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Find Work Stream and product documents, including meeting minutes, recordings, and more.

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Category

Work Streams

Products

Communities of Interest

Date

GIF Charter
Other
3 Sep 2024
GA4GH Updates Report — August 2024
Other
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Cloud Work Stream, Data Security Work Stream, Data Use & Researcher Identity (DURI) Work Stream, Discovery Work Stream, Genomic Knowledge Standards (GKS) Work Stream, Large-Scale Genomics (LSG) Work Stream, Regulatory & Ethics Work Stream (REWS)
Cancer Community, Rare Disease Community
27 Aug 2024
Product Development and Approval Process diagram
Graphic
21 Aug 2024
Cancer Community meeting minutes
Minutes
Cancer Community
27 Jun 2024
Cancer Community presentation schedule
Other
Cancer Community
27 Jun 2024
GA4GH response to WHO draft principles for human genome access, use, and sharing
Principles & Policies
Regulatory & Ethics Work Stream (REWS)
Framework for responsible sharing of genomic and health-related data, Diversity in Datasets
28 May 2024
Meeting report: April Connect 2024
Meeting Report
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Cloud Work Stream, Data Security Work Stream, Data Use & Researcher Identity (DURI) Work Stream, Discovery Work Stream, Genomic Knowledge Standards (GKS) Work Stream, Large-Scale Genomics (LSG) Work Stream, Regulatory & Ethics Work Stream (REWS)
24 May 2024
HDR UK::GA4GH Strategic Partnership
Other
16 Apr 2024
GA4GH and RDA Strategic Partnership Memorandum of Understanding
Other
15 Apr 2024
Diversity in Datasets Policy v2.4
Principles & Policies
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
27 Mar 2024
2024 Cloud Work Stream Roadmap
Road Map
Cloud Work Stream
Tool Registry Service (TRS), Data Repository Service (DRS), Task Execution Service (TES), Workflow Execution Service (WES)
12 Mar 2024
Federated Cohort Building meeting minutes
Minutes
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Discovery Work Stream
Federated Cohort Building
22 Feb 2024
Experiments Metadata Standards - Scope Statement
Other
Discovery Work Stream
Experiments Metadata Standard
21 Feb 2024
Rare Disease Community of Interest Connect workshop September 2023
Agenda
Rare Disease Community
20 Feb 2024
Rare Disease Community of Interest meeting minutes
Minutes
Rare Disease Community
20 Feb 2024
NIH and GA4GH Memorandum of Agreement
Other
14 Feb 2024
GA4GH Implementations Criteria and Catalogue
Implementation Support
7 Feb 2024
Driver Project Engagement Matrix
Planning, Implementation Support, Other
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Cloud Work Stream, Data Security Work Stream, Data Use & Researcher Identity (DURI) Work Stream, Discovery Work Stream, Genomic Knowledge Standards (GKS) Work Stream, Large-Scale Genomics (LSG) Work Stream, Regulatory & Ethics Work Stream (REWS)
Authorisation and Authentication Infrastructure (AAI), Bad Actors in Research Environments (BARE), Beacon, Browser Extensible Data (BED), Categorical Variation Representation Specification (Cat-VRS), Clinical Data Sharing and Consent, Clinical Genomic Consent Clauses, Cloud Security and Privacy, Federated Cohort Building, Consent Clauses for Genomic Research, Consent Policy, Consent Toolkit, Data Access Committee Guiding Principles and Procedural Standards Policy, Data Access Committee Review Standards (DACReS) Toolkit, Data Connect, Data Model and Schema Consensus (DaMaSC), Data Privacy and Security Policy, Data Repository Service (DRS), Data Security Infrastructure Policy (DSIP), Data Use Ontology (DUO), Diversity in Datasets, Ethical Preparedness for Pandemics and Epidemics (EPPE) Framework, Ethical Provenance Toolkit, Ethics Review Recognition Policy, Experiments Metadata Standard, Familial Consent Clauses, Family History Toolkit, Framework for Involving and Engaging Participants, Patients, and Publics in Genomics Research and Health Implementation, Framework for responsible sharing of genomic and health-related data, GDPR & International Health Data Sharing Forum, Genetic Data Encryption (Crypt4GH), Genetic Discrimination Toolkit, Genetic Discrimination: Implications for Data Sharing Projects, Genetic Variation Formats (VCF), htsget, Large Scale Initiatives Consent Clauses, Model Consent Clauses for Rare Disease Research, Machine Readable Consent Guidance (MRCG), Paediatric Consent to Genetic Research Clauses, Passports, Pedigree, Pharmacogenomics Data Standardisation, Phenopackets, Policy on Clinically Actionable Genomic Research Results, Public Attitudes for Genomic Policy — Blog Posts, refget, Responsible Data Sharing to Respond to the COVID-19 Pandemic: Ethical and Legal Considerations, Risk Assessment Methodology for Software Stacks, RNAget, SAM/BAM, Sequence Annotation (SA), Service Info, Service Registry, Structural Variation (SV), Task Execution Service (TES), Variant Annotation (VA), Tool Registry Service (TRS), Variant Benchmarking Tools, Variation Representation (VRS), WGS Quality Control Standards, Workflow Execution Service (WES), Your DNA, Your Say (Participant Values Survey), Consent Toolkit, Data Access Committee Review Standards (DACReS) Toolkit, Ethical Provenance Toolkit, Family History Toolkit, Genetic Discrimination Toolkit, CRAM
15 Dec 2023
Categorical Variation (CatVar) meeting minutes
Minutes
Categorical Variation Representation Specification (Cat-VRS)
8 Nov 2023
Categorical Variation (CatVar) Study Group in-progress documentation
Product Documentation
Genomic Knowledge Standards (GKS) Work Stream
Categorical Variation Representation Specification (Cat-VRS)
8 Nov 2023
Ethical Preparedness for Pandemics and Epidemics (EPPE) Framework meeting minutes
Minutes
Ethical Preparedness for Pandemics and Epidemics (EPPE) Framework
8 Nov 2023
Ethical Preparedness for Pandemics and Epidemics Framework in-progress documentation
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Ethical Preparedness for Pandemics and Epidemics (EPPE) Framework
8 Nov 2023
Experiments Metadata Standard in-progress documentation
Product Documentation
Discovery Work Stream
Experiments Metadata Standard
8 Nov 2023
Experiments Metadata Standard meeting minutes
Minutes
Experiments Metadata Standard
8 Nov 2023
Meeting Minutes: GKS – Structural Variation Special Interest Group
Minutes
Genomic Knowledge Standards (GKS) Work Stream
Variation Representation (VRS)
8 Nov 2023
Meeting Report: 11th Plenary
Meeting Report
7 Nov 2023
Meeting Report: September Connect 2023
Meeting Report
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Cloud Work Stream, Data Security Work Stream, Data Use & Researcher Identity (DURI) Work Stream, Genomic Knowledge Standards (GKS) Work Stream, Discovery Work Stream, Large-Scale Genomics (LSG) Work Stream, Regulatory & Ethics Work Stream (REWS)
7 Nov 2023
Public Attitudes for Genomic Policy Brief: genetic exceptionalism
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Public Attitudes for Genomic Policy — Blog Posts
13 Oct 2023
Data Model and Schema Consensus Study Group Charter
Product Documentation
Discovery Work Stream
Data Model and Schema Consensus (DaMaSC)
30 Sep 2023
2023 Driver Projects Infographic
Graphic
20 Sep 2023
GA4GH Product Development and Approval Process
Principles & Policies
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Cloud Work Stream, Data Security Work Stream, Data Use & Researcher Identity (DURI) Work Stream, Discovery Work Stream, Genomic Knowledge Standards (GKS) Work Stream, Large-Scale Genomics (LSG) Work Stream, Regulatory & Ethics Work Stream (REWS)
19 Sep 2023
Code of Ethics and Community Conduct (CECC)
Principles & Policies
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Cloud Work Stream, Data Security Work Stream, Data Use & Researcher Identity (DURI) Work Stream, Discovery Work Stream, Genomic Knowledge Standards (GKS) Work Stream, Large-Scale Genomics (LSG) Work Stream, Regulatory & Ethics Work Stream (REWS)
Authorisation and Authentication Infrastructure (AAI), Passports, Bad Actors in Research Environments (BARE), Beacon, Browser Extensible Data (BED), Categorical Variation Representation Specification (Cat-VRS), Clinical Data Sharing and Consent, Clinical Genomic Consent Clauses, Cloud Security and Privacy, Federated Cohort Building, Consent Clauses for Genomic Research, Consent Policy, Consent Toolkit, CRAM, Data Access Committee Guiding Principles and Procedural Standards Policy, Data Access Committee Review Standards (DACReS) Toolkit, Data Connect, Data Model and Schema Consensus (DaMaSC), Data Privacy and Security Policy, Data Repository Service (DRS), Data Security Infrastructure Policy (DSIP), Data Use Ontology (DUO), Diversity in Datasets, Ethical Preparedness for Pandemics and Epidemics (EPPE) Framework, Ethical Provenance Toolkit, Ethics Review Recognition Policy, Experiments Metadata Standard, Familial Consent Clauses, Family History Toolkit, Framework for Involving and Engaging Participants, Patients, and Publics in Genomics Research and Health Implementation, Framework for responsible sharing of genomic and health-related data, GDPR & International Health Data Sharing Forum, Genetic Data Encryption (Crypt4GH), Genetic Discrimination Toolkit, Genetic Discrimination: Implications for Data Sharing Projects, Genetic Variation Formats (VCF), htsget, Large Scale Initiatives Consent Clauses, Machine Readable Consent Guidance (MRCG), Model Consent Clauses for Rare Disease Research, Paediatric Consent to Genetic Research Clauses, Pedigree, Pharmacogenomics Data Standardisation, Phenopackets, Policy on Clinically Actionable Genomic Research Results, Public Attitudes for Genomic Policy — Blog Posts, refget, Responsible Data Sharing to Respond to the COVID-19 Pandemic: Ethical and Legal Considerations, Risk Assessment Methodology for Software Stacks, RNAget, SAM/BAM, Sequence Annotation (SA), Service Info, Service Registry, Task Execution Service (TES), Tool Registry Service (TRS), Variant Annotation (VA), Variant Benchmarking Tools, Variation Representation (VRS), WGS Quality Control Standards, Workflow Execution Service (WES), Your DNA, Your Say (Participant Values Survey), Consent Toolkit, Data Access Committee Review Standards (DACReS) Toolkit, Ethical Provenance Toolkit, Family History Toolkit, Genetic Discrimination Toolkit
14 Sep 2023
Guidelines for respectful engagement
Principles & Policies
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Cloud Work Stream, Data Security Work Stream, Data Use & Researcher Identity (DURI) Work Stream, Discovery Work Stream, Genomic Knowledge Standards (GKS) Work Stream, Large-Scale Genomics (LSG) Work Stream, Regulatory & Ethics Work Stream (REWS)
14 Sep 2023
Procedures for reviewing reported violations of the Code of Ethics and Community Conduct
Principles & Policies
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Cloud Work Stream, Data Security Work Stream, Data Use & Researcher Identity (DURI) Work Stream, Genomic Knowledge Standards (GKS) Work Stream, Discovery Work Stream, Large-Scale Genomics (LSG) Work Stream, Regulatory & Ethics Work Stream (REWS)
14 Sep 2023
Public Attitudes for Genomic Policy Brief: familiarity
Toolkit Component
Regulatory & Ethics Work Stream (REWS)
Public Attitudes for Genomic Policy — Blog Posts
11 Sep 2023
Product Approval Process (2019)
Principles & Policies
19 Jul 2023
Public Attitudes for Genomic Policy briefs: Return of Research Results
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Public Attitudes for Genomic Policy — Blog Posts
23 May 2023
2018 Product Road Map
Road Map
13 May 2023
GA4GH Tech Team Charter
Other
13 May 2023
GA4GH vision: genomic and health-related data sharing in 2022
Road Map, Principles & Policies, Other
13 May 2023
Meeting minutes: Discovery (2021 to 2023)
Minutes
Discovery Work Stream
Beacon, Data Connect, Service Registry, Service Info
10 May 2023
Agendas and meeting minutes: Pharmacogenomics Data Standardisation & Storage
Minutes, Agenda
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Genomic Knowledge Standards (GKS) Work Stream
Pharmacogenomics Data Standardisation
5 May 2023
Landscape analysis: PGx data standardisation
Working
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Genomic Knowledge Standards (GKS) Work Stream
Pharmacogenomics Data Standardisation
5 May 2023
Meeting report: Bad Actors in Research Environments — who’s bad?
Meeting Report
Data Security Work Stream
Bad Actors in Research Environments (BARE)
5 May 2023
Family history tools inventory (v2.0)
Toolkit Component
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Regulatory & Ethics Work Stream (REWS)
Pedigree, Family History Toolkit
28 Apr 2023
GA4GH community response to COVID-19
Other
19 Apr 2023
Archived: Consent Tools
Other
Regulatory & Ethics Work Stream (REWS)
6 Apr 2023
Archived: profile completion rule set for ADA-M v1.0
Product Documentation
Regulatory & Ethics Work Stream (REWS)
6 Apr 2023
Archived: technology primer: overview of technological solutions to support privacy preserving record linkage
Product Documentation
Regulatory & Ethics Work Stream (REWS)
6 Apr 2023
Archived: Windows software link for ADA-M (Automatable Discovery and Access Matrix)
Other
Regulatory & Ethics Work Stream (REWS)
6 Apr 2023
Informational packet: getting involved with GA4GH
Other
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Cloud Work Stream, Data Security Work Stream, Data Use & Researcher Identity (DURI) Work Stream, Discovery Work Stream, Genomic Knowledge Standards (GKS) Work Stream, Large-Scale Genomics (LSG) Work Stream, Regulatory & Ethics Work Stream (REWS)
5 Apr 2023
Phenopackets implementation resources
Implementation Support
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Phenopackets
30 Mar 2023
GA4GH Implementation Forum (GIF) working practices
Principles & Policies
21 Mar 2023
Driver Project Application Form (2023)
Other
11 Mar 2023
Meeting minutes: Clin/Pheno (2023 to 2024)
Minutes
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Pedigree, Phenopackets
11 Mar 2023
Meeting minutes: crypt4gh (2023)
Minutes
Large-Scale Genomics (LSG) Work Stream
Genetic Data Encryption (Crypt4GH)
11 Mar 2023
Meeting minutes: Discovery (2021 to 2023)
Minutes
Discovery Work Stream
11 Mar 2023
Meeting minutes: Discovery — Data Connect (2021 to 2023)
Minutes
Discovery Work Stream
Data Connect
11 Mar 2023
Meeting minutes: Equity, Diversity, and Inclusion Advisory Group (2020 to 2023)
Minutes
11 Mar 2023
Meeting minutes: file formats (2023)
Minutes
Large-Scale Genomics (LSG) Work Stream
Genetic Variation Formats (VCF), CRAM, SAM/BAM
11 Mar 2023
Meeting minutes: Future of VCF (2023)
Minutes
Large-Scale Genomics (LSG) Work Stream
Genetic Variation Formats (VCF)
11 Mar 2023
Meeting minutes: GKS — Variation Representation (2023)
Minutes
Genomic Knowledge Standards (GKS) Work Stream
Variation Representation (VRS)
11 Mar 2023
Meeting minutes: LSG — htsget (2023)
Minutes
Large-Scale Genomics (LSG) Work Stream
htsget
11 Mar 2023
Meeting minutes: refget (2023)
Minutes
Large-Scale Genomics (LSG) Work Stream
refget
11 Mar 2023
Meeting minutes: RNAget (2023)
Minutes
Large-Scale Genomics (LSG) Work Stream
RNAget
11 Mar 2023
Meeting minutes: Sequence Annotation (2022 to 2023)
Minutes
Genomic Knowledge Standards (GKS) Work Stream
Sequence Annotation (SA)
11 Mar 2023
Meeting minutes: Technical Alignment Subcommittee (TASC)
Minutes
11 Mar 2023
Meeting minutes: Variant Annotation (2021 to 2023)
Minutes
Genomic Knowledge Standards (GKS) Work Stream
Variant Annotation (VA)
11 Mar 2023
Start-up guide: refget
Implementation Support, Product Documentation
Large-Scale Genomics (LSG) Work Stream
refget
10 Mar 2023
Meeting minutes: Quality Control of Whole Genome Sequencing
Minutes
Large-Scale Genomics (LSG) Work Stream, Genomic Knowledge Standards (GKS) Work Stream
WGS Quality Control Standards
6 Mar 2023
Meeting minutes: Technical Alignment Subcommittee (TASC)
Minutes
6 Mar 2023
Road map: Quality Control of Whole Genome Sequencing
Road Map
Large-Scale Genomics (LSG) Work Stream, Genomic Knowledge Standards (GKS) Work Stream
WGS Quality Control Standards
6 Mar 2023
GA4GH Strategic Road Map (2015 to 2016)
Planning
27 Feb 2023
GA4GH response to proposed updates to the NIH Genomic Data Sharing Policy
Other
26 Feb 2023
Meeting report: March Connect 2021
Meeting Report
22 Feb 2023
Machine-Readable Consent Guidance (v1.0)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Machine Readable Consent Guidance (MRCG)
12 Jan 2023
Responsible Data Sharing to Respond to the COVID-19 Pandemic: Ethical and Legal Considerations (v3.0)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Responsible Data Sharing to Respond to the COVID-19 Pandemic: Ethical and Legal Considerations
12 Jan 2023
Meeting report: 1st Plenary
Meeting Report
11 Jan 2023
Meeting report: 2nd Plenary
Meeting Report
11 Jan 2023
Meeting report: 3rd Plenary
Meeting Report
11 Jan 2023
Meeting report: 4th Plenary
Meeting Report
11 Jan 2023
Meeting report: 5th Plenary
Meeting Report
11 Jan 2023
Meeting report: 6th Plenary
Meeting Report
11 Jan 2023
Meeting report: 7th Plenary
Meeting Report
11 Jan 2023
Meeting report: 8th Plenary
Meeting Report
11 Jan 2023
Meeting report: 9th Plenary
Meeting Report
11 Jan 2023
Meeting report: April Connect 2022
Meeting Report
11 Jan 2023
Meeting report: June Connect 2018
Meeting Report
11 Jan 2023
Meeting report: March Connect 2020
Meeting Report
11 Jan 2023
Meeting report: May Connect 2019
Meeting Report
11 Jan 2023
Meeting report: November Connect 2022
Meeting Report
11 Jan 2023
Meeting report: October Connect 2021
Meeting Report
11 Jan 2023
REWS working definition of equity, diversity, and inclusion (EDI)
Working
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
11 Jan 2023
Public Attitudes for Genomic Policy briefs: What does the UK public think about the storage and use of its genetic data?
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Public Attitudes for Genomic Policy — Blog Posts
10 Jan 2023
Presentation: driving innovation in genomic data science through ethical and efficient data access
Presentation
Regulatory & Ethics Work Stream (REWS)
Data Access Committee Review Standards (DACReS) Toolkit
12 Oct 2022
Meeting agenda: REWS — Diversity in Datasets (11 Oct 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
11 Oct 2022
Meeting agenda: Clinical Data Sharing and Consent (6 Oct 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Clinical Data Sharing and Consent
6 Oct 2022
Strategic Plan (2023)
Road Map, Planning
27 Sep 2022
Meeting minutes: Large-Scale Genomics
Minutes
Large-Scale Genomics (LSG) Work Stream
25 Sep 2022
Meeting agenda: driving innovation in genomic data science through ethical and efficient data access (2022)
Working
Data Use & Researcher Identity (DURI) Work Stream, Regulatory & Ethics Work Stream (REWS)
Data Access Committee Review Standards (DACReS) Toolkit
13 Sep 2022
Meeting agenda: REWS Diversity in Datasets (8 Sep 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
8 Sep 2022
Infographic: Your DNA Your Say — trust and trustworthiness
Graphic
Regulatory & Ethics Work Stream (REWS)
Your DNA, Your Say (Participant Values Survey)
31 Aug 2022
Public Attitudes for Genomic Policy briefs: Trust and Trustworthiness
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Public Attitudes for Genomic Policy — Blog Posts
31 Aug 2022
Meeting agenda: REWS — Genetic Discrimination
Agenda
Regulatory & Ethics Work Stream (REWS)
Genetic Discrimination Toolkit
30 Aug 2022
Poster: REWS selected outputs (2022)
Poster
Regulatory & Ethics Work Stream (REWS)
12 Aug 2022
Meeting agenda: REWS — Diversity in Datasets (28 Jul 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
28 Jul 2022
Meeting agenda: Public Attitudes for Genomic Policy
Agenda
Regulatory & Ethics Work Stream (REWS)
Public Attitudes for Genomic Policy — Blog Posts
5 Jul 2022
Meeting agenda: REWS — Diversity in Datasets (29 Jun 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
29 Jun 2022
Working document: Diversity in Datasets
Working
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
29 Jun 2022
Clinical Genomic Consent Clauses (v1.0)
Product Documentation, Toolkit Component
Regulatory & Ethics Work Stream (REWS)
Consent Toolkit
23 Jun 2022
Meeting agenda: Clinical Data Sharing and Consent (16 Jun 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Clinical Data Sharing and Consent
16 Jun 2022
Meeting minutes: Discovery — DaMaSC
Minutes
Discovery Work Stream
Data Model and Schema Consensus (DaMaSC)
11 May 2022
Meeting agenda: Public Attitudes for Genomic Policy (28 Apr 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Public Attitudes for Genomic Policy — Blog Posts
28 Apr 2022
Working document: Computable Cohort Hackathon 2022
Working
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Federated Cohort Building
28 Apr 2022
Meeting agenda: Ethical Provenance Toolkit (27 Apr 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Ethical Provenance Toolkit
27 Apr 2022
Meeting agenda: REWS Diversity in Datasets (25 Apr 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
25 Apr 2022
Large Scale Initiatives Consent Clauses (v1.0)
Product Documentation, Toolkit Component
Regulatory & Ethics Work Stream (REWS)
Consent Toolkit
21 Apr 2022
Working document: Genetic Discrimination paper questions
Working
Regulatory & Ethics Work Stream (REWS)
Genetic Discrimination Toolkit
19 Apr 2022
Gap analysis: DURI (2020)
Planning
Data Use & Researcher Identity (DURI) Work Stream
26 Mar 2022
Meeting agenda: Clinical Data Sharing and Consent (17 Mar 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Clinical Data Sharing and Consent
17 Mar 2022
Working document: Diversity in Datasets — usability, operationalisation, and transparency
Working
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
14 Mar 2022
Road map: Regulatory & Ethics (2022 to 2023)
Road Map
Regulatory & Ethics Work Stream (REWS)
1 Mar 2022
Meeting agenda: REWS — Genetic Discrimination (23 Feb 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Genetic Discrimination Toolkit
23 Feb 2022
Road map: Clin/Pheno (2022 to 2023)
Road Map
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
22 Feb 2022
Working document: Pedigree road map planning (2022 to 2023)
Planning
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Pedigree
16 Feb 2022
Informational document: Onboarding Programme
Other
1 Feb 2022
Working document: Passports v1.2 work-order token proposal (January 2022)
Working
Data Use & Researcher Identity (DURI) Work Stream
Passports
17 Jan 2022
Meeting minutes: Data Security — AAI (2022)
Minutes
Data Security Work Stream
Authorisation and Authentication Infrastructure (AAI)
13 Jan 2022
Meeting minutes: crypt4gh (2022)
Minutes
Large-Scale Genomics (LSG) Work Stream
Genetic Data Encryption (Crypt4GH)
4 Jan 2022
Meeting minutes: RNASeq (2022)
Minutes
Large-Scale Genomics (LSG) Work Stream
RNAget
4 Jan 2022
Working document: common dataset for family health history
Working
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Pedigree
8 Dec 2021
Genetic Discrimination: Implications for Data Sharing Projects (GeDI) (v1.0)
Product Documentation, Toolkit Component
Regulatory & Ethics Work Stream (REWS)
Genetic Discrimination Toolkit
2 Dec 2021
Road map: Discovery (2022 to 2023)
Road Map
Discovery Work Stream
3 Nov 2021
Data Access Committee Guiding Principles and Procedural Standards Policy (v1.0)
Product Documentation, Toolkit Component
Regulatory & Ethics Work Stream (REWS)
Data Access Committee Review Standards (DACReS) Toolkit
27 Oct 2021
Pediatric Consent to Genetic Research Clauses (v1.0)
Product Documentation, Toolkit Component
Regulatory & Ethics Work Stream (REWS)
Consent Toolkit
27 Oct 2021
Road map: Data Use & Researcher Identities (2022)
Road Map
Data Use & Researcher Identity (DURI) Work Stream
25 Oct 2021
Meeting minutes: REWS — Diversity in Datasets (2021)
Minutes
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
21 Oct 2021
Working document: Computable Cohort Representation — scope
Working
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Federated Cohort Building
27 Jul 2021
Meeting minutes: Data Security — AAI (2021)
Minutes
Data Security Work Stream
Authorisation and Authentication Infrastructure (AAI)
23 Jul 2021
Framework for Involving and Engaging Participants, Patients, and Publics in Genomics Research and Health Implementation (v1.0)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Framework for Involving and Engaging Participants, Patients, and Publics in Genomics Research and Health Implementation
1 Jul 2021
Policy on Clinically Actionable Genomic Research Results (v1.0)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Policy on Clinically Actionable Genomic Research Results
24 Jun 2021
Meeting agenda: REWS — Genetic Discrimination (28 May 2021)
Agenda
Regulatory & Ethics Work Stream (REWS)
Genetic Discrimination Toolkit
28 May 2021
Working document: Cohort Representation landscape analysis
Working
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Federated Cohort Building
27 May 2021
Meeting agenda: DACReS (13 May 2021)
Agenda
Regulatory & Ethics Work Stream (REWS)
Data Access Committee Review Standards (DACReS) Toolkit
13 May 2021
Meeting minutes and agendas: Computable Cohort Representation
Minutes, Agenda
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Federated Cohort Building
11 May 2021
Meeting minutes: Regulatory & Ethics (2020 to 2023)
Minutes
Regulatory & Ethics Work Stream (REWS)
29 Apr 2021
Meeting agenda: REWS — Genetic Discrimination (8 Apr 2021)
Agenda
Regulatory & Ethics Work Stream (REWS)
Genetic Discrimination Toolkit
8 Apr 2021
Meeting minutes: DACReS (2021)
Minutes
Data Use & Researcher Identity (DURI) Work Stream, Regulatory & Ethics Work Stream (REWS)
Data Access Committee Review Standards (DACReS) Toolkit
1 Mar 2021
GA4GH Sequence Annotation definitions and model
Working
Genomic Knowledge Standards (GKS) Work Stream
Sequence Annotation (SA)
6 Feb 2021
Meeting minutes: Discovery (2021 to 2023)
Minutes
1 Feb 2021
Familial Consent Clauses (v1.0)
Product Documentation, Toolkit Component
Regulatory & Ethics Work Stream (REWS)
Consent Toolkit
20 Jan 2021
Meeting minutes: Data Security (2021 to 2022)
Minutes
Data Security Work Stream
15 Dec 2020
Meeting minutes: Data Use & Researcher Identities (2021 to 2022)
Minutes
Data Use & Researcher Identity (DURI) Work Stream
15 Dec 2020
Meeting minutes: DURI — Data Use (2021 to 2022)
Minutes
Data Use & Researcher Identity (DURI) Work Stream
Data Use Ontology (DUO)
14 Dec 2020
Meeting minutes: Passports (2021 to 2022)
Minutes
Data Use & Researcher Identity (DURI) Work Stream
Passports
14 Dec 2020
Meeting minutes: LSG — htsget (2021 to 2022)
Minutes
Large-Scale Genomics (LSG) Work Stream
htsget
12 Dec 2020
Meeting minutes: Clin/Pheno (2021 to 2022)
Minutes
9 Dec 2020
Meeting minutes: crypt4gh (2021)
Minutes
Large-Scale Genomics (LSG) Work Stream
Genetic Data Encryption (Crypt4GH)
8 Dec 2020
Meeting minutes: File Formats (2021)
Minutes
Large-Scale Genomics (LSG) Work Stream
CRAM, Genetic Variation Formats (VCF), Browser Extensible Data (BED)
8 Dec 2020
Meeting minutes: Future of VCF (2021)
Minutes
Large-Scale Genomics (LSG) Work Stream
Genetic Variation Formats (VCF)
8 Dec 2020
Meeting minutes: refget (2021)
Minutes
Large-Scale Genomics (LSG) Work Stream
refget
8 Dec 2020
Meeting minutes: RNASeq (2021)
Minutes
Large-Scale Genomics (LSG) Work Stream
RNAget
8 Dec 2020
Meeting minutes: Discovery — Data Connect (2021 to 2022)
Minutes
Discovery Work Stream
Data Connect
7 Dec 2020
GA4GH Inc. By-Law
Other
30 Oct 2020
GA4GH Inc. Membership Agreement
Other
12 Oct 2020
Minutes: Consent Workshop, 9th Plenary
Minutes
Regulatory & Ethics Work Stream (REWS)
Consent Toolkit
28 Sep 2020
Meeting minutes: Cloud (November 2020 to present)
Minutes
Cloud Work Stream
22 Sep 2020
Consent Clauses for Genomic Research (v1.0)
Product Documentation, Toolkit Component
Regulatory & Ethics Work Stream (REWS)
Consent Toolkit
8 Jul 2020
Ethics Review Recognition Policy (v2.0)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Ethics Review Recognition Policy
8 Jul 2020
Cloud APIs comic (v4.0)
Other
Cloud Work Stream
Workflow Execution Service (WES), Tool Registry Service (TRS), Task Execution Service (TES), Data Repository Service (DRS)
8 Jun 2020
Meeting minutes: Clin/Pheno — Phenopackets Cancer Task Team
Minutes
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Phenopackets
27 May 2020
Meeting minutes: Equity, Diversity, and Inclusion (EDI) Advisory Group
Minutes
4 May 2020
Strategic Plan (2020)
Road Map
29 Apr 2020
Copyright Policy (v1.0)
Principles & Policies
20 Apr 2020
Gap analysis: Data Security (2020)
Planning
Data Security Work Stream
26 Mar 2020
Minutes: consent workshop
Minutes
Regulatory & Ethics Work Stream (REWS)
Consent Toolkit
11 Mar 2020
Minutes: working meeting on consent
Minutes
Regulatory & Ethics Work Stream (REWS)
Consent Toolkit
31 Jan 2020
Framework for responsible sharing of genomic and health-related data sharing (v1.0)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Framework for responsible sharing of genomic and health-related data
3 Sep 2019
Consent Policy (v2.0)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Consent Policy
2 Sep 2019
Meeting recordings: Clin/Pheno
Recording
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
29 Aug 2019
Meeting minutes: Genomic Knowledge Standards
Minutes
Genomic Knowledge Standards (GKS) Work Stream
7 Aug 2019
Data Privacy and Security Policy (v2.0)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Data Privacy and Security Policy
1 Aug 2019
Model consent clauses for rare disease research (v1.0)
Product Documentation, Toolkit Component
Regulatory & Ethics Work Stream (REWS)
Consent Toolkit
1 Aug 2019
Working document: Pedigree data — use case/requirements
Working
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Pedigree
8 Jul 2019
Working document: Pedigree questionnaire results
Presentation
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Pedigree
4 Jul 2019
ELIXIR::GA4GH Strategic Partnership
Other
2 May 2019
CRAM: the genomics compression standard
Other
Large-Scale Genomics (LSG) Work Stream
CRAM
26 Apr 2019
Strategic​ ​Plan (2017)
Road Map, Planning
12 Apr 2019
Meeting minutes: Discovery (2019 to 2020)
Minutes
Discovery Work Stream
Beacon, Data Connect, Service Info, Service Registry
25 Jan 2019
Meeting minutes: Discovery Beacon API (2022 to 2023)
Minutes
Discovery Work Stream
Beacon
22 Jan 2019
Archived: Automatable Discovery and Access Matrix (ADA-M) guidance document
Product Documentation
Regulatory & Ethics Work Stream (REWS)
7 Jan 2019
Archived: privacy-preserving record linkage: ethico-legal considerations
Product Documentation
Regulatory & Ethics Work Stream (REWS)
20 Mar 2018
Organisational Membership Agreement (v2.0)
Other
31 Jan 2018
Constitution (v2.0)
Principles & Policies
22 Jan 2018
Standards for Professional Conduct / Code of Conduct (v1.0)
Principles & Policies
22 Jan 2018
Meeting minutes: Data Security (2017 to 2018)
Minutes
Data Security Work Stream
26 Sep 2017
Meeting minutes: Discovery (2017 to 2018)
Minutes
Discovery Work Stream
Data Connect, Beacon, Service Registry, Service Info
25 Sep 2017
Product Approval Process (2017)
Principles & Policies
27 Jul 2017
GA4GH Ethics Review Recognition Policy (v1.0)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Ethics Review Recognition Policy
13 Feb 2017
Archived: Automatable Discovery and Access Matrix (ADA-M) spreadsheet
Product Documentation
Regulatory & Ethics Work Stream (REWS)
1 Sep 2016
Archived: Data Sharing Lexicon
Product Documentation
Regulatory & Ethics Work Stream (REWS)
15 Mar 2016
Enabling family history use in clinical practice: a review of current practice and policy considerations
Toolkit Component
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Regulatory & Ethics Work Stream (REWS)
Pedigree, Family History Toolkit
7 Feb 2016
Family history tools inventory (v1.0)
Toolkit Component
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Regulatory & Ethics Work Stream (REWS)
Pedigree, Family History Toolkit
7 Feb 2016
Archived: Accountability Policy (v1.0)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
1 Feb 2016
Archived: Data Use Categories and Requirements (Consent Codes)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
21 Jan 2016
Archived: Mac software link for ADA-M (Automatable Discovery and Access Matrix)
Other
Regulatory & Ethics Work Stream (REWS)
1 Jan 2016
Consent Policy (v1.0)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Consent Policy
27 May 2015
Data Privacy and Security Policy (v1.0)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Data Privacy and Security Policy
26 May 2015
Data Security Infrastructure Policy (DSIP) (v1.1)
Product Documentation
Data Security Work Stream
Data Security Infrastructure Policy (DSIP)
12 Mar 2015
White paper: creating a global alliance to enable responsible sharing of genomic and clinical data
Planning
3 Jun 2013
Letter of intent to establish the Global Alliance
Planning
29 Apr 2013