A World of Difference - The Dangers of Incomplete Genom Research

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Current genetic research is dangerously incomplete or worse, mistaken. African, Asian or Hispanic populations are largely excluded from research for disease detection, prevention and treatment.

  • €20,203 Budget in Euros
  • 2020 Final release date
  • 6 Round winner
  • 2 Locations

A World of Difference - The Dangers of Incomplete Genom Research

Current genetic research is dangerously incomplete or worse, mistaken. African, Asian or Hispanic populations are largely excluded from research for disease detection, prevention and treatment. The new push to create more diverse biobanks in Africa and Asia is overdue.

Current genetic research is dangerously incomplete or worse, mistaken. 78 percent of individuals included in genome studies are white Europeans. African, Asian or Hispanic populations are largely excluded from research for disease detection, prevention and treatment. Yet, gene mutations and variations in different populations lead to different reactions to treatment of for instance asthma, blood pressure or heart disease. The new push to create more diverse biobanks in Africa and Asia is overdue. AND it creates huge ethical challenges.

African, Hispanic and Asian populations are grossly neglected in genomic research which is today's driving force behind understanding the cause of diseases and new drug development. The reason is simple: Samples used in genomic research predominantly derive from white European patients. This disregards the scientific fact that genomic variations do occur in different populations. It is a dangerously undemocratic approach to improving world health. This project explains how genomic research scientists work; how they look for genetic variations associated with certain diseases in samples of urine, blood and saliva stored in so-called biobanks. Just 10% of individuals included in genome studies are Asian, 2% African and 1% Hispanic. 78% are European. The project shows how NGOs and private enterprises have started to set up more versatile biobanks on the African continent and in Asia. It accompanies and films with Global Gene Corp, which started in India and is now expanding to Namibia. Also included will be the programme Human Hereditary and Health in Africa (H3Africa). It supports local scientist all over the continent.

Moreover, the project discuss the benefits of more versatile research along concrete examples. Patients of African descent for instance, do not respond as well as Europeans to the common asthma drug Albuterol. A recent study linked the lower drug response of Albuterol to the gene variants. Without research material from different populations it would not have been possible to verify the finding. Another example: The dosing of the most commonly prescribed blood thinner, Warfarin, has been adjusted based on the testing of three genes – needless to say the test were only performed on Europeans. For patients of African descent, the dose might be too high or too low, both having potentially grave consequences.

The “one size fits all approach” to global genome research and - on a larger scale- to global health is dangerous and probably already causes deaths. There is hope that more diverse biobanks might even help address neglected diseases like Sickle Cell Anemia. The widespread hereditary disease predominantly occurs in young, black children of poor African nations. There is no cure for the painful attacks which typically begin around the age of 6 months and never stop. The project introduces children affected by Sickle Cell Anemia and speak to scientists regarding the need of fair genome research to help affected patients. While organisations creating new biobanks claim to democratize genomics, they also admit to working closely with pharmaceutical companies, insurers and governments. The commercial potential is much criticised by civil rights activists, who push for international legislation to regulate ownership of samples provided to biobanks. Personalized medicine has become a reality. More versatile research will not only increase the ability to assess a person’s risk of disease but also the risk of a specific population. The dangers of misuse and racist exploitation will be addressed in our story as well.

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