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Learn how GA4GH helps expand responsible genomic data use to benefit human health.
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Find Work Stream and product documents, including meeting minutes, recordings, and more.
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| Title | Category | Work Streams | Products | Communities of Interest | Date |
|---|---|---|---|---|---|
| GKM Meeting Minutes | Minutes | Genomic Knowledge Standards (GKS) Work Stream | Categorical Variation Representation Specification (Cat-VRS), Variation Representation Specification (VRS), Variant Annotation (VA) | 16 October 2026 | |
| 2026 TASC Workshop Meeting Report | Meeting Report | 1 September 2026 | |||
| Rare Disease Resource Library | Other | Rare Disease Community | 17 June 2026 | ||
| GA4GH and INMEGEN Strategic Partnership Memorandum of Understanding | Other | 21 May 2026 | |||
| April Connect 2026 Meeting Report | Meeting Report | 1 May 2026 | |||
| GA4GH Implementation Forum (GIF) Ask Me Anything: Crypt4GH | Implementation Support | Large-Scale Genomics (LSG) Work Stream, Data Security Work Stream | Genetic Data Encryption (Crypt4GH) | 29 April 2026 | |
| Definition of Genetic Discrimination | Principles & Policies | Regulatory & Ethics Work Stream (REWS) | Genetic Discrimination Toolkit | 2 March 2026 | |
| Genetic Discrimination Toolkit: Position Statement on Genetic Discrimination | Principles & Policies | Regulatory & Ethics Work Stream (REWS) | Position Statement on Genetic Discrimination, Genetic Discrimination Toolkit | 27 February 2026 | |
| Data Governance Theme Team Meeting Minutes and Agenda | Minutes, Agenda | Neuroscience Community | 22 January 2026 | ||
| Data Harmonisation Theme Team Meeting Minutes and Agenda | Minutes, Agenda, Road Map | Neuroscience Community | 22 January 2026 | ||
| Scientific Collaboration and Education Theme Team Meeting Minutes and Agenda | Minutes, Agenda | Neuroscience Community | 22 January 2026 | ||
| April 2024 Connect Agenda - Data Visiting | Agenda | Regulatory & Ethics Work Stream (REWS) | Data Visiting, Data Visiting | 13 January 2026 | |
| April Connect 2025 Agenda - Clinical data sharing | Minutes, Agenda | Regulatory & Ethics Work Stream (REWS) | 13 January 2026 | ||
| April Connect 2025 Agenda - Data Visiting | Agenda | Regulatory & Ethics Work Stream (REWS) | Data Visiting, Data Visiting | 13 January 2026 | |
| Data Visiting Study Group Agenda & Meeting Minutes | Minutes | Regulatory & Ethics Work Stream (REWS) | Data Visiting, Data Visiting | 13 January 2026 | |
| Diversity in Datasets meeting minutes (29 March 2023) | Minutes | Regulatory & Ethics Work Stream (REWS) | Diversity in Datasets | 9 January 2026 | |
| Genomic sequencing in newborn screening policy tool | Principles & Policies | Regulatory & Ethics Work Stream (REWS) | Genomic sequencing in newborn screening | 12 December 2025 | |
| Genomic sequencing in newborn screening literature synopsis | Other | Regulatory & Ethics Work Stream (REWS) | Genomic sequencing in newborn screening | 11 December 2025 | |
| Data Passports Introduction | Presentation | Data Passports | 8 December 2025 | ||
| Data Passports Meeting Minutes | Minutes, Agenda | Data Passports | 8 December 2025 | ||
| Clinical Genomics Laboratory Community Meetings | Minutes | Clinical Genomics Laboratory Community | 2 December 2025 | ||
| GA4GH Implementation Forum (GIF) Ask Me Anything: Passports, Visas, and AAI | Implementation Support | Data Use & Researcher Identity (DURI) Work Stream, Data Security Work Stream | Passports, Data Passports, Authorisation and Authentication Infrastructure (AAI) | 13 November 2025 | |
| REWS road map (2025 to 2027) | Road Map | Regulatory & Ethics Work Stream (REWS) | 13 November 2025 | ||
| GA4GH 13th Plenary meeting report | Meeting Report | 7 November 2025 | |||
| From Global Standards to Local Implementation: Applying REWS’ Model Consent Clauses in African Research Settings (October Connect 2025) | Minutes | Regulatory & Ethics Work Stream (REWS) | Global ELSI: Building Global Capacity for Genomics Research | 8 October 2025 | |
| TASC Technical Specification Development |
Principles & Policies, Product Documentation | 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 | 17 September 2025 | ||
| Regulatory & Ethics Work Stream (REWS) Road Map 2025-2026 | Road Map | Regulatory & Ethics Work Stream (REWS) | 4 September 2025 | ||
| GA4GH and CRDSA Strategic Partnership Memorandum of Understanding | Other | 24 June 2025 | |||
| GA4GH Implementation Forum (GIF) Ask Me Anything: Phenopackets | Implementation Support | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream | Phenopackets | 21 May 2025 | |
| Genetic Discrimination Toolkit Meeting Minutes (May 2025) | Minutes | Regulatory & Ethics Work Stream (REWS) | Genetic Discrimination Toolkit, Position Statement on Genetic Discrimination | 7 May 2025 | |
| GA4GH April Connect 2025 Meeting Report | Meeting Report | 11 April 2025 | |||
| GA4GH Implementation Forum (GIF) Ask Me Anything: Beacon | Implementation Support | Discovery Work Stream | Beacon | 17 March 2025 | |
| GA4GH Data Sharing Lexicon | Product Documentation | Regulatory & Ethics Work Stream (REWS) | Data Sharing Lexicon | 12 February 2025 | |
| International Genomic Data Sharing by Health Technologies Industries: Points to Consider | Other | Regulatory & Ethics Work Stream (REWS) | 9 January 2025 | ||
| Model Data Access Agreement (DAA) Clauses | Toolkit Component | Regulatory & Ethics Work Stream (REWS), Data Use & Researcher Identity (DURI) Work Stream | Data Access Committee Review Standards (DACReS) Toolkit, Data Access Committee Review Standards (DACReS) Toolkit, Ethical Provenance Toolkit, Ethical Provenance Toolkit | 5 December 2024 | |
| 12th Plenary Meeting Report | Meeting Report | 19 November 2024 | |||
| Generative AI for Genomic Data Sharing (September Connect 2024) | Minutes | Regulatory & Ethics Work Stream (REWS) | Generative AI for Genomic Data Sharing | 17 September 2024 | |
| GIF Charter | Other | 3 September 2024 | |||
| GA4GH Updates Report — August 2024 | Occasional Newsletter Updates | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Federated Analysis Work Stream (formerly 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 August 2024 | |
| Product Development and Approval Process diagram | Graphic | 21 August 2024 | |||
| Cancer Community meeting minutes | Minutes | Cancer Community | 27 June 2024 | ||
| Cancer Community presentation schedule | Other | Cancer Community | 27 June 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, Federated Analysis Work Stream (formerly 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 | ||
| Genetic Discrimination Toolkit Meeting Minutes (May 2024) | Minutes | Regulatory & Ethics Work Stream (REWS) | Genetic Discrimination Toolkit | 16 May 2024 | |
| HDR UK::GA4GH Strategic Partnership | Other | 16 April 2024 | |||
| GA4GH and RDA Strategic Partnership Memorandum of Understanding | Other | 15 April 2024 | |||
| GA4GH Updates Report - April 2024 | Occasional Newsletter Updates | 1 April 2024 | |||
| Diversity in Datasets Policy v2.4 | Principles & Policies | Regulatory & Ethics Work Stream (REWS) | Diversity in Datasets | 27 March 2024 | |
| 2024 Cloud Work Stream Roadmap | Road Map | Federated Analysis Work Stream (formerly Cloud Work Stream) | Tool Registry Service (TRS), Data Repository Service (DRS), Task Execution Service (TES), Workflow Execution Service (WES) | 12 March 2024 | |
| REWS AI/ML meeting minutes (6 March 2024) | Minutes | Regulatory & Ethics Work Stream (REWS) | Generative AI for Genomic Data Sharing | 6 March 2024 | |
| Federated Cohort Building meeting minutes | Minutes | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Discovery Work Stream | Federated Cohort Building | 22 February 2024 | |
| Experiments Metadata Standards - Scope Statement | Other | Discovery Work Stream | Experiments Metadata Checklist (Expmeta) | 21 February 2024 | |
| Rare Disease Community of Interest Connect workshop September 2023 | Agenda | Rare Disease Community | 20 February 2024 | ||
| Rare Disease Community of Interest meeting minutes | Minutes | Rare Disease Community | 20 February 2024 | ||
| NIH and GA4GH Memorandum of Agreement | Other | 14 February 2024 | |||
| GA4GH Implementations Criteria and Catalogue | Implementation Support | 7 February 2024 | |||
| REWS AI/ML meeting minutes (23 January 2024) | Minutes | Regulatory & Ethics Work Stream (REWS) | Generative AI for Genomic Data Sharing | 23 January 2024 | |
| REWS AI/ML Agenda meeting minutes (29 November 2023) | Minutes | Regulatory & Ethics Work Stream (REWS) | Generative AI for Genomic Data Sharing | 29 November 2023 | |
| Categorical Variation (CatVar) meeting minutes | Minutes | Categorical Variation Representation Specification (Cat-VRS) | 8 November 2023 | ||
| Ethical Preparedness for Pandemics and Epidemics (EPPE) Framework meeting minutes | Minutes | Pathogen Genomic Data Sharing: Bridging the Sovereignty and Access Divide | 8 November 2023 | ||
| Ethical Preparedness for Pandemics and Epidemics Framework in-progress documentation | Product Documentation | Regulatory & Ethics Work Stream (REWS) | Pathogen Genomic Data Sharing: Bridging the Sovereignty and Access Divide | 8 November 2023 | |
| Experiments Metadata Standard in-progress documentation | Product Documentation | Discovery Work Stream | Experiments Metadata Checklist (Expmeta) | 8 November 2023 | |
| Experiments Metadata Standard meeting minutes | Minutes | Experiments Metadata Checklist (Expmeta) | 8 November 2023 | ||
| Meeting Minutes: GKS – Structural Variation Special Interest Group | Minutes | Genomic Knowledge Standards (GKS) Work Stream | Variation Representation Specification (VRS) | 8 November 2023 | |
| Meeting Report: 11th Plenary | Meeting Report | 7 November 2023 | |||
| Meeting Report: September Connect 2023 | Meeting Report | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Federated Analysis Work Stream (formerly 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 November 2023 | ||
| Public Attitudes for Genomic Policy Brief: genetic exceptionalism | Product Documentation | Regulatory & Ethics Work Stream (REWS) | Public Attitudes for Genomic Policy — Blog Posts | 13 October 2023 | |
| Data Model and Schema Consensus Study Group Charter | Product Documentation | Discovery Work Stream | Data Model and Schema Consensus (DaMaSC) | 30 September 2023 | |
| 2023 Driver Projects Infographic | Graphic | 20 September 2023 | |||
| GA4GH Product Development and Approval Process | Principles & Policies | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Federated Analysis Work Stream (formerly 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 September 2023 | ||
| Code of Ethics and Community Conduct (CECC) | Principles & Policies | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Federated Analysis Work Stream (formerly 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, 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, Pathogen Genomic Data Sharing: Bridging the Sovereignty and Access Divide, Ethical Provenance Toolkit, Ethics Review Recognition Policy, Experiments Metadata Checklist (Expmeta), 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, Health Data Sharing, Privacy, and Regulatory Forum (formerly GDPR Forum), Genetic Data Encryption (Crypt4GH), Genetic Discrimination Toolkit, Genetic Discrimination: Implications for Data Sharing Projects (GEDI), Genetic Variation Formats (VCF), htsget, Consent Clauses for Large Scale Initiatives, 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 Sequences, 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 Specification (VRS), Whole Genome Sequencing (WGS) Quality Control (QC) 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 September 2023 | |
| Guidelines for respectful engagement | Principles & Policies | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Federated Analysis Work Stream (formerly 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 September 2023 | ||
| Procedures for reviewing reported violations of the Code of Ethics and Community Conduct | Principles & Policies | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Federated Analysis Work Stream (formerly 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 September 2023 | ||
| Public Attitudes for Genomic Policy Brief: familiarity | Toolkit Component | Regulatory & Ethics Work Stream (REWS) | Public Attitudes for Genomic Policy — Blog Posts | 11 September 2023 | |
| Product Approval Process (2019) | Principles & Policies | 19 July 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 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 April 2023 | |
| GA4GH community response to COVID-19 | Other | 19 April 2023 | |||
| Archived: Consent Tools | Other | Regulatory & Ethics Work Stream (REWS) | 6 April 2023 | ||
| Archived: profile completion rule set for ADA-M v1.0 | Product Documentation | Regulatory & Ethics Work Stream (REWS) | 6 April 2023 | ||
| Archived: technology primer: overview of technological solutions to support privacy preserving record linkage | Product Documentation | Regulatory & Ethics Work Stream (REWS) | 6 April 2023 | ||
| Archived: Windows software link for ADA-M (Automatable Discovery and Access Matrix) | Other | Regulatory & Ethics Work Stream (REWS) | 6 April 2023 | ||
| Informational packet: getting involved with GA4GH | Other | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Federated Analysis Work Stream (formerly 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 April 2023 | ||
| Phenopackets implementation resources | Implementation Support | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream | Phenopackets | 30 March 2023 | |
| Diversity in Datasets meeting minutes (28 March 2023) | Minutes | Regulatory & Ethics Work Stream (REWS) | Diversity in Datasets | 28 March 2023 | |
| Driver Project Application Form (2023) | Other | 11 March 2023 | |||
| Meeting minutes: Clin/Pheno (2023 to 2024) | Minutes | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream | Pedigree, Phenopackets | 11 March 2023 | |
| Meeting minutes: Crypt4gh | Minutes | Large-Scale Genomics (LSG) Work Stream, Data Security Work Stream | Genetic Data Encryption (Crypt4GH) | 11 March 2023 | |
| Meeting minutes: Discovery (2021 to 2023) | Minutes | Discovery Work Stream | 11 March 2023 | ||
| Meeting minutes: Discovery — Data Connect (2021 to 2023) | Minutes | Discovery Work Stream | Data Connect | 11 March 2023 | |
| Meeting minutes: File Formats | Minutes | Large-Scale Genomics (LSG) Work Stream, Genomic Knowledge Standards (GKS) Work Stream | Genetic Variation Formats (VCF), CRAM, SAM/BAM | 11 March 2023 | |
| Meeting minutes: Future of VCF | Minutes | Large-Scale Genomics (LSG) Work Stream, Genomic Knowledge Standards (GKS) Work Stream | Genetic Variation Formats (VCF) | 11 March 2023 | |
| Meeting minutes: GKS — Variation Representation (2023) | Minutes | Genomic Knowledge Standards (GKS) Work Stream | Variation Representation Specification (VRS) | 11 March 2023 | |
| Meeting minutes: Htsget | Minutes | Large-Scale Genomics (LSG) Work Stream, Federated Analysis Work Stream (formerly Cloud Work Stream) | htsget | 11 March 2023 | |
| Meeting minutes: Refget | Minutes | Large-Scale Genomics (LSG) Work Stream, Federated Analysis Work Stream (formerly Cloud Work Stream) | refget Sequences | 11 March 2023 | |
| Meeting minutes: RNAget | Minutes | Large-Scale Genomics (LSG) Work Stream, Federated Analysis Work Stream (formerly Cloud Work Stream) | RNAget | 11 March 2023 | |
| Meeting minutes: Sequence Annotation (2022 to 2023) | Minutes | Genomic Knowledge Standards (GKS) Work Stream | Sequence Annotation (SA) | 11 March 2023 | |
| Meeting minutes: Technical Alignment Subcommittee (TASC) | Minutes | 11 March 2023 | |||
| Meeting minutes: Variant Annotation (2021 to 2023) | Minutes | Genomic Knowledge Standards (GKS) Work Stream | Variant Annotation (VA) | 11 March 2023 | |
| Start-up guide: refget | Implementation Support, Product Documentation | Large-Scale Genomics (LSG) Work Stream, Federated Analysis Work Stream (formerly Cloud Work Stream) | refget Sequences | 10 March 2023 | |
| Meeting minutes: Quality Control of Whole Genome Sequencing | Minutes | Large-Scale Genomics (LSG) Work Stream, Genomic Knowledge Standards (GKS) Work Stream | Whole Genome Sequencing (WGS) Quality Control (QC) Standards | 6 March 2023 | |
| Meeting minutes: Technical Alignment Subcommittee (TASC) | Minutes | 6 March 2023 | |||
| Road map: Quality Control of Whole Genome Sequencing | Road Map | Large-Scale Genomics (LSG) Work Stream, Genomic Knowledge Standards (GKS) Work Stream | Whole Genome Sequencing (WGS) Quality Control (QC) Standards | 6 March 2023 | |
| Diversity in Datasets meeting minutes (1 March 2023) | Minutes | Regulatory & Ethics Work Stream (REWS) | Diversity in Datasets | 1 March 2023 | |
| Diversity in Datasets meeting minutes (28 February 2023) | Minutes | Regulatory & Ethics Work Stream (REWS) | Diversity in Datasets | 28 February 2023 | |
| GA4GH Strategic Road Map (2015 to 2016) | Planning | 27 February 2023 | |||
| GA4GH response to proposed updates to the NIH Genomic Data Sharing Policy | Other | 26 February 2023 | |||
| Meeting report: March Connect 2021 | Meeting Report | 22 February 2023 | |||
| Diversity in Datasets meeting minutes (23 January 2023) | Minutes | Regulatory & Ethics Work Stream (REWS) | Diversity in Datasets | 23 January 2023 | |
| Machine-Readable Consent Guidance (v1.0) | Product Documentation | Regulatory & Ethics Work Stream (REWS) | Machine Readable Consent Guidance (MRCG) | 12 January 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 January 2023 | |
| Meeting report: 1st Plenary | Meeting Report | 11 January 2023 | |||
| Meeting report: 2nd Plenary | Meeting Report | 11 January 2023 | |||
| Meeting report: 3rd Plenary | Meeting Report | 11 January 2023 | |||
| Meeting report: 4th Plenary | Meeting Report | 11 January 2023 | |||
| Meeting report: 5th Plenary | Meeting Report | 11 January 2023 | |||
| Meeting report: 6th Plenary | Meeting Report | 11 January 2023 | |||
| Meeting report: 7th Plenary | Meeting Report | 11 January 2023 | |||
| Meeting report: 8th Plenary | Meeting Report | 11 January 2023 | |||
| Meeting report: 9th Plenary | Meeting Report | 11 January 2023 | |||
| Meeting report: April Connect 2022 | Meeting Report | 11 January 2023 | |||
| Meeting report: June Connect 2018 | Meeting Report | 11 January 2023 | |||
| Meeting report: March Connect 2020 | Meeting Report | 11 January 2023 | |||
| Meeting report: May Connect 2019 | Meeting Report | 11 January 2023 | |||
| Meeting report: November Connect 2022 | Meeting Report | 11 January 2023 | |||
| Meeting report: October Connect 2021 | Meeting Report | 11 January 2023 | |||
| REWS working definition of equity, diversity, and inclusion (EDI) | Working | Regulatory & Ethics Work Stream (REWS) | Diversity in Datasets | 11 January 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 January 2023 | |
| Diversity in Datasets meeting minutes (13 December 2022) | Minutes | Regulatory & Ethics Work Stream (REWS) | Diversity in Datasets | 13 December 2022 | |
| Diversity in Datasets meeting minutes (2 November 2022) | Minutes | Regulatory & Ethics Work Stream (REWS) | Diversity in Datasets | 2 November 2022 | |
| 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 October 2022 | |
| Meeting agenda: REWS — Diversity in Datasets (11 Oct 2022) | Agenda | Regulatory & Ethics Work Stream (REWS) | Diversity in Datasets | 11 October 2022 | |
| Meeting agenda: Clinical Data Sharing and Consent (6 Oct 2022) | Agenda | Regulatory & Ethics Work Stream (REWS) | Clinical Data Sharing | 6 October 2022 | |
| GA4GH GDPR Brief- the EU Data Governance Act — new pathways for consented reuse of information (October 2022) | GDPR | 3 October 2022 | |||
| Strategic Plan (2023) | Road Map, Planning | 27 September 2022 | |||
| Meeting minutes: Large-Scale Genomics | Minutes | Large-Scale Genomics (LSG) Work Stream | 25 September 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 September 2022 | |
| Meeting agenda: REWS Diversity in Datasets (8 Sep 2022) | Agenda | Regulatory & Ethics Work Stream (REWS) | Diversity in Datasets | 8 September 2022 | |
| Diversity in Datasets meeting minutes (7 September 2022) | Minutes | Regulatory & Ethics Work Stream (REWS) | Diversity in Datasets | 7 September 2022 | |
| Infographic: Your DNA Your Say — trust and trustworthiness | Graphic | Regulatory & Ethics Work Stream (REWS) | Your DNA, Your Say (Participant Values Survey) | 31 August 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 August 2022 | |
| Meeting agenda: REWS — Genetic Discrimination | Agenda | Regulatory & Ethics Work Stream (REWS) | Genetic Discrimination Toolkit | 30 August 2022 | |
| Poster: REWS selected outputs (2022) | Poster | Regulatory & Ethics Work Stream (REWS) | 12 August 2022 | ||
| Meeting agenda: REWS — Diversity in Datasets (28 Jul 2022) | Agenda | Regulatory & Ethics Work Stream (REWS) | Diversity in Datasets | 28 July 2022 | |
| Meeting agenda: Public Attitudes for Genomic Policy | Agenda | Regulatory & Ethics Work Stream (REWS) | Public Attitudes for Genomic Policy — Blog Posts | 5 July 2022 | |
| Meeting agenda: REWS — Diversity in Datasets (29 Jun 2022) | Agenda | Regulatory & Ethics Work Stream (REWS) | Diversity in Datasets | 29 June 2022 | |
| Working document: Diversity in Datasets | Working | Regulatory & Ethics Work Stream (REWS) | Diversity in Datasets | 29 June 2022 | |
| Clinical Genomic Consent Clauses (v1.0) | Product Documentation, Toolkit Component | Regulatory & Ethics Work Stream (REWS) | Consent Toolkit | 23 June 2022 | |
| Meeting agenda: Clinical Data Sharing and Consent (16 Jun 2022) | Agenda | Regulatory & Ethics Work Stream (REWS) | Clinical Data Sharing | 16 June 2022 | |
| GA4GH GDPR Brief- data protection implications of publishing metadata to enable discovery (June 2022) | GDPR | 6 June 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 April 2022 | |
| Working document: Computable Cohort Hackathon 2022 | Working | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream | Federated Cohort Building | 28 April 2022 | |
| Meeting agenda: Ethical Provenance Toolkit (27 Apr 2022) | Agenda | Regulatory & Ethics Work Stream (REWS) | Ethical Provenance Toolkit | 27 April 2022 | |
| Diversity in Datasets meeting minutes (25 April 2022) | Minutes | Regulatory & Ethics Work Stream (REWS) | Diversity in Datasets | 25 April 2022 | |
| Meeting agenda: REWS Diversity in Datasets (25 Apr 2022) | Agenda | Regulatory & Ethics Work Stream (REWS) | Diversity in Datasets | 25 April 2022 | |
| Large Scale Initiatives Consent Clauses (v1.0) | Product Documentation, Toolkit Component | Regulatory & Ethics Work Stream (REWS) | Consent Toolkit | 21 April 2022 | |
| Working document: Genetic Discrimination paper questions | Working | Regulatory & Ethics Work Stream (REWS) | Genetic Discrimination Toolkit | 19 April 2022 | |
| GA4GH GDPR Brief- federated analysis for responsible data sharing under the GDPR (April 2022) | GDPR | 4 April 2022 | |||
| Gap analysis: DURI (2020) | Planning | Data Use & Researcher Identity (DURI) Work Stream | 26 March 2022 | ||
| Meeting agenda: Clinical Data Sharing and Consent (17 Mar 2022) | Agenda | Regulatory & Ethics Work Stream (REWS) | Clinical Data Sharing | 17 March 2022 | |
| Working document: Diversity in Datasets — usability, operationalisation, and transparency | Working | Regulatory & Ethics Work Stream (REWS) | Diversity in Datasets | 14 March 2022 | |
| Road map: Regulatory & Ethics (2022 to 2023) | Road Map | Regulatory & Ethics Work Stream (REWS) | 1 March 2022 | ||
| Meeting agenda: REWS — Genetic Discrimination (23 Feb 2022) | Agenda | Regulatory & Ethics Work Stream (REWS) | Genetic Discrimination Toolkit | 23 February 2022 | |
| Road map: Clin/Pheno (2022 to 2023) | Road Map | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream | 22 February 2022 | ||
| Working document: Pedigree road map planning (2022 to 2023) | Planning | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream | Pedigree | 16 February 2022 | |
| GA4GH GDPR Brief- what constitutes an "international data transfer"? Recent developments by the EDPB and implications for genomic and health data sharing (February 2022) | GDPR | 1 February 2022 | |||
| Informational document: Onboarding Programme | Other | 1 February 2022 | |||
| Working document: Passports v1.2 work-order token proposal (January 2022) | Working | Data Use & Researcher Identity (DURI) Work Stream | Passports | 17 January 2022 | |
| Meeting minutes: Data Security — AAI (2022) | Minutes | Data Security Work Stream | Authorisation and Authentication Infrastructure (AAI) | 13 January 2022 | |
| Meeting minutes: crypt4gh (2022) | Minutes | Large-Scale Genomics (LSG) Work Stream | Genetic Data Encryption (Crypt4GH) | 4 January 2022 | |
| Meeting minutes: RNASeq (2022) | Minutes | Large-Scale Genomics (LSG) Work Stream | RNAget | 4 January 2022 | |
| REWS AI/ML meeting minutes (8 December 2021) | Minutes | Regulatory & Ethics Work Stream (REWS) | Generative AI for Genomic Data Sharing | 8 December 2021 | |
| Working document: common dataset for family health history | Working | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream | Pedigree | 8 December 2021 | |
| GA4GH GDPR Brief- processing the data of the deceased for scientific research purposes — looking beyond the GDPR? (December 2022) | GDPR | 6 December 2021 | |||
| Genetic Discrimination: Implications for Data Sharing Projects (GeDI) (v1.0) | Product Documentation, Toolkit Component | Regulatory & Ethics Work Stream (REWS) | Genetic Discrimination: Implications for Data Sharing Projects (GEDI), Genetic Discrimination Toolkit | 2 December 2021 | |
| Road map: Discovery (2022 to 2023) | Road Map | Discovery Work Stream | 3 November 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 October 2021 | |
| Pediatric Consent to Genetic Research Clauses (v1.0) | Product Documentation, Toolkit Component | Regulatory & Ethics Work Stream (REWS) | Consent Toolkit | 27 October 2021 | |
| Road map: Data Use & Researcher Identities (2022) | Road Map | Data Use & Researcher Identity (DURI) Work Stream | 25 October 2021 | ||
| Meeting minutes: REWS — Diversity in Datasets (2021) | Minutes | Regulatory & Ethics Work Stream (REWS) | Diversity in Datasets | 21 October 2021 | |
| Bias in AI/ML (October Connect 2021) | Minutes | Regulatory & Ethics Work Stream (REWS) | Generative AI for Genomic Data Sharing | 14 October 2021 | |
| GA4GH GDPR Brief- navigating international data transfers under GDPR — impediments facing US federal science agencies and research universities (October 2021) | GDPR | 4 October 2021 | |||
| REWS: AI/ML Bias Exploration | Minutes | Regulatory & Ethics Work Stream (REWS) | Generative AI for Genomic Data Sharing | 9 September 2021 | |
| GA4GH GDPR Brief- the role of the European Data Protection Board in interpreting the GDPR (August 2021) | GDPR | 2 August 2021 | |||
| Working document: Computable Cohort Representation — scope | Working | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream | Federated Cohort Building | 27 July 2021 | |
| Meeting minutes: Data Security — AAI (2021) | Minutes | Data Security Work Stream | Authorisation and Authentication Infrastructure (AAI) | 23 July 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 July 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 June 2021 | |
| GA4GH GDPR Brief- familial genomic data and the GDPR (June 2021) | GDPR | 7 June 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 | |
| GA4GH GDPR Brief- finding a route out of the impasse? Ordering the secondary processing of already gathered data in a code of conduct (May 2021) | GDPR | 3 May 2021 | |||
| Meeting minutes: Regulatory & Ethics Work Stream | Minutes | Regulatory & Ethics Work Stream (REWS) | 29 April 2021 | ||
| Meeting agenda: REWS — Genetic Discrimination (8 Apr 2021) | Agenda | Regulatory & Ethics Work Stream (REWS) | Genetic Discrimination Toolkit | 8 April 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 March 2021 | |
| GA4GH Sequence Annotation definitions and model | Working | Genomic Knowledge Standards (GKS) Work Stream | Sequence Annotation (SA) | 6 February 2021 | |
| GA4GH GDPR Brief- the public interest and the GDPR (February 2021) | GDPR | 1 February 2021 | |||
| Meeting minutes: Discovery (2021 to 2023) | Minutes | 1 February 2021 | |||
| Familial Consent Clauses (v1.0) | Product Documentation, Toolkit Component | Regulatory & Ethics Work Stream (REWS) | Consent Toolkit | 20 January 2021 | |
| Meeting minutes: Data Security (2021 to 2022) | Minutes | Data Security Work Stream | 15 December 2020 | ||
| Meeting minutes: Data Use & Researcher Identities (2021 to 2022) | Minutes | Data Use & Researcher Identity (DURI) Work Stream | 15 December 2020 | ||
| Meeting minutes: DURI — Data Use (2021 to 2022) | Minutes | Data Use & Researcher Identity (DURI) Work Stream | Data Use Ontology (DUO) | 14 December 2020 | |
| Meeting minutes: Passports (2021 to 2022) | Minutes | Data Use & Researcher Identity (DURI) Work Stream | Passports | 14 December 2020 | |
| Meeting minutes: LSG — htsget (2021 to 2022) | Minutes | Large-Scale Genomics (LSG) Work Stream | htsget | 12 December 2020 | |
| Meeting minutes: Clin/Pheno (2021 to 2022) | Minutes | 9 December 2020 | |||
| Meeting minutes: crypt4gh (2021) | Minutes | Large-Scale Genomics (LSG) Work Stream | Genetic Data Encryption (Crypt4GH) | 8 December 2020 | |
| Meeting minutes: File Formats (2021) | Minutes | Large-Scale Genomics (LSG) Work Stream | CRAM, Genetic Variation Formats (VCF), Browser Extensible Data (BED) | 8 December 2020 | |
| Meeting minutes: Future of VCF (2021) | Minutes | Large-Scale Genomics (LSG) Work Stream | Genetic Variation Formats (VCF) | 8 December 2020 | |
| Meeting minutes: refget (2021) | Minutes | Large-Scale Genomics (LSG) Work Stream | refget Sequences | 8 December 2020 | |
| Meeting minutes: RNASeq (2021) | Minutes | Large-Scale Genomics (LSG) Work Stream | RNAget | 8 December 2020 | |
| GA4GH GDPR Brief- international “onward” transfers of genomic data under the EU Standard Contractual Clauses (December 2020) | GDPR | 7 December 2020 | |||
| Meeting minutes: Discovery — Data Connect (2021 to 2022) | Minutes | Discovery Work Stream | Data Connect | 7 December 2020 | |
| GA4GH Inc. By-Law | Other | 30 October 2020 | |||
| GA4GH Inc. Membership Agreement | Other | 12 October 2020 | |||
| Minutes: Consent Workshop, 9th Plenary | Minutes | Regulatory & Ethics Work Stream (REWS) | Consent Toolkit | 28 September 2020 | |
| Meeting minutes: Cloud (November 2020 to present) | Minutes | Federated Analysis Work Stream (formerly Cloud Work Stream) | 22 September 2020 | ||
| Consent Clauses for Genomic Research (v1.0) | Product Documentation, Toolkit Component | Regulatory & Ethics Work Stream (REWS) | Consent Toolkit | 8 July 2020 | |
| Ethics Review Recognition Policy (v2.0) | Product Documentation | Regulatory & Ethics Work Stream (REWS) | Ethics Review Recognition Policy | 8 July 2020 | |
| Cloud APIs comic (v4.0) | Other | Federated Analysis Work Stream (formerly Cloud Work Stream) | Workflow Execution Service (WES), Tool Registry Service (TRS), Task Execution Service (TES), Data Repository Service (DRS) | 8 June 2020 | |
| Meeting minutes: Clin/Pheno — Phenopackets Cancer Task Team | Minutes | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream | Phenopackets | 27 May 2020 | |
| Strategic Plan (2020) | Road Map | 29 April 2020 | |||
| Copyright Policy (v1.0) | Principles & Policies | 20 April 2020 | |||
| Gap analysis: Data Security (2020) | Planning | Data Security Work Stream | 26 March 2020 | ||
| Minutes: consent workshop | Minutes | Regulatory & Ethics Work Stream (REWS) | Consent Toolkit | 11 March 2020 | |
| Minutes: working meeting on consent | Minutes | Regulatory & Ethics Work Stream (REWS) | Consent Toolkit | 31 January 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 September 2019 | |
| Consent Policy (v2.0) | Product Documentation | Regulatory & Ethics Work Stream (REWS) | Consent Policy | 2 September 2019 | |
| Meeting recordings: Clin/Pheno | Recording | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream | 29 August 2019 | ||
| Meeting minutes: Genomic Knowledge Standards | Minutes | Genomic Knowledge Standards (GKS) Work Stream | 7 August 2019 | ||
| Data Privacy and Security Policy (v2.0) | Product Documentation | Regulatory & Ethics Work Stream (REWS) | Data Privacy and Security Policy | 1 August 2019 | |
| Model consent clauses for rare disease research (v1.0) | Product Documentation, Toolkit Component | Regulatory & Ethics Work Stream (REWS) | Consent Toolkit | 1 August 2019 | |
| Working document: Pedigree data — use case/requirements | Working | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream | Pedigree | 8 July 2019 | |
| Working document: Pedigree questionnaire results | Presentation | Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream | Pedigree | 4 July 2019 | |
| ELIXIR::GA4GH Strategic Partnership | Other | 2 May 2019 | |||
| CRAM: the genomics compression standard | Other | Large-Scale Genomics (LSG) Work Stream, Genomic Knowledge Standards (GKS) Work Stream | CRAM | 26 April 2019 | |
| Strategic Plan (2017) | Road Map, Planning | 12 April 2019 | |||
| Meeting minutes: Discovery (2019 to 2020) | Minutes | Discovery Work Stream | Beacon, Data Connect, Service Info, Service Registry | 25 January 2019 | |
| Meeting minutes: Discovery Beacon API (2022 to 2023) | Minutes | Discovery Work Stream | Beacon | 22 January 2019 | |
| Archived: Automatable Discovery and Access Matrix (ADA-M) guidance document | Product Documentation | Regulatory & Ethics Work Stream (REWS) | 7 January 2019 | ||
| Archived: privacy-preserving record linkage: ethico-legal considerations | Product Documentation | Regulatory & Ethics Work Stream (REWS) | 20 March 2018 | ||
| Organisational Membership Agreement (v2.0) | Other | 31 January 2018 | |||
| Constitution (v2.0) | Principles & Policies | 22 January 2018 | |||
| Standards for Professional Conduct / Code of Conduct (v1.0) | Principles & Policies | 22 January 2018 | |||
| Meeting minutes: Data Security (2017 to 2018) | Minutes | Data Security Work Stream | 26 September 2017 | ||
| Meeting minutes: Discovery (2017 to 2018) | Minutes | Discovery Work Stream | Data Connect, Beacon, Service Registry, Service Info | 25 September 2017 | |
| Product Approval Process (2017) | Principles & Policies | 27 July 2017 | |||
| GA4GH Ethics Review Recognition Policy (v1.0) | Product Documentation | Regulatory & Ethics Work Stream (REWS) | Ethics Review Recognition Policy | 13 February 2017 | |
| Archived: Automatable Discovery and Access Matrix (ADA-M) spreadsheet | Product Documentation | Regulatory & Ethics Work Stream (REWS) | 1 September 2016 | ||
| Archived: Data Sharing Lexicon | Product Documentation | Regulatory & Ethics Work Stream (REWS) | 15 March 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 February 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 February 2016 | |
| Archived: Accountability Policy (v1.0) | Product Documentation | Regulatory & Ethics Work Stream (REWS) | 1 February 2016 | ||
| Archived: Data Use Categories and Requirements (Consent Codes) | Product Documentation | Regulatory & Ethics Work Stream (REWS) | 21 January 2016 | ||
| Archived: Mac software link for ADA-M (Automatable Discovery and Access Matrix) | Other | Regulatory & Ethics Work Stream (REWS) | 1 January 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 March 2015 | |
| White paper: creating a global alliance to enable responsible sharing of genomic and clinical data | Planning | 3 June 2013 | |||
| Letter of intent to establish the Global Alliance | Planning | 29 April 2013 |
GKM Meeting Minutes
Minutes
Genomic Knowledge Standards (GKS) Work Stream
Categorical Variation Representation Specification (Cat-VRS), Variation Representation Specification (VRS), Variant Annotation (VA)
16 October 2026
GA4GH Implementation Forum (GIF) Ask Me Anything: Crypt4GH
Implementation Support
Large-Scale Genomics (LSG) Work Stream, Data Security Work Stream
Genetic Data Encryption (Crypt4GH)
29 April 2026
Definition of Genetic Discrimination
Principles & Policies
Regulatory & Ethics Work Stream (REWS)
Genetic Discrimination Toolkit
2 March 2026
Genetic Discrimination Toolkit: Position Statement on Genetic Discrimination
Principles & Policies
Regulatory & Ethics Work Stream (REWS)
Position Statement on Genetic Discrimination, Genetic Discrimination Toolkit
27 February 2026
Data Governance Theme Team Meeting Minutes and Agenda
Minutes, Agenda
Neuroscience Community
22 January 2026
Data Harmonisation Theme Team Meeting Minutes and Agenda
Minutes, Agenda, Road Map
Neuroscience Community
22 January 2026
Scientific Collaboration and Education Theme Team Meeting Minutes and Agenda
Minutes, Agenda
Neuroscience Community
22 January 2026
April 2024 Connect Agenda - Data Visiting
Agenda
Regulatory & Ethics Work Stream (REWS)
Data Visiting, Data Visiting
13 January 2026
April Connect 2025 Agenda - Clinical data sharing
Minutes, Agenda
Regulatory & Ethics Work Stream (REWS)
13 January 2026
April Connect 2025 Agenda - Data Visiting
Agenda
Regulatory & Ethics Work Stream (REWS)
Data Visiting, Data Visiting
13 January 2026
Data Visiting Study Group Agenda & Meeting Minutes
Minutes
Regulatory & Ethics Work Stream (REWS)
Data Visiting, Data Visiting
13 January 2026
Diversity in Datasets meeting minutes (29 March 2023)
Minutes
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
9 January 2026
Genomic sequencing in newborn screening policy tool
Principles & Policies
Regulatory & Ethics Work Stream (REWS)
Genomic sequencing in newborn screening
12 December 2025
Genomic sequencing in newborn screening literature synopsis
Other
Regulatory & Ethics Work Stream (REWS)
Genomic sequencing in newborn screening
11 December 2025
Clinical Genomics Laboratory Community Meetings
Minutes
Clinical Genomics Laboratory Community
2 December 2025
GA4GH Implementation Forum (GIF) Ask Me Anything: Passports, Visas, and AAI
Implementation Support
Data Use & Researcher Identity (DURI) Work Stream, Data Security Work Stream
Passports, Data Passports, Authorisation and Authentication Infrastructure (AAI)
13 November 2025
From Global Standards to Local Implementation: Applying REWS’ Model Consent Clauses in African Research Settings (October Connect 2025)
Minutes
Regulatory & Ethics Work Stream (REWS)
Global ELSI: Building Global Capacity for Genomics Research
8 October 2025
TASC Technical Specification Development
Principles & Policies, Product Documentation
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
17 September 2025
Regulatory & Ethics Work Stream (REWS) Road Map 2025-2026
Road Map
Regulatory & Ethics Work Stream (REWS)
4 September 2025
GA4GH Implementation Forum (GIF) Ask Me Anything: Phenopackets
Implementation Support
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Phenopackets
21 May 2025
Genetic Discrimination Toolkit Meeting Minutes (May 2025)
Minutes
Regulatory & Ethics Work Stream (REWS)
Genetic Discrimination Toolkit, Position Statement on Genetic Discrimination
7 May 2025
GA4GH Implementation Forum (GIF) Ask Me Anything: Beacon
Implementation Support
Discovery Work Stream
Beacon
17 March 2025
GA4GH Data Sharing Lexicon
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Data Sharing Lexicon
12 February 2025
International Genomic Data Sharing by Health Technologies Industries: Points to Consider
Other
Regulatory & Ethics Work Stream (REWS)
9 January 2025
Model Data Access Agreement (DAA) Clauses
Toolkit Component
Regulatory & Ethics Work Stream (REWS), Data Use & Researcher Identity (DURI) Work Stream
Data Access Committee Review Standards (DACReS) Toolkit, Data Access Committee Review Standards (DACReS) Toolkit, Ethical Provenance Toolkit, Ethical Provenance Toolkit
5 December 2024
Generative AI for Genomic Data Sharing (September Connect 2024)
Minutes
Regulatory & Ethics Work Stream (REWS)
Generative AI for Genomic Data Sharing
17 September 2024
GA4GH Updates Report — August 2024
Occasional Newsletter Updates
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Federated Analysis Work Stream (formerly 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 August 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, Federated Analysis Work Stream (formerly 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
Genetic Discrimination Toolkit Meeting Minutes (May 2024)
Minutes
Regulatory & Ethics Work Stream (REWS)
Genetic Discrimination Toolkit
16 May 2024
Diversity in Datasets Policy v2.4
Principles & Policies
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
27 March 2024
2024 Cloud Work Stream Roadmap
Road Map
Federated Analysis Work Stream (formerly Cloud Work Stream)
Tool Registry Service (TRS), Data Repository Service (DRS), Task Execution Service (TES), Workflow Execution Service (WES)
12 March 2024
REWS AI/ML meeting minutes (6 March 2024)
Minutes
Regulatory & Ethics Work Stream (REWS)
Generative AI for Genomic Data Sharing
6 March 2024
Federated Cohort Building meeting minutes
Minutes
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Discovery Work Stream
Federated Cohort Building
22 February 2024
Experiments Metadata Standards - Scope Statement
Other
Discovery Work Stream
Experiments Metadata Checklist (Expmeta)
21 February 2024
Rare Disease Community of Interest Connect workshop September 2023
Agenda
Rare Disease Community
20 February 2024
REWS AI/ML meeting minutes (23 January 2024)
Minutes
Regulatory & Ethics Work Stream (REWS)
Generative AI for Genomic Data Sharing
23 January 2024
REWS AI/ML Agenda meeting minutes (29 November 2023)
Minutes
Regulatory & Ethics Work Stream (REWS)
Generative AI for Genomic Data Sharing
29 November 2023
Categorical Variation (CatVar) meeting minutes
Minutes
Categorical Variation Representation Specification (Cat-VRS)
8 November 2023
Ethical Preparedness for Pandemics and Epidemics (EPPE) Framework meeting minutes
Minutes
Pathogen Genomic Data Sharing: Bridging the Sovereignty and Access Divide
8 November 2023
Ethical Preparedness for Pandemics and Epidemics Framework in-progress documentation
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Pathogen Genomic Data Sharing: Bridging the Sovereignty and Access Divide
8 November 2023
Experiments Metadata Standard in-progress documentation
Product Documentation
Discovery Work Stream
Experiments Metadata Checklist (Expmeta)
8 November 2023
Experiments Metadata Standard meeting minutes
Minutes
Experiments Metadata Checklist (Expmeta)
8 November 2023
Meeting Minutes: GKS – Structural Variation Special Interest Group
Minutes
Genomic Knowledge Standards (GKS) Work Stream
Variation Representation Specification (VRS)
8 November 2023
Meeting Report: September Connect 2023
Meeting Report
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Federated Analysis Work Stream (formerly 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 November 2023
Public Attitudes for Genomic Policy Brief: genetic exceptionalism
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Public Attitudes for Genomic Policy — Blog Posts
13 October 2023
Data Model and Schema Consensus Study Group Charter
Product Documentation
Discovery Work Stream
Data Model and Schema Consensus (DaMaSC)
30 September 2023
GA4GH Product Development and Approval Process
Principles & Policies
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Federated Analysis Work Stream (formerly 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 September 2023
Code of Ethics and Community Conduct (CECC)
Principles & Policies
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Federated Analysis Work Stream (formerly 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, 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, Pathogen Genomic Data Sharing: Bridging the Sovereignty and Access Divide, Ethical Provenance Toolkit, Ethics Review Recognition Policy, Experiments Metadata Checklist (Expmeta), 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, Health Data Sharing, Privacy, and Regulatory Forum (formerly GDPR Forum), Genetic Data Encryption (Crypt4GH), Genetic Discrimination Toolkit, Genetic Discrimination: Implications for Data Sharing Projects (GEDI), Genetic Variation Formats (VCF), htsget, Consent Clauses for Large Scale Initiatives, 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 Sequences, 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 Specification (VRS), Whole Genome Sequencing (WGS) Quality Control (QC) 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 September 2023
Guidelines for respectful engagement
Principles & Policies
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Federated Analysis Work Stream (formerly 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 September 2023
Procedures for reviewing reported violations of the Code of Ethics and Community Conduct
Principles & Policies
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Federated Analysis Work Stream (formerly 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 September 2023
Public Attitudes for Genomic Policy Brief: familiarity
Toolkit Component
Regulatory & Ethics Work Stream (REWS)
Public Attitudes for Genomic Policy — Blog Posts
11 September 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
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 April 2023
Archived: profile completion rule set for ADA-M v1.0
Product Documentation
Regulatory & Ethics Work Stream (REWS)
6 April 2023
Archived: technology primer: overview of technological solutions to support privacy preserving record linkage
Product Documentation
Regulatory & Ethics Work Stream (REWS)
6 April 2023
Archived: Windows software link for ADA-M (Automatable Discovery and Access Matrix)
Other
Regulatory & Ethics Work Stream (REWS)
6 April 2023
Informational packet: getting involved with GA4GH
Other
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream, Federated Analysis Work Stream (formerly 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 April 2023
Phenopackets implementation resources
Implementation Support
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Phenopackets
30 March 2023
Diversity in Datasets meeting minutes (28 March 2023)
Minutes
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
28 March 2023
Meeting minutes: Clin/Pheno (2023 to 2024)
Minutes
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Pedigree, Phenopackets
11 March 2023
Meeting minutes: Crypt4gh
Minutes
Large-Scale Genomics (LSG) Work Stream, Data Security Work Stream
Genetic Data Encryption (Crypt4GH)
11 March 2023
Meeting minutes: Discovery — Data Connect (2021 to 2023)
Minutes
Discovery Work Stream
Data Connect
11 March 2023
Meeting minutes: File Formats
Minutes
Large-Scale Genomics (LSG) Work Stream, Genomic Knowledge Standards (GKS) Work Stream
Genetic Variation Formats (VCF), CRAM, SAM/BAM
11 March 2023
Meeting minutes: Future of VCF
Minutes
Large-Scale Genomics (LSG) Work Stream, Genomic Knowledge Standards (GKS) Work Stream
Genetic Variation Formats (VCF)
11 March 2023
Meeting minutes: GKS — Variation Representation (2023)
Minutes
Genomic Knowledge Standards (GKS) Work Stream
Variation Representation Specification (VRS)
11 March 2023
Meeting minutes: Htsget
Minutes
Large-Scale Genomics (LSG) Work Stream, Federated Analysis Work Stream (formerly Cloud Work Stream)
htsget
11 March 2023
Meeting minutes: Refget
Minutes
Large-Scale Genomics (LSG) Work Stream, Federated Analysis Work Stream (formerly Cloud Work Stream)
refget Sequences
11 March 2023
Meeting minutes: RNAget
Minutes
Large-Scale Genomics (LSG) Work Stream, Federated Analysis Work Stream (formerly Cloud Work Stream)
RNAget
11 March 2023
Meeting minutes: Sequence Annotation (2022 to 2023)
Minutes
Genomic Knowledge Standards (GKS) Work Stream
Sequence Annotation (SA)
11 March 2023
Meeting minutes: Variant Annotation (2021 to 2023)
Minutes
Genomic Knowledge Standards (GKS) Work Stream
Variant Annotation (VA)
11 March 2023
Start-up guide: refget
Implementation Support, Product Documentation
Large-Scale Genomics (LSG) Work Stream, Federated Analysis Work Stream (formerly Cloud Work Stream)
refget Sequences
10 March 2023
Meeting minutes: Quality Control of Whole Genome Sequencing
Minutes
Large-Scale Genomics (LSG) Work Stream, Genomic Knowledge Standards (GKS) Work Stream
Whole Genome Sequencing (WGS) Quality Control (QC) Standards
6 March 2023
Road map: Quality Control of Whole Genome Sequencing
Road Map
Large-Scale Genomics (LSG) Work Stream, Genomic Knowledge Standards (GKS) Work Stream
Whole Genome Sequencing (WGS) Quality Control (QC) Standards
6 March 2023
Diversity in Datasets meeting minutes (1 March 2023)
Minutes
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
1 March 2023
Diversity in Datasets meeting minutes (28 February 2023)
Minutes
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
28 February 2023
Diversity in Datasets meeting minutes (23 January 2023)
Minutes
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
23 January 2023
Machine-Readable Consent Guidance (v1.0)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Machine Readable Consent Guidance (MRCG)
12 January 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 January 2023
REWS working definition of equity, diversity, and inclusion (EDI)
Working
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
11 January 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 January 2023
Diversity in Datasets meeting minutes (13 December 2022)
Minutes
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
13 December 2022
Diversity in Datasets meeting minutes (2 November 2022)
Minutes
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
2 November 2022
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 October 2022
Meeting agenda: REWS — Diversity in Datasets (11 Oct 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
11 October 2022
Meeting agenda: Clinical Data Sharing and Consent (6 Oct 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Clinical Data Sharing
6 October 2022
Meeting minutes: Large-Scale Genomics
Minutes
Large-Scale Genomics (LSG) Work Stream
25 September 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 September 2022
Meeting agenda: REWS Diversity in Datasets (8 Sep 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
8 September 2022
Diversity in Datasets meeting minutes (7 September 2022)
Minutes
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
7 September 2022
Infographic: Your DNA Your Say — trust and trustworthiness
Graphic
Regulatory & Ethics Work Stream (REWS)
Your DNA, Your Say (Participant Values Survey)
31 August 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 August 2022
Meeting agenda: REWS — Genetic Discrimination
Agenda
Regulatory & Ethics Work Stream (REWS)
Genetic Discrimination Toolkit
30 August 2022
Meeting agenda: REWS — Diversity in Datasets (28 Jul 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
28 July 2022
Meeting agenda: Public Attitudes for Genomic Policy
Agenda
Regulatory & Ethics Work Stream (REWS)
Public Attitudes for Genomic Policy — Blog Posts
5 July 2022
Meeting agenda: REWS — Diversity in Datasets (29 Jun 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
29 June 2022
Working document: Diversity in Datasets
Working
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
29 June 2022
Clinical Genomic Consent Clauses (v1.0)
Product Documentation, Toolkit Component
Regulatory & Ethics Work Stream (REWS)
Consent Toolkit
23 June 2022
Meeting agenda: Clinical Data Sharing and Consent (16 Jun 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Clinical Data Sharing
16 June 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 April 2022
Working document: Computable Cohort Hackathon 2022
Working
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Federated Cohort Building
28 April 2022
Meeting agenda: Ethical Provenance Toolkit (27 Apr 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Ethical Provenance Toolkit
27 April 2022
Diversity in Datasets meeting minutes (25 April 2022)
Minutes
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
25 April 2022
Meeting agenda: REWS Diversity in Datasets (25 Apr 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
25 April 2022
Large Scale Initiatives Consent Clauses (v1.0)
Product Documentation, Toolkit Component
Regulatory & Ethics Work Stream (REWS)
Consent Toolkit
21 April 2022
Working document: Genetic Discrimination paper questions
Working
Regulatory & Ethics Work Stream (REWS)
Genetic Discrimination Toolkit
19 April 2022
Meeting agenda: Clinical Data Sharing and Consent (17 Mar 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Clinical Data Sharing
17 March 2022
Working document: Diversity in Datasets — usability, operationalisation, and transparency
Working
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
14 March 2022
Road map: Regulatory & Ethics (2022 to 2023)
Road Map
Regulatory & Ethics Work Stream (REWS)
1 March 2022
Meeting agenda: REWS — Genetic Discrimination (23 Feb 2022)
Agenda
Regulatory & Ethics Work Stream (REWS)
Genetic Discrimination Toolkit
23 February 2022
Road map: Clin/Pheno (2022 to 2023)
Road Map
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
22 February 2022
Working document: Pedigree road map planning (2022 to 2023)
Planning
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Pedigree
16 February 2022
Working document: Passports v1.2 work-order token proposal (January 2022)
Working
Data Use & Researcher Identity (DURI) Work Stream
Passports
17 January 2022
Meeting minutes: Data Security — AAI (2022)
Minutes
Data Security Work Stream
Authorisation and Authentication Infrastructure (AAI)
13 January 2022
Meeting minutes: crypt4gh (2022)
Minutes
Large-Scale Genomics (LSG) Work Stream
Genetic Data Encryption (Crypt4GH)
4 January 2022
REWS AI/ML meeting minutes (8 December 2021)
Minutes
Regulatory & Ethics Work Stream (REWS)
Generative AI for Genomic Data Sharing
8 December 2021
Working document: common dataset for family health history
Working
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Pedigree
8 December 2021
Genetic Discrimination: Implications for Data Sharing Projects (GeDI) (v1.0)
Product Documentation, Toolkit Component
Regulatory & Ethics Work Stream (REWS)
Genetic Discrimination: Implications for Data Sharing Projects (GEDI), Genetic Discrimination Toolkit
2 December 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 October 2021
Pediatric Consent to Genetic Research Clauses (v1.0)
Product Documentation, Toolkit Component
Regulatory & Ethics Work Stream (REWS)
Consent Toolkit
27 October 2021
Road map: Data Use & Researcher Identities (2022)
Road Map
Data Use & Researcher Identity (DURI) Work Stream
25 October 2021
Meeting minutes: REWS — Diversity in Datasets (2021)
Minutes
Regulatory & Ethics Work Stream (REWS)
Diversity in Datasets
21 October 2021
Bias in AI/ML (October Connect 2021)
Minutes
Regulatory & Ethics Work Stream (REWS)
Generative AI for Genomic Data Sharing
14 October 2021
REWS: AI/ML Bias Exploration
Minutes
Regulatory & Ethics Work Stream (REWS)
Generative AI for Genomic Data Sharing
9 September 2021
Working document: Computable Cohort Representation — scope
Working
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Federated Cohort Building
27 July 2021
Meeting minutes: Data Security — AAI (2021)
Minutes
Data Security Work Stream
Authorisation and Authentication Infrastructure (AAI)
23 July 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 July 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 June 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 Work Stream
Minutes
Regulatory & Ethics Work Stream (REWS)
29 April 2021
Meeting agenda: REWS — Genetic Discrimination (8 Apr 2021)
Agenda
Regulatory & Ethics Work Stream (REWS)
Genetic Discrimination Toolkit
8 April 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 March 2021
GA4GH Sequence Annotation definitions and model
Working
Genomic Knowledge Standards (GKS) Work Stream
Sequence Annotation (SA)
6 February 2021
Familial Consent Clauses (v1.0)
Product Documentation, Toolkit Component
Regulatory & Ethics Work Stream (REWS)
Consent Toolkit
20 January 2021
Meeting minutes: Data Use & Researcher Identities (2021 to 2022)
Minutes
Data Use & Researcher Identity (DURI) Work Stream
15 December 2020
Meeting minutes: DURI — Data Use (2021 to 2022)
Minutes
Data Use & Researcher Identity (DURI) Work Stream
Data Use Ontology (DUO)
14 December 2020
Meeting minutes: Passports (2021 to 2022)
Minutes
Data Use & Researcher Identity (DURI) Work Stream
Passports
14 December 2020
Meeting minutes: LSG — htsget (2021 to 2022)
Minutes
Large-Scale Genomics (LSG) Work Stream
htsget
12 December 2020
Meeting minutes: crypt4gh (2021)
Minutes
Large-Scale Genomics (LSG) Work Stream
Genetic Data Encryption (Crypt4GH)
8 December 2020
Meeting minutes: File Formats (2021)
Minutes
Large-Scale Genomics (LSG) Work Stream
CRAM, Genetic Variation Formats (VCF), Browser Extensible Data (BED)
8 December 2020
Meeting minutes: Future of VCF (2021)
Minutes
Large-Scale Genomics (LSG) Work Stream
Genetic Variation Formats (VCF)
8 December 2020
Meeting minutes: refget (2021)
Minutes
Large-Scale Genomics (LSG) Work Stream
refget Sequences
8 December 2020
Meeting minutes: RNASeq (2021)
Minutes
Large-Scale Genomics (LSG) Work Stream
RNAget
8 December 2020
Meeting minutes: Discovery — Data Connect (2021 to 2022)
Minutes
Discovery Work Stream
Data Connect
7 December 2020
Minutes: Consent Workshop, 9th Plenary
Minutes
Regulatory & Ethics Work Stream (REWS)
Consent Toolkit
28 September 2020
Meeting minutes: Cloud (November 2020 to present)
Minutes
Federated Analysis Work Stream (formerly Cloud Work Stream)
22 September 2020
Consent Clauses for Genomic Research (v1.0)
Product Documentation, Toolkit Component
Regulatory & Ethics Work Stream (REWS)
Consent Toolkit
8 July 2020
Ethics Review Recognition Policy (v2.0)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Ethics Review Recognition Policy
8 July 2020
Cloud APIs comic (v4.0)
Other
Federated Analysis Work Stream (formerly Cloud Work Stream)
Workflow Execution Service (WES), Tool Registry Service (TRS), Task Execution Service (TES), Data Repository Service (DRS)
8 June 2020
Meeting minutes: Clin/Pheno — Phenopackets Cancer Task Team
Minutes
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Phenopackets
27 May 2020
Minutes: consent workshop
Minutes
Regulatory & Ethics Work Stream (REWS)
Consent Toolkit
11 March 2020
Minutes: working meeting on consent
Minutes
Regulatory & Ethics Work Stream (REWS)
Consent Toolkit
31 January 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 September 2019
Consent Policy (v2.0)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Consent Policy
2 September 2019
Meeting recordings: Clin/Pheno
Recording
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
29 August 2019
Meeting minutes: Genomic Knowledge Standards
Minutes
Genomic Knowledge Standards (GKS) Work Stream
7 August 2019
Data Privacy and Security Policy (v2.0)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Data Privacy and Security Policy
1 August 2019
Model consent clauses for rare disease research (v1.0)
Product Documentation, Toolkit Component
Regulatory & Ethics Work Stream (REWS)
Consent Toolkit
1 August 2019
Working document: Pedigree data — use case/requirements
Working
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Pedigree
8 July 2019
Working document: Pedigree questionnaire results
Presentation
Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream
Pedigree
4 July 2019
CRAM: the genomics compression standard
Other
Large-Scale Genomics (LSG) Work Stream, Genomic Knowledge Standards (GKS) Work Stream
CRAM
26 April 2019
Meeting minutes: Discovery (2019 to 2020)
Minutes
Discovery Work Stream
Beacon, Data Connect, Service Info, Service Registry
25 January 2019
Meeting minutes: Discovery Beacon API (2022 to 2023)
Minutes
Discovery Work Stream
Beacon
22 January 2019
Archived: Automatable Discovery and Access Matrix (ADA-M) guidance document
Product Documentation
Regulatory & Ethics Work Stream (REWS)
7 January 2019
Archived: privacy-preserving record linkage: ethico-legal considerations
Product Documentation
Regulatory & Ethics Work Stream (REWS)
20 March 2018
Meeting minutes: Discovery (2017 to 2018)
Minutes
Discovery Work Stream
Data Connect, Beacon, Service Registry, Service Info
25 September 2017
GA4GH Ethics Review Recognition Policy (v1.0)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
Ethics Review Recognition Policy
13 February 2017
Archived: Automatable Discovery and Access Matrix (ADA-M) spreadsheet
Product Documentation
Regulatory & Ethics Work Stream (REWS)
1 September 2016
Archived: Data Sharing Lexicon
Product Documentation
Regulatory & Ethics Work Stream (REWS)
15 March 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 February 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 February 2016
Archived: Accountability Policy (v1.0)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
1 February 2016
Archived: Data Use Categories and Requirements (Consent Codes)
Product Documentation
Regulatory & Ethics Work Stream (REWS)
21 January 2016
Archived: Mac software link for ADA-M (Automatable Discovery and Access Matrix)
Other
Regulatory & Ethics Work Stream (REWS)
1 January 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 March 2015