References and record
Every source the edition rests on, the publication record, the corrections log and the open record.
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
- 7The 2027 agenda
- 8Systems in depth
- AMethodology
- BData appendix
- CReferences and record
- ·Complete edition, for print
C.144 sources
NR-CIT-1, editor first. A DOI is linked where the source has one; Nexus records carry a UNI once the catalogue allocates it (NS-1).
- 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. Cited in the summary, chapter 1, chapter 2, chapter 3, chapter 4, chapter 6, chapter 8
- 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. Cited in the summary, chapter 1, chapter 2, chapter 3, chapter 4, chapter 6, chapter 7
- 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. Cited in the summary, chapter 1, chapter 2, chapter 3, chapter 6, chapter 7
- 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. Cited in the summary, chapter 1, chapter 2, chapter 5, chapter 6
- 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. Cited in chapter 1, chapter 2, chapter 4, chapter 5, chapter 6, chapter 8
- 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. Cited in the summary, chapter 1, chapter 2, chapter 3, chapter 6, chapter 8
- 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. Cited in chapter 1, chapter 2, chapter 4, chapter 6, chapter 8
- 8Montano-Campos, J.F. et al., Cost-effectiveness of gene therapy for sickle cell disease in Uganda: tailoring high-income evidence to Uganda context, Gene Therapy 2026 (abstract read through the Europe PMC record). Springer Nature, London. Observation year 2026. Accessed 2026-11-03. Cited in chapter 3, chapter 4, chapter 8
- 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. Cited in the summary, chapter 1, chapter 2, chapter 4, chapter 5, chapter 6, chapter 7
- 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. Cited in the summary, chapter 1, chapter 4, chapter 6
- 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. Cited in the summary, chapter 1, chapter 2, chapter 3, chapter 4, chapter 6, chapter 8
- 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. Cited in chapter 1, chapter 2, chapter 3, chapter 4, chapter 6, chapter 8
- 13National Human Genome Research Institute (ed.), The Cost of Sequencing a Human Genome (fact sheet page; method notes read; the cost values sit in graphs and a linked table that were not read; page updated 16 May 2023). NHGRI, Bethesda. Observation year 2023. Accessed 2026-11-03.
- 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. Cited in the summary, chapter 1, chapter 2, chapter 3, chapter 6, chapter 7, chapter 8
- 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. Cited in the summary, chapter 1, chapter 2, chapter 4, chapter 6, chapter 7, chapter 8
- 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. Cited in the summary, chapter 1, chapter 2, chapter 3, chapter 4, chapter 6, chapter 8
- 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. Cited in the summary, chapter 1, chapter 2, chapter 4, chapter 6, chapter 8
- 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. Cited in chapter 1, chapter 2, chapter 6
- 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. Cited in chapter 1, chapter 2, chapter 6
- 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. Cited in chapter 6, chapter 8
- 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. Cited in the summary, chapter 1, chapter 2, chapter 3, chapter 6, chapter 8
- 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. Cited in chapter 1, chapter 2, chapter 6, chapter 8
- 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. Cited in chapter 6, chapter 8
- 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. Cited in chapter 4, chapter 6
- 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. Cited in chapter 6
- 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. Cited in chapter 6
- 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. Cited in the summary, chapter 2, chapter 3, chapter 4, chapter 6, chapter 8
- 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. Cited in the summary, chapter 1, chapter 2, chapter 4, chapter 6, chapter 8
- 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. Cited in chapter 3, chapter 4, chapter 6, chapter 8
- 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. Cited in the summary, chapter 1, chapter 2, chapter 4, chapter 6, chapter 8
- 31MedTech Dive (ed.), China to lift Illumina export ban (trade press, November 2025; listing in February 2025, import ban in March 2025, lift on 10 November 2025, instrument sales in China down 54% in the third quarter; secondary report, weak evidence). Industry Dive, Washington. Observation year 2025. Accessed 2026-11-03. Cited in the summary, chapter 1, chapter 2, chapter 3, chapter 4, chapter 8
- 32MedTech Dive (ed.), Anne Wojcicki bid to buy 23andMe in bankruptcy (trade press, 17 June 2025; USD 305 million bid against a USD 256 million bid; state objections; secondary report, weak evidence). Industry Dive, Washington. Observation year 2025. Accessed 2026-11-03. Cited in chapter 3, chapter 4, chapter 8
- 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. Cited in chapter 4, chapter 6, chapter 8
- 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. Cited in chapter 4, chapter 6, chapter 8
- 35UNVERIFIED, not opened: Vertex Pharmaceuticals (ed.), full-year 2025 results (Casgevy revenue USD 115.8 million in 2025 and USD 10 million in 2024), taken from search-result summaries. Vertex, Boston. Observation year 2025. Accessed 2026-11-03.
- 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. Cited in chapter 3, chapter 4, chapter 6, chapter 8
- 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. Cited in chapter 4, chapter 6
- 38UNVERIFIED, not opened: NPR (ed.), Judge approves sale of 23andMe to a nonprofit led by its founder (30 June 2025), taken from a search-result summary; the page returned a service error. NPR, Washington. Observation year 2025. Accessed 2026-11-03. Cited in chapter 3, chapter 4, chapter 8
- 39UNVERIFIED, not opened: Intellia Therapeutics and trade press on the lifting of the 2025 clinical holds on the MAGNITUDE trials, taken from search-result summaries that differ on dates. Observation year 2026. Accessed 2026-11-03. Cited in chapter 2
- 40UNVERIFIED, not opened: Ultima Genomics (ed.), UG 100 Solaris launch announcement of 24 February 2025 (USD 80 genome at list price), taken from search-result summaries; vendor evidence, weak. Ultima Genomics, Newark. Observation year 2025. Accessed 2026-11-03. Cited in chapter 2
- 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. Cited in chapter 4, chapter 6
- 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. Cited in chapter 4, chapter 6
- 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. Cited in chapter 6
- 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. Cited in chapter 4, chapter 6
C.2Publication record
Publication
- Title
- Exponential Technology Report 2026: Genomics and Gene Editing, Baseline Edition
- Series
- Reports · Exponential Technology Series XT-05
- Edition
- Baseline Edition 2026 · inaugural annual
- Version
- v1.0.0 · draft for stewardship review
- Publication ID
- NR-XTECH-GENOMICS-GLOBAL-2026-BASELINE-v1.0.0
- Evidence close
- 30 September 2026
- Publication date
- October 2026
- DOI
- concept and version DOI at deposit
Publisher
- Publisher of record
- The Global Centre for Risk and Innovation (GCRI), for the Nexus Consortium
- Place
- Toronto
- Editor
- Saeed Valadbaygi, Chief Steward and Managing Editor
- Stewards
- GCRI · technical truth · the Global Risks Forum (GRF) · public meaning · the Global Risks Alliance (GRA) · capital meaning
- Licence
- text CC BY 4.0; data on the terms of each source
- Copyright
- © 2026 GCRI · Nexus Consortium
- Language
- English (en-GB) source edition
- Correspondence
- Registry correction pathway · editorial office
Colophon
- Format
- A4 portrait · screen, print and archival PDF
- Typefaces
- Space Grotesk (display) · Geist (text) · IBM Plex Sans Italic (standfirsts) · IBM Plex Mono (data)
- Design standard
- Reports Foundational Edition, Volume I, Part VII
- Accessibility
- tagged PDF and HTML targets; text alternatives for every figure
- Production
- Reports editorial team, GCRI
Release path for this version
| Step | What happens | When |
|---|---|---|
| Draft | editorial self-check complete at evidence close | October 2026 |
| Steward review | five passes on the exact draft (keys T · M · F · N) | Q4 2026 |
| Approval | publication authority approves the exact digest | before release |
| Deposit | concept and version DOI minted; registry pointer set | at release |
| Succession | the 2027 genomics edition reports changes against this baseline | 2027 |
- Current version
- v1.0.0 draft, stewardship review
- Previous edition
- none, first edition of the series
- Next edition
- NR-XTECH-GENOMICS-GLOBAL-2027-v1.0.0
- Latest version
- resolve the concept DOI or the registry record
- Correction route
- Registry correction pathway
- Notice types
- erratum · addendum · supersession · withdrawal
C.3Corrections log
0correction notices. No edition has been released yet, so none can be corrected; the log below lists each edition’s current version.
| Edition | Version | Date | State | Change | Notice |
|---|---|---|---|---|---|
| XT-05 | NR-XTECH-GENOMICS-GLOBAL-2026-BASELINE-v1.0.0 | October 2026 | Draft | Baseline Edition 2026, inaugural annual edition, | None |
Notice types: erratum, addendum, supersession, withdrawal. A correction is a new version with a published notice; the earlier version stays resolvable, and no edition is ever edited in silence.
C.4Open record
This edition’s open record
- Publication ID
- NR-XTECH-GENOMICS-GLOBAL-2026-BASELINE-v1.0.0
- Desk identifier and series alias
- NR-XTC-XT-05-2026-BL
- Collection
- None
- DOI
- Concept and version DOI at deposit, on Zenodo with DataCite metadata
- Versions
- Each correction is a new version (isNewVersionOf); the concept DOI resolves to the latest
- Bundle
- RO-Crate 1.2 with CITATION.cff, CodeMeta and PROV-O provenance; a signed manifest
- Licence
- CC BY 4.0 (SPDX CC-BY-4.0) for original material; metadata CC0 1.0
Credit and identity
- ORCID
- Your iD in the deposit and the contribution record; DataCite can then add the work to your ORCID record
- ROR
- Your organisation by its ROR identifier, never by a typed name alone
- CRediT
- Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Software, Validation, Visualisation, Writing, review and editing
- Account
- None needed to contribute; never a password
Find and follow
Search the open indexes for Genomics and Gene Editing; software is cited by its SWHID from Software Heritage, and a quantified scenario run is preregistered on OSF before it is run. Annotation is your choice: Hypothesis opens this page in its own viewer.
Mirrors and harvest
The DOI is canonical. At release each signed bundle is also given an IPFS content identifier and a bloxberg anchor as mirrors; both are listed in the record once they exist. Zenodo exposes every record over OAI-PMH, and reviews and endorsements can arrive through COAR Notify where the repository supports it.
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}C.5Where this edition sits among the six pillars
Foundry seals the evidence and Universe tests it; Reports publishes it; Standards takes its corrections and Academy teaches from it.
- F03 Sealed observations and indicator series Foundry Sealed observations and indicator series behind a profile (closeout).
- F04 After-action and scenario findings for Universe After-action and scenario findings for chapters 10 and 13 (after action review).
- F05 National Portfolio movement for chapter Foundry National Portfolio movement for chapter 11 (after action review).
- Applied in editions Standards Nexus Standards: applied in editions.
- XT-05 edition Reports Genomics and Gene Editing 2026, published in every format with its sources, citation and corrections.
- F06 Method and correction findings as change Standards Method and correction findings as change proposals (correction).
- F12 Q4 synthesis informs the next-year Universe Q4 synthesis informs the next-year mandate (renewal).
- Taught in the open Academy Risk Academy: taught in the open.
What Foundry and Universe hand to this edition, and what it hands to Standards, Universe and Academy. From the programme spine; XT-05 is a drafted Baseline Edition, so these handoffs run from its first operational quarter.
| Handoff | Between | What crosses, and when |
|---|---|---|
| F03 | Foundry to Reports | Sealed observations and indicator series behind a profile (closeout). |
| F04 | Universe to Reports | After-action and scenario findings for chapters 10 and 13 (after action review). |
| F05 | Foundry to Reports | National Portfolio movement for chapter 11 (after action review). |
| Ring | Nexus Standards to Reports | Nexus Standards: applied in editions. |
| F06 | Reports to Nexus Standards | Method and correction findings as change proposals (correction). |
| F12 | Reports to Universe | Q4 synthesis informs the next-year mandate (renewal). |
| Ring | Reports to Risk Academy | Risk Academy: taught in the open. |
