31/63 Report of the Independent Expert on the enjoyment of human rights by persons with albinism
Document Type: Final Report
Date: 2016 Jan
Session: 31st Regular Session (2016 Feb)
Agenda Item:
Human Rights Council Thirty-first session
Agenda item 3
Promotion and protection of all human rights, civil,
political, economic, social and cultural rights,
including the right to development
Report of the Independent Expert on the enjoyment of human rights by persons with albinism
Note by the Secretariat
The Secretariat has the honour to transmit to the Human Rights Council the first
report of the Independent Expert on the enjoyment of human rights by persons with
albinism, Ikponwosa Ero, prepared pursuant to Council resolution 28/6. In the report, the
Independent Expert presents a number of reflections on the situation of the enjoyment of
human rights by persons with albinism as well as on her vision for her work as Independent
Expert, including how she intends to fulfill the requirements of her mandate and the issues
she wishes to address as a matter of priority.
Report of the Independent Expert on the enjoyment of human rights by persons with albinism
Contents
Page
I. Introduction ...................................................................................................................................... 3
II. Setting up the mandate ..................................................................................................................... 3
A. Mandate of the Independent Expert ......................................................................................... 3
B. Overarching considerations of the mandate ............................................................................. 4
C. Methods of work ...................................................................................................................... 4
III. Background information on albinism ............................................................................................... 5
IV. Areas of concern and priority issues ............................................................................................... 6
A. Witchcraft and related offences ............................................................................................... 6
B. Discrimination ......................................................................................................................... 9
C. Disability ................................................................................................................................. 10
D. Health....................................................................................................................................... 10
E. Women and children ................................................................................................................ 11
V. Independent Expert’s vision for the mandate ................................................................................... 12
A. Develop and strengthen specific measures to end and prevent attacks .................................... 12
B. Define applicable international legal frameworks ................................................................... 13
C. Strengthen concerted implementation efforts .......................................................................... 13
D. Increase awareness and understanding of the condition of persons with albinism .................. 15
VI. Conclusions ...................................................................................................................................... 15
I. Introduction
1. The present report is submitted by the Independent Expert on the enjoyment of
human rights by persons with albinism, Ikponwosa Ero, pursuant to Human Rights Council
resolution 28/6.
2. On 3 July 2015, the Human Rights Council appointed Ms. Ero of Nigeria as the first
mandate holder on the enjoyment of human rights by persons with albinism. She assumed
her duties on 1 August 2015. The Independent Expert would like to thank the Council for
the trust that it has placed in her with the important task of fulfilling this mandate as the first
mandate holder. She commits herself to do so in an impartial and constructive manner and
in accordance with the requirements set forth by the Council. She would also like to express
her gratitude to the numerous civil society organizations with which she has already
engaged and to affirm her strong commitment to her role as Independent Expert.
3. This is the Independent Expert’s first report to the Human Rights Council. In it, she
reflects on the degree to which persons with albinism are able to enjoy their human rights,
presents her vision for the mandate and identifies matters of priority.
II. Setting up the mandate
A. Mandate of the Independent Expert
4. The mandate of the Independent Expert on the enjoyment of human rights by
persons with albinism was established by the Human Rights Council on 26 March 2015 in
resolution 28/6, as follows: to engage in dialogue and consult with States and other relevant
stakeholders; to identify, exchange and promote good practices relating to the realization of
the rights of persons with albinism and their participation as equal members of society; to
promote and report on developments, challenges and obstacles relating to the realization of
the enjoyment of human rights by persons with albinism and to make recommendations in
that regard to Council; to gather, request, receive and exchange information and
communications from and with States and other relevant sources; to conduct, facilitate and
support the provision of advisory services, technical assistance, capacity-building and
international cooperation in support of national efforts; to raise awareness on the rights of
persons with albinism and to combat stereotypes, prejudices and harmful traditional
practices and beliefs; to promote awareness of the positive contributions of persons with
albinism and to inform them about their rights; and to report to the Human Rights Council,
starting at its thirty-first session, and to the General Assembly.
5. In discharging the mandate, the Independent Expert will be guided by Council
resolution 23/13 on attacks and discrimination against persons with albinism and resolution
24/33 on technical cooperation for the prevention of attacks against persons with albinism.
The Independent Expert will also base her work on the preliminary report of the Office of
the United Nations High Commissioner for Human Rights (OHCHR) on persons with
albinism (A/HRC/24/57), submitted to the Council at its twenty-fourth session, and the
report of the Human Rights Council Advisory Committee on the study on the situation of
human rights of persons living with albinism (A/HRC/28/75), submitted to the Council at its
twenty-eighth session. At the regional level, the African Commission on Human and
Peoples’ Rights resolution 263 on the prevention of attacks and discrimination against
persons with albinism will also be at the core of the work of the Independent Expert. In its
resolution 69/170, the General Assembly proclaimed 13 June as International Albinism
Awareness Day.
B. Overarching considerations of the mandate
6. The Independent Expert will be guided by the following considerations in all aspects
of her work:
(a) Participation: the Independent Expert intends to carry out her work in a
participatory, consultative and open manner, actively involving persons with albinism and
organizations working on albinism;
(b) Constructive dialogue: the Independent Expert will implement her mandate
in a spirit of cooperation, through earnest and constructive dialogue, focusing on requests
for technical assistance and on the promotion of best practices;
(c) Inclusiveness: the Independent Expert will address the obstacles, such as
attacks and discrimination, to the enjoyment of all human rights by persons with albinism,
including the right to the highest attainable standard of physical and mental health and the
right to education, as well as the barriers to the enjoyment of their human rights linked to
disability;
(d) Global perspective: the Independent Expert will work in an inclusive manner
to address globally barriers to the enjoyment of human rights by persons with albinism,
while recognizing that the obstacles to the realization of such rights may differ from region
to region;
(e) Gender perspective: women with albinism and mothers of persons with
albinism have been particularly affected by discrimination. In accordance with her mandate,
the Independent Expert will pay specific attention to the challenges and needs of women
and girls in addressing the multiple, intersecting and aggravated forms of discrimination
faced by them.
C. Methods of work
7. In accordance with her mandate, the Independent Expert intends to carry out her
work within the areas usually targeted by special procedure mandate holders, including the
promotion of good practices, country assessments, communications regarding alleged
human rights violations, awareness-raising activities and thematic studies. In doing so, she
will endeavour to work closely with other mandate holders, including through joint
communications, close cooperation with regard to research on the situation of persons with
albinism, as well as coordination of consultative meetings and events. She will also
endeavour to provide technical assistance and concrete recommendations to facilitate legal
reforms and policymaking through the compilation and promotion of best practices for both
short- and long-term responses to the human rights issues faced by persons with albinism.
To do so, the Independent Expert will, funding permitting, conduct in-depth stakeholder
consultations.
8. In the implementation of her mandate, the Independent Expert will seek to work in
close cooperation with other mandate holders, in particular the Special Rapporteur on the
rights of persons with disabilities, with the office of the Special Representative of the
Secretary-General on Violence against Children, with regional mechanisms, such as the
African Commission on Human and People’s Rights, with civil society, including
organizations of persons with albinism throughout the world, and with all relevant United
Nations agencies.
9. Facilitating cooperation and building bridges at the local, regional and national
levels will also be a focus of the Independent Expert, as projects and initiatives too often
take place in isolation. Best practices and experiences in tackling discrimination against
persons with albinism or facilitating access to health, for example, would benefit from a
coordinated exchange at both national and international levels. In addition, certain States in
a region share similar challenges and obstacles with regard to attacks against persons with
albinism, for example, and although efforts have been made and steps taken in the countries
most affected, there has been little international cooperation and discussion to share
experiences, both positive and negative, in addressing attacks against persons with albinism.
The Independent Expert will therefore endeavour to provide platforms to coordinate efforts
in order to efficiently and sustainably address challenges in that area.
10. A crucial element of the Independent Expert’s mandate in the coming year will be
assessing the current situation of persons with albinism and identifying best practices
through country visits. During her mandate, the Independent Expert would like to undertake
country visits in areas most affected by human rights violations of persons with albinism,
namely sub-Saharan Africa. She hopes that all Governments will welcome such visits and
envisages that the outcome of country visits, including the best practices gathered, would
not only feed into thematic studies, but also practically inform her compilation of best
practices.
11. The Independent Expert will focus on enhancing the visibility of the mandate and on
strengthening its cooperation with civil society organizations.
III. Background information on albinism
12. Albinism is a rare, non-contagious, genetically inherited condition that affects
people worldwide regardless of ethnicity or gender. It results from a significant deficit in the
production of melanin and is characterized by the partial or complete absence of pigment in
the skin, hair and eyes. In order for a person to be affected by albinism, both parents must
carry the gene and, in that case, there is a 25 per cent chance that a child will be born with
albinism at each pregnancy. The proportion of persons affected by albinism in the world
differs from region to region. For example, in North America and Europe, it is estimated
that 1 in 17,000 to 20,000 people are affected by the condition,1 while in sub-Saharan
Africa, 1 in 5,000 to 15,000 could be affected, with specific countries having a much higher
tendency, including estimated rates of 1 in 1,400,2 and about 1 in 20 persons in the general
population carrying the gene for albinism. Other studies suggest that in specific groups in
Panama or in the Pacific region, the rate of people affected could be as high as 1 in 70 to 1
in 125.
13. There are different types of albinism. The most common and visible type is
oculocutaneous albinism (OCA), which affects the skin, the hair and the eyes. Within this
type, there are subtypes, which reflect varying degrees of melanin pigment deficiency in an
individual. The main subtypes of OCA are tyrosinase negative albinism (OCA1) and
tyrosinase positive albinism (OCA2). In OCA1, there is little or no production of melanin
and it is often characterized by white hair and opaque or transparent irises. In the more
prevalent, particularly in African countries, OCA2, some melanin is produced and it is
characterized by yellow-blonde or sandy-coloured hair and grey to light brown irises. A less
common form of albinism is ocular albinism which affects the eyes alone, while albinism
1 National Organization for Albinism and Hypopigmentation, “What is Albinism?” Information
bulletin, available at www.albinism.org/site/c.flKYIdOUIhJ4H/b.9253761/k.24EE/
Information_Bulletin__What_is_Albinism.htm; see also A/HRC/24/57, para. 14.
2 In 2005, World Health Organization (WHO) carried out a pilot survey on albinism in African
countries, results were published in 2006; see also A/HRC/24/57, para. 14.
accompanied by Hermansky-Pudlak syndrome is another less common form, which is
characterized by bleeding disorders, bowel (colitis) and lung diseases.
IV. Areas of concern and priority issues
14. Persons with albinism face discrimination and barriers that restrict their participation
in society on an equal basis with others every day. Due to those many challenges, persons
with albinism throughout the world are unable to enjoy the full range of human rights and
the same standards of equality, rights and dignity as others. While some of those challenges
are global, others have predominantly been identified in certain regions. There are legal and
policy foundations to most of the human rights violations faced by persons with albinism,
however, they have not yet been consolidated and there are no specific instruments or
guidelines on the enjoyment of human rights by persons with albinism — a gap that the
Independent Expert wishes to address in consultation with stakeholders.
15. As an initial step, the mandate holder will outline, in broad strokes, some of the
obstacles with which persons with albinism are confronted. The obstacles identified
constitute the main areas of concern and priorities of the mandate holder and include human
rights violations such as attacks, desecration of graves, trafficking of body parts,
displacement, discrimination against persons with albinism, as well as human rights
violations based on disabilities, challenges in the right to the highest attainable standard of
health and the right to education. The Independent Expert would also like to draw attention
to the particularly concerning situation of women and children with albinism.
A. Witchcraft and related offences
16. It has been widely reported and documented that persons with albinism are hunted
and physically attacked due to prevailing myths such as the misbelief that their body parts,
when used in witchcraft rituals and potions or amulets, will induce wealth, good luck and
political success. Other dangerous myths that facilitate the perpetration of attacks are those
linked to perceptions of their appearance, including misbeliefs and myths that persons with
albinism are not human beings, but ghosts, that they are subhuman and that they do not die,
but disappear. An increase of those attacks, referred to as “ritual attacks”, has been reported
by civil society during periods of political elections.
17. Attacks against persons with albinism and corollary issues of displacement and
trafficking in body parts violate the right to life, the right to security of person and the
prohibition of torture and ill-treatment, as enshrined in various international human rights
treaties. As reported by OHCHR, whether any particular ritual killing or attack against
persons with albinism is attributable to a State agent needs to be determined on a case-by-
case basis. Nevertheless, the State violates its obligation to ensure the right to life and the
prohibition of torture and ill-treatment by failing to take appropriate measures to prevent,
investigate, prosecute, punish or redress.3
18. In response to the issue, several treaty bodies have called for immediate action to
end the attacks. These include the Human Rights Committee,4 which recommended that
affected States strengthen efforts to halt attacks on the physical integrity of persons with
albinism, ensure the conduct of timely investigations and strengthen awareness-raising
3 See A/HRC/24/57, para. 31.
4 See, for example, CCPR/C/TZA/CO/4, para. 15; CCPR/C/BDI/CO/2, para. 9; and
CCPR/C/KEN/CO/3, para. 17.
campaigns. Similarly, the Committee on the Rights of the Child,5 the Committee on the
Elimination of Discrimination against Women,6 the Committee on the Right of Persons with
Disabilities7 and the Committee on Economic, Social and Cultural Rights,8 in reiterating the
right to life and non-discrimination, have called for immediate action to end such attacks. In
their resolutions, the Human Rights Council and the African Commission on Human and
Peoples’ Rights have also called for immediate action to stop attacks and discrimination
against persons with albinism.9
19. The Independent Expert intends to address the impact of witchcraft on the human
rights of persons with albinism as a harmful traditional practice and as one of the root causes
of ritual attacks. This will require careful understanding, definition and delineation of the
practice, the form it takes and the effects it has on persons with albinism.
1. Attacks
20. The appearance that ensues in albinism, in particular the lack of melanin in the skin,
eyes and hair, exposes tens of thousands of persons to stigma and discrimination across the
world. It is reported that, in Africa, attacks directed at persons with albinism are usually
carried out with machetes, resulting in severe mutilation or death. In most cases, the persons
attacked are dismembered; body parts such as fingers, arms, legs, eyes, genitals, skin, bones,
the head and hair have been severed from the body and taken. In several of those cases,
body parts have been hacked off while the person was alive. Reportedly, there is a corollary
witchcraft belief that it is preferable to harvest body parts from live victims because screams
increase the potency of the potion for which the parts are used.10 Possible human sacrifices
of persons with albinism have also been reported, including through immolation.
21. Since 2007, civil society organizations have reported hundreds of attacks against
persons with albinism in 25 countries. All of those physical attacks appear to be, at least in
part, related to the erroneous beliefs and myths linked to witchcraft practices.
22. The large number of cases reported by civil society no doubt represents a fraction of
the attacks against persons with albinism. The secrecy that often surrounds ritual attacks, the
complicity of family members in certain cases, the difficulty in accessing data owing to the
fact that most attacks occur in rural environments, as well as the low response to such
attacks may serve as hindrances to the reporting and visibility of attacks. Moreover,
discrimination against persons with albinism and significant impunity may also have an
impact on the reporting of such cases. Impunity was also highlighted by OHCHR, which
had received information that persons with albinism faced significant difficulties in having
their cases brought to justice.11 In a similar vein, the Special Representative of the Secretary-
General on Violence against Children has stated that the human rights violations committed
against children with albinism are of the highest severity. Discrimination, harassment and
violence, including cases of mutilation and murder, are often met with passivity and rarely
reported, as they often take place in remote areas and because such children are perceived as
5 See, for example, CRC/C/BDI/CO/2, paras. 30 and 34; CRC/C/TZA/CO/3-5, paras. 25-26 and 29-31;
CRC/C/OPSC/TZA/CO/1, para. 20; and CRC/C/GNB/CO/2-4, paras. 28-29.
6 See, for example,CEDAW/C/COD/CO/6-7, paras. 35 (c) and 36 (b); CEDAW/C/TZA/CO/6, paras.
45-46; CEDAW/C/SWZ/CO/1-2, paras. 22-23; and CEDAW/C/MWI/Q/7, paras. 20-21 and 44-45.
7 See, for example, CRPD/C/KEN/CO/1, paras. 19-20.
8 See, for example, E/C.12/COD/CO/4, paras. 19 and 28; and E/C.12/TZA/CO/1-3, para. 5.
9 See Human Rights Council resolutions 23/13 and 24/33; and African Commission on Human and
Peoples’ Rights resolution 263.
10 Simon Fellows, Trafficking Body Parts in Mozambique and South Africa (Mozambique, Human
Rights League, 2010).
11 See A/HRC/24/57, para. 53.
bringing bad luck and being a source of shame to even their own families and communities.
Mutilation and murders of children with albinism are mostly met by social silence and
indifference.12
23. Challenges to ending impunity may include lack of confidence in the law
enforcement or judicial system owing to fear of reprisals or stigmatization, ignorance of
their rights or lack of financial resources. Barriers also subsist at the investigations level,
where there might be difficulties in finding witnesses owing, inter alia, to stigmatization and
discrimination, fear of reprisals (including through witchcraft), lack of comprehensive
witness protection programmes, involvement of family members and lack of financial
resources. Barriers subsisting at the prosecution stage may include restrictions in the
implementation of the right to a fair trial and due process, such as the lack of adequate legal
representation. In addition, even when perpetrators are successfully prosecuted, it has been
reported that too often the sentence pronounced is not proportionate to the gravity of the
crime committed. Such outcomes can undermine the trust of victims in the justice system
and lead to a reduction in the number of cases reported. Other barriers to ending impunity
can be found at the policy and legislative levels, including the need for a clear and adequate
legal framework regarding albinism that covers attacks and the impact of witchcraft on the
human rights of persons with albinism.
2. Trafficking in body parts
24. It has been reported that there is a market for body parts of persons with albinism.
The body parts are reportedly sold both locally and across borders. The prices of body parts
reportedly range from $2,000 for a limb to $75,000 for a “complete set” or a corpse.13 Civil
society reports indicate that, motivated by those prices, family members and communities
have sold, or attempted to sell, persons with albinism, thereby fuelling the supply side of
this macabre trade. The prices also indicate the involvement of wealthy individuals as they
stand in sharp contrast to the average annual income per capita reported in the affected
regions. Given the underground nature of this trade, further study is needed to assess its
scope and extent and, on that basis, to identify effective measures.
25. Recent cases of body-parts trafficking that were brought to the attention of the
Independent Expert by civil society include cases where law enforcement agencies acted
promptly and were able to prevent the sale and save the persons with albinism involved. In a
few other cases, however, the body parts were harvested and have still not been recovered.
3. Related human rights violations
26. Attacks against persons with albinism in some areas have caused hundreds of
persons, particularly women and children, to flee their homes and seek refuge in temporary
shelters. This has been the case in remote border areas or in areas particularly affected by
attacks.
27. In addition, as a protection measure, children have been transported to shelters,
including police stations, schools or centres built for other needs, such as for people living
with leprosy. Most of these shelters were neither designed nor prepared for an influx of
persons with albinism, nor are they equipped to address the special needs of persons with
albinism. Reports show that inhabitants with albinism are exposed to early skin cancer risk
and various forms of abuse. Furthermore, as pointed out by the Human Rights Council
12 Ibid., para. 54.
13 See International Federation of the Red Cross and Red Crescent Societies, Through albino eyes: The
plight of albino people in Africa’s Great Lakes region and a Red Cross response, Advocacy report
(2009), available at www.ifrc.org/Global/Publications/general/177800-Albinos-Report-EN.pdf.
Advisory Committee in its study on the situation of human rights of persons living with
albinism, an assessment by the OHCHR field presence of the situation of displaced persons
with albinism in Burundi showed the precarious security situation of some of them and the
negative impact of the measure on the right to an adequate standard of living.14
28. According to information received, the erroneous beliefs and myths, including
certain witchcraft practices, have led to the desecration of graves of persons with albinism.
Such desecrations have been reported in at least seven countries in Africa. In the cases
reported, graves of persons with albinism were open and body parts or bones were stolen.
B. Discrimination
29. One of the main barriers to the implementation of the human rights of persons with
albinism is discrimination and stigmatization, both of which are historically and culturally
entrenched. Information on discrimination against persons with albinism has been received
from around the world. However, the expression and severity of the discrimination faced by
persons with albinism vary from region to region.
30. In so-called Western countries, persons with albinism face the effects of entrenched
misconceptions and misunderstandings of the condition. Discrimination through mockery or
bullying of school-age children owing to their appearance has been reported. Given the
relative rarity of albinism, popular culture, such as movies (a majority of which depict
albinism negatively), are often the sole source of information on the condition for the
majority of the population, fuelling widespread misconceptions and misunderstanding of the
condition.
31. Bullying of school-age children owing to their appearance has also been reported in
other regions of the world, such as in sub-Saharan Africa. However, in that region,
discrimination takes more extreme forms, including infanticide, physical threats and attacks.
Lack of information on the condition facilitates the spread of myths to explain albinism,
most of which are erroneous and in some cases dangerous, including myths that people with
albinism are ghosts or the result of conception during menstruation or the result of a general
curse. Life in that context could be described as a cycle of discrimination. Civil society has
reported that ostracism of entire families owing to the strong negative connotation of the
birth of a child with albinism, perceived as a source of misfortune in certain regions,
contributes to infanticide and abandonment of children. Where there are no systematic birth
and death records, identification and reporting of such cases are even more difficult. In some
regions, children with albinism drop out of school for reasons linked to stigma and because
no reasonable accommodation is made for the vision impairment often resulting from
albinism. A lack of education combined with widespread absence of health information
often lead persons with albinism to employment outdoors with no protection from the sun,
which exposes them to a high risk of skin cancer.
32. In the Pacific Islands, it has been reported that people with albinism suffer
comparable human rights-related issues with regard to lack of access to information and
support for health conditions, vision problems and cultural isolation. There is little verified
information on the human rights situation of persons with albinism in Asia, South America
and the Caribbean. The Human Rights Council Advisory Committee stressed that the
absence of information on albinism in other regions should not be interpreted to mean that
there is no problem of discrimination, stigmatization and violence in those regions. Lack of
14 See A/HRC/28/75, para. 24.
sufficient knowledge remains a significant barrier to tackling discrimination, stigmatization
and violence.15
33. Discrimination, stigma and bullying of persons with albinism owing to their
appearance have been reported in all regions of the world, to varying degrees. Such
discrimination has been described as discrimination based on skin tone or shade, including
within the same ethnic group. While discrimination based on skin colour is an everyday
reality for most persons with albinism, discourse on discrimination based on colour has
rarely been applied to albinism. This is for various reasons such as the lack of visibility of
albinism, until very recently, the lack of understanding of what persons with albinism
experience and lastly, but perhaps most significantly, strong historical ties of racial
discrimination discourse to race or ethnicity. Yet, there is potential to address albinism
under the International Convention on the Elimination of All Forms of Racial
Discrimination, as the governing concept is not “race” but “racial discrimination”, which
may be based on any of five “grounds”: race, colour, descent, national origin and ethnic
origin.16
C. Disability
34. The term “persons with disabilities” under the Convention on the Rights of Persons
with Disabilities has a broad scope and includes any person with a long-term physical,
mental, intellectual or sensory impairment, which, in interaction with various barriers, may
hinder his or her full and effective participation in society on an equal basis with others.
35. Lack of melanin in the eyes results in high sensitivity to bright light and significant
vision impairment, with the level of severity varying from one person to another. This vision
impairment often cannot be completely corrected. In some countries, this has led to the
categorization of persons with albinism as legally blind, which enables them to access the
national legal frameworks in the field of the rights of persons with disabilities, including
measures related to access to health and education.
36. Legal frameworks for the enjoyment of human rights by persons with disabilities,
including the Convention, could address issues faced by persons with albinism on the basis
of their vision impairment. The Convention in particular identifies areas where adaptations
have to be made so that persons with disabilities can fully enjoy their human rights,
including access to education, employment, information and health care. Furthermore, the
Convention has established as principles respect for inherent dignity, equality of
opportunity, full and effective participation and inclusion in society and non-discrimination.
On that basis, urgent measures could be implemented to address pressing issues relating to
the visual impairment of persons with albinism. However, those measures would need to be
combined with other measures designed to address other forms of discrimination faced by
persons with albinism as well as to address attacks and to ensure access to health care.
D. Health
37. One of the most serious health implications of albinism is the vulnerability to skin
cancer. Skin cancer remains a life-threatening condition for most persons with albinism.
Statistics on the issue are mostly from Africa and they indicate a worrying trend. Some
15 See A/HRC/28/75, para. 43.
16 See OHCHR and International Organization of la Francophonie, “Expert meeting on persons with
albinism: violence, discrimination and way forward”, outcome report, 24 September 2014, para. 33.
reports indicate that most persons with albinism die from skin cancer between the ages of 30
and 40 years.17 A recent sampling of 77 persons with albinism from different African
countries seems to support the reported trends. Of the 77, 43 had 239 pre-cancerous lesions
and 3 required immediate surgical attention.18 This sample indicates the scale of the problem
in the region and the need for immediate attention.
38. Studies often link the prevalence of skin cancer to factors such as the lack of basic
understanding of albinism, particularly by persons with albinism and their families. For
example, it is not uncommon for parents to put a newborn with albinism out in the sun for
hours. Displaced persons with albinism are exposed to a heightened risk of skin cancer as
they are mostly outside of their usual environment and have limited means to address their
health needs. Also at particular risk of developing skin cancer are persons with albinism
who work outdoors, such as farmers or traders. Such outdoor occupations also emphasize
the link between the risk of contracting skin cancer and poverty.
39. The general lack awareness of the link between albinism and skin cancer means that
the prevalence of the condition has led to the belief that pre-cancerous and cancerous lesions
on a person with albinism is a necessary part of albinism. The appearance of such lesions on
persons with albinism adds more stigma to an already stigmatized appearance and exposes
person with albinism to further discrimination, particularly when seeking employment.
40. Yet, there are several effective ways to prevent skin cancer, including the use of sun
protection cream, which is topically applied, or wearing sun-protective clothing with long
sleeves, wide-brimmed hats and sunglasses. Given the accessibility and effectiveness of
protective clothing, skin cancer could be significantly prevented at little cost with the right
level of public education and early intervention programmes targeting persons with albinism
and their families.
E. Women and children
41. Women and children with albinism are particularly vulnerable as they are exposed to
intersecting and multiple forms of discrimination. In addition, children are particularly
targeted for ritual killings and women are sometimes victims of sexual violence.19 The
Human Rights Council Advisory Committee also stressed the specific challenges faced by
women and children with albinism in that regard.20
42. Children with albinism are often particular targets of attacks due to the witchcraft-
based belief that the innocence of a victim from whom body parts are taken increases the
potency of the potion for which the body parts are used. Cases reported by civil society
indicate that children constitute a large proportion of victims of ritual attacks.
43. As noted by the Special Representative of the Secretary-General on Violence against
Children, children with albinism are at high risk of abandonment, stigmatization and
17 See, for example, Andres E. Cruz-Inigo, Barry Ladizinsky and Aisha Seth, “Albinism in Africa:
stigma, slaughter and awareness campaigns”, Dermatologic Clinics, vol. 29, No. 1 (January 2011),
pp. 79-87 (citing J. Luande, Claudia I. Henschke and Nassoro Mohammed, “The Tanzanian human
albino skin. Natural history”, Cancer, vol. 55, Issue 8 (15 April 1985) pp. 1823-1828).
18 Indicative sampling of 77 leaders and activists with albinism, Clinic Data Report, unpublished,
“Standing Voice”, Pan African Albinism Conference, held in Dar-es-Salaam, United Republic of
Tanzania,19-22 November 2015.
19 See A/HRC/24/57, para. 74.
20 See A/HRC/28/75, paras. 35-38.
marginalization as a result of their appearance, and due to disability factors associated with
their condition, such as impaired eyesight and sensitive skin.21
44. Discrimination against women takes various forms. Women with albinism are
reportedly victims of targeted acts of sexual violence spurred by the myth and misbelief that
sexual intercourse with a woman with albinism can cure HIV/AIDS. Furthermore, women
who give birth to a child with albinism may face ostracism and discrimination. They are also
exposed to rejection by their husbands or partners, accused of adultery or infidelity and
blamed for giving birth to a child who is generally seen as a curse or a bad omen. The
rejection of mothers of children with albinism exposes them to poverty and isolation and
increases the vulnerability to attacks of both mother and child with albinism.
V. Independent Expert’s vision for the mandate
A. Develop and strengthen specific measures to end and prevent attacks
45. The Independent Expert intends to identify and consolidate the measures to end and
prevent attacks to persons with albinism in consultation with States, civil society,
international and regional bodies and agencies as well as other stakeholders. The specific
measures identified will be based on those already identified, particularly those adopted by
the African Commission on Human and Peoples’ Rights, namely:22
(a) Effective protection of persons with albinism and members of their families;
(b) Conduct of impartial, speedy and effective investigations into attacks against
persons with albinism;
(c) Prosecution of perpetrators of attacks against persons with albinism;
(d) Ensuring that victims and members of their families have access to
appropriate remedies;
(e) Increased education and public awareness-raising activities;
(f) Inclusion of information in reports submitted by States parties to the African
Commission on Human and Peoples’ Rights under article 62 of the African Charter on
Human and Peoples’ Rights, on the situation of persons with albinism, including good
practices in protecting and promoting the rights of persons with albinism;
(g) Promotion, in collaboration with relevant regional and international
organizations, bilateral, regional and international initiatives aimed at protecting persons
with albinism.
46. The Independent Expert is of the view that specific measures to end attacks against
persons with albinism should include immediate investigation of allegations and prosecution
of alleged perpetrators, legal representation and adequate protection for victims and
witnesses and sensitization of the judiciary and law enforcement officers on the issue.
Furthermore, protection measures for persons with albinism should be adopted and
implemented in their communities. Victims of attacks should be provided with the
appropriate remedy and redress, not only legal, but also social, psychological and medical.
The Independent Expert will also seek the adoption of measures to prevent the trafficking in
body parts, as well as specific measures for improving conditions at temporary shelters for
21 See A/69/264, para. 34.
22 African Commission on Human and Peoples’ Rights resolution 263.
displaced persons with albinism and the execution of safe strategies for reintegrating them
into their homes and communities. In that regard, she encourages international and regional
cooperation.
B. Define applicable international legal frameworks
47. The Independent Expert considers it important to identify the applicable human
rights legal framework and the key international human rights instruments that could both
comprehensively and effectively address the human rights-related issues faced by persons
with albinism in a sustainable way.
48. The Independent Expert will pay particular attention to the practices and legal
approaches of countries to ensure the full enjoyment of human rights by persons with
albinism. She envisages wide consultation particularly among persons with albinism on their
views on discrimination. She will follow with interest debates on the ways to approach such
issues at the national, regional and international levels. The Independent Expert looks
forward to working closely with experts at the national, regional and international levels on
related issues such as racial discrimination, disabilities, trafficking, health, minority issues,
violence against women and children, cultural rights, harmful traditional practices,
extrajudicial and summary executions and torture, most of whom have already contributed
to the debate surrounding the enjoyment of human rights by persons with albinism.23
49. Such current multisectoral debates highlight the fact that the human rights
challenges associated with albinism are multilayered and could be addressed by various
human rights mechanisms. They also show the need for in-depth reflection with
stakeholders to inform policymaking and better inform the ongoing work of the Independent
Expert in fulfilling the mandate.
C. Strengthen concerted implementation efforts
1. Regional and international agenda
50. The Independent Expert intends to build on the work already done to address the
enjoyment of human rights by persons with albinism at the international level, including the
work of the Human Rights Council and of the African Commission on Human and Peoples’
Rights through the provision of technical advice.
51. The findings of the Human Rights Council Advisory Committee will also guide the
Independent Expert in her work. In its report to the Human Rights Council, the Advisory
Committee stressed the need for increased engagement of international and regional
mechanisms with the issue of persons with albinism and lamented that efforts, however,
continue to be fragmented and only partially address the complexity of the human rights
challenges that persons with albinism face. A more sustainable response, to bridge
protection gaps and to ensure accountability for human rights violations committed against
persons with albinism, is required.24
52. The Independent Expert looks forward to working closely with all special procedure
mandate holders so as to harmonize efforts in addressing the many obstacles to the full
23 See, for example, OHCHR, “Not ghosts, but human beings … persons with albinism”, press release,
4 May 2013, available at www.ohchr.org/en/NewsEvents/Pages/DisplayNews.aspx?NewsID=13294
&LangID=E.
24 See A/HRC/28/75, para. 61.
enjoyment of human rights by persons with albinism. She sees close connections between
her mandate and those of other special procedures, such as the rights of persons with
disabilities; the right to education; the right of everyone to the enjoyment of the highest
attainable standard of physical and mental health; the issue of discrimination against women
in law and in practice; violence against women; contemporary forms of racism, racial
discrimination, xenophobia and related intolerance; and cultural rights. The Independent
Expert also intends to work in close cooperation with the mandate holders on extrajudicial,
summary or arbitrary executions; torture and other cruel, inhuman or degrading treatment or
punishment; the sale of children, child prostitution and child pornography; and trafficking in
persons, especially women and children.
53. The Independent Expert attaches great importance to the work of the United Nations
human rights treaty bodies, many of which have addressed the obstacles faced by persons
with albinism, and wishes to extend her full support and availability to cooperate with them
on this topic.
54. The Independent Expert will also liaise closely with United Nations agencies, funds
and programmes, regarding their work on persons with albinism. She wishes to stress the
important role played by regional organizations, such as the African Committee of Experts
on the Rights and Welfare of the Child, and looks forward to working closely with them.
55. In addition, the Independent Expert believes that States affected by attacks against
persons with albinism may share similar challenges and obstacles, and notes that some have
adopted certain measures in an effort to address the issue. The Independent Expert intends to
encourage regional forums in order to exchange experiences, both positive and negatives,
foster regional dialogue and the sharing of best practices in this regard.
2. National agenda
56. The Independent Expert recognizes that a very important part of the mandate is to
support States in the development of their national efforts to advance the implementation of
the rights of persons with albinism.
57. Guided by her mandate to identify, exchange and promote good practices relating to
the realization of the rights of persons with albinism and their participation as equal
members of society, she will strive to identify effective measures to address discrimination
against persons with albinism at all levels, including with regard to access to health and
education. This collection of best practices would address the protection and promotion of
human rights of people with albinism and focus on issues beyond attacks, namely
discrimination and equality.
58. In order to identify best practices, the Independent Expert intends to hold broad
consultations with all stakeholders, including persons with albinism, civil society
organizations, Governments and other relevant bodies.
59. The Independent Expert will conduct country visits, at the invitation of
Governments, with the objective of learning about national realities and observing relevant
laws, policies and programmes. Such visits will be an opportunity for the Independent
Expert to identify best practices and areas for constructive dialogue with a view to
enhancing the enjoyment of human rights by persons with albinism.
60. Furthermore, the Independent Expert will give particular importance to her mandate
to conduct, facilitate and support the provision of advisory services, technical assistance,
capacity-building and international cooperation in support of national efforts for the
effective realization of the rights of persons with albinism and to prevent violence. She is
therefore particularly committed to fostering capacity-building of national stakeholders,
promoting exchanges on challenges and experiences and supporting efforts in translating
international norms into national legislation, policies, programmes and practices that are
effective and adapted to national circumstances.
D. Increase awareness and understanding of the condition of persons
with albinism
1. Awareness-raising
61. In line with her mandate, the Independent Expert will raise awareness on the rights
of persons with albinism in order to combat stereotypes, prejudices and harmful traditional
practices and beliefs that hinder their enjoyment of human rights and participation in society
on an equal basis with others. To that end, she will promote positive change in social
perceptions about persons with albinism through the dissemination of general knowledge
about and understanding of albinism in society at large, including from a scientific
perspective. Such awareness-raising will contribute to fighting myths and stereotypes about
persons with albinism, particularly those that fuel stigma, discrimination and attacks.
62. Recognizing the limited capacity of most civil society groups representing persons
with albinism, the Independent Expert wishes to work with them in order to increase their
knowledge of national and international avenues for addressing the obstacles faced by
persons with albinism in fully enjoying their human rights.
2. Research and data collection
63. Statistics and disaggregated data on albinism remain difficult to find, particularly in
areas were the worst human rights violations against persons with albinism occur. In order
to move towards policy changes, data collection, both qualitative and quantitative, and
comparative analyses are fundamental in order to fully understand the current situation of
persons with albinism.
64. In addition, the difficulty in accessing reliable data on cases of killings of and
attacks against persons with albinism also hinders efforts to fight those horrendous human
rights violations. Such data should include information on the number of cases registered,
investigations, prosecutions and administrative and judicial decisions.
65. Similarly, understanding the root causes of attacks against persons with albinism is
necessary in order to design strategies to address discrimination and attacks and to identify
adequate prevention measures. The secrecy surrounding witchcraft practices and the
underground nature of the market associated with the trafficking in body parts of persons
with albinism make it difficult to find evidence. Understanding the phenomena and their
implications would therefore be one of the priorities of the Independent Expert.
VI. Conclusions
66. The Independent Expert views the creation of the mandate as a significant
expression of the collective will to end attacks against persons with albinism and to
find their root causes in order to establish measures to prevent the occurrence of
attacks. As stated by the United Nations High Commissioner for Human Rights,
“There is no room in this 21st century for erroneous and harmful beliefs, or for
discrimination on any grounds. People with albinism are just as deserving of dignity as
every other human being.”25
67. To that end and for the realization of all the goals established by the Human
Rights Council in its resolution 26/8, by which it also established the mandate, she
looks forward to engaging in constructive and fruitful cooperation with a diverse range
of stakeholders in all regions, particularly and foremost in the areas affected by
attacks on persons with albinism.
68. The Independent Expert reiterates her desire to engage constructively with
affected States specifically to delve into the root causes of discrimination,
stigmatization and attacks on persons with albinism so as to establish preventive
measures. She also looks forward to various forms of in-depth engagement with
Members States of the United Nations and emphasizes the importance of an inclusive
and all-encompassing approach in the execution of her mandate. Finally, the
Independent Expert notes the central and complementary role of civil society,
particularly non-governmental organizations and academia, in providing her with
necessary information for building sustainable platforms for the enjoyment of human
rights by persons with albinism.
25 See “Statement by United Nations High Commissioner for Human Rights Zeid Ra'ad Al Hussein
ahead of the first-ever International Albinism Awareness Day, 13 June 2015”, available at
www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=16072&LangID=E.