Project 463437

Until recently, occulocutaneous albinism has received little attention as a global human rights concern. However, recent attacks, mutilation and murder of persons with albinism in Sub-Saharan Africa have resulted in national and international organizations (including the United Nations) raising public awareness of this neglected condition. Ikponwosa Ero, the UN Independent Expert on the enjoyment of human rights by persons with albinism, invited us to support her mandate with our research expertise on equity and global health. In findings from our subsequent research on human rights, mothering and albinism in Tanzania, South Africa, and Ghana, mothers who had given birth to a child with albinism recounted being stigmatized and abandoned by birth attendants, families, and communities. Our findings also revealed that while midwives and nurses are the most common birth attendants, they receive very little or no education about the albinism, despite its high prevalence in many parts of Africa. This knowledge gap left birth attendants reliant on widespread misunderstandings and stigmatizing myths about albinism. Building on our program of research, this case study will concentrate on health professions education for perinatal care of parents of infants with albinism. Specifically, the purpose of this case study is to examine how health professions education in regard to perinatal care for families impacted by albinism can be strengthened through intersectoral partnerships (between civil society, healthcare professions education programs, service providers, and policymakers) and the development of contextually relevant educational strategies (curricula, competencies, best practice guidelines, teaching resources). Our aim is to protect the human rights of persons with albinism, including their welfare and security, social determinants of health, and gender equity.