- Genomics and Gene Editing 2026
- Chapter 6
Readings from the other desks
The genomics baseline is read through each steward’s lens, then once as a whole. Each lens is a projection of reviewed findings, not a separate argument. The other desks’ own editions of this subject are listed first, as cross-references, not copies.
Contents
- ·Edition home
- ·Executive summary
- 1Genomics is data infrastructure and a therapeutic frontier
- 2Key findings
- 3Systems and sectors at baseline
- 4Risks and capability
- 5Individualised editing outpaces delivery systems
- 6Readings from the other desks
- 6.1 The other desks’ editions of this subject
- 6.2 Three lenses
- 6.3 Standards, Academy and steward contributions
- 6.4 GCRI reading: the model card
- 6.5 Global Risks Forum reading: editorial essays
- 6.6 Global Risks Alliance reading: 2027 genomics readiness pack
- 6.7 Nexus Standards reading: standards and regulatory watch
- 6.8 Risk Academy reading: literature and evidence review, science and assessments
- 7The 2027 agenda
- 8Systems in depth
- AMethodology
- BData appendix
- CReferences and record
- ·Complete edition, for print
6.1The other desks’ editions of this subject
Federation: each desk writes its own edition for the subjects in its remit. Until a desk releases, its edition shows its frame and the reading this edition printed for it.
| Desk | Edition | State | Identifier |
|---|---|---|---|
| GCRI Systems Evidence | No edition of this subject at this desk in the 2026 Baseline cycle | Not in this cycle | |
| GRF Public Deliberation | Outside this desk’s remit | Not in remit | |
| GRA Capital Readiness | Outside this desk’s remit | Not in remit | |
| Standards Progress | No edition of this subject at this desk in the 2026 Baseline cycle | Not in this cycle | |
| Academy Capability | No edition of this subject at this desk in the 2026 Baseline cycle | Not in this cycle | |
| Index Measurement | Outside this desk’s remit | Not in remit |
6.2Three lenses
One edition, read by each steward. The lens of this site comes first.
GCRI · KEY T
Technical Truth
The evidence supports reading genomics as data infrastructure and as a therapeutic technology. Results are strong for one therapy family and for reference data, and the physical, cost and supply layers are thinly measured. Evidence is strongest for single peer-reviewed results, and weakest for energy, cost and treatment counts.
HLT-001 · DAT-006 · GOV-011 · SYS-012
GRF · KEY M
Public Meaning
For most people the genomics story arrives as a cure headline, a data-privacy scare or a price. The baseline asks that public debate separate peer-reviewed results from company claims, and keep consent over genetic data in view.
HLT-001 · HLT-004 · DAT-007
GRA · KEY F
Capital Meaning
Readiness implications only. Revenue is small, access depends on cost and manufacturing capacity, and one-time prices raise payment questions67. These show where finance-readiness evidence will matter. Nothing here is advice, a rating or an approval.
FIN-005 · HLT-002
NEXUS
Synthesis
Genomics is well described by single results and thinly measured as a system. The 2027 programme should count treatments, publish a comparable footprint and test the delivery pathway before more bespoke therapies reach patients.
SYS-012 · Q-01 · Q-02
6.3Standards, Academy and steward contributions
How the Nexus Standards drafts, the Risk Academy and the three stewards feed each quarterly edition for genomics. The standards are a preparatory working draft (2026) and are cited as drafts, never as adopted standards.
| Quarter | Edition | Question | Boundary |
|---|---|---|---|
| Q1 | State and Agenda | What matters this year, and what is the starting position? | observed baseline stays distinct from planned work |
| Q2 | Evidence and Build | What new evidence and capability exist? | a configured capability is not a validated result |
| Q3 | Stress Test and Readiness | What do scenarios and tests show? | simulated loss or performance is not observed impact |
| Q4 | Annual Synthesis and Renewal | What changed in the year, and what renews? | release follows review, not event publicity deadlines |
| Steward or body | Role | Contribution route |
|---|---|---|
| The Global Centre for Risk and Innovation (GCRI Canada) | Lead Institution and Consortium Secretariat; publisher of record; technical truth (key T) | science and practice communities · GCRI gateway |
| The Global Risks Forum (GRF) | leadership, dialogue and the Universe programme; public meaning (key M) | policy, Universe and national adoption · GRF gateway |
| The Global Risks Alliance (GRA) | finance, insurance and development readiness; capital meaning (key F) | finance and insurance · GRA gateway |
| Nexus Standards | preparatory drafts on vocabulary, hazards, indicators and methods | Standards site · working groups HAZ, IND, MTH, FIN, AI |
| Risk Academy | learning pathways tied to the agenda questions | Academy gateway · learning by review |
| Nexus Standards and Academy | technology chapter inputs: GCRI evidence, NXS standards, RA capability | technology editorial board |
Standards drafts used in this edition
- Risk vocabulary NRS-C1 (424 terms) for terms in the glossary
- Hazard atlas NHS-1 1.1.0 (905 hazards in 120 families) for risk objects
- Seven risk classes: global, catastrophic, existential, emerging, planetary, exponential, frontier-tech
Standards calendar to watch
- Founding calls from 20 October 2026; working groups meet from 5 November 2026
- Inaugural Global Standards Council session, 12 January 2027
- Quarterly reviews in March, June, September and December, aligned with each edition
6.4GCRI reading: the model card
GCRI’s reading of this edition is its model card: what the national model is, what it computes and where it stops. It is printed in full in Annex A, with the methods it belongs to. Annex A, methodology
6.5Global Risks Forum reading: editorial essays
Four signed essays by the Reports editorial team set out the positions this edition takes. They are interpretation, labelled as such; the evidence they draw on is in the findings register.
Genomics is a data and hardware build-out and a therapeutic frontier. The first is large and measurable; the second is real for one product family and early for the rest. Keeping them apart avoids both hype and complacency.
EDITORIAL ESSAY · 01
Two stories, one technology
A peer-reviewed phase 3 report, a company revenue line and a vendor price page carry different weight. This edition labels each and asks for a common basis before costs are compared.
EDITORIAL ESSAY · 02
Separate results, claims and prices
Compute, cold chains and instruments are rarely counted. A published footprint would show whether scale is limited by energy, supply or money.
EDITORIAL ESSAY · 03
The footprint is the blind spot
Therapies exist for a few patients. Whether they reach people in low-income settings depends on cost, manufacturing and clinics, which analyses are only starting to model.
EDITORIAL ESSAY · 04
Access is the open question
6.6Global Risks Alliance reading: 2027 genomics readiness pack
The registers that open the 2027 global cycle. At baseline each is initialised from this edition.
| Item | Register | State at baseline | First 2027 entry |
|---|---|---|---|
| E1 | Genomics risk state delta | baseline set by this edition | changes against the baseline |
| E2 | WEFH+B state delta | five global system readings set | indicator updates and freshness |
| E3 | Agenda and Portfolio movement | eight agenda items · 6 proposed objects | admission decisions |
| E4 | Federation delivery register | national chapters in preparation | national chapters |
| E5 | Consortium capability register | national consortia forming | first contributions |
| E6 | Leadership questions and challenges | none yet | first challenge log |
| E7 | Foundry technical state | national environments prepared | first federation cut |
| E8 | Publication candidates | twelve findings carried forward | PUBLISH · HOLD dispositions |
| E9 | Universe readiness | one candidate mission | admission and role spine |
| E10 | Correction register | none | first federation-wide cycle |
Publication dispositions
- Publish
- Hold
- Needs evidence
- Restricted
- Superseded
6.7Nexus Standards reading: standards and regulatory watch
Instruments and published guidance that shape the systems in this edition, by status on the retrieval date. The edition assesses no one’s compliance.
- IN FORCE
- PUBLISHED
- DRAFT
- PUBLISHED · VOLUNTARY
| Instrument | Body | Scope | Status | Relevance |
|---|---|---|---|---|
| FDA approval of Casgevy and Lyfgenia1 | FDA | US | PUBLISHED 2023 | approval |
| Plausible mechanism pathway537 | FDA | US | DRAFT 2026 | bespoke therapies |
| Human genome editing framework27 | WHO | global | PUBLISHED · VOLUNTARY | governance |
| Third Summit statement28 | organising committee | global | PUBLISHED 2023 | heritable editing |
| Genetic Technology (Precision Breeding) Act 202329 | UK Parliament | England | IN FORCE | plant editing |
| Regulation (EU) 2026/138836 | EU Parliament and Council | EU | PUBLISHED 2026 | plant editing |
| BIOSECURE provisions in the FY2026 NDAA30 | US Congress | US | IN FORCE | procurement |
| Oviedo Convention41 | Council of Europe | Europe | IN FORCE | genome interventions |
| Genetic Information Nondiscrimination Act44 | US Congress | US | IN FORCE | data and employment |
| Heritable editing moratorium call42 | scientists | global | PUBLISHED 2019 | moratorium |
Changed since 2024
6.8Risk Academy reading: literature and evidence review, science and assessments
The review behind this edition covers genomics assessments, peer-reviewed science and the institutional reports that bind its findings. Systematic reviews for each agenda item begin in 2027.
Review protocol
- Question
- What does the published evidence establish about genomics and gene editing as infrastructure and its couplings?
- Sources searched
- peer-reviewed journals and preprints; regulators and international bodies; statutes and statements; market, vendor and trade-press reports
- Window
- releases available at evidence close, 30 September 2026
- Selection
- sources that bind or contextualise a finding in this edition
- Next step
- systematic reviews for agenda items 01 to 05 in 2027
| Reference | Type | Year | Role | Used for |
|---|---|---|---|---|
| Frangoul et al.2 | journal article | 2024 | supports | sickle cell therapy |
| Locatelli et al.3 | journal article | 2024 | supports | thalassaemia therapy |
| Musunuru et al.4 | journal article | 2025 | supports | patient-specific editing |
| Lek et al.10 | journal article | 2023 | context | safety event |
| Nurk et al.11 | journal article | 2022 | supports | complete genome |
| Liao et al.12 | journal article | 2023 | supports | pangenome |
| Jinek et al.24 | journal article | 2012 | framework | programmable Cas9 |
| Komor et al.25 | journal article | 2016 | framework | base editing |
| Reference | Issuer | Year | Role | Used for |
|---|---|---|---|---|
| Anzalone et al.26 | journal article | 2019 | framework | prime editing |
| UK Biobank consortium16 | journal article | 2025 | supports | whole genomes |
| All of Us investigators17 | journal article | 2024 | supports | diverse cohort |
| Fatumo et al.18 | journal article | 2022 | context | diversity roadmap |
| Sirugo, Williams and Tishkoff19 | journal article | 2019 | context | missing diversity |
| Stephens et al.20 | journal article | 2015 | context | data growth |
| IHGSC43 | journal article | 2001 | framework | first draft sequence |
| Grealey et al.21 | journal article | 2022 | supports | compute footprint |
| Reference | Issuer | Year | Role | Used for |
|---|---|---|---|---|
| FDA approval notice1 | FDA | 2023 | supports | approval |
| WHO framework27 | WHO | 2021 | supports | governance |
| Third Summit statement28 | organising committee | 2023 | supports | heritable editing |
| Precision Breeding Act29 | UK Parliament | 2023 | supports | plant editing |
| Oviedo Convention41 | Council of Europe | 1997 | context | genome interventions |
| Reference | Issuer | Year | Role | Used for |
|---|---|---|---|---|
| Vertex first quarter report6 | Vertex | 2026 | context | company revenue |
| Cost-effectiveness analysis7 | Blood | 2026 | supports | cost and capacity |
| Illumina product page14 | Illumina | 2026 | context | vendor claim |
| Ultima product page15 | Ultima | 2026 | context | vendor claim |
| Employment projection33 | BLS | 2025 | supports | workforce |
| Generation Study34 | Genomics England | 2026 | context | newborn sequencing |
| Evo 2 preprint23 | bioRxiv | 2025 | context | genome model |
Where the evidence agrees
Notes
Numbers are the edition’s reference numbers, so a note reads the same in every chapter. The full list, with every source and its licence, is in Annex C. Annex C, references
- 6Vertex Pharmaceuticals (ed.), Vertex Reports First Quarter 2026 Financial Results (company press release read through a wire page; Casgevy revenue USD 42.9 million against USD 14.2 million; pediatric submission completed; company statement, weak evidence). Vertex, Boston. Observation year 2026. Accessed 2026-11-03.back
- 7Chetlapalli, K. et al., Haploidentical transplant, gene therapy, and standard care in sickle cell disease: a cost-effectiveness analysis, Blood 2026 (abstract read through the Europe PMC record; gene therapy access limited by cost and manufacturing capacity). American Society of Hematology, Washington. Observation year 2026. Accessed 2026-11-03.back
- 1US Food and Drug Administration (ed.), FDA approves first gene therapies to treat patients with sickle cell disease (press announcement, 8 December 2023; Casgevy uses CRISPR/Cas9, Lyfgenia a lentiviral vector; patients 12 years and older). FDA, Silver Spring. Observation year 2023. Accessed 2026-11-03.back
- 5Clinical Trials Arena (ed.), FDA unveils new pathway to usher bespoke therapies to market (trade press, 13 November 2025; describes the plausible mechanism pathway announced in a journal article by the FDA Commissioner and the CBER Director; secondary report, weak evidence). Clinical Trials Arena, London. Observation year 2025. Accessed 2026-11-03.back
- 37UNVERIFIED, not opened: US Food and Drug Administration (ed.), draft guidance on the plausible mechanism framework for individualised therapies, February 2026, taken from search-result summaries. FDA, Silver Spring. Observation year 2026. Accessed 2026-11-03.back
- 27World Health Organization (ed.), Human genome editing: a framework for governance (technical document, 12 July 2021; companion recommendations published separately and not read). WHO, Geneva. Observation year 2021. Accessed 2026-11-03.back
- 28Royal Society (ed.), Statement from the Organising Committee of the Third International Summit on Human Genome Editing (8 March 2023; convened by the Royal Society, the Academy of Medical Sciences, the US National Academies and The World Academy of Sciences). Royal Society, London. Observation year 2023. Accessed 2026-11-03.back
- 29UK Parliament (ed.), Genetic Technology (Precision Breeding) Act 2023, 2023 c. 6 (contents page read; section texts not read). UK Parliament, London. Observation year 2023. Accessed 2026-11-03.back
- 36UNVERIFIED, not opened: European Parliament and Council, Regulation (EU) 2026/1388 on plants obtained by certain new genomic techniques (adopted 17 June 2026, published 26 June 2026, applies from 17 July 2028), taken from search-result summaries that differ on some dates. Official Journal of the European Union, Luxembourg. Observation year 2026. Accessed 2026-11-03.back
- 30Latham and Watkins (ed.), BIOSECURE Act becomes law, limiting grants with biotechnology companies of concern (law-firm summary; enacted 18 December 2025 in the FY2026 NDAA; OMB list due by 18 December 2026; secondary source of a statute). Latham and Watkins, Los Angeles. Observation year 2025. Accessed 2026-11-03.back
- 41UNVERIFIED, not opened: Council of Europe (ed.), Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine (Oviedo Convention), 1997, cited from memory; the page returned an access error. Council of Europe, Strasbourg. Observation year 1997. Accessed 2026-11-03.back
- 44UNVERIFIED, not opened: Genetic Information Nondiscrimination Act of 2008, Public Law 110-233, United States Congress, cited from memory. Observation year 2008. Accessed 2026-11-03.back
- 42UNVERIFIED, not opened: Lander, E.S. et al., Adopt a moratorium on heritable genome editing, Nature 567, 165 to 168, 2019, cited from memory. Observation year 2019. Accessed 2026-11-03.back
- 2Frangoul, H. et al., Exagamglogene Autotemcel for Severe Sickle Cell Disease, New England Journal of Medicine 2024 (abstract read through the Europe PMC record; 44 treated, 30 evaluable, 29 free of crises for 12 months or more). Massachusetts Medical Society, Waltham. Observation year 2024. Accessed 2026-11-03.back
- 3Locatelli, F. et al., Exagamglogene Autotemcel for Transfusion-Dependent beta-Thalassemia, New England Journal of Medicine 2024 (abstract read through the Europe PMC record; 52 treated, 35 evaluable, 32 transfusion independent). Massachusetts Medical Society, Waltham. Observation year 2024. Accessed 2026-11-03.back
- 4Musunuru, K. et al., Patient-Specific In Vivo Gene Editing to Treat a Rare Genetic Disease, New England Journal of Medicine 2025 (abstract read through the Europe PMC record; one infant, two infusions at about 7 and 8 months of age). Massachusetts Medical Society, Waltham. Observation year 2025. Accessed 2026-11-03.back
- 10Lek, A. et al., Death after High-Dose rAAV9 Gene Therapy in a Patient with Duchenne Muscular Dystrophy, New England Journal of Medicine 2023 (abstract read through the Europe PMC record). Massachusetts Medical Society, Waltham. Observation year 2023. Accessed 2026-11-03.back
- 11Nurk, S. et al., The complete sequence of a human genome, Science 2022 (abstract read through the Europe PMC record; 3.055 billion base pairs; nearly 200 million base pairs of new sequence). American Association for the Advancement of Science, Washington. Observation year 2022. Accessed 2026-11-03.back
- 12Liao, W.-W. et al. (Human Pangenome Reference Consortium), A draft human pangenome reference, Nature 2023 (abstract read through the Europe PMC record; 47 phased diploid assemblies; 119 million base pairs added). Springer Nature, London. Observation year 2023. Accessed 2026-11-03.back
- 24Jinek, M. et al., A programmable dual-RNA-guided DNA endonuclease in adaptive bacterial immunity, Science 2012 (abstract read through the Europe PMC record). American Association for the Advancement of Science, Washington. Observation year 2012. Accessed 2026-11-03.back
- 25Komor, A.C. et al., Programmable editing of a target base in genomic DNA without double-stranded DNA cleavage, Nature 2016 (abstract read through the Europe PMC record). Springer Nature, London. Observation year 2016. Accessed 2026-11-03.back
- 26Anzalone, A.V. et al., Search-and-replace genome editing without double-strand breaks or donor DNA, Nature 2019 (abstract read through the Europe PMC record). Springer Nature, London. Observation year 2019. Accessed 2026-11-03.back
- 16UK Biobank Whole-Genome Sequencing Consortium, Whole-genome sequencing of 490,640 UK Biobank participants, Nature 2025 (abstract read through the Europe PMC record). Springer Nature, London. Observation year 2025. Accessed 2026-11-03.back
- 17All of Us Research Program Genomics Investigators, Genomic data in the All of Us Research Program, Nature 2024 (abstract read through the Europe PMC record; 245,388 genomes; 77% from communities under-represented in research). Springer Nature, London. Observation year 2024. Accessed 2026-11-03.back
- 18Fatumo, S. et al., A roadmap to increase diversity in genomic studies, Nature Medicine 2022 (abstract read through the Europe PMC record). Springer Nature, London. Observation year 2022. Accessed 2026-11-03.back
- 19Sirugo, G., Williams, S.M. and Tishkoff, S.A., The Missing Diversity in Human Genetic Studies, Cell 2019 (abstract read through the Europe PMC record). Cell Press, Cambridge. Observation year 2019. Accessed 2026-11-03.back
- 20Stephens, Z.D. et al., Big Data: Astronomical or Genomical?, PLOS Biology 2015 (abstract read through the Europe PMC record). Public Library of Science, San Francisco. Observation year 2015. Accessed 2026-11-03.back
- 43UNVERIFIED, not opened: International Human Genome Sequencing Consortium, Initial sequencing and analysis of the human genome, Nature 409, 860 to 921, 2001, cited from memory. Observation year 2001. Accessed 2026-11-03.back
- 21Grealey, J. et al., The Carbon Footprint of Bioinformatics, Molecular Biology and Evolution 2022 (abstract read through the Europe PMC record; a software upgrade cut one tool footprint by 73%). Oxford University Press, Oxford. Observation year 2022. Accessed 2026-11-03.back
- 14Illumina (ed.), NovaSeq X Series product page (vendor claims: 16 to 21 Tb per run for NovaSeq X Plus, more than 128 genomes per run, run time about 14 to 48 hours; vendor evidence, weak). Illumina, San Diego. Observation year 2026. Accessed 2026-11-03.back
- 15Ultima Genomics (ed.), germline genetics product page (vendor claim of a USD 60 genome at list price over 4 wafers on the UG200 series; the browser title reads USD 80; vendor evidence, weak). Ultima Genomics, Newark. Observation year 2026. Accessed 2026-11-03.back
- 33US Bureau of Labor Statistics (ed.), Occupational Outlook Handbook: Genetic Counselors (about 4,200 jobs in 2025; median pay USD 100,040 in May 2025; 10% growth projected 2025 to 2035). BLS, Washington. Observation year 2025. Accessed 2026-11-03.back
- 34Genomics England (ed.), Generation Study: newborn genome sequencing (initiative page; 100,000 babies; more than 200 conditions; recruitment progress not stated). Genomics England, London. Observation year 2026. Accessed 2026-11-03.back
- 23Brixi, G. et al., Genome modelling and design across all domains of life with Evo 2, bioRxiv preprint 2025 (abstract read through the Europe PMC record; trained on 9.3 trillion base pairs; not peer reviewed at the time of reading). Cold Spring Harbor Laboratory, New York. Observation year 2025. Accessed 2026-11-03.back
- 9BioSpace (ed.), Life-threatening liver toxicity triggers FDA freeze on two Intellia gene therapy studies (trade press, 30 October 2025; relays company disclosures; secondary report, weak evidence). BioSpace, Boston. Observation year 2025. Accessed 2026-11-03.back
- 22Lannelongue, L., Grealey, J. and Inouye, M., Green Algorithms: Quantifying the Carbon Footprint of Computation, Advanced Science 2021 (abstract read through the Europe PMC record). Wiley, Weinheim. Observation year 2021. Accessed 2026-11-03.back
