African Scientists Call for More Control of Their Genomic Data
We couldn’t be more pleased that the genomics revolution has finally turned its attention to Africa. But, as more northern researchers flock there to collect data, their intentions have come under fire.
On 18 April, Human Hereditary and Health in Africa (H3Africa) Initiative, a health-genomics consortium that supports research in African institutions, issued guidelines for the ethical handling of samples for genomic studies, reports Nature.
The voluntary rules have been established as an effort to combat ‘helicopter’ research, in which foreign scientists take samples and data from communities and then return to their home institutions. The guidelines are also hoping to ensure that African citizens see health benefits from research.
Over the past few years, researchers have begun sequencing the genomes of Africans in large numbers. This data offers insights into humanity’s past as well as predisposition to disease and potential reactions to drugs in African populations – the world’s most genetically diverse.
However, due to the small number of institutions on the continent having the equipment to handle large genomic data sets, African scientists wanting to work on such projects have often had to accept terms offered by foreign partners, explained Jantina de Vries, a bioethicist at the University of Cape Town in South Africa and co-author of the guidelines. “African research has been held over a barrel,” she said.
In addition, the document calls for “meaningful and substantive” African intellectual contributions to research that draws on African samples. It says that researchers might be able to take specimens out of the continent in some cases, but projects should involve African scientists and build their capacity to work independently. Vries’s team stressed that research should respect African values and should benefit citizens.
There is hope that the framework will empower local scientists in negotiations with foreign partners. But, time frames for analysis do present a challenge for African researchers who lack the computational facilities of the global north, added Michael Pepper, a coordinator of the Southern African Human Genome Programme, based at the University of Pretoria in South Africa, who provided input into the framework. “As soon as it falls into the hands of researchers in the Northern Hemisphere, we get left behind,” he noted.
Such a framework will provide very useful in the future for African research-ethics committees that are charged with assessing proposals for studies. Many are unsure how to treat genomic research, said de Vries.
International research funders have come forward, highlighting that they are unlikely to impose the framework wholesale. The Wellcome Trust, for example, prefers to keep its funding rules broad to allow for different types of study, explained Katherine Littler, a global policy advisor for the trust in London.
“That said, I believe this framework will set the benchmark for what is best practice in doing genomics and biobanking in Africa,” she added.
The framework “codifies what we have been talking about for many years,” said Brenna Henn, a population geneticist at the University of California, David, who has been collaborating with African scientists on genomics projects for more than a decade. She continued to reveal that a number of its recommendations, such as feeding back research results to sampled populations, are still missing from many projects.
Nevertheless, Henn is concerned that the rules could heighten tensions between scientists in Africa and those in the global north. “The amount of work in adhering to this framework is significant and greater than what is happening right now,” she added. Therefore, the guidelines could be a rude awakening for scientists who seem to believe they can fly into an African country, study a genetically unique population and export the samples in a few months.
“That might have worked 15 years ago,” she added. But, now it takes years to find local partners, work out the ethics clearance and fulfill other duties to show good faith. “A lot of people in the U.S. have still not internalised that,” she concluded.