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Europe’s Genomic “Ambition” (?): The Transparency Test

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The European Union proclaimed its 1+ Million Genomes initiative in April 2018, with 26 Member States committing to create federated genomic infrastructure. Six years later, we can’t even determine how many genomes Europe has actually sequenced.

🇪🇺 EU 27 Countries: ??? genomes completed – No consolidated reporting after 6 years

Try finding the actual genome count for Europe’s 1+MG initiative. You’ll find:

  • Working groups and frameworks
  • Infrastructure development plans
  • Committee meetings and roadmaps
  • Everything except actual sequencing numbers

The “Genome of Europe” project, launched October 2024, aims for just 100,000 genomes across 27 countries. After six years and massive technical improvements and cost reductions in whole genome sequencing.

I was so surprised by this that I made some phone calls to my Bioinformatics and Genomics network and learnt that while the digital side is moving (I’m sure I’m not biased here when mentioning ELIXIR…), that a small number of individual countries have started moving forward (suspiciously concentrated in the Nordic region – go figure!), but actually completely sequenced human genomes…

Why do I find this grating?

🇬🇧 UK: 490,640 completed (post-Brexit, but shows what’s possible with focus) 🇺🇸 USA: 414,000 genomes completed (All of Us program) – 50% from underrepresented minorities

But maybe the region that impresses me the most is the Gulf Cooperation Council, a region that has 12% of Europe’s population (EU), with a GDP that is 18% of the combined European Union countries:

🇦🇪 UAE: 815,000+ completed genomes (April 2025) – Clear reporting, 8% total population coverage (~80% of native population!), recently launched genomic newborn screening for 815+ treatable conditions based on whole genome sequencing.

🇶🇦 Qatar: 35,000+ completed genomes – Transparent progress since 2015, August 2025: Announced BeginNGS whole genome newborn screening program for 1,000+ disorders

🇸🇦 Saudi Arabia: 61,177 samples tested (targeting 100,000) – Regular progress updates, Comprehensive national newborn screening for hemoglobinopathies and metabolic disorders

(Kuwait, Oman and Bahrain, the remaining members of the GCC are also moving in this direction)

These countries have managed to achieve more than Europe ever claimed to wish to accomplish.

Why This Matters? Proven Clinical Impact!

If you read this far you may wonder why do I care – is this a “mine is bigger than yours” competition? Or, as a European, I’m just acting like a sore loser for not being part of the “big boys competition”?

The reason I care is that the clinical impact of having access to a complete human genome sequence, for the individual, is immense (in my forthcoming book on Precision Diagnostics, I discuss what I learn by sequencing my own genome).

I’m not talking about theoretical benefits, but measurable health outcomes and cost savings happening right now. Just two examples:

The Christ Hospital Health Network embedded pharmacogenomic testing in 30 community clinics, with 58% of pharmacogenomic interactions being actionable, prompting medication adjustments and cost savings

Geisinger’s MyCode enrolled 90,000+ rural Pennsylvanians by 2016, with their genomic screening program identifying numerous patients with familial hypercholesterolemia and other actionable genetic conditions, demonstrating population-scale precision diagnostics effectiveness in cardiovascular risk detection

While European countries move at strikingly different velocities, with Finland’s FinnGen project and Estonia’s biobank making substantial progress, contrasted against countries like my own, Portugal, whose traditional ‘teste do pezinho‘ program, running since 1979, screens for only 25 conditions using early-20th-century biochemical methods and has achieved ZERO population-scale whole genome sequences.

What proves most remarkable is how nations that barely existed a few decades ago, once little more than desert settlements, are now systematically outpacing an entire continent that possesses centuries of accumulated scientific infrastructure, established universities, and theoretical advantages.

Some consequences of investing and actually delivering in the infrastructure and practice of sequencing completed human genomes, while Europe debates data frameworks:

🇦🇪 UAE: Population-wide pharmacogenomic testing, precision oncology, premarital genetic screening

🇶🇦 Qatar: Clinical pilots for warfarin dosing (reducing hospital stays from 7 to 3 days), BRCA screening

🇸🇦 Saudi Arabia: 3,000 novel mutations identified, 1,230 rare disorders characterized, 25 diagnostic gene panels developed

EU Opacity is revealing

The Gulf demonstrates governance by results:

✅ Clear targets publicly announced

✅ Regular progress reporting

✅ Population-scale achievements within 5 years

✅ Immediate clinical applications (pharmacogenomics, premarital screening)

Europe demonstrates governance by process:

❌ Endless coordination mechanisms

❌ No consolidated progress tracking

❌ Six years of planning vs. execution

❌ Can’t answer basic question: “How many genomes have you sequenced?”

In genomics, as in governance, what gets measured gets done. What gets hidden gets delayed. If Europe wants to lead precision medicine, it (we!!!) need to start doing something different. Or accept that we are just a collection of independent states in which each does whatever it wishes, and all the potential for scale disappears.

#Genomics #PrecisionMedicine #Healthcare #Innovation #Europe #MiddleEast #Transparency #GCC

P.S. – Some may point to Europe’s genuine leadership in genomic data frameworks (ELIXIR), ethical guidelines (GDPR), and sustainable healthcare integration as counterarguments. These achievements are real and valuable. However, they perfectly illustrate my point: Europe excels at building the process infrastructure for genomic medicine – the frameworks, ethics committees, data sharing protocols, and sustainability models.

Meanwhile, Gulf countries are using any available infrastructure to actually sequence genomes and treat patients. The question isn’t whether Europe can build better systems (it can), but whether those systems are translating into better outcomes for European patients. Six years in, the Gulf has moved from frameworks to implementation. Europe is still perfecting the frameworks.

Governance by process vs. governance by results – in action.

Sources used:

  • The National. “Personalised medicine a step closer as 800,000 Emiratis contribute to genome programme.” April 17, 2025.
  • Department of Health Abu Dhabi. “DoH launches newborn genetic screening programmes.” 2024. https://www.doh.gov.ae/en/news/doh-launches-newborn-genetic-screening-programmes
  • Think Global Health. “Filling the Middle Eastern Gaps in the Human Genome.” https://www.thinkglobalhealth.org/article/filling-middle-eastern-gaps-human-genome
  • Front Line Genomics. “World of Genomics: The Kingdom of Saudi Arabia.” January 3, 2023.
  • Blood Journal. “Newborn Screening Program (NBS) for Early Detection of Sickle Cell Disease and G6PD: The Saudi Experience.” November 5, 2024.
  • Nature. “Genomic data in the All of Us Research Program.” February 19, 2024.
  • Nature. “Whole-genome sequencing of 490,640 UK Biobank participants.” August 6, 2025.
  • FinnGen. “Access results – Latest release: DF12.” November 4, 2024. https://www.finngen.fi/en/access_results
  • Rady Children’s Institute for Genomic Medicine. “BeginNGS® Newborn Screening by Genome Sequencing Program Launches International Collaboration with Sidra Medicine in Qatar.” August 19, 2025.
  • Pratt VM, Cavallari LH, Del Tredici AL, et al. “Implementing comprehensive pharmacogenomics in a community hospital–associated primary care setting.” Journal of the American Pharmacists Association. 2022;62(6):1715-1726. https://www.invenimus.ch/wp-content/uploads/2024/01/implementing-comprehensive-pharmacogenomics-in-a-community-hospital-associated-primary-care-setting.pdf
  • Carey DJ, Fetterolf SN, Davis FD, et al. “The Geisinger MyCode community health initiative: an electronic health record-linked biobank for precision medicine research.” Genetics in Medicine. 2016;18(9):906-913. PMC4981567

(On AI: I used Perplexity and Claude to source/verify information and to polish the final text – its English is better than mine, even if a bit formulaic)