Draft, not yet released. In stewardship review. Not indexed until the first approved release.

Data appendix

The indicator set with its sources, the source registers, the licences of every kind of material and the formats of the edition.

9 min read0 figures8 tables17 notesNR-XTECH-GENOMICS-GLOBAL-2026-BASELINE

Contents
  1. ·Edition home
  2. ·Executive summary
  3. 1Genomics is data infrastructure and a therapeutic frontier
  4. 2Key findings
  5. 3Systems and sectors at baseline
  6. 4Risks and capability
  7. 5Individualised editing outpaces delivery systems
  8. 6Readings from the other desks
  9. 7The 2027 agenda
  10. 8Systems in depth
  11. AMethodology
  12. BData appendix
    1. B.1 The indicator set
    2. B.2 Global source register
    3. B.3 Regional reading, genomics across ten clusters
    4. B.4 Cluster card: ex vivo editing therapy chain
    5. B.5 How countries appear in the genomics edition
    6. B.6 Licences
    7. B.7 Formats and provenance
  13. CReferences and record
  14. ·Complete edition, for print

B.1The indicator set

Table B.1Global baseline indicator set
IndicatorValueUnitYearStateSource
Patients treated with exa-cel, sickle cell study44patients2024Reported2
Evaluable patients, sickle cell study30patients2024Reported2
Free of severe crises for 12 months or more29patients2024Reported2
Median follow-up, sickle cell study19.3months2024Reported2
Patients treated with exa-cel, thalassaemia study52patients2024Reported3
Transfusion independent, evaluable patients32 of 35patients2024Reported3
Base pairs in T2T-CHM133.055billion2022Reported11
New sequence in T2T-CHM13≈200million bp2022Reported11
Phased assemblies in draft pangenome47assemblies2023Reported12
Added sequence in draft pangenome119million bp2023Reported12
UK Biobank whole genomes490,640participants2025Reported16
All of Us genomes released245,388genomes2024Reported17
Casgevy revenue, first quarter 202642.9USD million2026Reported6
Casgevy revenue, first quarter 202514.2USD million2025Reported6
Genetic counsellor jobs≈4,200jobs2025Reported33
Newborn genomes planned in Generation Study100,000babies2026Reported34
Indicators, CSVIndicators, JSON

B.2Global source register

The governed source set behind this edition. Each source keeps its authority, coverage, cadence and role; categories describe origin, not truth.

Domains bound by the register

  • HLT
  • DAT
  • FIN
  • TRD
  • ENE
  • INF
  • GOV
  • FOO
  • BIO
  • AIC
Table B.3Global source register
SourceCategoryCoveragePeriodCadenceRole
Frangoul et al., NEJM2peer-reviewed journalsickle cell2024one-offtherapy
Locatelli et al., NEJM3peer-reviewed journalthalassaemia2024one-offtherapy
FDA approval notice1national regulatorUS2023one-offapproval
Nurk et al., Science11peer-reviewed journalmethod2022one-offreference genome
UK Biobank and All of Us papers1617peer-reviewed journalUK and US2024 to 2025periodiccohorts
Grealey et al.21peer-reviewed journalmethod2022one-offcompute footprint
Vertex first quarter report6companyglobal2026quarterlyrevenue
Illumina and Ultima pages1415vendorglobal2026continuoushardware claims
BIOSECURE and Illumina China summaries3031law firm and trade pressUS and China2025per eventtrade
BLS Occupational Outlook33national statistics officeUS2025annualworkforce

B.3Regional reading, genomics across ten clusters

Regional plates follow with the regional editions. This page gives the regional reading of genomics infrastructure and exposure in table form and ranks no region.

Table B.4Regional reading, genomics across ten clusters
RegionPrincipal hazardsSystems most exposedBaseline evidence
North Americaapprovals; large cohorts; trade and procurement lawtherapies, data, tradeFDA1; All of Us17; BIOSECURE30
South Americaearly programmes; access gapsaccessregional evidence (not bound)
EuropeUK Biobank and newborn sequencing; plant-editing rulesdata, rulesUK Biobank16; Generation Study34; Act29
Eurasiaresearch programmes; export controlsresearch, supplyregional evidence (not bound)
Middle East and North Africatreatment access in several countriesaccessVertex report6
Africacost-effectiveness for sickle cell therapy in Ugandaaccess, costUganda analysis8
South Asianational genome programmesdata, skillsregional evidence (not bound)
East Asiasequencer trade controls; domestic platformssupply, tradeMedTech Dive31
ASEANprogrammes and partnershipsdata, supplyregional evidence (not bound)
Oceania-Pacificresearch programmes; skillsresearch, workforceregional evidence (not bound)

B.4Cluster card: ex vivo editing therapy chain

  • cell therapy
  • cold chain
  • treatment centres
  • single point
Systems in view
cell collection, editing, manufacture, conditioning, infusion
Defining events
approval on 8 December 2023 and a pediatric submission in 202616
Couplings
HLT → FIN payment; INF → HLT manufacturing capacity
Capability evidence
authorised treatment centres reported by the company6
Gaps
patients treated; prices; cold-chain energy
Agenda items
Q-01 · Q-02

A 2026 analysis states that gene therapy access is limited by cost and manufacturing capacity in the United States and globally [7].

ACCESS

Capacity and cost

Vertex reported USD 42.9 million of Casgevy revenue in the first quarter of 2026 and has submitted for children 5 to under 12 [6].

MARKET

Revenue from a small base

A cost-effectiveness analysis compares gene therapy with haploidentical transplantation and standard care [7].

RESPONSE

Alternatives

B.5How countries appear in the genomics edition

Countries enter the genomics edition through the readiness chapters of their own national editions, on one card grammar. They are read against peer distributions and thresholds, never ranked.

Table B.5How countries appear in the genomics edition
Card fieldWhat it showsSource
WEFH+B stateeach core system against peer distribution bandsnational edition
Couplingsthe national dependency matrixnational edition
Risk objectsthe national risk portfolionational edition
Capability rungsthe national capability laddernational edition
Evidence ageoldest and newest source datesnational source register

Editions in the 2026 Baseline programme

26national

countries and unions

10regional

clusters

16global

flagship and sector

14strategic

systems reports

20frontier

technology reports

How to read a country card

  • Each system is shown against the distribution of its peers, with thresholds where they exist
  • Couplings and risk objects come from the country’s own national edition
  • Capability rungs record evidence, not a judgement of institutions
  • Evidence age is printed, so older national data are visible as such
Table B.6National Baseline Editions in the 2026 programme
WaveCountries and unionsState
W0CanadaISSUED
W1United States, United Kingdom, France, Germany, Italy, Japan, European Union, SwitzerlandPLANNED
W2Mexico, Brazil, Argentina, Türkiye, Russian Federation, Saudi Arabia, United Arab Emirates, South Africa, Senegal, Kenya, African Union, India, China, Republic of Korea, Indonesia, Singapore, AustraliaPLANNED

B.6Licences

Table B.7Licences of each kind of material
MaterialLicence
TextCC BY 4.0
Dataon the licence of each source; Nexus tables CC BY 4.0
FiguresNexus figures CC BY 4.0; third-party as credited
Mapsboundary source and licence printed on each plate
MetadataCC0 1.0, as Zenodo publishes it
Third-party data, figures and textThe source’s own licence, credited where it is used; never relicensed
Nexus-authored text, tables and figures: CC BY 4.0 (SPDX CC-BY-4.0). Map plates print their boundary source and licence.

B.7Formats and provenance

Table B.8This edition in every format
FormatKindStateWhat it isIdentifier
Web editionHTMLOn this siteDraft in stewardship review; every value resolves to its source.NR-XTECH-GENOMICS-GLOBAL-2026-BASELINE-v1.0.0
Print editionPDFAt releaseA4 portrait · screen, print and archival PDF, signed with the web edition at release.NR-XTECH-GENOMICS-GLOBAL-2026-BASELINE-v1.0.0
Indicator dataCSV · JSONOn this site16 indicators with unit, year, status and source; the machine-readable copy ships with the evidence bundle at release.NR-XTECH-GENOMICS-GLOBAL-2026-BASELINE data release v1
FiguresSVG · PNGOn this site4 on the web edition: headline figure, figure 1.3, coupling instrument, capability ladder.FIG-XTECH-GENOMICS-GLOBAL-2026-BASELINE-*
SlidesPDFNot recordedNo slide deck is recorded for this edition.
Evidence briefHTML · PDFNot recordedNo evidence brief is recorded for this edition.
Dataset with DOIDataCiteAt releaseConcept and version DOI are minted at deposit; none is recorded yet.

Provenance

Edition pack
The edition’s content pack (JSON), from which the print and web editions are built
Evidence cut
DC-XTECH-GENOMICS-GLOBAL-2026-B0, closed 30 September 2026
Reproducibility
sourced values cited; analytical values reproducible from stated parameters
Self-check
14 of 23 at evidence close; a fail on any item blocks release
Review
five passes scheduled before release (in Annex C)
Publisher of record
The Global Centre for Risk and Innovation (GCRI) for the Nexus Consortium
Corrections
Registry correction pathway; upheld corrections are published as notices with a new version

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

  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  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.back
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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.back
  16. 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
  17. 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.back

Cite this annex

Valadbaygi, S. (Ed.). (2026). Annex B: Data appendix. In Exponential Technology Report 2026: Genomics and Gene Editing (Baseline Edition 2026, Report No. NR-XTECH-GENOMICS-GLOBAL-2026-BASELINE) [Draft under review]. The Global Centre for Risk and Innovation (GCRI).

Every citation form of the whole report, BibTeX and RIS included, is on the edition home. Cite this report

ReportsContribute

Send evidence or a correction on Genomics and Gene Editing.

Reports is the Consortium’s quarterly publication, written by six desks. This page sits with the GCRI Systems Evidence desk. What you know about this subject can become evidence, a case or a correction in the next edition, credited to you and published under CC BY 4.0 where it is your own work. Sent to the wrong desk, it is forwarded, not refused.

GCRI Systems Evidence deskExponential Technology

Never send personal data, sensitive infrastructure detail or anything you have no right to share. A contribution is reviewed before use; sending it confers no authorship or editorial rights, and sponsorship never buys a finding.

CC BY 4.0 Free to read. Text and figures: CC BY 4.0. Data: CC0 1.0. Authors keep copyright. Published by GCRI Canada.

The Global Centre for Risk and Innovation

Science · evidence · measurement

Not for profit

Our articles, maps and twins are free to read and free to republish. Readers and partners keep it that way.

Partner with us

Who funds us

GCRI is a not-for-profit institution. To ask who funds a piece of work, use the funding questions form.

Independence

Editors and the expert reviewers named on each article decide what we publish. Funders and partners do not review or approve articles before publication.

Corrections policy

Licence

Articles: CC BY 4.0. Figures, maps, twins and data: CC BY 4.0. Other uses: ask through the permissions form.

Privacy choices