Africa’s science academy leads push for ethical data use

The goal is to create the continent’s first cross-disciplinary guidelines for collecting, storing and sharing data and specimens.

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A health official takes a blood sample of a mother for malaria testing in Lagos, Nigeria

The African Academy of Sciences is creating guidance to help ensure that studies benefit the continent's citizens and scientists.Credit: Pius Utomi Ekpei/AFP/Getty

The African Academy of Sciences (AAS) has started work on the continent’s first cross-disciplinary guidelines on how to collect, store and share research data and specimens in ways that protect study participants from exploitation and benefit African citizens.

Members of the AAS Data and Biospecimen Governance Committee, who met for the first time on 10 and 11 June in Nairobi, Kenya, hope to address these issues, which pose persistent challenges for African nations and researchers.

The committee’s guidance won’t have legal authority — rather the goal is to provide a resource for governments creating their own policies and to guide researchers, according to committee members.

The AAS holds significant political clout on the continent, says John Mugabe, a science-policy specialist at the University of Pretoria in South Africa. He says some of the AAS fellows are senior government officials in their countries or members of their legislative assemblies, and the academy holds observer status in the African Union.

The AAS committee includes about a dozen African bioethicists, data specialists and legal experts. And it plans to gather input from other disciplines and groups including patient organizations and community advocates. “The composition of this is basically African, to hear the African voice,” says Jenniffer Mabuka-Maroa, an AAS research programme manager based in Nairobi and the convener of the committee meeting.

Ethics codes

Other groups and communities in Africa have produced data-sharing guidance or ethics codes. But the AAS committee’s work is the first attempt at multidisciplinary guidelines for all of Africa.

At the meeting last week, the group reviewed common challenges for collecting and handling research data in Africa, including sensitive and potentially lucrative information gathered for medical research and bioprospecting — the practice of scanning natural resources such as plants and animals for compounds that can be turned into drugs or other commercial products.

Data sharing, particularly in genomics and biodiversity, is a hot topic across Africa. In South Africa, an information protection bill due to go into effect next year could block research for which scientists collect data or biological samples such as blood and tissue under ‘broad consent’, whereby study participants agree that researchers can keep and analyse their samples for unspecified purposes. Some local scientists are lobbying the government for an exemption, saying that restrictions could hamper work on diseases such as HIV and tuberculosis.

Procedures during disease outbreaks are also controversial. Foreign medical workers and researchers who came to West Africa during the 2014-2016 Ebola outbreak exported blood samples from some of the affected nations — sometimes without the donors’ consent — to their home countries for quicker analysis. Despite attempts to recover these specimens or to find out what happened to them, many samples remain in foreign laboratories and it’s unclear whether Africans will share in any benefits from the research, such as new treatments.

These issues are among many that the AAS committee might consider while drawing up their guidelines.

Even when data-sharing policies are negotiated as part of international partnerships, African scientists might feel unable to push back against the wishes of powerful donors or research partners. African scientists may not question unfair policies for fear of harming their funding chances — and instead simply accept the grants and their inequitable conditions, says an African researcher who didn’t want to be named because of the sensitivities of the situation. This is especially problematic for younger researchers, the scientist says.

Clear national or institutional data-sharing policies could help scientists who find themselves in such a position, the AAS committee said. “By having these frameworks, researchers will become less vulnerable and be better able to engage with their donors to achieve mutual respect and benefit.”

Back to basics

The situation is compounded by Africa’s lack of research infrastructure, including quality data repositories and equipment such as gene sequencers. Collet Dandara, a geneticist at the University of Cape Town in South Africa, largely blames African governments for failing to provide such infrastructure for genomics research, which forces the continent’s scientists to send samples abroad for analysis.

Even initiatives designed to strengthen African expertise rarely cover basic infrastructure, Dandara says. That means African scientists can’t keep studying data that they have helped to collect once the initial round of projects — on which they usually work with international partners who have the analysis capabilities — finishes. Dandara says this happened with the MalariaGEN project, which collected genomic data from malaria parasites, mosquitoes and people. Several UK and US health agencies and charities started it in 2005. “A whole lot of studies were done in Africa, but to interrogate the data is difficult for African scientists,” he says.

However the AAS committee guidelines address the practical challenges of data sharing, it’s important that they also uphold African values, says Dandara. Communities that take a group-centred approach to participation in research projects, such as the San people in southern Africa, can run into problems with the individualized approach to data ownership and benefit sharing that is common in Western science. Deciding how to proceed would involve working closely with communities that have some claim to the information being gathered, Dandara says, including asking members how they think the work should be done.

Some people say the communities wouldn’t understand the research, Dandara says. “But if they don’t understand, why are we researching them? Maybe it’s us who don’t understand.”

Nature 570, 284-285 (2019)

Updates & Corrections

  • Correction 18 June 2019: An earlier version of this story incorrectly stated Jenniffer Mabuka-Maroa's role on the AAS Data and Biospecimen Governance Committee. She convened the committee's first meeting; she does not chair the committee.

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