Conducting research in three countries with team members from eight universities and three civil society organizations (CSOs) makes for a rather complicated Human Research Ethics Board (HREB) approval process. Rightly so.
To conduct global health research, especially in contexts of varying resources, colonial legacies, and histories of research that have not tended to local concerns, carries with it ethical obligations that must be met to protect the rights of our research participants (Canadian Coalition for Global Health Research (CCGHR), 2015).
In this blog, I (Emma), with my thesis supervisor and project lead (Sheryl), reflect on the upfront effort required to ensure research ethics clearance for our projects.
Research with people who face structural vulnerability and are marginalized in their societies must hold to the highest ethical standards, to ensure that the research process does not inadvertently cause harm or create additional burden for participants. This is particularly the case for mothers impacted by albinism, as many of them already face multiple threats to their human rights. For example, for some who live in regions where attacks have occurred, it can be important to not have their whereabouts made known. We are cautious to promote their dignity which includes them making informed decisions about participating in our project. Likewise, secure transfer and storage of data must be ensured.
To conduct global health research, especially in contexts of varying resources, colonial legacies, and histories of research that have not tended to local concerns, carries with it ethical obligations that must be met to protect the rights of our research participants (Canadian Coalition for Global Health Research (CCGHR), 2015). The World Health Organization (WHO) and the United Nations Educational, Scientific and Cultural Organization (UNESCO) have outlined expectations for researchers and member states to attend to, considering human rights, dignity, and equitable access to research findings (UNESCO, 2006; WHO, 2011).
With these principles in place, we have moved forward through the research ethics review process in a sequential fashion. This process for the Mothering & Albinism Project began with a pilot project in Tanzania (which contributed to Emma Strobell’s thesis). Our first step was obtaining research ethics clearance from TWU’s HREB (approved August 8, 2018).
The second step was seeking research clearance In Tanzania, where a rigorous national process exists for both social sciences and medical research. Our initial application, submitted to COSTECH (Tanzania Commission for Science and Technology) in person by our local research collaborator, underwent review and was determined to require medical research clearance due to the subject matter involving a medical condition. We were thus asked to submit an application to the National Institute for Medical Research (NIMR). Here, our proposal, following revisions and clarification, received approval and was sent back to COSTECH for the final approval process and issuance of a research permit that we needed to show with our VISAS for entry to the country. The timeline with all levels of approval for research in Tanzania was approximately 6 months (approved November 29, 2018). Along with each application a fee for submission and processing was required. A bank wire or payment in person were acceptable options. We were able to arrange for in person payment by our partner organization, reimbursing them for the cost from our grant funds. We found that, as much as possible, in person was the best approach.
This process, while cumbersome, became the opportunity to appreciate the depth and breadth of our partnership with the local CSO in Tanzania: both of us realizing our commitment to the project and ability to work together. We recognized quickly that we needed to physically walk this application through the channels; being an ocean away was of no benefit. While our schedule and funds did not allow for this kind of pre-trip leg work, our partners at UTSS Tanzania guided us and the documents through the process. Our partner at UTSS in Dar es Salaam personally advocated for the project, highlighting the necessity and timeliness of the work to continue to push the human rights agenda for persons with albinism in Tanzania.
The larger Mothering and Albinism Project received funding in 2019 to extend data collection from Tanzania to South Africa and Ghana. Our primary ethics clearance continues to be from Trinity Western University, where Reimer-Kirkham and Astle are faculty members and where the project is housed. Once we had approval from TWU HREB for the expanded project, we concurrently sought approval from the universities of our co-investigators:
McMaster University – Dr. Bonny Ibhawoh
University of Ottawa – Dr. Lori Beaman
University of Toronto – Dr. Wisdom Tettey
University of Pretoria – Innocentia Mgijima, JD
Letters of support: Ambrose Ali University, Kingston University, University of Witwatersrand, Under the Same Sun, Operation Eyesight International, and Albinism Society of South Africa (universities/organizations of co-investigators and collaborators)
In South Africa, HREB clearance is from University of Pretoria, with Innocentia Mgijima-Konopi’s assistance at the Centre for Human Rights. Having an academic partner in South Africa leading the HREB process has resulted in a shorter approval timeline. Important to this process will be the ongoing permissions from organizations who we are recruiting through, as well as process consent from our participants.
In Ghana where we will be conducting this research in 2021, we will go through a similar process of local HREB clearance.
COVID-19 has presented unique challenges to our project timelines. Nonetheless, we are finding several avenues to pursue to keep our research moving forward, while we as a global community await for a significant improvement in the situation. With HREB amendments approved to address virtual interviewing/fieldwork alongside the harmonization process in which each institution is updated with the final documents and final protocol reflecting particular requests from the various HREBs, we have made strides forward.
Here are my (Emma’s) summarizing words of advice for the novice researcher looking to conduct research in Tanzania. While my experience is limited to this one project, local partnerships and feet on the ground felt imperative to our process. Budget a good amount of time to obtain necessary permits. As we experienced, COSTECH may require your research to undergo NIMR approval, in addition to COSTECH approval, if your study engages with a medical topic – even if from a social sciences lens. Once you have your approvals in hand, getting your research visa is a relatively smooth process, particularly as you are now able to apply online. I recommend phoning the Tanzanian embassy in your home country for guidance; the embassy staff provided really helpful assistance.
Resources for Curious Fellow Researchers
COSTECH: http://costech.or.tz/registration
NIMR: https://www.nimr.or.tz/ (open tab at top of page entitled ‘Health Research Ethics’ and follow links for ‘How to Apply for Ethical Clearance’)
CCGHR: https://www.ccghr.ca/ (for expertise on conducting global health research, some pointers provided regarding obtaining research clearance in various countries)
Blog “Research Permits in Tanzania… An Idiot’s Guide”: In my initial searching back in 2018, I came across this blog post and found it quite informative. While some things are now outdated, it remains useful, even if just for the encouragement not to give up! https://haliproject.wordpress.com/2011/06/06/research-permits-in-tanzania-an-idiots-guide/
References
Canadian Coalition for Global Health Research. (2015, November). CCGHR principles for global health research. Retrieved from: http://www.ccghr.ca/resources/principles-global-health-research/
UNESCO. (2006). University Declaration on Bioethics and Human Rights. Retrieved from https://unesdoc.unesco.org/ark:/48223/pf0000146180
WHO. (2011) Standards and Operational Guidance for Ethics Review of Health-Related Research with Human Participants. Retrieved from https://apps.who.int/iris/bitstream/handle/10665/44783/9789241502948_eng.pdf?sequence=1
Banner Photo Credit: WHO. (2011) Standards and Operational Guidance for Ethics Review of Health-Related Research with Human Participants. Retrieved from https://apps.who.int/iris/bitstream/handle/10665/44783/9789241502948_eng.pdf?sequence=1
Mothering & Albinism 