A/HRC/40/62/Add.2
Anexo
[Inglés únicamente]
Report of the Independent Expert on the enjoyment of
human rights by persons with albinism on the round table on
human rights and albinism: seeking consensus and priorities
on advocacy and research
I. Introduction
1.
The round table on albinism and human rights, held on 20 and 21 September 2018 in
Geneva, was a side event at the thirty-ninth session of the Human Rights Council. It was
convened by the Independent Expert on the enjoyment of human rights by persons with
albinism, Ikponwosa Ero, together with a research team from Canada led by Sheryl ReimerKirkham and Barbara Astle.1
2.
The round table brought together scholars, policymakers and civil society
stakeholders with the aim of building consensus on priorities for research, advocacy and
policy on albinism, spiritual and cultural practices and human rights. The present report
summarizes the outcomes of the meeting, highlighting the need for interdisciplinary
research on human rights and albinism, the value of intersectoral partnerships, and the
imperative to promote inclusive discourses and systems. In the African context, accounting
for spiritual and cultural beliefs and practices is especially important, given their influence
on how albinism is viewed and their material consequences, whether for good, for example,
social support, or bad, for example, negative representatives and harmful practices. At all
levels, inclusion of persons with albinism is vital.
3.
Human rights and albinism. Worldwide, persons with the genetic condition of
albinism, in particular oculocutaneous albinism, lack melanin or pigmentation in their skin,
hair and eyes, and are vulnerable to vision impairment, often leading to disabilities, and
various health issues, most notably and most commonly skin cancer, which often leads to
premature death. Not only do persons with albinism face a variety of health risks, many
encounter discrimination and stigma on account of colourism. In parts of Africa, spiritual
and cultural practices, sometimes related to witchcraft, are expressed as fears about curses
and social ostracism.2 As detailed in the Independent Expert’s previous reports
(A/HRC/31/63 and A/HRC/37/57), the need to address human rights violations associated
with the mutilation and murder of persons with albinism for the extraction of their body
parts for use in witchcraft-related rituals and for sale on the black market is of the utmost
urgency.
4.
Spiritual and cultural practices in relation to the security of persons with
albinism. Although the condition of albinism is sometimes seen as a blessing or positive
1
2
2
The round table was convened as part of a research project entitled “The welfare and security of
persons with albinism: developing a research-policy network to address the interplay of spiritual,
cultural practices and human rights” (2017–2019). The host research team is composed of Sheryl
Reimer-Kirkham, Barbara Astle, Emma Strobell (Trinity Western University, Canada), Lori Beaman
(University of Ottawa), Wisdom Tettey (University of Toronto, Canada), Bonny Ibhawoh (McMaster
University, Canada) and Kristi Panchuk (University of British Columbia, Canada). The collaborators
were Duncan Dixon and Rick Sawatzky (Trinity Western University). Funding was provided by the
Social Sciences and Humanities Research Council of Canada and the Under the Same Sun Fund.
Awoniyi Babafemi Adeyanju, Omisakin Folorunso Dipo and Alao Mose Taiye, “Health and
psychosocial complaints of elderly albinos in Ondo State, Nigeria”, Indian Journal of Gerontology,
vol. 29, No. 3 (2015), pp. 364–381; Cora Butler-Jones, “The impact of help-seeking behavior among
people with albinism in Tanzania”, PhD dissertation, The Chicago School of Professional
Psychology, 2013.
GE.19-01100