REPORT: Exploring the value of a global gene drive project registry
A group of 47 researchers from around the world – Ifakara Health Institute’s Dr. Fredros Okumu is among them – have written a report with findings from a workshop on gene-drive-modified organisms registries.
The workshop was held virtually and attended by 70 multidisciplinary experts from 14 countries from December 8-9, 2020. It aimed to gather perspectives from experts on the question: “In what ways could a gene-drive project registry both contribute to and detract from the fair development, testing, and use of gene-drive-modified organisms (GDOs)?”
There have been suggestions that a global gene drive project registry could be valuable to coordinate research, and collecting data to monitor and evaluate the potential ecological impacts of using gene-drive-modified organisms (GDO). The registry would also enable transparent communication with community stakeholders and the general public.
Three primary conclusions emerged from the workshop discussion. The researchers have highlighted them in their report titled: Exploring the value of a global gene drive project registry, published in the Nature journal on December 15, 2022.
They include; i) many participants agreed a registry could serve a coordinating function for multidisciplinary and multisector work activities; ii) to serve such functions the registry would require different design elements, depending on the target end-user group and intended purpose for that group; and iii) these different information requirements lead to concerns about information sharing via a registry, suggesting potential obstacles to achieving transparency through such a mechanism.
According to the researchers, the conclusions from the workshop meant that any development of a gene-drive project registry needed careful and inclusive deliberation, or otherwise may end up serving the needs of one set of stakeholders more than another.
On the basis of these key outcomes, the researchers recommended reasonable steps to be taken to conduct a more formal needs assessment with members of each perceived end-user group.
“We conclude that any development of a gene-drive project registry requires careful and inclusive deliberation, including with potential end-users, to ensure that registry design is optimal,” they wrote in the report.
Several concerns were also raised during the workshop including the timing of information release, misrepresentation and misinterpretation of data or projects, and authority and legitimacy of the registry.
However, despite these concerns, many experts also identified a gene-drive registry as an important tool for both democratizing access to information and facilitating transparency around the research and development involving gene drives.
A total of 70 experts in gene drive design, conservation and population modeling, social science, stakeholder engagement, governance and regulation, international policy, and vector control partcipated in the workhop. They represented 45 organizations, spanning national and local governmental agencies, international organizations, nonprofit organizations, universities, and district offices overseeing local vector control.
More about Registries
Registries are frequently described as facilitating transparency by making information about experimental biotechnologies or medical treatments publicly accessible to stakeholders. The Genetic Testing Registry was formed in response to calls for enhanced transparency and rigorous review of laboratory-developed genetic tests.
Several clinical data registries have been created to promote data disclosure and sharing, and several registries have been established to document information on genetically modified organisms (GMOs). More recently, some scholars have called for a consumer-targeted registry for gene-edited crops to earn greater public trust and transparency and facilitate community-led governance.