Genome sequencing in Saudi Arabia

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Guest blog written by Malak Abedalthagafi

“One size fits all” interventions have limited impacts in modern medicine. Rapid advances in genomic technologies are making genome sequencing more affordable and readily available. We now find ourselves at a tipping point. The cost of sequencing is falling, and it is now quick and efficient enough to inform clinical and even critical care. We are building a holistic ecosystem in which genomics research is no longer the preserve of the laboratory scientist. The biggest gains are being made through collaborations across a range of expertise from clinicians, engineers, social scientists, mathematicians, and data scientists. Combined with world leading research projects to better understand COVID-19 and a nascent, exciting genomics industry. Furthermore, the expectation has grown that genomic-sequencing technologies could be applied in a broad range of clinical situations, leading to personalized diagnoses and personalized drug therapy.

A country-level, government-funded initiatives are an important part of worldwide efforts to harness the potential of genomic data. Our genome initiated in 2013 and led by The King Abdulaziz City for Science and Technology (KACST), a scientific government institution, the Saudi genome program (SGP) looked to sequence 100,000 human genomic samples to develop effective methods for early diagnostics and treatment of heritable diseases. Consanguineous marriages pose a unique health challenge for the country. It is estimated that severe inherited diseases impact about 8% of births, and common genetic diseases like diabetes impact over 1 in 5. The SGP is intended to find the genes responsible for genetic diseases—both severe and common—that impact the Saudi population.

The program now in its 8th year and it’s time to implement it to healthcare system. A coordinated national approach can help accelerate implementation, however, there is a need to tackle some notable challenges like (1) healthcare professionals, patients, and families; (2) genomic data and its impact on individuals and families; (3) researchers, research participants, and the general public; (4) genomics, society, and its values; and (5) industry, governments, and citizens. When I decided to take this course, I didn’t know what to expect giving the very specialized challenge I am handling. But I was ready to take the challenge from broader view.

One of the great things about PDIA, it focuses on solving locally nominated and defined problems in performance (as opposed to transplanting pre-conceived and packaged ‘best practice’ solutions). In my part of the world, we heavily depend on “consultants”. What I like about PDIA is how it focuses on prevailing problems, ensures that problems are locally defined, not externally determined, and puts weight on performance, not compliance. The experimentation nature of it in tight feedback loops facilitated rapid experiential learning. For such a complicated health policy. The different tools of the PDIA helped me to dissect the challenge outside my area of expertise. We actively engaged broad sets of stakeholders to ensure that reforms are viable, legitimate, relevant and supportable (as opposed to a narrow set of external experts promoting the ‘top down’ diffusion of innovation). It tailors a learning experience to the understanding, skills, and interests of each individual. In contrast to this one-size-fits-all approach,  we know there is  absolutely no trained experts to deal with the adaptive problems at hand. I learned as a leader, I will not always be right and the change can be a painful process. It is a gradual process, which calls for persistence and a willingness to bear the pressure that comes along with that.

This is a blog series written by the alumni of the Implementing Public Policy Executive Education Program at the Harvard Kennedy School. Participants successfully completed this 6-month online learning course in December 2021. These are their learning journey stories.

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