To build trust, competence and value, let local researchers take control of biobanks!
Conversation with Dr. Erik Bongcam-Rudloff, Professor of Bioinformatics at the Swedish University of Agricultural Sciences, Uppsala, Sweden and organizer of a workshop on Biobanking in Africa at Uppsala Health Summit 2018.
Along with the revolution in genomic research, many biobanks are currently established around the world to gather and store samples for research. Africa is no exception. In fact, because of the rich genetic variety in different African populations, the continent has long been subject to mining of genetic samples for pharmaceutical research. Too often though, the samples have left the continent and been analyzed elsewhere for the benefit of health-needs in high-income countries, never to be of value to the people who donated their blood or body tissue. This however is about to change. There is presently a movement among researchers in Africa to take control over their genetic sources to improve prevention and care locally, and to contribute towards an increased global understanding of causes and mechanisms of diseases.
But the management and sustainability of a biobanks is not an easy task. Especially when operational frameworks are missing, and there is a lack of trust in the governance of the biobanks. Building transnational biobank networks is even more difficult, as these require sharing of samples and interoperability of data.
One of the workshops at Uppsala Health Summit, “Biobanking for Global Cancer Care”, is devoted to the subject of building sustainable and locally managed biobanks in low-income countries.
"With the trend of building biobanks comes a host of issues concerning technological compatibility and ethics, such as informed consent and sharing of benefits. The workshop at Uppsala Health Summit will be an opportunity to discuss some of these critical issues”, says workshop leader, Dr. Erik Bongcam-Rudloff; Professor of Bioinformatics at the Swedish University of Agricultural Sciences, Uppsala, Sweden.
Professor Bongcam-Rudloff and his team are presently involved in closing a EU-supported project: B3Africa: “Bridging Biobanking and Biomedical Research across Europe and Africa”. Over the past three years, the project has built an informatics platform that consists of different modules that helps in the different stages of building a biobank. One module supports field sample collection with automatic upload to a database. The next module assists in developing analysis of the samples that have been gathered. There is also a Laboratory Information Management System (LIMS). Finally, there is also a module that support the development of legal and ethical frameworks.
"People think it is expensive and very complicated to build quality biobanks, but with this project we have shown that it can be done with a price tag that everyone can afford. Now, we would like to create an education system whereby people from different countries can learn how to deploy these systems and adapt them to local conditions and frameworks…"It´s like we built a car, but now we need people to learn how to work on the engine and change the tires if they need to, and also of course how to drive it" Professor Bongcam-Rudloff explains.
"There is a lof of enthusiasm among the researchers that have been involved in the project which consists of experts from 11 partners organisations from Africa and Europe. I think there is a feeling of great opportunity to be part of something very important for the future!"
There are 4 topics on the Biobanking for Global Cancer Care workshop agenda:
• Identify long term incentives and funding opportunities to support biobanks in low and medium income countries.
• Find mechanisms of strengthening local control over samples and data while encouraging collaborations (perhaps moving towards a WHO model of data ownership and sharing?).
• Develop a road map to translational medicine in cancer treatment for LMICs.
- Technical and infrastructure aspects to consider when building a biobank.
Interested in participating in Uppsala Health Summit 2018 and the workshop on building biobanks in Africa? Register here or send an email to firstname.lastname@example.org