Registered access: a ‘Triple-A’ approach

“You want the right amount of oversight”: interviews with data access committee members and experts on genomic data access

(2016) Mahsa Shabani et al.   GENETICS IN MEDICINE

A federated ecosystem for sharing genomic, clinical data

(2016)   SCIENCE

Consent Codes: Upholding Standard Data Use Conditions

(2016) Stephanie O. M. Dyke et al.   PLoS Genetics

From the principles of genomic data sharing to the practices of data access committees

(2015) M. Shabani et al.   EMBO Molecular Medicine

PhenomeCentral: A Portal for Phenotypic and Genotypic Matchmaking of Patients with Rare Genetic Diseases

(2015) Orion J. Buske et al.   HUMAN MUTATION

The Matchmaker Exchange: A Platform for Rare Disease Gene Discovery

(2015) Anthony A. Philippakis et al.   HUMAN MUTATION

The European Genome-phenome Archive of human data consented for biomedical research

(2015) Ilkka Lappalainen et al.   NATURE GENETICS

Controlled Access under Review: Improving the Governance of Genomic Data Access

(2015) Mahsa Shabani et al.   PLOS BIOLOGY

A human rights approach to an international code of conduct for genomic and clinical data sharing

(2014) Bartha M. Knoppers et al.   HUMAN GENETICS

Data sharing policy design for consortia: challenges for sustainability

(2014) Jane Kaye et al.   Genome Medicine

Open Access Data Sharing in Genomic Research

(2014) Stacey Pereira et al.   Genes

A Mechanism for Controlled Access to GWAS Data: Experience of the GAIN Data Access Committee

(2013) Erin M. Ramos et al.   AMERICAN JOURNAL OF HUMAN GENETICS

Data Sharing in the Post-Genomic World: The Experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO)

(2012) Yann Joly et al.   PLoS Computational Biology

A map of human genome variation from population-scale sequencing

(2010) Richard M. Durbin et al.   NATURE

International network of cancer genome projects

(2010) Thomas J. Hudson (Chairperson) et al.   NATURE

DECIPHER: Database of Chromosomal Imbalance and Phenotype in Humans Using Ensembl Resources

(2009) Helen V. Firth et al.   AMERICAN JOURNAL OF HUMAN GENETICS

Prepublication data sharing

(2009)   NATURE