Ikponwosa Ero, United Nations Independent Expert on the Enjoyment of Human Rights by Persons with Albinism, approached us (Dr. Barb Astle and myself, Dr. Sheryl Reimer-Kirkham) a few years ago about supporting her mandate as researchers. Her invitation was compelling. Though neither of us had conducted research on albinism, we draw on our respective areas of research expertise: Barb as a global health researcher who has conducted research in Ghana, and Sheryl as a health researcher studying equity and diversity (with a focus on religious and spiritual diversity).
Our entrée to albinism research was a funded scoping review to summarize the existing scientific evidence on albinism, spiritual/cultural beliefs, and health (Reimer-Kirkham et al., 2018). From there, we received a grant (SSHRC Insight Development Grant) to prioritize a research agenda, advocacy strategies, and policy priorities for albinism, spiritual/cultural practices, and human rights, and to establish a research-policy-advocacy network. This grant involved an expanded meta-narrative literature synthesis, a Delphi survey of experts in the field, and a Roundtable held in Geneva in September 2018. This event brought together a group of scholars, policy-makers, and civil society stakeholders to focus—for the first time—on research priorities. Roundtable participants came from eleven countries: Tanzania, Nigeria, Kenya, Malawi, South Africa, Britain, Germany, Switzerland, Australia, Canada, and USA.
Our tagline for the Roundtable was “nothing about us without us”. Represented at the Roundtable were persons with albinism, who are national and global leaders in albinism advocacy, policy-making, and research. We had equal representation from the Global South and Global North. Key to our ability to discern a research agenda going forward were researchers who have long been engaged in the field: Drs. Jennifer Kromberg, Dr. Patricia Lund, and Dr. Murray Brilliant.
During this 2-day dialogue, the Roundtable participants confirmed mothering and albinism as an urgent research priority, particularly when foregrounding the resilience of mothers. Civil society organizations Under the Same Sun in Tanzania and Albinism Society of South Africa requested to partner with us to research this issue. These invitations position us to generate knowledge to directly improve the security and well-being of mothers impacted by albinism in Tanzania, South Africa, and Ghana.
The Report from this Roundtable, published by the United Nations, is available here.
Reimer-Kirkham, S., Astle, B., Ero, I., Panchuk, K., Dixon, D. (2019). The influence of spiritual and cultural practices on health and healthcare of persons with albinism: A scoping review. Disability & Society, 34(5) 747-774. http://dx.doi.org/10.1080/09687599.2019.1566051