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Nicki Tiffin - Calestous Juma Fellow

Nicki Tiffin

Professor

University of the Western Cape, South African National Bioinformatics Institute

About Nicki

Nicki Tiffin is a molecular geneticist, computational biologist, epidemiologist, and health data wizard. But above all, she is a problem fixer.

"I've banned the words 'should' and 'ought' from my lexicon. I'm not interested in thinking about what we ought to be doing. I'm interested in building a tool that makes the solution happen," said Nicki, a professor at the University of the Western Cape in South Africa.

The tool she has developed addresses one of the oldest inequities that disadvantages African researchers: Data sharing with researchers outside the continent.

For decades, it's been best practice for researchers to upload their data and samples to a public repository for all to use. The problem: African researchers are usually the ones who spend years collecting the samples, and once they make the data public, researchers in high-income countries have the resources to comb through the data and publish papers faster, even though they lack a full appreciation of the local context. This hurts the quality of the analyses and the career prospects of African researchers.

"Africans have less advocacy to push back because of the inequitable funding setup. The data sharing tool I am developing is an attempt to shift that dynamic and get a better outcome for Africans in general," said Nicki.

Nicki has built the African Data and Biospecimen Exchange (https://ADBEx.org), an online platform that will give African researchers a voice in how research is done and how they will have oversight of onward use of those resources.

The platform is akin to a free advertising arena where researchers can post information about their datasets and biospecimen collections available to share, without having to share them outright or send them to a centralized repository. Interested parties can initiate a negotiation on how they would be used. For instance, in exchange for the data or biospecimens, African researchers might choose to request the other party share bylines on published papers, include them in the team doing the analysis, or furnish new equipment for the health clinic that collected the samples.

An additional product made possible through the Fellowship is the Data Sharing License, by ADBEx. This tool allows anyone, holding any kind of data, anywhere in the world, to create a License to clearly articulate the terms and conditions for using those data (https://license-builder.adbex.org/).

More equitable data sharing can lead to a virtuous cycle of benefits. African populations will benefit from better-informed research using their data and biospecimens, and increased collaboration and improved career development could curb the brain drain of African researchers moving overseas.

These new tools we have developed can help African and global data and biospecimen generators and end-users to engage in more ethical and equitable sharing of these resources, and to contribute to these growing benefits for Africa.


Grand Challenges Awards

Modeling Infectious Disease Drivers for Gestational Diabetes Outcomes

Initiative: Grand Challenges
Challenge: Strengthening Health and Disease Modeling for Public Health Decision Making in Africa

Learn more about the award

Sep 16, 2024

The African Data and Biospecimen Exchange - Facilitating Equitable Data and Biospecimen Sharing, and Resolving Barriers to Data and Biospecimen Sharing in Africa

Initiative: Grand Challenges Global Call-to-Action
Challenge: Calestous Juma Science Leadership Fellowship

Learn more about the award

Oct 11, 2021


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