Cutting corners on consent
On November 29, after two weeks of contentious negotiations at the United Nations Biodiversity Conference in Sharm El Sheikh, Egypt, 196 countries agreed to stringent rules on the use of so-called gene drives. Given the far-reaching consequences of a technology that causes a particular set of genes to propagate throughout a population – fundamentally changing or even eliminating it – such rules are badly needed. But are they enough?
Some countries would have preferred a full moratorium on the release of gene-drive organisms – a view shared by many indigenous peoples, food sovereignty activists, and African civil-society organizations. The UN’s final agreement met them halfway, recognizing the “uncertainties” inherent in the use of gene drives – which opponents call “exterminator drives” – and calling upon governments to exercise great caution in releasing drive-modified organisms for experimental research.
According to the agreement, such experiments should be carried out only when “scientifically sound case-by-case risk assessments have been carried out,” and “risk management measures are in place to avoid or minimize potential adverse effects.” Moreover, organizations seeking to release gene-drive organisms should obtain the “free, prior, and informed consent” of potentially affected communities.
As it stands, none of this seems to be happening. Consider the record of Target Malaria, the world’s largest organization undertaking gene-drive experiments, whose employees were included in the official negotiating teams of at least two African countries to push back against excessive limitations.
Target Malaria is soon scheduled to begin implementing a plan in West and Central Africa to release genetically modified “male sterile” (non-gene-drive) mosquitoes in the villages of Bana and Sourkoudingan in Burkina Faso, as a first step toward eventually releasing drive-modified mosquitoes. The goal is to reduce the population of the species that transmit the parasite that causes malaria.
But it remains far from clear that Target Malaria has acquired anything close to the villages’ “free, prior, and informed consent.” To be sure, Target Malaria has issued videos of local people who support the project and introduced reporters to them. But when I traveled independently of Target Malaria to meet local communities that would be affected, I heard a very different story, which I recount in a short film.
On my two trips to discuss the project with locals in the affected areas of Burkina Faso – first accompanied by two activists, and then by a translator – a clear pattern emerged. Those with political authority in the center of Bana were aware of Target Malaria and surprisingly hostile toward us. Célian Macé, reporting for the French newspaper Libération, encountered similar problems when attempting to access Bana and Sourkoudingan.
On the outskirts of the villages – still well within the range of the mosquito release – people tended to be more comfortable being interviewed. They were also far less knowledgeable about Target Malaria’s project and gene drives in general. And information about both is available to them from only one source: Target Malaria.
Nearby villages also seemed inadequately informed. Gene-drive organisms are intended to spread indefinitely, and mosquitoes, especially females, can surf air currents at relatively high altitudes (40-290 meters), where winds can blow them hundreds of kilometers. This means that consent would have to be secured significantly beyond the release point.
Yet in the village of Nasso, near Bana, authorities told us that despite meeting with Target Malaria, they still had questions and concerns about the potential adverse effects of the mosquito release. Civil-society groups operating in and around the test-site villages have also not been adequately consulted about Target Malaria’s work.
The more interviews I conducted, the clearer it became that local people had not been involved in a genuinely participatory debate on the Target Malaria project, let alone extended their informed consent. On the contrary, several people I interviewed called for the experimental release of genetically modified mosquitoes to be halted until the risks and effects had been adequately investigated, and civil society across Burkina Faso had been fully informed.
Target Malaria’s lack of commitment to consent is reflected in its own rhetoric, which eschews the unequivocal word “consent,” but regularly uses terms like “engagement” and “community acceptance.” This choice may indicate that the organization’s leaders have already decided to proceed with the release.
Reinforcing this conclusion, after the UN convention, Target Malaria attempted to draw a distinction between the requirement of free, prior, and informed consent in the context of medical research on individuals (where it is demanded) and in a public-health context. According to the organization, “it’s not logistically possible to obtain consent from each and every person affected” by the release genetically modified mosquitoes.
But the reason it is difficult to acquire informed consent from all people affected by gene-drive experiments is the same reason that doing so is absolutely critical. This is a highly controversial technology, with potentially far-reaching ecological effects and as-yet-unknown health consequences. Securing the consent of only a handful of local residents simply is not good enough.
Because Target Malaria’s Burkina Faso experiments are among the first of their kind, they will serve as a powerful precedent for similar experiments worldwide. With proposals for the release of gene-drive organisms in indigenous territories in New Zealand, Australia and Hawaii on the agenda in the coming years, there is a need to establish a clear threshold for what informed consent means and how to secure it.
Copyright: Project Syndicate, 2018.