- Nature News
Give African research participants more say in genomic data, say scientists (Africa)
Tensions are building in Africa over the rules that govern the donation of biological samples and data to research. Many human genome studies ask participants to sign a form that gives them little direct control over how their data will be used. But a panel of researchers in Africa says that this can fuel distrust between researchers and participants, and needs to change. This stark message comes in a report published last week, Recommendations for Data and Biospecimen Governance in Africa, from a committee of 13 African scientists, whose expertise ranges from bioinformatics to genomics. The African Academy of Sciences, based in Nairobi, and the African Union Development Agency, based in Addis Ababa, convened the group in June 2019 in response to concerns that international research-funding agencies and researchers from high-income countries have a disproportionate influence when it comes to setting research priorities and data-sharing rules in Africa. The report says that research participants in Africa are especially vulnerable to exploitation. This is because illiteracy and disease are common in Africa, and many people have poor access to medical care. By participating in research, people can access doctors when they are unwell. It is currently accepted practice in genomics research for data-access committees — groups of experts that are independent of researchers and funders — to decide who gets to see and use genomics data. The report’s authors want research participants in Africa to have more of a say in decisions made about their data, and, in particular, to avoid what is called broad consent, which allows researchers to reuse data to answer new research questions, subject to access-control regulations. “This requires participants to cede their autonomy to researchers entirely,” they write. “Broad consent has been a dogma of the funder,” says Godfrey Tangwa, a philosopher and bioethicist who is emeritus at the University of Yaoundé 1 in Cameroon and one of the report’s authors. He says research funders do make ethics a priority for their research — but that their ethics guidelines often serve the funders’ needs, not those of research participants.
Read more here
- University World News
Government orders university council to delink colleges (Malawi)
The Malawi government has ordered the council of the University of Malawi (UNIMA) to push ahead with delinking or unbundling its constituent colleges, a mechanism to establish more public institutions, despite the project having been suspended on 20 January. The council voted on that day to suspend the creation of the independent universities, claiming that a 2017 decision authorising the process was not in line with Malawian law at the time and, hence, was ultra vires. This stalling has clearly upset a government that secured legislation last year to authorise this long-running project. Subsequently, it has now formally instructed the UNIMA council to go ahead with delinking. On 18 February, Malawi Vice President Saulos Chilima, who heads a wide-ranging set of public-sector reforms (under which the university reform falls), met the UNIMA council, the Justice Minister Titus Mvalo, the Attorney-General Chikosa Silungwe, the government Director of Higher Education Dr Levis Enaya and officials from the Malawi Department of Statutory Corporations. A statement issued by the vice president’s spokesperson, Pilirani Phiri, states that the government had consultations with stakeholders to affirm its position to proceed with the delinking process. As a result of this, the government statement said the ministry of education should now gazette the commencement date for the delinking legislation, implement a detailed plan of action and establish a transitional unit to oversee and conclude the process. President Lazarus Chakwera had already, last year, assented to Acts 19 and 18 of 2019 that authorised the merger of the university’s College of Medicine and Kamuzu College of Nursing into a Kamuzu University of Health Sciences; and the transformation of UNIMA’s The Polytechnic wing into a Malawi University of Business and Applied Sciences.
Read more here