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Newsletter

Issue No. 02/2016
Read the full version of this newsletter (PDF): here.

In this issue

Updates from the B3Africa ELSI Workshop

The B3Africa Ethical, Legal, and Social Issues (ELSI) Workshop, held on 11–13 April 2016, brought together B3Africa project partners, “use case” institutions, and representatives from ethics committees and governments from different countries.

The broad objective of the workshop was to identify legal and ethical issues and define concepts for the regulatory framework to be applied within an information technology (IT) platform that will be developed for the B3Africa project.

The workshop was hosted by the Medical Research Council (MRC) Unit The Gambia in Fajara, The Gambia.

Jane Reichel and Santa Slokenberga
Uppsala University, Sweden
Work Package 1 - Ethical, Legal and Social Issues
As leader of the B3Africa work package on Ethical, Legal and Social Issues (ELSI), what were your expectations before coming to the workshop and were they met?
Our goal with the workshop was to reach common understanding on key concepts that we need to define within the project, namely informed consent and ethical approval. These two key concepts are undoubtedly very central in genomic research, and they are upheld by African and European partner institutions. As there is not one regulatory framework that is common to all, even in these basic concepts differences emerge. As a result, informed consent and ethical approval in different states mean something different and induce different levels of protection to the data and sample subjects. We also wanted to learn more about the regulatory situation for ELSI in partners’ contexts and to initiate discussions relating to transfer of samples/data and rights of the sample donor/data subject. We had very fruitful discussions, and in the end we were able to agree on definitions that could be used in the project.

Maimuna Mendy
International Agency for Research on Cancer
Work Package 6 - Dissemination
What will you remember from this workshop? What was the most striking point from your perspective?
It was a pleasure to experience the shared enthusiasm for the need to work together in a common project to bridge European and African research and working as equal partners.
It was apparent that participants were keen to share their experiences and contribute to the current trend and the important changes to redefine the scope of international partnership where everyone will truly become equal partners in designing and implementing research agendas. 
Read more

Emma Brew Abaidoo
Breast Care International, Ghana
What will you remember from this workshop?
The different ELSI governance structures from different countries  shared by participants through their respective presentations. Also the strides made by H3Africa which was presented by its members, very encouraging.
Do you feel the workshop will help you formulate advice on ethics and biobanking to your colleagues?
Yes. For example, I have advised our Ethical review committee on the need to use Broad Consent for stored bio specimen in our biobank.
Do you have more comments you’d like to share?
I hope such conferences would lead to more collaborations among countries in the sub-saharan region and African Union countries, and also bridge the gap between Anglophone and Francophone countries. This will surely serve as a catalyst for the harmonization of ELSI across borders within the African continent and improve research collaborations within the continent and with other multinational collaborators outside Africa.


Erisa Mwaka
Makerere University, School of Biomedical Sciences, Uganda

What were your expectations before coming to the workshop, and were they met?
I had never heard about B3Africa before. However, during the workshop, I got to understand and appreciate the noble cause this consortium is trying to achieve. One expectation I look forward to is the formulation of laws and guidelines to govern genomics and biobanking research in all African countries, and the eventual harmonization of these guidelines under the stewardship of consortia like B3Africa and H3Africa.
What will you retain/remember from this workshop?
I was honoured to interact with eminent scientists and bioethicists. I was also excited about the eB3Kit, which will enable scientists all over Africa to upload and share genomic data. This will go a long way in advancing science and hopefully enable the development of therapeutic agents that will relieve Africa of some of its disease burden. As a Research Ethics Committee (REC) chair, I hope to help the B3Africa project in Uganda whenever possible.
Do you have more comments you’d like to share?
I hope someday the dream of harmonizing bioethics guidelines and regulations in Africa will be realized.

Michaela Mayrhofer
Biobanking     and  Biomolecular  Resources Research Infrastructure Consortium (BBMRI-ERIC), Austria
What do you remember most about the workshop and what are the next steps?
The quality and honesty of the discussions on the achievements and challenges of African biobanks were remarkable. It reminded me that in any collaboration you need first and foremost the will to engage in a dialogue. Only this willingness for a mutual understanding of needs and sensitivities allows a true collaboration that ultimately sets out to solve practical issues for the benefit of all partners. I feel privileged to be part of it. As a representative of BBMRI-ERIC, I hope to welcome African representatives and stakeholders at the Europe Biobank Week in September 2016 and continue this exchange. 

SEE YOU AT THE EUROPE BIOBANK WEEK, 13-16 SEPTEMBER 2016 IN VIENNA 

http://europebiobankweek.eu/


Roxana Merino Martinez
Karolinska Institute, Sweden
Work Package 7 - Use Cases

 
This was the first in-person meeting with representatives from “use case” institutions. What will you remember from this workshop? What was the most striking point, from your perspective?
The main aim was to get an overall view of the ethical landscape of the use case countries and to agree on a common ground for the harmonized ethical and regulatory framework of the B3Africa platform. Even when not all the use cases institutions were present, the workshop was  very fruitful. We got to know more deeply about the different implementations of ethical frameworks  across the countries, from very well defined and organized ethical work to poorly implemented or incipient regulatory plans. Nevertheless, the minimum ethical requirements for sharing biobank and research data in the B3Africa platform, have been defined and accepted as a first step for the designing of the general ethical and regulatory framework.
I personally could get in closer contact with use case participants that will be involved in the implementation of the B3Africa platform from the IT side and start planning for the upcoming tasks.
It’s worth noting the enthusiasm and collaboration spirit that prevailed during the three-day meeting. The discussions, interchange of ideas and the concrete results are the main achievements of the meeting beside the outstanding organization level and world class biobank of the MRC Unit The Gambia.

Anouk Berger
International Agency for Research on Cancer
Work Package 5 - Education and Training

 
As leader of the Work Package (WP) on Education and Training, what will you remember from this meeting and how did it contribute to the work of your WP?
It was a privilege to be part of this event and to be welcomed so warmly and efficiently by our colleagues from the MRC. In addition to helping me grasp the underlying and critical ELSI concepts of the project, the workshop allowed me to get to know some key players, especially from the institutions that are going to implement the eB3Kit. In order to inform the development of the B3Africa Training Plan, we conducted a learning needs assessment between January and April. This exercise allowed us to systematically describe what learning material will be developed and, most importantly, who our target audience for training will be. We conducted this mainly through surveys and focused online meetings. The event in The Gambia came towards the end of this exercise and was the perfect opportunity to meet in person and refine some of the expressed needs. The plan is being finalized and will be rolled out from September onwards, with the launch of a series of webinars, followed by the first face-to-face course in December at Stellenbosch University, South Africa, first partner to implement and test the eB3Kit.

First B3Africa Technical Jamboree

Don’t miss the next issue of the B3Africa newsletter, for feedbacks on the first Technical Jamboree, held May 3rd to 6th at the South African National Bioinformatics Institute (SANBI) of the University of the Western Cape. The jamboree was structured in three parallel streams: (A) Implementing the first use case with Stellenbosch University (Bika.biobank), (B) eB3kit Catalogue, BiBBox – Tools integration (C) Bioinformatics workflows and omics data management.

Announcements

Primer on law and ethics for researchers involved in biobanking

In most jurisdictions researchers have a legal, as well as moral, duty to ensure that their research adhere to national standards and regulations. Despite this many researchers lack the basic tools to consider and communicate the complex legal and ethical questions that need to be resolved before biospecimen containing personal information are shared.
Therefore, B3Africa work package 1 has collaborated with BBMRI-LPC to create a short primer on law and ethics for researchers involved in biobanking. The manuscript is currently undergoing open peer review as a preprint hosted by PeerJ. Researchers and ethicists interested in the topic are warmly welcomed to review and comment on the manuscript here.

Upcoming H3Africa Funding Opportunities
The NIH has recently released seven (7) Notices of Intent to Publish a Funding Opportunity Announcements for the second stage of H3Africa. Read more

Upcoming Events

7–10 June 2016 IARC 50th Anniversary Conference
Global  Cancer: Occurrence, Causes, and Avenues to Prevention
Lyon, France
19–21 June 2016 B3Africa Annual Meeting
Graz, Ausria
13–16 September
2016
Europe Biobank Week → B3Africa Stakeholder Forum
Vienna, Austria
September 2016 Launch of the B3Africa Webinar Series
November 2016
Dates to be confirmed
Sub-Saharan Biobanking Workshop
Nairobi, Kenya
December 2016
Dates to be confirmed
B3Africa Use Case Training No1
South Africa
3–8 December 2016 ASLM 2016
Laboratory Medicine in Africa: Combatting Global Health Threats
South Africa

B3Africa Partners

Partners in B3Africa are:
Sveriges Lantbruksuniversitet (SLU), Sweden; Biobanking and Biomolecular Resources Research Infrastructure Consortium (BBMRI-ERIC), Austria; Karolinska Institutet (KI), Sweden; Centre for Research Ethics & Bioethics (CRB) at Uppsala University, Sweden; University of the Western Cape (UWC), South Africa; Makerere University (MAK), Uganda; Stellenbosch University (SU), South Africa; International Agency for Research on Cancer (IARC), France; International Livestock Research Institute (ILRI), Kenya; Medizinische Universität Graz (MUG), Austria; and Institute of Human Virology Nigeria (IHVN), Nigeria.

Contacts

Project Coordinator
Dr Erik Bongcam-Rudloff
Erik.bongcam@slu.se
+46-18672121
Website: www.b3africa.org





B3Africa website & newsletter
Dominique Meunier
Project Assistant
MeunierD@iarc.fr


 

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