Patricia Lund

Myths and beliefs about albinism in Africa; Genetic care of children with albinism in southern Africa; Albinism during the Apartheid Era: a narrative study of lived experiences; Representations of black people with albinism in the UK: a historical perspective; Pedagogical research on development and evaluation of e-learning material in genetics; Population genetic studies on OCA2 among the different clans of the Venda in South Africa; Inclusive education of pupils with albinism in Malawi: policy issues and the role of itinerant teachers; Sun-protection study of children with albinism to determine existing habits, knowledge, barriers to change; Developing SMS messaging and mobile apps to deliver health and educational messages about albinism in Africa; Direct measurement of biologically-effective UVB exposure to estimate risk among young people with albinism in South Africa; Genetic care, knowledge of albinism and assessment of the impact of a self-help group among people living with albinism in the UK; Optometric study to document the visual performance of children with albinism and to assess the effectiveness of low-vision aids; Molecular genetic studies to determine the frequency of a common deletion mutation among people with albinism in the Shona, Sotho and Venda groups; Questionnaire-based studies covering health, education and social aspects of living with albinism in local communities in South Africa and Zimbabwe; Integrating community and media networks to promote educational inclusion of children and young people with albinism in Malawi, Zambia and Zimbabwe; Public perceptions and attitudes to the use of emerging genetic technologies: genetic testing, neonatal screening, pre-natal diagnosis, pre-implantation genetic diagnosis, stem cell research, HPV vaccine introduction

While working as an expatriate lecturer in genetics at the University of Zimbabwe in the early 1990s I initiated a project investigating the inherited condition oculocutaneous albinism. Since then I have explored genetic, health, educational and social issues surrounding albinism in southern and central Africa, where this condition has a high frequency. My motivation is to provide the evidence base to inform policy and attitudes to albinism, from ministerial to village level, with the goal of improving the quality of life for this vulnerable group.

Research studies on albinism in Zimbabwe, South Africa, Malawi, Zambia and Ghana have been wide reaching with multiple partners and funders. Information has been gathered on the frequency of albinism in different populations, mutations in the gene causing the condition, sun protection strategies adopted to reduce the risk of developing sun induced skin damage, health (especially genetic) care for this vulnerable group, education (mainstream versus special schools) and social perceptions (and misconceptions) about albinism in African communities. These multi-faceted studies have been enriched by collaborations with local albinism associations in Africa and I have also been privileged to meet many families with albinism.

In addition to academic outputs, I have written (with other authors), two pamphlets on Albinism in Malawi; Information for children (also available in Chichewa) and information for teachers and parents. A further booklet for children with albinism in Zambia and another general one for Africa covers issues of inheritance. Posters and a radio drama called LOVE BUILDS have also been developed to educate communities about albinism. There materials are all open access and are used for training around issues of albinism in Africa.