How we build genomic sovereignty in the Middle East and North Africa

Every person's genome, the roughly three billion letters of DNA inherited from their parents, carries small variations that influence how likely they are to develop certain diseases and how their body responds to medicines.

Genomic medicine puts this information to work in clinical care. By reading or "sequencing" a patient's DNA and comparing it with the genomes of large reference populations, doctors can diagnose rare inherited conditions that might otherwise take years to identify, estimate a person's risk of common diseases before symptoms appear, and choose the medicines and doses most likely to work for them.

However, the approach is only as good as the reference data behind it, which requires adequate study among people of similar ancestry.

Genomic medicine is entering its most productive decade yet. More than 38 countries now run national genomics initiatives that have together enrolled over 13 million participants. Within this global dataset, populations from the Middle East and North Africa remain severely underrepresented.

People from the region make up roughly 5% of humanity, yet they account for only 1 in 600 individuals in genome-wide association studies. In addition, the region has a high youth unemployment rate, including among many science graduates.

However, with the right investment and coordination, these young researchers could help close the region's genomic data gap themselves.

Recessive inherited disorders are more common among Arabs and many affected families spend years searching for a diagnosis that genomic data drawn from their own population could deliver far sooner.

The same data underpins carrier and premarital screening, which several Gulf states already run to reduce the number of children born with inherited blood disorders such as sickle cell disease and thalassaemia.

Genetic risk tools calibrated on Arab populations could identify people at high risk of type 2 diabetes, heart disease (the region's leading cause of death) or hereditary breast cancer years before symptoms appear, when prevention is cheapest and most effective.

And pharmacogenomics, which matches the choice and dose of a medicine to a patient's genes, could make widely prescribed drugs, such as the blood thinners warfarin and clopidogrel, safer and more effective, because the gene variants that affect how people process them vary in frequency between populations.

What makes the data gap striking is that it isn't a talent problem. Women account for up to 57% of science, technology, engineering and mathematics (STEM) graduates in Arab countries, versus 35% of US undergraduate STEM degrees. Six of the world’s top 10 countries for women studying information, communications and technology are in the Arab world, where 70% of the population – 348 million people – are online.

Three shifts make this moment different.

From $3 billion and a 13-year timeline, a whole genome can now be sequenced in a day or two for a few hundred dollars at scale, making it much more accessible. This is evident in the proliferation of national genome programmes across the region e.g. Qatar’s first phase of sequencing catalogued over 88 million variants, 24 million of which had never been reported in international databases.

However, these scattered datasets can’t be maximized without shared infrastructure or cross-border analytical capacity.

AI is lowering some of the barriers to sophisticated computational analysis. Researchers can increasingly access powerful analytical tools through cloud infrastructure and distributed collaborations, rather than building every capability locally.

The cost of being excluded from the data means Arab patients will ultimately be excluded from the health tools genomic medicine would produce.

The barrier has never really been talent or ambition; it has been coordination.

A graduate student in Amman with strong computational skills and a clinician in Cairo sitting on an underused dataset have almost no reliable way to find each other, let alone build a multi-year research programme together.

Research communities across the region's 22 states remain fragmented by border and institution and existing regional science centres tend to focus on clinical or basic science, leaving applied, cross-disciplinary bioinformatics without an institutional home.

Bureaucracy holds up how fast networks operate when they are built around institutions. Networks built around self-driven individual scientists tend to move faster and filter out low-commitment participation by design, because members extract what they put in.

Closing the coordination gap requires a way for scientists across borders to find one another, share data and computing under agreed rules, and sustain projects over several years. The Network of Bioinformatics, Technology & AI (NBTA) is an early attempt to achieve this.

NBTA is decentralized and organized around five pillars:

That last pillar matters as much as the technical ones: data and AI governance built by the populations they concern strengthens representation and equity, and value-based frameworks that reflect a region's own cultures, philosophies and faiths tend to earn more trust.

The ethical dimension could extend beyond the region itself. Arab countries are home to large Muslim populations, and experience developed in the region around questions such as consent, family-based genetic information, reproductive screening and responsible use of genomic data could contribute to wider conversations about responsible innovation in Muslim-majority societies.

Members join as individuals or institutions and projects form either organically among researchers or through formal board backing. Because a volunteer network still needs computing infrastructure, the Amman-based genomics company Pan.bio supports NBTA so that researchers need not build their own computing clusters. NBTA’s creation also coincides with the Human Genome Project 2, which attempts to sequence 1% of the world population in an equitable fashion.

Water scarcity, food security and disease burden in the Middle East and North Africa often differ from the problems that shaped biobanks (large collections of biological samples and health data) built in Europe, North America or East Asia, which means local knowledge is a scientific necessity, not a nice-to-have.

Closing this gap involves existing resources: internet access, technically trained young people and several active national genome programmes generating data that a shared network could put to far greater use. The connective tissue between these resources is missing.

Networks such as NBTA are one solution but closing the gap at scale will take governments willing to open national datasets to regional research under shared rules, and funders and employers willing to invest in the young scientists who can analyse them.

Ultimately, however, the overarching question is about who gets to shape the science, standards and governance that emerge from the region. If Arab populations are to benefit from genomic medicine, researchers from the region need to be participants in building these systems.

Rana Dajani is the founder NBTA (Network of Bioinformatics, Technology and AI).