Persons with Albinism and their Right to Health, Education and Employment in the UK: Preliminary Research Findings

This report examines the situation of persons with albinism in the United Kingdom (UK), concerning their right to health and access to healthcare. It also explores the extent that persons with albinism can access education and secure employment, both of which are also human rights and help support the health and wellbeing of all persons worldwide. The report is based on formative research and provides a preliminary view of the situation of persons with albinism in the UK. Evidence is synthesised from several complementary avenues, including firstly; a scoping review of pertinent academic and grey literature.

Secondly, interviews with key informants, including persons with albinism and their families living in the UK. Information was further obtained from a small-scale survey which was conducted of persons with albinism and their family members. There were 16 respondents of which 50% (N = 8) were persons with albinism and 50% (N = 8) were family members. Of the family members, most (N = 6) were the parents of a child with albinism. The survey was shared on the website of the Albinism Fellowship UK and promoted on social media from 6 - 24 April 2023.

Lastly, a roundtable discussion was convened by the UN Independent Expert on the enjoyment of rights by persons with albinism, in collaboration with Staffordshire University and attended by the UN expert, 6 persons with albinism, 2 family members, as well as representatives of charities and academics working in the area of albinism and disability. The roundtable was held at Chatham House in London on 9 June 2023.