans, Nicola Mulder, Jason Karamchandani","doi":"10.1007/s12021-022-09577-4","DOIUrl":null,"url":null,"abstract":"<p><p>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.</p>","PeriodicalId":49761,"journal":{"name":"Neuroinformatics","volume":"21 1","pages":"89-100"},"PeriodicalIF":2.7000,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9931855/pdf/","citationCount":"0","resultStr":"{\"title\":\"Consent Codes: Maintaining Consent in an Ever-expanding Open Science Ecosystem.\",\"authors\":\"Stephanie O M Dyke, Kathleen Connor, Victoria Nembaware, Nchangwi S Munung, Kathy Reinold, Giselle Kerry, Mamana Mbiyavanga, Lyndon Zass, Mauricio Moldes, Samir Das, John M Davis, Jordi Rambla De Argila, J Dylan Spalding, Alan C Evans, Nicola Mulder, Jason Karamchandani\",\"doi\":\"10.1007/s12021-022-09577-4\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>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.</p>\",\"PeriodicalId\":49761,\"journal\":{\"name\":\"Neuroinformatics\",\"volume\":\"21 1\",\"pages\":\"89-100\"},\"PeriodicalIF\":2.7000,\"publicationDate\":\"2023-01-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9931855/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Neuroinformatics\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1007/s12021-022-09577-4\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"COMPUTER SCIENCE, INTERDISCIPLINARY APPLICATIONS\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Neuroinformatics","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1007/s12021-022-09577-4","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"COMPUTER SCIENCE, INTERDISCIPLINARY APPLICATIONS","Score":null,"Total":0}
Consent Codes: Maintaining Consent in an Ever-expanding Open Science Ecosystem.
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.
期刊介绍:
Neuroinformatics publishes original articles and reviews with an emphasis on data structure and software tools related to analysis, modeling, integration, and sharing in all areas of neuroscience research. The editors particularly invite contributions on: (1) Theory and methodology, including discussions on ontologies, modeling approaches, database design, and meta-analyses; (2) Descriptions of developed databases and software tools, and of the methods for their distribution; (3) Relevant experimental results, such as reports accompanie by the release of massive data sets; (4) Computational simulations of models integrating and organizing complex data; and (5) Neuroengineering approaches, including hardware, robotics, and information theory studies.