A/HRC/28/75
OHCHR/Opération des Nations Unies en Côte d’Ivoire (ONUCI); OHCHR/United Nations
Integrated Peace Building Office in the Central African Republic (BINUCA) (relating to
Burundi); the Subcommittee on Prevention of Torture and other Cruel, Inhuman or
Degrading Treatment or Punishment; and the Special Rapporteur on extrajudicial, summary
or arbitrary executions.
6.
Building on the facts and findings contained in the OHCHR report, the present study
first provides an overview of the various obstacles faced by persons with albinism to the
full enjoyment of their human rights, and includes the type and severity of the human rights
violations involved. Second, it summarizes actions taken at the international level and by
OHCHR in response to the issue. The third and final part recommends further initiatives for
addressing some of the key problems identified in the first part.
7.
On 24 September 2014, the Rapporteur of the Advisory Committee’s drafting group
participated in an expert meeting on albinism organized by OHCHR in collaboration with
the Organisation Internationale de la Francophonie. The meeting brought together experts
from international and regional human rights mechanisms and participants from civil
society. It was an opportunity to hear the testimonies of persons with albinism and to listen
to their proposals on the way forward at the domestic, regional and international levels. The
present study has benefited greatly from the expert meeting.
II. Albinism, special needs and human rights challenges
A.
Albinism and special needs
8.
Albinism is a rare, non-contagious, genetically inherited difference present at birth.
In almost all types of albinism, both parents must carry the gene for it to be passed on, even
if they do not have albinism themselves. The condition is found in both sexes regardless of
ethnicity and in all countries of the world. Albinism results in a lack of pigmentation
(melanin) in the hair, skin and eyes, causing vulnerability to the sun and bright light. As a
result, almost all people with albinism are visually impaired and are prone to developing
skin cancer. There is no cure for the absence of melanin that is central to albinism.5
9.
While numbers vary, it is estimated that in North America and Europe 1 in every
17,000 to 20,000 people have some form of albinism. The condition is much more
prevalent in sub-Saharan Africa, with estimates of 1 in 1,400 people being affected in
Tanzania6 and prevalence as high as 1 in 1,000 reported for select populations in Zimbabwe
and for other specific ethnic groups in Southern Africa.7
10.
Persons with albinism have special needs. An advocacy report of the International
Federation of the Red Cross and Red Crescent Societies (IFRC) identified those needs as
follows:
(a)
5
6
7
4
Security;
The definition of albinism comes from A/HRC/24/57, para. 10.
Under the Same Sun, “Frequency of Albinism/Rates of Occurrence: North America, Europe, Africa
and Tanzania”; see also, Under the Same Sun, available from
http://www.underthesamesun.com/sites/default/files/Frequency%20of%20Albinism.pdf; and
“Children with Albinism & the Right to Health, summary report on Tanzania with implication for
other parts of sub-Saharan Africa” (2012), p. 2, available from
http://www.ohchr.org/Documents/Issues/Children/Study/RightHealth/UndertheSameSun.pdf.
World Health Organization, Epidemiologic data on albinism from a public survey in African
countries, 2006.
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