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Registered access: a 'Triple-A' approach.
Dyke, Stephanie O M; Kirby, Emily; Shabani, Mahsa; Thorogood, Adrian; Kato, Kazuto; Knoppers, Bartha M.
Afiliação
  • Dyke SO; Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, QC, Canada.
  • Kirby E; Public Population Project in Genomics and Society (P3G), Montreal, QC, Canada.
  • Shabani M; University of Leuven, Leuven, Belgium.
  • Thorogood A; Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, QC, Canada.
  • Kato K; Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, Osaka, Japan.
  • Knoppers BM; Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, QC, Canada.
Eur J Hum Genet ; 24(12): 1676-1680, 2016 12.
Article em En | MEDLINE | ID: mdl-27677416
We propose a standard model for a novel data access tier - registered access - to facilitate access to data that cannot be published in open access archives owing to ethical and legal risk. Based on an analysis of applicable research ethics and other legal and administrative frameworks, we discuss the general characteristics of this Registered Access Model, which would comprise a three-stage approval process: Authentication, Attestation and Authorization. We are piloting registered access with the Demonstration Projects of the Global Alliance for Genomics and Health for which it may provide a suitable mechanism for access to certain data types and to different types of data users.
Assuntos

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Medidas de Segurança / Acesso à Informação / Bases de Dados Genéticas Tipo de estudo: Prognostic_studies Idioma: En Revista: Eur J Hum Genet Assunto da revista: GENETICA MEDICA Ano de publicação: 2016 Tipo de documento: Article País de afiliação: Canadá

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Medidas de Segurança / Acesso à Informação / Bases de Dados Genéticas Tipo de estudo: Prognostic_studies Idioma: En Revista: Eur J Hum Genet Assunto da revista: GENETICA MEDICA Ano de publicação: 2016 Tipo de documento: Article País de afiliação: Canadá