Ethics & Engagement across the Wellcome Trust Major Overseas Programmes
Jane Kahindi is a 2019 GHBN Bursary Fellow
Jane Kahindi Kalume is an Assistant Research officer at the KEMRI-Wellcome Trust Research Programme in Kenya. She joined the Programme immediately after her O-level education in 2003 as a junior fieldworker and progressed quickly to senior fieldworker. She holds a BSc Degree in Environmental studies (Community Development). Since March 2018, Jane is an Assistant Research Officer on the Biobank project under the Health Systems and Research Ethics department. She is enthusiastic to learn about ethical issues around sharing of samples beyond primary research, and how to engage communities and lay publics about biobanking.
Project outline: Engaging communities about Biobanking: Developing and Evaluating an animation video to engage the lay public
Biobanks are organized collections of human biological specimen with associated personal information for biomedical/health research. Biobanking involves the storage and sharing of samples and pseudo-anonymized-data. Explaining the purpose and practices of biobanking to lay communities contributing samples is ethically important, but it’s complex since biobanking is an uncommon practice in much of Sub-Saharan Africa. In addition, there are ethical issues emerging in the sharing and shipping of samples, which need to be articulated and addressed for biobanking to be acceptable. Given its complexities, it is important that innovative engagement approaches are used. We aim to use an animation video to engage communities about biobanks and elicit their views about key considerations for biobanking in LMIC.
We intend to use a participatory approach in developing a 10-minute animation video and evaluating its effectiveness in engaging communities about biobanking. Evaluation will involve qualitative and quantitative approaches where data collection will include documentation of the process of developing the animation video, observations, Focus Group Discussions, In-Depth Interviews, pre- and post-surveys with a range of stakeholders including community members. The animation video will be refined after incorporating community feedback and further used in community engagement on biobanking. It will also be shared widely in MESH, GHBN, and H3Africa networks among others.
Update (April/May 2020)
We have currently been doing well in our study implementation however the COVID-19 has a little bit affected our study plan. We were organizing a one week animation development training by a trainer from the Global health network which was to be held from 30th March to 3rd April 2020. The COVID-19 epidemic has led to the cancellation of the training until later in the year. This would call for study time extension as we are not going to be able to complete the study on 31st may 2020 as planned.
Detailed description of current situation, projected activities and timelines for the animation project
Covid19 situation in Kenya
The 1st case of COVID19 in Kenya was announced in 13rd March 2020. Immediately the Government issued broad directives that involved closing of all schools and learning institutions, social distancing, hand hygiene, restrictions on travels and working from home for non-essential services. Kilifi was immediately identified as hotspots as a political figure who had travelled outside the country was found to be COVID-19 and had not self-quarantined but as was mandatory. Ten COVID-19 positive cases in Kilifi were immediately isolated; our Research Programme went immediately into lock down (as it is a testing Center) and since then we are working from home. All research activities were stopped, including the animation video project; and only essential workers – those working in the hospital wards and in the labs – are permitted to go to work, with permission from Government Ministries. This has stalled the animation project, and we are not sure when these restrictions will be uplifted. Below we provide an overview of what we had accomplished by the time of lockdown, progress we have made while working from home and projected timeline for the remaining work, recognizing uncertainty on when we might re-open.
Progress of the animation project
Key considerations moving forward and projected timelines for the project
We suspect that we might be in lock down for the next 3 months (more or less); and that should these be lifted then exiting the lock downs will use a staggered approach. Thus, while it might be possible to continue with activities that only involve staff in the next 4-6 months, activities that involve bringing community members together may not be possible (unless these are in extremely low numbers). Thus, moving forward, we think that
Currently, we have submitted an amendment to the ERC of the protocol that this animation video is nested within,seeking permission to use the various communication platforms to engage community and research stakeholders and evaluate the engagement and use of these platforms. The evaluation of the animation video will inform on the usefulness of these platforms.
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