Genomics and Public Engagement in the Global South: Echoes from the 2018 World Health Summit
Updated: Feb 9, 2019
Blog post by Samuel J Ujewe, PhD
Africa is about to become a testing ground for recent innovations in genomic medicine, yet the voices and perspectives of its countries and local communities are rarely represented in deliberations on global health policy.
The World Health Summit 2018, one of the world’s most prominent strategic forums for global health is being held this week in Berlin, Germany. The inaugural panel discussion on global health security included seven renowned experts, who deliberated on key issues concerning the response to and control of disease outbreaks and pandemics. Although pandemic emergencies discussed in the forum mostly affect people in the Global South, none of the speakers included on the panel was from the region. Paradoxically, experts that represent the voices and perspectives of local communities at the center of global health security efforts were not represented on the WHS Global Health Security Panel. This shortcoming should probably come as no surprise. Instead, the scenario we are currently observing at the Summit is a sad reminder of events surrounding global efforts and important decisions during the West African Ebola Epidemic from 2013 to 2015. While the epidemic was raging across the region taking its toll on local communities, high level conferences and policy deliberations were held in Europe without proper representation from the region.
"... experts that represent the voices and perspectives of local communities at the center of global health security efforts were not represented on the WHS Global Health Security Panel."
With this pattern of events, one begins to question the WHO priorities in global health security: “Are we concerned about the health of populations that are presently endangered, or just those whose future safety we aim to preserve?” This question become especially relevant as new advances in genomic research are currently hailed as life-saving interventions in global health, especially the use of genetically modified organisms for the prevention and elimination of vector-borne diseases such as malaria and dengue.
Genomics has widely been described as the science of understanding, interpreting and harnessing DNA - a code that directs the biological functions of a living organism, influencing how it grows and relates to the environment. In simple terms, genomics refers to the ability to alter the life-course of a living organism, such as mice, mosquitoes and even humans, by altering their genetic structure. The changes are permanent in the organism whose genetic markings have been altered. Recent advances in the field, such as the gene-editing tool CRISPR-Cas 9 and gene drive technology, have made it possible to alter permanently the genome of entire species. These developments are exciting and have been embraced by the scientific community, however there is much concern in the public domain about the deployment of genomic technologies given the uncertainties surrounding their various applications.
“Are we concerned about the health of populations that are presently endangered, or just those whose future safety we aim to preserve?”
Advancements in genomics have been predominantly made in the West (mostly Europe and North America), and genomic research has received both corporate and public attention in these regions. It receives substantial funding from multinational organizations, but also faces a growing public backlash. The latest in the line of innovations in genomics is gene drive technology. Gene drive research use precision genetics to modify and reconstruct the DNA of organisms to mimic the natural genetic element and promotes biased inheritance towards specific desired outcomes. This kind of genetic alteration is passed down the generational line until the original genetic trait is completely replaced by the new one.
It is highly likely that the first release of gene drive modified organisms into the wild will take place in the Global South, as there are ongoing efforts to deploy gene drive modified mosquitoes for malaria prevention and eradication in Sub-Saharan Africa. Yet, in high level public and policy forums, where crucial decisions are made regarding the development and potential use of gene drive organisms, voices and perspectives from the global south are missing, under-represented or suppressed. Similarly, in the public domains of countries in the Global South, especially African countries, open conversations and public engagement about innovation in genomics and genomic medicine have yet to take place. Yet, the expectations of corporations advancing genomics in the global north is that once the laboratory projects are successful, they could simply be shipped for use down south. To many, this seems like history repeating itself, but this time colonial power is disguised as “good will.”
"Yet, in high level public and policy forums, where crucial decisions are made regarding the development and potential use of gene drive organisms, voices and perspectives from the Global South are missing, under-represented or suppressed."
Crucial conversations around genomics and how it could be out to use for the public good would greatly benefit from the inclusion of expert opinion and local perspectives from the Global South. Important decisions around the development and potential implementation of technologies such as gene drives should not be made by Global North actors on behalf of the Global South. Genomic research and use cannot be a simple matter of giving and receiving; rather, active involvement of all stakeholders in all stages of the process must be prioritized.