Data Sharing Centre in Uganda

By Esther Nakkazi

I first wrote this story for sciedev.net  http://bit.ly/1NJDm8but it had some misinformation which has been corrected here on my blog.

A medical informatics centre was commissioned in Uganda to enable the country’s scientists share big data with the rest of the world.

The state-of-the-art Ugandan Medical Informatics Centre (UMIC) will collect, store and analyse data to advance genomic research.

The five-year project was presented to a scientific audience during the 2015 Science Symposium Programme at the Uganda Virus Research Institute (UVRI) held on 13 August 2015.

The centre, which is a partnership between the MRC Uganda, the Wellcome Trust Sanger Institute and the University of Cambridge, is funded by the UK Medical Research Council. The UMIC is located at the UVRI campus in Entebbe.

“We produce a lot of data but we cannot handle them. The centre will be able to share sequenced data with similar ones around the world,”said Pontiano Kaleebu, director of the MRC/UVRI Uganda Research Unit on AIDS. The integrated data centre cost £3 million (about US$4.7 million), according to Kaleebu.

Genetic and genomic data have implications for individuals, families and society. They can be used to identify how families and communities are susceptible or resistant to diseases.

Jenny Thornton, the programme manager of the African Partnership for Chronic Disease Research (APCDR) at the UK-based University of Cambridge, said the centre will analyse medical data for use worldwide.

APCDR provides opportunities to assess the burden of non-communicable diseases and their risk factors by developing strategies for data harmonisation, shared resources, and by bringing together epidemiological studies, research expertise and infrastructure across Sub-Saharan Africa.

The UMIC will be a crucial resource in helping to develop preventive and control strategies for non-communicable diseases, said Thornton. But the data must be turned into practical use, she cautioned.

Kaleebu said the UMIC will also be used to build capacity in bioinformatics in Africa. Bioinformatics can be used in hospitals to find disease trends among specific age groups, and to aid policymaking.

The centre has been established at a time when there is increasing genomic research in Africa, but genomic data are sent abroad because analysing them is limited, according to Kaleebu.

“Our African colleagues are interested in using these data,” said Kaleebu. “The data will be owned by the countries, scientists or institutions that send them to us, but we shall have partnerships.”

He said a fee for the services offered would be worked out to help sustain the centre.

These centres are very good for sharing information and they make research for big sample sizes cheaper, but they pose some ethical dilemmas, says Erisa Sabakaki Mwaka, a bioethics expert at the School of Biomedical Sciences, Makerere University College of Health Sciences.

Mwaka asks: “For instance, if you find out from these data that a certain population is predisposed to a particular disease, do you go back and tell the communities if it is [doing] something bad?”

And accessing the data could pose a challenge for ownership and biopiracy because Uganda has no specific legislation on genomic research, Mwaka adds.

This article was produced by SciDev.Net's Sub-Saharan Africa desk 

http://www.scidev.net/sub-saharan-africa/data/news/centre-launched-aid-medical-data-sharing.html.