# Ali’s code: Flipping the Script on Genomic Research in Africa | Dr. Mohamed Zahir | TEDxZanzibar Source: https://www.youtube.com/watch?v=TnqwcRFMX8o Recap page: https://rapidrecap.app/video/TnqwcRFMX8o Generated: 2026-01-21T18:32:44.827+00:00 --- ## Quick Overview The speaker, Dr. Mohamed Zahir, advocates for a shift in genomic research focus towards African populations to address the severe underrepresentation, which currently results in diagnostic and treatment biases for rare genetic diseases affecting millions in Africa, as evidenced by the Human Genome Project data showing only 1.1% of sequenced data coming from Africans by 2022. **Key Points:** - The speaker, Dr. Mohamed Zahir, founded the Tanzania Human Genetics Organization (THGO) in 2019 to address the lack of genomic research representation for African populations. - Data from 2016 to 2022 shows a widening Eurocentric bias in genomic data: European representation increased from 81% to 86%, while African representation dropped from 3% to 1.1%. - Rare diseases affect 1 in 2,000 people, often taking 7-10 years for diagnosis, and 30% of affected patients die before age five. - The Human Genome Project, costing nearly $3 billion, primarily sequenced European DNA, resulting in an instruction manual that is not universally applicable, especially for African populations. - THGO focuses on five pillars: Research, Training/Education, Advocacy/Consultancy, Diagnostics, and Therapeutics to ensure African genetic realities are represented. - The speaker emphasizes the need for advocacy to ensure that African data is included, preventing negative consequences for African patients who respond differently to treatments. ![Screenshot at 12:13: A slide highlighting the rising Eurocentric bias in genomic data from 2016 \(81% European, 3% African\) to 2022 \(86% European, 1.1% African\), underscoring the need for the speaker's advocacy.](https://ss.rapidrecap.app/screens/TnqwcRFMX8o/00-12-13.jpg) **Context:** The presentation is part of TEDxZanzibar and features Dr. Mohamed Zahir, a geneticist, discussing the critical issue of Eurocentric bias in global human genome research, using the personal story of a young patient named Ali Kimara, who suffered from a rare neuromuscular condition, as a catalyst for his advocacy work. ## Detailed Analysis Dr. Mohamed Zahir tells the story of Ali Kimara, a 13-year-old who loved football but suffered from a rare neuromuscular condition that remained a mystery despite consulting international and local doctors. Ali passed away at age five. This tragedy, coupled with the speaker's own background (having completed his PhD in Medical Genetics in the Netherlands), motivated him to return to Tanzania to drive change. He highlights the massive disparity in genomic data, showing that while the Human Genome Project cost nearly $3 billion, 81% of the data in 2016 was European, with African representation dropping from 3% to a mere 1.1% by 2022. This Eurocentric bias means that the 'instruction manual' for human life is incomplete for Africans, leading to diagnostic delays (7-10 years) and poor treatment outcomes for rare diseases affecting 1 in 2,000 people, 30% of whom die before age five. To combat this, Dr. Zahir co-founded the Tanzania Human Genetics Organization (THGO) with five core functions: Research, Training/Education, Advocacy/Consultancy, Diagnostics, and Therapeutics. He stresses that advocacy—speaking to policymakers, healthcare workers, and the public—is crucial to ensure that the next generation of scientists is trained to look beyond existing biases and solve problems affecting African populations. ### Ali Kimara's Story - Ali Kimara, 13, loved football but suffered from a rare neuromuscular condition; he died at age 5 - His mother, Sharifa, sought answers from international and local doctors without success - The speaker returned to Tanzania in 2019 after his PhD to address this gap. ### The Genomic Data Gap - The Human Genome Project, costing $3 billion, resulted in an instruction manual that primarily represented European ancestry (81% in 2016, 86% in 2022) while African representation fell from 3% to 1.1% by 2022. ### The Impact of Rare Diseases - Rare diseases affect 1 in 2000 people, take 7-10 years for diagnosis, and 30% of affected children die before age five. ### The Tanzania Human Genetics Organization (THGO) - Formed to counteract the bias, THGO focuses on Research, Training/Education, Advocacy/Consultancy, Diagnostics, and Therapeutics. ### Call to Action - The speaker urges everyone, especially scientists and policymakers, to take action to include African data in genomics and to educate children about disabilities and rare diseases to break stigma. ![Screenshot at 00:03: TEDx Zanzibar event branding displayed over scenic imagery of Zanzibar.](https://ss.rapidrecap.app/screens/TnqwcRFMX8o/00-00-03.jpg) ![Screenshot at 01:23: A collage showing Ali Kimara during different stages of his life, including using a wheelchair and playing games, alongside his mother.](https://ss.rapidrecap.app/screens/TnqwcRFMX8o/00-01-23.jpg) ![Screenshot at 07:49: A slide detailing the scope of the Human Genome Project: 3.4 billion units of DNA code, 127 volumes, 1,000 pages per volume.](https://ss.rapidrecap.app/screens/TnqwcRFMX8o/00-07-49.jpg) ![Screenshot at 12:13: A chart illustrating the growing Eurocentric bias in genomic data from 2016 to 2022, showing European data rising while African data declines.](https://ss.rapidrecap.app/screens/TnqwcRFMX8o/00-12-13.jpg) ![Screenshot at 17:57: A slide titled "Notable Achievements" detailing THGO's milestones, including genetic counseling for over 50 patients and 11 solved cases.](https://ss.rapidrecap.app/screens/TnqwcRFMX8o/00-17-57.jpg)