Publications

List of Research Resources

Our list of research and resources includes sections on society, human rights, identity, education, law, demography, genetics, medicine, healthcare, environment and biology.

 

Primary focus : Society

 

Albinism: Awareness, attitudes and level of albinos predicament in Sukumaland, Tanzania                   

Masanja, Methusela M; Mvena, Zebedayo S K;   Kayunze, Kim A               

A detailed empirical study of the awareness about and attitudes towards albinism in the Sukumaland region of Tanzania. The author uses the data to associate age, religion, and levels of education with the probability of various attitudes about and knowledge of albinism. The author concludes by suggesting that lack of education is the main factor that needs to be addressed.

Journal article 2014

http://publicationslist.org/data/ajase/ref-56/AJASE%209.2.pdf

 

Advocacy for minorities in Africa: Issues and lessons in advancing the rights of albinos in Tanzania and Osus in Nigeria                  

Fayoyin, Adebayo; Ihebuzor, Noel                      

A study of the efficacy of advocacy as a method for bringing about social change for minority groups. The situation of people with albinism in Tanzania is one case study used. The various forms of advocacy and protest undertaken by and on behalf of people with albinism are described and evaluated.

Journal article 2014 (Society and human rights)

http://apjor.com/downloads/1010201415.pdf

 

The science and mysticism of albinism- #GeneOTW with OCA     

Lau, Melissa                            

A brief overview of albinism in Africa- its genetic basis, and the profit-motivated attacks on people with the condition.

Website article/Blog 2014 (Society and Genetics)

http://sulab.org/2014/09/the-science-and-mysticism-of-albinism-geneotw-with-oca2/          

 

Albinism: The intersection between health, melanin, and vision 

Okolo, Sophie                         

An overview description of the social and health-related challenges faced by people with albinism in Africa. The author provides some information on relevant organisations, and notes the need for more medical resources and care to be made available.

Website article/ Blog 2014 (Society and Healthcare)

http://globalhealthafrica.org/2014/05/10/albinism-the-intersection-between-health-melanin-and-vision/

 

The right to be white: Fighting the persecution of albinos in Tanzania (Starts on page 62 of “The Expositor”)

Winchester, Maddie             

A description of the beliefs and discrimination faced by people with albinism in Tanzania, and the profit-motivated attacks that threaten them. The author goes on to provide suggestions for awareness raising/education, and describes the action taken by NGOs and the government.

Journal article 2014(Society and Human rights)

http://new.trinity.edu/sites/default/files/file_attachments/expositor-2014.pdf

 

Albinism: A life of ambiguity- A Zimbabwean experience              

Machoko, Collis Garikai                                           

Based on interviews with people with albinism, parents of people with albinism, and members of traditional healers associations. Explores beliefs and attitudes about albinism, as well as life experiences of those affected, and possible progressive measures/approaches.

Journal article 2013 (Society and Identity)

http://www.tandfonline.com/doi/pdf/10.1080/14725843.2013.838896

 

How to spread it: Salif Keita                 

Edmunds, Gayle                                                      

An interview with the Malian singer Salif Keita, who has albinism, about his celebrity influence and philanthropy.

Newspaper/Website article2013 (Society and Identity)                  

http://www.citypress.co.za/business/how-to-spread-it-salif-keita/  

 

Exploring the role of Nollywood in the multi murders of persons with albinism        

Foxcroft, Gary                             

A report to Office of the UN High Commissioner for Human Rights, about the role that Nollywood films play in reproducing/reinforcing beliefs about people with albinism that can encourage attacks. The author concludes by recommending more research, action from the UN, international governments and UNICEF Nigeria, and more public education regarding albinism.

Report 2013                  

http://www.whrin.org/  

 

An investigation into the psychosocial implications of oculocutaneous albinism. A case study of Manicaland albino association     

Mutasa, Fungayi L                                   

A detailed investigation, using a case study of a Zimbabwean association of people with albinism, of how people with albinism experience their condition and the challenges it brings. The dissertation covers a wide range of areas of interest, with the author concluding by providing various recommendations.

Masters dissertation 2013 (Society, Psychology, and Identity)

http://ir.uz.ac.zw/jspui/handle/10646/1279 

 

Stories about albinism in Malawi: an “intruder” in my village      

Lund, Patricia M(ed); Nyirenda, M                     

An article in which a journalist recounts his childhood beliefs about people with albinism, and the development of his understanding of the condition and the challenges faced by those affected by it.

Website article 2013

https://curve.coventry.ac.uk/      

                                    

Persons with albinism must not be treated as “Ghosts”, UN experts stress               

Specific author not provided (M2 PressWire)                                      

A description, incorporating quotes from UN experts, of the dangers faced by people with albinism in Africa-. Focuses mainly on attacks for profit, but also mentions health issues.

Press release/ Journal article 2013 (Society and Human rights) 

http://search.proquest.com/docview/1348570618

 

Commodifying the “sacred”, beatifying the “abnormal”: Nollywood and the representation of disability           

Olaiya, Kolawole                    

An article analysing how people with disabilities are represented in the Nigerian film industry. One section (starts on page 145) focuses on albinism. The author argues that people with albinism are more social victims than medical victims. The author analyses the attacks on those with the condition, and their representation in films.

Journal article 2013 (Society and Identity)         

http://muse.jhu.edu/journals/the_global_south/v007/7.1.olaiya.pdf

 

Medicine murder of people with albinism in Tanzania- how casino capitalism creates rumorscapes and occult economies              

Schühle, Judith                        

An article analysing in depth the killing of people with albinism in Tanzania. The author suggests that attacks for profit on people with albinism are a 21st century phenomenon, and must be considered in the context of modernity and profit, rather than be labelled a return to tradition.

Journal article 2013 (Society and Economy)

http://edocs.fu-berlin.de/      

                                 

Colour discrimination against people with albinism in South Africa              

Mswela, M; Nöthling Slabbert, M                                         

An article about the discrimination faced by people with albinism in South Africa due to their skin colour. Includes critical consideration of South Africa’s historical and contemporary context on racism. The author argues against the idea that people with albinism need a special colour category to protect them, instead claiming that the social constructions regarding “black” and “white” are what need to be changed.

Journal article 2013

http://www.ajol.info/index.php/sajbl/article/view/90038/79495

 

The experience of people with oculocutaneous albinism                

Pooe -Monyemore, Mmuso, B J; Mavundla, Thandisizwe, R; Christianson, Arnold L        

A qualitative study of the experiences of people with albinism in South Africa. Includes consideration of stigma from skin colour and superstitions, and how elements of the government, media, NGOs and the private sector have roles in improving life for those with the condition. Also includes a discussion of the “self concept”, relating to agency and self-esteem/ awareness.

Journal article 2012 ( Society and Identity)

http://www.hsag.co.za/index.php/HSAG/article/viewFile/592/721          

 

Discrimination and violence against Tanzanians with albinism in the great lakes region: Crime and national shame

Burke, Jean                              

An analysis of the media coverage of violence against people with albinism in Tanzania. The author identifies the use of four interpretive “frames”: the attacks as crimes, as connected to poverty and inequality, as a “national shame”, and as a human rights issue.

Website article 2012(Society and Media)

http://afsaap.org.au/assets/BURKE.pdf          

 

“It is wrong to think the media is to blame for albino killings”      

Specific author not provided (IPP Media)                            

An interview with Vicky Ntetma (Under The Same Sun, and formerly of the BBC). The topics covered include her undercover exposé of the black market for body parts, the work and community engagement of her organisation, and who can be considered responsible for the difficulties of the threatening living situation for people with albinism.

Website article 2011

http://www.ippmedia.com/frontend/index.php?l=36045            

 

The killing of persons with albinism in Tanzania: A social-legal enquiry      

Salewi, Diana Henry                                

A detailed study of the attacks on people with albinism in Tanzania, examining the motives for the attacks, the responses by the government, and whether there exists sufficient legal protection for people with the condition. The dissertation is based on secondary research. The author concludes with recommendations for legislation, policy, and public education.

Masters dissertation 2011(Society, Law, and Human rights)

http://repository.up.ac.za/

 

Albinism in Africa: Stigma, slaughter, and awareness campaigns               

Cruz-Inigo, Andres E; Ladizinski, Barry; Sethi, Aisha                         

An article examining the myths and beliefs about albinism in Africa, the connected attacks, and the healthcare needs of people with the condition. Provides a list of albinism organisations, and concludes with suggestions for beneficial measures, including awareness groups and public health interventions.

Journal article 2011 (Society, Human rights, and Healthcare)

http://www.sciencedirect.com/science/article/pii/S0733863510001403

 

The fetishization of albinos in Tanzania             

Ackley, Caroline                      

A detailed analysis of the attacks on people with albinism, using different perspectives to examine the underlying factors. Neoliberalism and occult economies in capitalism, and the ways in which authority and power are justified, are key to the analysis.

Academic project 2010 (Society and Economy)

http://www.underthesamesun.com/                   

 

The myths surrounding people with albinism in South Africa and Zimbabwe              Baker, Charlotte;

Lund, Patricia M; Nyathi, Richard; Taylor, Julie                                    

An examination of the myths, cultural beliefs, and attitudes towards people with albinism in South Africa and Zimbabwe. Areas of interest addressed include birth, education, marriage, and potential ways to change attitudes.

Journal article 2010 (Society and Identity)        

http://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=55227336&site=ehost-live

 

CCM candidate praises Lipumba, disqualifies CUF albino candidate            

Hamdani, Said                        

A news story about one Tanzanian parliamentary candidate (Civic United Front) insulting another candidate with albinism on the basis of his condition. Includes quotes from both candidates.

Website article 2010

http://www.ippmedia.com/frontend/index.php?l=21400      

      

They call us “albinos”- the license to mock and murder fellow humans      

Ngugi, Mumbi                        

The managing trustee of the Albinism Foundation of East Africa describes the threats to people with the condition. The author criticises the Church and human rights groups for a lack of advocacy, and the media for referring to people with albinism as “albinos”, as defining them firstly by the condition and not as humans.

Website article 2010 Society and Human rights

http://www.nation.co.ke/

 

Miner’s magic: Artisanal mining, the albino fetish and murder in Tanzania               

Bryceson, Deborah Fahy; Jønsonn, Jesper Bosse;Sherrington, Richard                        

A detailed analysis of the themes and interactions behind attacks on people with albinism in Tanzania. The idea of fetishism (linked to profit, capitalism and neoliberalism) is central.

Journal article 2010 Society and Economy         

http://journals.cambridge.org/ 

 

Albino killings in Tanzania: Implications for security      

Chineye, Dave-Odigie                                              

An article describing the attacks on people with albinism in Tanzania, and national and international reactions to the crimes. The author concludes by recommending more focus on public education, and arguing that the alleviation of poverty could be the most important counter-measure.

Journal article 2010 (Society and Human rights)

http://www.academia.edu/               

 

Albinism and the contingencies of stigma

McLeod, Thomas                   

A detailed deconstruction, using theories such as Goffman’s regarding stigma, of the discrimination faced by people with albinism in sub-Saharan Africa.

Dissertation 2010 (Society and Identity)

http://www.underthesamesun.com/

 

Albinos demand respect and dignity

Akomolafe, Femi                              

An interview with the president of what was The Society of Albinos Ghana (Now Ghana Association of Persons with Albinism). Discusses discrimination, albinism as a disability, and campaigning.

Magazine article 2010

http://search.proquest.com/docview/230231614/fulltextPDF?accountid=11979

 

The sad plight of African albinos        

Akomolafe, Femi                  

An article about beliefs regarding albinism in Africa, and the dangers faced by people with the condition.

Magazine article 2010

http://search.proquest.com/docview/230231504/fulltextPDF?accountid=11979

 

Grandmothers as gems of genetic wisdom: Exploring South African traditional beliefs about the causes of genetic disorders       

Penn, Claire; Watermeyer, Jennifer; MacDonald, Carol; Moabelo, Colleen                        

An exploration of traditional South African beliefs regarding the causes of a range of genetic disorders, including albinism. Data from focus groups. The authors suggest that grandmothers could be important mediators in initiatives of genetic counselling for parents of children with albinism.

Journal article 2010 (Society and Genetics)

http://link.springer.com/article/10.1007%2Fs10897-009-9252-

 

The “Wrong” colour? Representation and perceptions of albinism among the Bamileke of western Cameroon (Starts on page 121 of “Expressions of the body: Representations in African text and image”)   Djatou, Médard                                       

An examination of the beliefs about albinism in the Bamileke ethnic group in Cameroon. The author describes which beliefs have changed and which haven’t, and the effects they have on the lives of people with albinism. Employment, marriage, and the lack of state provision are topics included.

Book chapter 2009                         

https://books.google.co.uk/books?

(Google books preview, incomplete)

 

A visible difference: Images of black African people with albinism (Starts on page 279 of “Expressions of the body: Representations in African text and image”)         

Baker, Charlotte; Lund, Patricia M                                         

An analysis of how ethnically black Africans have been visually represented. Victorian era freak shows and dehumanising medical photographing and terminology are contrasted with more progressive medical research descriptions, empowered self-representation, and projects like Positive Exposure.

Book chapter 2009 (Society and Identity)

https://books.google.co.uk/books?  (Google books preview, incomplete)

 

Life as an albino in Africa    

Hughes, Dana                                          

A news article about the discrimination against, and attacks on, people with albinism in Tanzania. The secretary general of the Tanzanian Albino Society is quoted regarding the need for more public education and the possibility of albinism being classed as a disability.

Website article 2008 (Society and Human rights)             

http://abcnews.go.com/International/story?id=5331015&page=1

 

Surprise of Tanzania’s first albino MP               

Specific author not provided (BBC News)                                               

A news story about the appointment of Tanzania’s first MP with albinism, with a brief background of the difficulties people with the condition face in the country.

Website article 2008

http://news.bbc.co.uk/1/hi/world/africa/7348528.stm

 

Twins, Hermaphrodites, and an Androgynous Albino Deity         

Imperato, Pascal James; Imperato, Gavin H                                       

Journal article 2008

Includes description of the beliefs of the Bamana and Manika ethnic groups of Mali regarding people with albinism. Includes beliefs of transgressive conception and special powers.

http://search.proquest.com/docview/220961986/fulltextPDF?accountid=11979

 

Writing over the illness: The symbolic representation of albinism (Starts on page 115 of “Social studies of health, illness and disease: Perspectives from the social sciences and humanities”)                 

Baker, Charlotte                     

Book chapter 2008 (Society and Literature)

An article exploring some of the perceptions and misunderstandings of albinism – particularly the idea that it is something other/more than a medical condition. The author examines the role of literature in the creation and reproduction of these representations, with reference to the African context.

http://books.google.co.uk/books? (Google books preview, incomplete)

 

Research on psychological and personal aspects of albinism: A critical review         

Estrada- Hernandez, Noel; Harper, Dennis C                                                         

A review of 15 research articles on the personal/ psychological aspects of living with albinism. The authors claim that there has been a lack of research focus on how people with albinism adapt to life with their condition. They also note a lack of consideration of the varying severity of associated health and vision problems, as well as a lack of consideration of the varied experience people have, due to context, of having albinism.

Journal article 2007 (Society, Psychology, and Identity) 

http://search.ebscohost.com/login.aspx?direct=true&db=pdh&AN=2007-12188-003&site=ehost-live

 

Teenagers with oculocutaneous albinism in Polokwane: Their self-esteem and perception of societal attitudes                 

Selepe, D M                             

A detailed investigation of how teenagers in Polokwane, South Africa, experience albinism. The author used a questionnaire and interviews, with 50 subjects with the condition and 50 subjects without. Data and discussion are provided, and the author concludes with recommendations for policy, campaigns, education, and further research.

PHD thesis 2007 (Society and Psychology)

No link available

 

Albinism in Malawi: knowledge and beliefs from an African setting            

Braathen, Stine Hellum; Ingstad, Benedicte                     

A study using qualitative interviews of people with albinism and members of their families, aiming to investigate the lives of and discrimination against people with albinism. Covers a variety of aspects of life, noting in particular a general lack of assistance, and awareness about albinism and its causes.

Journal article 2006

http://www.tandfonline.com/doi/pdf/10.1080/09687590600918081      

 

An African music star uses fame and wealth to help fellow albinos; Salif Keita fights prejudice after a tough childhood; Superstitions, abductions    

Trofimov, Yaroslav                                   

A newspaper article about Salif Keita, a popular African music singer with albinism, and his efforts to reduce the discrimination faced by others with the condition.

Newspaper article 2006 (Society and Identity)

http://search.proquest.com/docview/398925033         

 

A sociological study of children with albinism at a special school in the Limpopo province       

Gaigher, R J; Lund, Patricia M; Makuya, E                                            

Healthcare               A study of 32 children with albinism at a special school, using surveys and interviews. The authors examine the merits and drawbacks of special schools in comparison to standard schools, health precautions/treatments, and (in more depth) how the condition affects the social aspects of the subjects’ lives.

Journal article 2002 (Society and Education)

http://www.curationis.org.za/index.php/curationis/article/viewFile/793/730

 

Health and education of children with albinism in Zimbabwe        

Lund, Patricia M                                     

An article describing the results of a questionnaire study of a sample of school children with albinism in Zimbabwe. Includes information on how albinism affects various aspects of the children’s lives, as well as a list of some of the questions asked by the children regarding their condition and the impact it will have on them.

Journal article 2001 (Society, Healthcare, and Education)

http://her.oxfordjournals.org/content/16/1/1.full.pdf

 

White skin, black souls        

Kuster, Reto

An article primarily about the social discrimination faced by people with albinism in parts of Africa, also with mention of associated health problems and cultural beliefs about the condition.

Magazine article 2000 (Society and Human rights)

http://search.proquest.com/docview/230255438/fulltextPDF?accountid=11979

 

That rare and random tribe: Albino identity in South Africa         

Blankenberg, Ngaire                               

An in depth article dealing primarily with the racial identity challenges faced by people with albinism, with a focus on South Africa. Discusses how those with the condition experience being in between Africa and the west, and blackness and whiteness.

Journal article 2000 (Society and Identity)         

http://www.tandfonline.com/doi/pdf/10.1080/02560040085310081      

 

 

Primary focus: Human rights

 

Tanzania’s albino community: “Killed like animals”        

Specific author not provided (BBC News)                             

An article about profit-motivated attacks on people with albinism in Tanzania, with quotes from albinism groups.

Website article 2014 (Human rights and Society)

http://www.bbc.co.uk/news/world-africa-30394260      

 

Protect the rights of people with albinism        

Specific author not provided (UN Office of the High Commissioner for Human Rights )

A brief summary of the attacks on people with albinism in Tanzania, the government’s reaction, and UN resolutions and appeals to governments to act to do more to protect people with albinism.

Website article 2014 (Human rights and Society)

http://www.ohchr.org/

 

Grave robbers and killing sprees: living with albinism in East Africa           

Baker, Charlotte                     

An article describing the attacks on people with albinism in East Africa, the risks of sun exposure for people with the condition, and possible action to improve their situation.

Website article 2014 (Human rights and Society)

https://theconversation.com/

 

Witch doctors arrested after albino woman murdered “for potions” in Tanzania    

Dearden, Lizzie                      

A newspaper story about the arrest of two witchdoctors following the murder of a woman with albinism in Tanzania, with quotes from Under The Same Sun.

Newspaper/Website article 2014 (Human rights and Society)

http://www.independent.co.uk/

 

People with albinism: Pillay urges more protection after barbaric killing in Tanzania               

Specific author not provided (UN Office of the High Commissioner for Human Rights )                                            

An article describing the UN High Commissioner for Human Rights’ appeal for greater protection for people with albinism, in reaction to a particular murder case in Tanzania. Includes quotes from the high commissioner, calling for public education and awareness campaigns, and improvement of the centres for displaced people with albinism.

Website article 2014

http://www.ohchr.org/

 

Media analysis of albino killings in Tanzania: A social work and human rights perspective    

Burke, Jeane                            

A study, using analysis (from a social work perspective) of media coverage of attacks on people with albinism in Tanzania. The author investigates the action reported by the media to have taken place in response to the attacks, and considers what can be learned from the reports to inform social work in balancing human rights needs.

Journal article 2014

http://www.tandfonline.com/doi/pdf/10.1080/17496535.2014.895398

 

Albino children mutilated for profit: Canadians in Africa improve lives of victims

Carman, Tara                          

A newspaper story about attacks on people with albinism, a specific case with a boy who later had help from a Canadian surgeon, and Peter Ash (founder of “Under the same sun”).

Newspaper article 2011(Human rights and Healthcare)

http://search.proquest.com/docview/1515622096

 

A call for a protocol to the African charter on human rights and peoples’ rights on the rights of persons with disabilities in Africa                  

Kamga, Serges, Alain Djoyou                                                                                                              

Includes discussion of whether or no albinism can be considered a disability in the UN Convention on the Rights of Persons with Disabilities (CRPD). The author notes that there is no specific provision for people with albinism in the African Charter on Human and Peoples ‘rights.

Journal article 2013

No link available   

 

As Tanzania’s albino killings continue, unanswered questions raise fears

Gilgoff, Dan            

An article describing the profit-motivated attacks on people with albinism in Tanzania, as well as discrimination, and beliefs about the condition. The article focuses partly on the activist Josephat Torner.

Magazine/Website article 2013( Human rights and Society)         

http://news.nationalgeographic.com/news/2013/10/131011-albino-killings-witch-doctors-tanzania-superstition/

 

Report of the Office of the High Commissioner for Human Rights on persons with albinism  

Specific author not provided (UN Office of the High Commissioner for Human Rights )

A UN report describing the discrimination and dangers faced by people with albinism in Africa. The report also describes government action in response, and provides recommendations to governments, human rights bodies, and other international actors.

Report 2013

http://srsg.violenceagainstchildren.org/

 

Albinos demand laws against discrimination   

Rajab, Ramadhan                                    

A news story describing appeals, from people with albinism in Kenya to the government, for laws specifically dealing with the discrimination and profit-motivated attacks against them.

Website article 2013 (Human rights and Law)

http://www.the-star.co.ke/news/article-125097/albinos-demand-laws-against-discrimination

 

Attacks on albinos: UN passes historic resolution           

Specific author not provided(The Patriotic Vanguard)                                        

A brief article describing the UN Human Rights Council’s adoption of a resolution to recognise and address the attacks and discrimination against people with albinism in various countries. An embedded video of Peter Ash (Under The Same Sun) addressing the Human Rights Council is included.

Website article 2013

http://www.thepatrioticvanguard.com/attacks-on-albinos-un-passes-historic-resolution

 

Towards a biblical response to myth and discrimination against the human right of albinos in Yorubaland Olagunju, Olugbenga Samuel                                                  

The author uses secondary sources to give an overview of the discrimination and attacks against people with albinism in Africa and specifically in the Yoruba ethnic group, before addressing the problems from a Christian, biblical perspective. The author concludes that community education campaigns and laws specifically considering people with albinism may be needed.

Journal article 2012 (Human rights, Religion and Society)

http://infinitypress.info/index.php/jsss/article/view/22/25

 

Hunted in Ivory Coast, albino child and parents granted asylum in Israel 

Zarchin, Tomer                       

A news story about a girl with albinism and her parents being granted Asylum in Israel, on the basis of the danger of profit-motivated attacks on the child if they were to return to the Ivory Coast. The author claims that this is the first instance, for Israel, of parents being granted asylum due to their child.

Website article 2011        

http://www.haaretz.com/

 

Magic, mutilation, and murder: A case for granting asylum to Tanzanian nationals with albinism

Larson, Stacy         

An article in which the author works through the details of the US Immigration and Nationality act relating to asylum, explaining how Tanzanians with albinism fit the requirements.

Journal article 2011 (Human rights and Law)

http://digitalcommons.pace.edu/

 

Myths, discrimination and the call for special rights for persons with albinism in sub-Saharan Africa

Thuku, Muthee                      

A detailed article describing various aspects of albinism in Africa. The author covers myths and beliefs about the condition, discrimination and social, employment and education challenges, and attacks. The author discusses the applicable UN human rights protection, and proposes positive discrimination (“affirmative action”) measures which African states could put into place.

Website article 2011(Human rights, Society, and Education)

http://www.underthesamesun.com/sites/default/files/MYTHS.Final_.pdf              

 

Tanzania’s first elected albino MP fears for his life        

Specific author not provided (The Telegraph)                    

An article about Salum Khalfan Barwany, a Tanzanian MP with albinism, and his quotes about being targeted by a group of potential criminals. Some general background to attacks on people with albinism is provided.

Newspaper/Website article 2010(Human rights, and Society)

http://www.telegraph.co.uk/

 

Black and white: The voice of people with albinism in Tanzania  

Mhegera, Elias                                          

A news article about the discrimination against and lack of representation for people with albinism in Tanzania. The author provides several examples, including the profit-motivated attacks and a lack of political representation.

Website article 2010(Human rights, and Society)

http://www.shout-africa.com/top-story/black-and-white-the-voice-of-people-with-albinism-in-tanzania/              

 

Swaziland: Trade in albino body parts moving south     

Specific author not provided (IRIN News)                            

A news story about attacks on people with albinism, specifically describing a fear that the black market for body parts is emerging in Southern Africa.

Website article 2010 (Human Rights and Society)

http://www.irinnews.org/report/90281/swaziland-trade-in-albino-body-parts-moving-south

 

Is the whole region being sucked into this macabre trade in albino body parts?      

Ulimwengu, Jenerali                               

An article about the profit-motivated attacks on people with albinism and the police investigations that have followed. The author criticises the nation’s methods of education, and identifies greed, particularly that of Tanzania’s elites, as the key underlying theme.

Website article 2010 Human rights and Society

http://www.theeastafrican.co.ke/opOrEd/comment/-/434750/994398/-/cess0j/-/              

 

Kenyan jailed for trying to sell albino in Tanzania           

Specific author not provided (Reuters)                                  

A newspaper story about the sentencing of a man plotted to sell a person with albinism to a witch doctor in Tanzania for a large sum of money. The story continues, to give a brief description of profit-motivated attacks on people with the condition in East Africa.

Newspaper/Website article 2010 (Human rights and Society)

http://www.independent.co.uk/

 

“They don’t know how to defend themselves”: Talk about disability and HIV risk in South Africa

Rohleder, Poul                       

Journal article 2010 Human rights           

An investigation, using qualitative methods, of the specific HIV risks experienced by people with disabilities in South Africa. The danger of rape for women and girls with albinism is specifically mentioned. The author discusses factors such as the role of stigma and lack of education, and notes the need for further research.

http://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=48960041&site=ehost-live

 

Danger not yet over for the Great Lakes albinos            

Wanjiru, Anne       

An article about attacks on people with albinism in the Great Lakes region of Africa.

Website article 2010

http://www.ifrc.org/

 

Seven new albino killings in Tanzania and Burundi         

Specific author not provided (The Telegraph)   Newspaper/Website article

A newspaper story about attacks on people with albinism, with some statistics, and quotes from Under The Same Sun.

2010 (Human rights and Society)       

http://www.telegraph.co.uk/

 

A black market for magical bones: The current plight of East African albinos           

Bucaro, Susie                           

A description of the profit-motivated attacks on people with albinism in East Africa, and the local and international responses to the crimes.

Journal article 2010 (Human right and Society)

http://lawecommons.luc.edu/

 

Political notes: Conolley speaks against maulings in East Africa  

Hunley, Jonathan                   

A report of a House of Representatives (USA) vote for a bill to condemn profit-motivated attacks on people with albinism in east Africa. Includes a brief story about a Tanzanian victim.

Newspaper article 2010 Human rights               

http://search.proquest.com/docview/458500354

 

Oppression through omission: The human rights case of persons with albinism in Uganda   

Allen, Kelly                                                              

An examination, using primary and secondary document research and interviews with members of relevant organisations, of the limitations of current human rights documents in terms of protecting and furthering the rights of people with albinism. Includes description of the discrimination and threats faced by those with the condition in East Africa. The author’s conclusion centres around the idea that more clear and widely recognised definitions are needed, possibly including categorising people with albinism as disabled.

Website article 2010 Human rights

http://www.underthesamesun.com/

 

Hunted down and ostracised, Burundi albinos want their own census and MP         

Musinguzi, Bamuturaki                         

An article with quotes from the Albino Association of Burundi calling for more state protection and greater representation for people with albinism, in light of recent attacks.

Website article 2009 (Human rights and Society)             

http://www.theeastafrican.co.ke/news/-/2558/831010/-/px3ckkz/-/index.html

 

Mali albino given Spanish asylum “fled discrimination”                  

Rainsford, Sarah                                       

A news story about the first person from Africa with albinism to be granted asylum in Spain. The article briefly describes the dangers people with the condition face in parts of Africa.

Website article 2009 (Human rights and Law) 

http://news.bbc.co.uk/1/hi/world/africa/8428688.stm

 

Tanzania: East Africa’s albino underworld      

Bennet, Jody Ray                    

A news story about attacks on people with albinism in East Africa, with quotes from the Red Cross and Under The Same Sun.

Website article 2009 (Human rights, Society) 

http://ngonewsafrica.org/archives/885

 

Expose those behind albino murders, Tanzania urged 

Manson, Katrina                                      

A news story about human rights groups calling for information on the wealthy buyers of human body parts in Tanzania. The article claims that no buyer has ever been prosecuted, and that strong belief in witchcraft exists throughout society, including among the nation’s top politicians. Peter Ash from Under The Same Sun is quoted.

Website article 2009 (Human rights and Society)

http://www.reuters.com/article/2009/12/01/idUSGEE5B00E9  

 

Report: Scores of albinos in hiding after attacks             

Specific author not provided (CNN)                           

An article about attacks on people with albinism in East Africa, and attempts to find safe places to live.

Website article 2009 (Human rights and Society)

http://edition.cnn.com/2009/WORLD/africa/11/29/tanzania.albinos/index.html

 

Journey to Tanzania: Reporter exposes epidemic of albino killings                     

Chang, Juju                                                                                             

A news story about attacks on people with albinism in Tanzania, and the steps they have to take to find safe shelter.

Website article 2009       

http://abcnews.go.com/2020/journey-tanzania-reporter-exposes-albino-killings/story?id=8712754&page=1

 

The “genocide” of Burundi’s albinos

Ndege, Yvonne                       

An article about attacks on people with albinism in East Africa.

Website article 2009 (Human rights and Society)             

http://www.aljazeera.com/focus/2009/07/2009723740694359.html

 

Albino trials begin in Tanzania            

Specific author not provided (BBC News)                                              

A brief news story about the trial of seven people accused of murdering people with albinism for their body parts, in Tanzania. Some background information regarding the attacks is provided.

Website article 2009 (Human rights and Society)        

http://news.bbc.co.uk/1/hi/world/africa/8089351.stm

 

African albinos target of killers looking for profit from body parts              

McNeil, Donald G Jnr                              

A brief article about Peter Ash, a Canadian with albinism who set up the organisation “Under the Same Sun”, and the murders in Tanzania of people with the condition that prompted him to do so.

Newspaper article 2009    

http://search.proquest.com/docview/250697973         

 

Witchcraft allegations, refugee protection and human rights: A review of the evidence        

Schnoebelen, Jill                                      

A UN report that includes consideration of the dangers faced by people with albinism in parts of Africa. Includes some examination of police failures/culpability, and government action/failures.

Research paper 2009

http://www.underthesamesun.com/

 

Hocus pocus, witchcraft, and murder: The plight of Tanzanian albinos      

Alum, Alexander; Gomez, Michael; Ruiz, Edilisa                               

A detailed investigation of the profit-motivated attacks on people with albinism in Tanzania. The authors provide a background of the role of witchdoctors in the murders, before outlining the government and international responses, and analysing the phenomenon from a United Nations human rights perspective. The authors provide considered recommendations for national and international actors.

Academic project 2009 (Human rights and Society)        

http://www.underthesamesun.com/

 

Through albino eyes: The plight of albino people in Africa’s Great Lakes region and a Red Cross response

Red Cross                                  

A detailed report, including individual cases, on the state of human rights for people with albinism in the Great Lakes region of Africa. Sun exposure issues and profit-motivated attacks are central to the report, which identifies the key needs of people of the region with the condition. The report suggests appropriate action for governments and The Red Cross.

Report 2009 (Human rights and Society)           

http://www.underthesamesun.com/                                

 

Customary practices and children with albinism in Namibia: A constitutional challenge? (Starts on page 243 of “Children’s rights in Namibia”)         

Ntinda, Ruusa N    

An article examining on whether the constitutional provisions in Namibia for the protection of culture and customary law are can be upheld at the same time as guaranteeing children with albinism their rights. The author describes beliefs in Namibian culture about albinism, discusses positive discrimination (“affirmative action”), and calls for damaging cultural practices to be identified, and education to be used to help change attitudes.

Book chapter 2009 (Human rights, Society, and Law)

http://www.kas.de/

 

In the wake of dozens of killings of albinos in Tanzania, UNICEF urges action and respect for human life

Specific author not provided(UNICEF Press Centre)                           

A UNICEF press release calling for more action from the Tanzanian government, media, communities and others to ensure safety from attack for people with albinism.

Press release/website article 2008

http://www.unicef.org/media/media_46932.html       

 

Senegal: Albinos face perilous social rejection                 

Specific author not provided (IRIN News)                                              

A news story about the social discrimination faced by people with albinism in Senegal. Attacks on people with the condition in other African nations are mentioned.

Website article 2008 (Human rights and Society)

http://www.irinnews.org/report/81588/senegal-albinos-face-perilous-social-rejection

 

Albino Africans live in fear after witch-doctor butchery                 

Smith, Alex Duval                   

A newspaper article about attacks on people with albinism in Tanzania, beliefs about the condition, and government attempts to tackle the violence.

Newspaper/ Website article 2008(Human rights and Society)

http://www.theguardian.com/world/2008/nov/16/tanzania-humanrights

 

Rights for albinos 

Specific author not provided (New Internationalist)

A brief description of the profit-motivated attacks on people with albinism in Tanzania.

Magazine/Website article 2008 (Human rights and Society)

http://newint.org/columns/currents/2008/08/01/tanzania/                   

 

Living in fear: Tanzania’s albinos       

Specific author not provided (BBC News)                             

A news article about profit-motivated attacks on people with albinism in Tanzania. The story mentions the appointment of the nation’s first MP with albinism. The article states that the attacks do not seem to be occurring in neighbouring countries, suggesting that Tanzania may have been the first country in which the attacks gained significant media attention.

Website article 2008 (Human rights and Society)

http://news.bbc.co.uk/1/hi/world/africa/7518049.stm

 

Our biggest fear is living, albinos cry                 

Specific author not provided (Daily Monitor)                                       

A news story about profit-motivated attacks on people with albinism in parts of Africa, linking the crimes to ritual killings in the continent.

Website article (No publication date provided) (Human rights and Society)

http://www.monitor.co.ug/

 

Primary focus: Identity

 

Fashion’s new colour           

Specific author not provided (City Press)                              

A newspaper story about Thiando Hopa, a successful model and lawyer who has albinism, with quotes describing her childhood and development with the condition.

Newspaper/Website article 2012 (Identity and Society)

http://www.citypress.co.za/citypress/fashions-new-colour-20121022/  

 

South African model with albinism challenges prejudices              

Smith, David                            

An article about Thando Hopa, a South African lawyer with albinism who has become a successful fashion model. The author includes some information about the dangers for those living with the condition in parts of Africa.

Newspaper/Website article 2012 (Identity and Society)

http://www.theguardian.com/world/2012/nov/02/south-africa-model-albinism-prejudice

 

Albino models setting the trend for Africa       

Forbes, Kate                            

A news story about models with albinism in the context of attacks on and persecution of people with albinism in parts of Africa.

Website article 2012 (Identity and Society)      

http://www.bbc.co.uk/news/world-africa-20096144

 

“Albino” vs “Person with albinism (PWA)” official position of Under The Same Sun (UTSS)   

Specific author not provided (Under The Same Sun)                         

An explanation by the albinism NGO Under The Same Sun’s endorsement of the term “person/people with albinism” in place of “albino(s)”. The reasons given are the historic pejorative use of “albino”, and that it defines the individual firstly by their condition, instead of as a person. Comparisons are provided in the argument.

Website article 2012 (Identity and Society)    

http://www.underthesamesun.com/

 

“Chromatic ambivalence: Colouring the albino” (Starts on page 143 of “Cultures of colour: Visual, textual, material”)   

Baker, Charlotte                    

The author discusses how the identity of people with albinism has been portrayed, particularly in regards to blackness, whiteness and “the other”. The vulnerability of people with the condition to misrepresentation is considered, as well as the challenge they pose to binary ideas of identity and socially created ideas of difference. Refers specifically to people with albinism in Africa, and to works of literature.

Book chapter 2012 (Identity and Literature)     

No link available

 

Looking inside       

Gunn, Shirley; Puwana, Zukiswa (ed)                                   

A collection of five autobiographical accounts written by people with albinism about their lives, and the influence of their condition. The addresses and contact details of South African special schools for blind and partially-sighted students are included at the end of the book.

Book 2009 (Identity, Society, and Education)

No link available

 

A model for enhancement of self-concept of people with albinism               

Pooe- Monyemore, Mmuso, Barbara                                  

A detailed study, with 15 South Africans with albinism, to investigate the attitudes and perceptions people with albinism have of themselves, their environment/society, and their need/potential for growth.

PHD Dissertation 2007 (Identity and Society)   

http://uir.unisa.ac.za/bitstream/handle/10500/3914/thesis_pooe_b.pdf?sequence=1

 

The voices of albinism          

Wan-Kee-Cheung, Nathalie                                   

A detailed study using qualitative interviews, to reveal the challenges faced by people with albinism globally and the ways in which they face these difficulties. The section “Albinism in Africa” starts on the page marked 13 (20th page of the PDF). The author discusses the experience of albinism using theories of Irving Goffman of stigma and “spoiled identity”.

Masters dissertation 2001 (Identity and Society)             

http://spectrum.library.concordia.ca/1667/1/MQ68394.pdf      

 

Positive exposure                  

Guidotti, Rick;Mclean, Diane                          

(Mostly images) An article, with images, about the non-profit “Positive Exposure”, which uses photography and film to address stigma against people with genetic conditions. People with albinism are a key focus, including those in Africa.

Journal article 2001

http://albinizm.ru/positive_exposure.pdf

 

Black, yet white: A hated color in Zimbabwe  

McNeil, Donald G                                     

A newspaper story about the discrimination faced by people with albinism in parts of Africa. No mention is given of profit-motivated attacks, suggesting the article was published before the attacks started or became common.

Newspaper/website article 1997 (Identity and Society)

http://www.nytimes.com/1997/02/09/world/black-yet-white-a-hated-color-in-zimbabwe.html?pagewanted=print

 

 

Primary focus: Education

 

Geographical differences in primary schoolchildren’s key sun-related behaviours: An exploratory, feasibility study

Wright, Caradee Y; Albers, Patricia N; Oosthuizen, Maria A; Naidoo, Mogesh               

An investigation of what protective measures are used by schoolchildren in different parts of South Africa. Refers to albinism and susceptibility to skin cancer. The authors conclude that awareness campaigns regarding sun protection must be tailored to the different areas, not a single campaign to fit all.

Journal article 2014

http://www.tandfonline.com/doi/pdf/10.1080/03736245.2014.978882

 

Identifying strategies to enhance the educational inclusion of visually impaired children with albinism in Malawi              

Lynch, Paul; Lund, Patricia M; Bonface, Massah                               

A qualitative study to investigate the experiences of, and provision for, students with albinism in Malawi. Includes some information regarding different beliefs about albinism, and concludes by summarising the main challenges to children with the condition.

Journal article 2014

http://ac.els-cdn.com/

 

Albinism in Zambia- information for children  

Lund, Patricia M                                         

A booklet of information about living with albinism, aimed at children and young people. Includes information about what causes albinism, necessary skin protection measures, and what special assistance to seek at school.

Information booklet 2014 (Education, Healthcare, and Identity)

https://curve.coventry.ac.uk/

 

Guidebook for students with albinism launched               

“Correspondent David” (IPP Media)                                      

An article describing the creation and launch, by the Tanzanian government and Under The Same Sun, of a guidebook of information for students with albinism.

Website article 2013

http://www.ippmedia.com/frontend/index.php?l=61780               

 

Living with albinism: Stories from Malawi May 2013

Lund, Patricia M; Simbota, I D; Kassim, I; Mnandi, E; Machinjiri, E; Chimodzi, V; Thelele, M; Massah, F

Articles from individuals with albinism and people close to people with the condition, covering personal experiences of education, childhood and family. Gives information about the AIMZ (Albinism in Malawi and Zambia) project.

Online article 2013 (Education, Identity, and Society)

https://curve.coventry.ac.uk/open/file/0fc15b90-40f0-4d23-a468-feda9af64507/1/Living%20with%20Albinism%20Stories%20from%20Malawi%20May%202013.pdf

 

Education of children and young people with albinism in Malawi                  

Lund, Patricia M; Lynch, Paul

A detailed report of a study, using school visits in Malawi, focus groups, interviews and other methods, of the experiences of children and young people with albinism in education.

The authors provide recommendations for ministries of education and other relevant bodies/agencies for interventions and support for children with albinism. Attitudes and perceptions were also investigated.

Report 2011 (Education and Society)

http://thecommonwealth.org/sites/default/files/news-items/documents/121119.pdf         

 

How can DSE support the advancement of the African Decade of Persons with Disabilities (SADPD): A letter to the secretariat (Starts on page 36 of “Challenging the achievement gap by disrupting concepts of normalcy” the complete essays”)

Taniform, Lawrence

(“DSE” refers to Disability Studies in Education.) The author describes his experience of working in education, and describes how DSE can be a part of the SADPD. The author links poverty and disability and calls for more public/community education regarding albinism.

Essay/Letter 2011 (Education and Human rights)            

http://files.eric.ed.gov/fulltext/ED517449.pdf

 

Albinism in Botswana junior secondary schools- a double case study

Dart, Gareth; Nkanotsang, Tiroyaone; Chizwe Ose; Kowa Lily      

A study with two students with albinism, at different schools. The authors provide a brief overview of living with albinism, and investigate the various challenges faced by the students in education (due to their condition). The authors conclude with suggestions of how the students’ school experience can be improved.

Journal article 2010

http://core.ac.uk/download/pdf/1915115.pdf

 

 

Primary focus: Law

 

Fearing persecution in Africa, man with albinism fights deportation with unusual defense    

Howard, Kate                          

A newspaper story about a man who emigrated from Nigeria to the USA with his family at the age of ten, but years later, as a married adult, was threatened with deportation. He successfully argued that he would be in danger in Nigeria because of his albinism, which could make him a target for criminals involved in the black market for body parts of people with albinism.

Newspaper article 2011 (Law and Human rights)             

http://search.proquest.com/docview/860156656      

                                     

Can a new ban on witchcraft protect the albinos of Tanzania?     

Poon, Linda                              

A description of the attacks on people with albinism in Tanzania, the government’s new ban on witchdoctors, and a brief analysis of the term “witchdoctor”.

Website article 2015 (Law and Society)

http://www.npr.org/

 

Tanzania bans witchdoctors after albino murders          

Lain, Aislinn                              

A newspaper story about Tanzania’s new ban on witchdoctors, with background information regarding the attacks, statistics, and quotes from the Tanzanian Albino Society and other sources.

Newspaper/Website article 2015 (Law, Society, and Human rights)

http://www.telegraph.co.uk/

 

Tanzania bans witchdoctors in attempt to end albino killings        

Smith, David                           

An article about Tanzania’s new ban on witchdoctors, and other efforts to stop the attacks on people with albinism.

Newspaper/Website article 2015 (Law and Society)

http://www.theguardian.com/world/2015/jan/14/tanzania-bans-witchdoctors-attempt-end-albino-killings

 

The grim reason Tanzania has decided to ban witchdoctors         

Iyengar, Rishi                           

A brief description of Tanzania’s new ban on witchdoctors.

Magazine/Website article 2015 (Law and Society)         

http://time.com/3666772/tanzania-witchdoctor-ban-albino-attacks/

 

 

Primary focus: Demography

 

Distribution of oculocutaneous albinism in Zimbabwe   

Lund, Patricia M                     

A study aiming to determine which areas of Zimbabwe have higher frequencies of people with albinism. A large-scale survey of schools was used, and albinism was shown to be more prevalent in urban areas of the country, although there are in total more students with the condition in rural areas. The author argues that many studies of albinism focus primarily on urban areas, risking neglecting those affected in rural locations.

Journal article 1996

http://jmg.bmj.com/content/33/8/641.full.pdf+html  

 

 

Primary focus: Genetics

Was skin cancer a selective force for black pigmentation in early homin evolution?                   

Greaves, Mel                                                                                         

Examines the development of darker skin colour in early humans. Provides some information on skin cancer in Africans with albinism, and uses observations of its frequency as part of the basis to claim that black skin may have developed as a protection against skin cancer.

Journal article 2014

http://rspb.royalsocietypublishing.org/content/royprsb/281/1781/20132955.full.pdf

 

Skin cancer was not a potent selecting force in the evolution of protective pigmentation in early hominins

Jablonski, Nina G; Chaplin, George                      

An article arguing against the proposed idea of dark skin evolving to protect against skin cancer, using (as the original proposal of the idea did) albinism in Africa as a key part of the argument. The authors argue that people with albinism do not show us how human skin was before evolving protective pigmentation and that skin cancer would not have generally occurred early enough in the lives of humans to significantly impede reproduction.

Journal article 2014(Technical)

http://rspb.royalsocietypublishing.org/content/royprsb/281/1789/20140517.full.pdf            

 

 

Functional characterisation of two novel splicing mutations in the OCA2 gene associated with oculocutaneous albinism type II     

Rimoldi, Valeria; Straniero, Letizia; Asselta, Rosana; Mauri, Lucia; Manfredini, Emanuela; Penco Silvana; Gesu, Giovanni P; Del Longo, Alessandra; Piozzi, Elena; Solda, Giulia; Primignani, Paola

A study of the genetic defects causing albinism in three patients, which showed two previously unknown splicing mutations. The authors conclude that their results add further weight to the idea that the effects of mutations cannot be predicted until certain methods of intense analysis have been used. They note that studies like this are important for progress in diagnosing albinism.

Journal article 2014 (Technical)

http://ac.els-cdn.com/        

 

Mothers’ experiences of genetic counselling in Johannesburg, South Africa             

Morris, Megan                                                                             

A detailed investigation of the experiences of mothers at state hospitals in Johannesburg (after giving birth to a child diagnosed with a genetic condition) with genetic counselling. Albinism is one of the conditions in the study, and mothers’ beliefs about albinism are detailed.

Masters dissertation2013 (Genetics and Healthcare)   

http://link.springer.com/article/10.1007/s10897-014-9748-x

 

Biology and genetics of oculocutaneous albinism and vitiligo- common pigmentation conditions in southern Africa          

Manga, Prashiela; Kerr, R; Ramsay, Michele; Kromberg, Jennifer G R

Explains the biological specifics of pigmentation and each form of albinism (OCA1-4). The authors claim that as scientific understanding of pigmentation increases, new treatments and therapies for albinism are likely to be developed- possibly including one approach for all OCA types.

Journal article 2013 (Technical)

http://www.samj.org.za/index.php/samj/article/view/7046/5574

 

Albinism: Genetics                 

Oetting, William S                 

An overview of the genetics of albinism in its different types. The author notes that there is still need for research, including some mutations not yet characterised.

Journal article 2011 (Techincal)

http://onlinelibrary.wiley.com/doi/10.1002/9780470015902.a0006081.pub2/pdf

 

Clinico-epidemiologic features of oculocutaneous albinism in northeast section of Cairo- Egypt             

Mohamed, Alaaeldin F; El-Sayed, Nermine S; Seifeldin, Neveen S               

http://ac.els-cdn.com/

Journal article 2010 (Technical)

An investigation of the different forms of albinism among a group Egyptian patients with genetic disorders. Family history was examined. The authors identify consanguinity as an important factor for the prevalence of albinism, and state that it could be associated with or connected to other genetic anomalies, and Discusses the eyesight and sun-exposure problems of people with albinism and calls for improvements in education and care.

 

Oculocutaneous albinism in a rural community of South Africa: A population genetic study  

Lund, Patricia M; Maluleke, T G; Gaigher, I; Gaigher, M J             

A study of the prevalence of albinism in clans of the Venda region of South Africa, with description of the difficulties people affected face. The Vhatavhatsindi clan is identified as having a particularly high proportion of people with the condition.

Journal article 2007 (Genetics, Demography)  

http://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=25728005&site=ehost-live

 

Oculocutaneous albinism type 2 (OCA2) with homozygous 2.7-kb deletion of the P gene and sickle cell disease in a Cameroonian family. Identification of a common TAG haplotype in the mutated P gene

Aquaron, Robert; Soufir, Nadem; Berge-Lefranc, Jean-Louis; Badens, Catherine; Austerlitz, Frederic; Grandchamp, Bernard

(Technical.) A case study, of a Cameroonian family and various ethnic groups, aiming to determine when the P gene mutation causing albinism may have occurred. The concluding estimate is 4,100 to 5,645 years ago.

Journal article 2007 (Genetics and Demography)             

http://www.nature.com/jhg/journal/v52/n9/pdf/jhg2007107a.pdf           

 

Oculocutaneous albinism in southern Africa: Population structure, health and genetic care 

Lund, Patricia M   

A review of population studies in southern Africa. Includes data on the prevalence of types of albinism in different areas, and a brief analysis of the mutation causing the condition. Concludes with ways in which to ease the associated impacts of albinism on the affected, in the form of advice to parents and community education.

Journal article 2005 (Genetics, Demography, Medicine, and Society)

http://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=17535360&site=ehost-live

 

Oculocutaneous albinsim    

Okulicz, J F; Shah, R S; Schwartz R A; Janniger, C K         

A general overview and description of oculocutaneous albinism in its different forms, and the health complictions associated. Includes references to albinism in Africa and its prevalence in certain areas. Concludes with suggestions for management of the condition.

Journal article 2003 (Genetics and Medicine)

http://onlinelibrary.wiley.com/doi/10.1046/j.1468-3083.2003.00767.x/pdf            

 

The mouse P (pink eyed dilution) and human P genes, oculocutaneous albinism type 2 (OCA2) and melanosamal pH      

Brilliant, Murray H                  

http://onlinelibrary.wiley.com/doi/10.1034/j.1600-0749.2001.140203.x/pdf

Journal article 2001 (Technical)

A detailed explanation of the genetics of oculocutaneous albinism, with some reference to Africa and its prevalence in certain areas of the continent.

 

In southern Africa, brown oculocutaneous albinism (BOCA) maps to the OCA2 locus on chromosome 15q: P-gene mutations       

Manga, Prashiela; Kromberg, Jennifer G R; Turner, Angela; Jenkins, Trefor; Ramsay, Michele               

An examination of the genetics of the rare “brown” oculocutaneous albinism. The article identifies and explains the mutation that most likely causes this form of the condition.

Journal article 2001         

http://ac.els-cdn.com/

 

Identification of P gene mutations in individuals with oculocutaneous albinism in Sub-Saharan Africa

Kerr, Robyn; Stevens, Gwynneth; Manga, Prashiela; Salm, Sarah; John, Premila; Haw, Tabitha; Ramsay,

An investigation of the genetic mutations that cause albinism.

Journal article 2000 (Technical)

http://onlinelibrary.wiley.com/                                          

 

Type 2 oculocutaneous albinism (OCA2) in Zimbabwe and Cameroon: Distribution of the 2.7 –kb deletion allele of the P gene

Lund, Patricia M; Puri, N; Durham-Pierre, D; King, R A; Brilliant, Murray H; Aquaron, R

A study of the 2.7-kb deletion allele associated with OCA2 albinism. The authors investigated the frequency of the deletion allele in people with albinism in Zimbabwe and Cameroon. The results show that the deletion allele is common among people of various ethnic groups in the two countries. The authors discuss this and other findings in greater detail.

Journal article 1997 (Technical)

http://link.springer.com/article/10.1007%2Fs004390050568

 

Oculocutaneous albinism (OCA2) in Sub-Saharan Africa: Distribution of the common 2.7-kb P gene deletion mutation   

Stevens, G; Ramsay, Michele; Jenkins, Trefor

http://link.springer.com/article/10.1007/s004390050400

Journal article 1997 (Genetics and Demography) (Technical)

A study of the frequency of a particular mutation (2.7-kb deletion mutation) in people with albinism in different regions of Africa, in order to discover the origin of the mutation. The authors conclude that it is likely that this deletion mutation occurred just once, before the divergence of the southern African, Zambian, and Central African republic populations (2000-3000 years ago).

 

Oculocutaneous albinism in an isolated Tonga community in Zimbabwe   

Lund, Patricia M; Puri, N; Durham-Pierre, D; King, R A; Brilliant, Murray H

A study of the Tonga ethnic group in the Zambezi valley- where 1 in 1,000 people have albinism, a much higher proportion than in Zimbabwe as a whole. The authors hypothesise that this is due to the limited choice of marriage partners. The article includes some description of the lives of people with albinism in the valley.

Journal article 1997 (Technical)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1051056/pdf/jmedgene00251-0029.pdf  

    

Frequent intragenic deletion of the P gene in Tanzanian patients with type II oculocutaneous albinism (OCA2)                  

Spritz, Richard A; Kazuyoshi, Fukai; Holmes, Stuart A; Luande, Jeffrey       

A genetic study of thirteen patients in Tanzania. The authors findings suggest differences in allele mutation between people with albinism from Tanzania and those from other parts of western Africa. The authors claim their findings can help with the diagnosis of carriers.

Journal article 1995 (Technical)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1801108/pdf/ajhg00032-0069.pdf

 

An intragenic mutation of the P gene is the common mutation causing tyrosinase-positive oculocutaneous albinism in southern African negroids    

Stevens, Gwynneth; Van Beukering, Jason; Jenkins, Trefor; Ramsay, Michele          

A genetic study of 245 subjects in southern Africa. The authors claim that the study shows that intragenic deletion is a common cause of albinism, and that the development one mutation occurring more frequently than others may be due to a process of natural selection.

Journal article 1995 (Technical)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1801183/pdf/ajhg00029-0039.pdf

 

African origin of an intragenic deletion of the human P gene in tyrosinase positive oculocutaneous albinism

Durham-Pierre, D; Gardner, J M; Nakatsu, Y; King, R A; Francke, U; Ching, A; Aquaron, R; Del Marmol, V; Brilliant, M H                  

http://www.nature.com/ng/journal/v7/n2/pdf/ng0694-176.pdf                

Journal article 1994 (Technical)

A genetic study of the P gene deletion mutation which causes albinism. The authors conclude that their findings suggest that the relevant deletion allele originated in Africa.

 

The tyrosinase-positive oculocutaneous albinism gene shows locus homogeneity on chromosome 15q11-q13 and evidence of multiple mutations in South African negroids

Kedda, M A; Stevens, G; Manga, P; Viljoen, C; Jenkins, T; Ramsay, M                        

The authors findings suggest that, unlike ethnically white people with albinism, ethnically black people with albinism show no evidence of locus heterogeneity. The authors conclude that albinism in ethnically black southern Africans is caused by multiple mutations at a certain locus.

Journal article 1994 (Technical)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1918206/pdf/ajhg00051-0153.pdf

 

 

Primary focus: Medicine

 

Oculocutaneous albinism in Sub-Saharan Africa: Adverse sun-associated health effects and photoprotection

Wright, Caradee Y; Norval, Mary; Hertle, Richard W

A review of research on albinism and sun vulnerability/protection. Describes the consequences of sun exposure for people with albinism, and the frequency of serious problems like skin cancer. The authors highlight the need for health education for people with albinism (particularly school-age children) and their families.

Journal article 2015 (Medicine and Healthcare)

http://onlinelibrary.wiley.com/doi/10.1111/php.12359/pdf                         

 

Visual defect in oculocutaneous albinism is not associated with gross structural anomaly      

Ajose, F O; Awosanya, G O G; Adekoya, B J; Jinadu, F O; Cole, O M; Elebut,e, O H; Ajayi, O I; Awoyemi, Z A; Akinola, R A             

A study of 57 Nigerians with albinism and vision problems at a University teaching hospital. The authors conclude that while the results show no correctable abnormalities of ocular structure, they also show no cataract amongst the patients with albinism. The authors note that the absence of any cataract is worthy of further research.

Journal article 2014 (Technical)

http://omicsonline.org/

 

Prevalence and profile of Ophtalmic disorders in oculocutaneous albinism: A field report from South-Eastern Nigeria  

Udeh, N N; Eze, B I; Onwubiko, S N; Arinze, O C; Onwasigwe, E N; Umeh, R E

http://link.springer.com/article/10.1007/s10900-014-9878-y

Journal article 2014 (Medicine and Demography)       

A fairly detailed study to examine the prevalence of different types of vision problems experienced by people with albinism in Nigeria. Utilises a survey of affected persons, which includes a socio-demographic breakdown.

 

Oculocutaneous albinism: Identifying and overcoming barriers to vision care in a Nigerian populationUdeh, N N; Eze, B I; Onwubiko, S N; Arinze, O C; Onwasigwe, E N; Umeh, R E       

From the same authors and using the same sample of people as the article above- but with data for additional considerations, of the difficulties faced by those in the sample in accessing care for vision problems. The main barriers identified are economic constraints, lack of available vision care, and lack of awareness of options.

Journal article 2014 (Medicine and Healthcare)                

http://link.springer.com/article/10.1007/s10900-013-9787-5

 

Histological review of skin cancers in African albinos: A 10-year retrospective review           

Kiprono, Samson Kimaiyo; Chaula, Baraka Michael; Beltraminelli, Helmut

A study, at the Regional Dermatology Training centre (RTDC, Tanzania) to cover ten years of cases of skin cancer in people with albinism. The authors speculate that data showing a higher average age suggests an improvement of awareness and treatment. Results also suggest that many of the patients delayed seeking treatment.

Journal article 2014 (Medicine and Healthcare)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3975641/pdf/1471-2407-14-157.pdf          

                 

Dermatopathology in sub-Saharan Africa: A systematic 5 year analysis of all histopathological diagnoses from the Regional Dermatology Training Centre (RTDC) in Moshi, Tanzania

Beltraminelli, H; Kiprono, S; Zuriel, D; Swai, B; Giabanni, E; Grossmann, H; Masenga, J E

A retrospective evaluation of dermatopathological diagnoses over 5 years at the RDC in Tanzania. People with albinism were found to account for a significant proportion of skin cancers. The RTDC’s albinism-specific care programmes are credited for improvements in skin cancer treatment for people with albinism.

Journal article 2014 (Medicine and Healthcare)                

http://onlinelibrary.wiley.com/doi/10.1111/jdv.12877/pdf          

 

Quantification and comparison of psychiatric stress in African patients with albinism and vitiligo: a 5-year prospective study       

Ajose, F O A; Parker, R A; Merrall, Elc; Adewuya, A O; Zachariah, M P

A comparative investigation of the psychiatric stress in patients with albinism and vitiligo at an urban hospital in Nigeria. Provides data on anxiety and depression for patients with albinism. The authors conclude that dermatologists will need some training to deal with patient’s psychological symptoms, and that more work is required for prevention of cancer in people with albinism.

Journal article 2014 (Medicine and Healthcare)

http://onlinelibrary.wiley.com/doi/10.1111/jdv.12216/pdf          

 

Miscellaneous skin diseases (Starts on page 174 of “skin diseases among children in Africa”)               

Hogewoning, A

A brief medical overview of albinism in Africa, its associated health risks, and appropriate treatments.

Book/Thesischapter 2012

https://openaccess.leidenuniv.nl/bitstream/handle/1887/20277/08.pdf

 

Albinism and disease causing pathogens in Tanzania: Are alleles that are associated with OCA2 being maintained by balancing selection?                 

Tuli, Abbas M; Valenzuela, Robert M; Kamugisha, Erasmus; Brilliant, Murray H      

An investigation of the form of albinism most common in Sub-Saharan Africa (OCA2), specifically as to whether an associated allele, (2.7-kb deletion allele, P gene) that carriers of this type of albinism have, may provide some degree protection from tuberculosis and leprosy. The authors state that although further study is required, it is likely that the allele provides resistance to tuberculosis but not to leprosy.

Journal article 2012 (Medicine and Genetics) (Technical)

http://www.sciencedirect.com/science/article/pii/S0306987712004264

 

The impact of solar ultraviolet radiation on human health in sub-Saharan Africa    

Wright, Caradee Y; Norval, Mary; Summers, Beverley; Davids, Lester; Coetzee, Gerrie; Orriowo, Mathew O

A review of research on the effects of solar ultraviolet radiation on people in sub-Saharan Africa. Draws attention to the added risks for people with albinism, and notes the tendency for people to delay seek medical help for sun exposure issues, or fail to complete treatment due to financial reasons. The authors call for more awareness campaigns.

Journal article 2012 (Medicine and, Healthcare)              

http://www.scielo.org.za/pdf/sajs/v108n11-12/14.pdf                

 

Is the existing knowledge of skills of health workers regarding eye care in children sufficient to meet needs?

Kishiki, Elizabeth; Hogeweg, Margreet; Dieleman, Marjolein; Lewallen, Susan; Coutright, Paul

A study of two districts in Tanzania. Health care workers were interviews and given questionnaires about eye conditions, and data for the frequency of children’s eye cases was collected. 50% knew the effect of albinism on vision, with 44% expecting they would have to be educated in a special school for the blind, with braille. The authors conclude with speculation regarding the implications of this data.

Journal article 2012 (Medicine, Healthcare, and Education)          

http://inthealth.oxfordjournals.org/content/4/4/303.full.pdf+html            

 

Skin cancers among albinos at a university teaching hospital in Northwestern Tanzania: a retrospective review of 64 cases        

Mabula, Joseph, B; Chalya, Phillipo L; Mchembe, Mabula D; Jaka, Hyasinta; Gitti, Geoffrey; Rambau, Peter; Masalu, Nestory; Kamugisha, Erasmus; Robert, Ssentongo; Gilyoma, Japhet M

A study, at the Bugando medical centre, Tanzania, covering 64 cases of skin cancer in people with albinism. The authors Identify UV exposure as a major factor, and suggest more public education and government assistance with medical costs, to address the issue of people delaying the start of treatment, or abandoning it midway.

Journal article 2012 (Medicine and Healthcare)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3483204/pdf/1471-5945-12-5.pdf

                              

Albinism for the busy clinician             

Levin, Alex V; Stroh, Eliza                      

A detailed medical and genetic description of albinism. Some references to people with albinism in Africa, regarding skin cancer and the societal situation of people with the condition.

Journal article 2011 (Medicine, Healthcare, and Genetics) (Technical)

http://ac.els-cdn.com/

 

Collaboration with traditional health practitioners in the provision of skin care for all in Africa              

Ryan, Terence J; Hirt, Hans-Martin; Willcox, Merlin                          

An article describing the Skin Care For All task force’s objective of integrating the approaches of modern medicine with those of traditional healers. Includes a description of how to undertake this integration, and concludes with a list of the task force’s specific aims. The authors draw attention to albinism and the relevant beliefs and attacks as an example of the importance of working with, and providing education to, traditional healers.

Journal article 2011 (Medicine, and Healthcare)                      

http://www.skincareforall.org/

 

Skin malignancy of the head and neck in Calabar, Southern Nigeria          

Asuquo, Maurice; Otei, O; Umana, A; Bassey, I; Ebughe, G         

Examines and discusses the skin problems found of the necks and backs of patients at a hospital in Calabar. Albinism is identified as a risk factor, with public education for early diagnosis and treatment suggested.

Journal article 2010

http://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=48732019&site=ehost-live

 

Skin cancer in albinos at the University of Calabar Teaching Hospital, Calabar, Nigeria         

Asuquo, M E; Otei, O O; Omotoso, J; Bassey, E E           

A study of the people with albinism and skin cancer seen over 7 years at a teaching hospital in Nigeria. 11% of skin cancer patients had albinism, with most patient turning to treatment later than is optimal. The authors suggest more public health education to address this.

Letter in journal/ Journal article 2010 (Medicine and Healthcare)

https://escholarship.org/uc/item/7xj545jx      

 

Skin cancers in albinos in a teaching hospital in eastern Nigeria- presentation and challenges of care

Opara, Kingsley O; Jiburum, Bernard C

A study, of records at a Nigerian university teaching hospital, of skin cancer patients with albinism. The authors provide details of treatment, and call for more protective measures to and public education be provided, and for more government financial assistance to avoid sufferers delaying or abandoning treatment.

Journal article 2010 (Medicine and Healthcare)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2936286/pdf/1477-7819-8-73.pdf               

 

Disability and HIV/AIDS- a systematic review of literature on Africa          

Hanass-Hancock, Jill                               

A review of the recent empirical research on disability and HIV/AIDS in Africa. The author notes a general lack of consideration of conditions like albinism that are not formally classed as disabilities.

Journal article 2009

http://www.biomedcentral.com/content/pdf/1758-2652-12-34.pdf

 

Hearing impairment in Tanzanians with albinism            

Jiwaji, Zoeb; Parker, Emily R A; Thevanayagam, Jonarthan T H; Naburi, Alfred; Grossman, Henning

A study examining hearing problems in a people in Tanzania (with a group of people with albinism and a control group). The group with albinism displayed a higher frequency of hearing impairments. Within that group, hearing impairments were found to be associated with fewer years of education, a finding discussed by the authors.

Journal article 2009 (Medicine and Education)

http://inthealth.oxfordjournals.org/content/1/2/178.full.pdf+html            

 

Skin cancers amongst four Nigerian albinos   

Asuquo, Maurice; Ngim, Ogbu; Bassey, Ekpo E; Ebughe, Godwin                

A study comparing the skin cancer of four patients with albinism with the skin cancer of patients without the condition, at a university teaching hospital in Nigeria. The authors conclude that their results emphasise the greater risk of skin cancer for people with albinism, with public education given as a recommendation.

Journal article 2009

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-4632.2009.04017.x/pdf

 

Cutaneous cancers in Calabar, southern Nigeria            

Asuquo, Maurice; Ebughe, Godwin                                      

A study of skin cancer patients at a university teaching hospital in Calabar, Nigeria. People with albinism accounted for a significant proportion of patients. The authors conclude by outlining the need for more public education regarding sun exposure, and the reduction of healthcare costs.

Journal article 2009

http://escholarship.org/uc/item/6jz5v3fg

 

Lack of adequate sun protection for children with oculocutaneous albinism in South Africa

Lund, Patricia M; Taylor, Julie S              

A case study of a school in South Africa- of the measures used by children with albinism to protect against the sun. The authors conclude that more school visits by dermatologists, empowering social education, and government provision of SPF sun cream are all needed.

Journal article 2008 (Medicine and Health policy)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2447834/pdf/1471-2458-8-225.pdf

 

Childhood autism in a 13 year old boy with oculocutaneous albinism: A case report                 

Bakare, Muidein O; Ikegwuonu, Nkeiruka N  

A case study of a boy in Nigeria with albinism and autism. The authors suggest that further research could be warranted to examine the possibility of genetic links between the two conditions.

Journal article 2008(Medicine and Genetics)  

http://www.jmedicalcasereports.com/content/pdf/1752-1947-2-56.pdf

 

Oculocutaneous albinism    

Grønskov, Karen; Ek, Jacob; Brondum-Nielson, Karen

A medical guide to oculocutaneous albinism, that touches briefly on genetic counselling and management of eye and skin problems.

Journal article 2007 (Medicine and Genetics)

http://www.ojrd.com/content/pdf/1750-1172-2-43.pdf               

 

Epidemiology of skin cancer arisen from the burn scars in Nigerian Ibos 

Onuigbo, Wilson I B                                

Analyses the records of burns resulting in Squamous cell carcinoma (a form of skin cancer) in the Ibos ethnic group in Nigeria. Discusses how albinism puts people at greater risk of skin cancer, and calls for more research of this.

Journal article 2006

http://ac.els-cdn.com/

 

The Tanzanian human albino skin     

Luande, J; Henschke, Claudia I; Mohammed, Nasoro   

A study of skin cancer in people with albinism at the Tanzania tumour centre. The authors found that most of the cases were of squamous cell carcinoma, mostly situated in the head and neck. The authors hypothesise regarding the factors affecting damage from sun exposure for people with albinism.

Journal article 2006

http://onlinelibrary.wiley.com/

 

Knowledge and attitudes concerning medical genetics amongst physicians and medical students in Cameroon (sub-saharan Africa)            

Wonkam, Ambroise; Njamnshi, Alfred K; Angwafo III, Fru F

A study of medical students and doctors in Cameroon, using surveys, regarding genetics. The authors claim their data shows a general lack of knowledge of genetic tests. Includes reference to albinism and its prevalence in parts of Africa, and concludes with suggestions for improvements to how genetics is covered on medical courses.

Journal article 2006 (Medicine and Genetics)

http://www.nature.com/gim/journal/v8/n6/pdf/gim200658a.pdf             

 

Lip cancer in Zimbabwe- report of 14 cases    

Chidzonga, M M                   

A study of lip cancer patients in Zimbabwe- 50% of sufferers had albinism. The author suggests that lack of melanin may account for people with albinism being at greater risk.

Journal article 2005

http://ac.els-cdn.com/

 

Cancer stalks Tanzania’s albinos       

Dickinson, Daniel                                     

A brief article about the risk of skin cancer for people with albinism in Africa.

Website article 2003 (Medicine, Healthcare)                    

http://news.bbc.co.uk/1/hi/world/africa/2982116.stm

  

A health intervention programme for children with albinism at a special school in South Africa            

Lund, Patricia M; Geigher, Retha       

A case study of a school in South Africa, investigating the health of affected children, their perceptions of their condition, and their opinions about education for children with albinism. The authors argue for small-scale intervention that actively involves the children and their parents and is specific to their culture. Special schools are identified as an ideal environment for such initiatives.

Journal article 2002 (Medicine, Education, and Healthcare)

http://her.oxfordjournals.org/content/17/3/365.full.pdf+html   

 

A visit to Eden: Living and working at the Regional Dermatology Training Centre in Tanzania               

Nordlund, James J                                    

A volunteer writes of his time at the Regional Dermatology Training Centre in Tanzania, including about albinism, and the care and information the Centre provides for people with the condition.

Journal article 2000 (Medicine and Healthcare)

http://ac.els-cdn.com/

                                                    

An investigation into a possible relationship between vitamin D, parathyroid hormone, calcium and magnesium in a normally pigmented and an albino rural black population in the northern province of South Africa

Cornish, Daryl A; Maluleke, Vusi; Mhulanga, Thulani    

A study of children at a school, some with albinism, some without, to determine levels of vitamin D and parathyroid hormone (which regulates calcium levels). The children had the same diet, but those with albinism displayed higher levels of vitamin D and lower levels of parathyroid hormone. The authors suggest that their results show that those affected by albinism have different (lower) vitamin D requirements than their peers.

Journal article 2000

http://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=4831924&site=ehost-live

 

From sunlight to actinic keratosis to squamous cell carcinoma    

Cohn, Bruce A                          

The second half of the article discusses the high risk of skin cancer for people with albinism. Concludes with an insistence that all possible care and treatment must be made available for at risk individuals, without which many will suffer severe health consequences.

Journal article 2000 (Technical)

http://ac.els-cdn.com/

 

An overview of oculocutaneous albinism in South Africa

(Starts on page 41 of “Vision rehabilitation”(CRC Press))                

Sacharowitz, Hazel S

A study of forty optometry patients with albinism, with some technical discussion of their sight problems. In the conclusion the author declares a belief that people with albinism are significantly more aware of treatment options than in the past, and provides specific optometric treatment suggestions.

Book chapter 2000 (Technical)

http://books.google.co.uk/books? (Google books preview, incomplete)

 

Sun education in Africa: Nigeria and West African sub region     

George, A O                             

Discusses the higher risk of skin cancer for Africans with albinism, and calls for more health education regarding preventative measures such as sun cream and working indoors, as well as more access to regular health checks.

Journal article 1998 (Medicine and Healthcare)                

http://ac.els-cdn.com/

 

Pigmented skin lesions in tyrosinase-positive oculocutaneous albinos: A study in black South Africans

Bothwell, Janet E                                   

A study of patients with albinism, to determine the prevalence of different types of skin lesions, which is compared with a control group (without albinism). The authors found that pigmented nevi (moles) are found on ethnically black people with albinism in a similar frequency to on ethnically white people without the condition. They also found “dendritic freckles”, which they believe to be only found on subjects with albinism, and caused by sun exposure.

Journal article 1997 Medicine and Genetics (Technical)

http://onlinelibrary.wiley.com/doi/10.1046/j.1365-4362.1997.00259.x/pdf            

 

Vision in albinism                  

Summers, Gail                                                      

A detailed study, using 40 subjects, on the vision issues associated with albinism, including investigation the development of vision.

Journal article 1996 Medicine (Technical)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1312119/pdf/taos00005-1110.pdf

                                                    

Actinic lentigines versus skin cancer risk in albinos in northern Tanzania  

Lookingbill, Donald P; Lookingbill, Georgia L; Leppard Barbara                       

A study of skin cancer amongst a group patients with albinism. Actinic lentigines (a type of dark spots) were indetified as possibly being indicators of a lower risk of certain forms skin cancer for people with albinism, although the authors state that more subjects and investigations are needed.

Journal article 1995              

http://ac.els-cdn.com/

 

Actinic skin damage and skin cancer in albinos in northern Tanzania: Findings in 164 patients enrolled in an outreach skin care program  

Lookingbill, Donald P; Lookingbill, Georgia L; Leppard Barbara     

Explains, with medical detail, the skin complaints, including skin cancer, of a sample of people with albinism in northern Tanzania. The authors suggest preventative measures, noting that avoiding the sun may be almost impossible, and therefore focusing on sun protection.

Journal article 1995 (Medicine and Healthcare)

http://ac.els-cdn.com/

 

Oculocutaneous albinism among schoolchildren in Harare, Zimbabwe      

Kagore, F; Lund, Patricia M                  

A study based on a survey of schools in Harare, Zimbabwe, to determine the prevalence of albinism. The survey also found that in most cases some special provision for these students at their schools. However, none of the 31 subjects with albinism had glasses or understood that it was an inherited condition.

Journal article 1995 (Medicine and Genetics) 

http://jmg.bmj.com/content/32/11/859.full.pdf+html                  

 

Sun exposure and non-melanocytic skin cancer              

Kricker, Anne; Amrstrong, Bruce K; English, Dallas R      

A detailed article about skin cancer, and the frequency at which it is found in different groups. Refers to people with albinism in Africa.

Journal article 1994 Medicine

http://www.jstor.org/stable/3553044              

 

Skin cancer in African albinos             

Yakubu, Alkassim; Mabogunje, Oluwatope    

A study of patients, some with and some without albinism, with skin tumours, at a university hospital in Nigeria. The authors found that squamous cell carcinoma was the most common tumour type for those with albinism, contrasting with the most common for ethnically white people (which is basal cell carcinoma, which was still found in people with albinism more frequently than in people without the condition).

Journal article 1993          

http://informahealthcare.com/doi/pdf/10.3109/02841869309092440    

 

Primary malignant skin tumours in Nigerians.                        

Datubo-Brown, D D                                             

A study of skin cancer patients at a university teaching hospital. The author notes that only three of seventeen patients had albinism, and makes the point that darker skin does not provide complete protection from the sun. The author also notes differences in susceptibility between people with albinism and ethnically white people, and suggests regular dermatological checks.

Journal article 1991

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2627056/pdf/jnma00882-0079.pdf

 

 

Primary focus: Healthcare

 

BASF and Regional Dermatology Training Centre (RDTC) in Tanzania develop sunscreen for people with albinism          

Specific author not provided (M2 PressWire)                                       

A description of the development, by the BASF chemical company of a new sunscreen to be provided (by the Regional Dermatology Training Centre) to people with albinism in Tanzania.

Press release/Journal article 2014 (Healthcare and Healthcare industry)

http://search.proquest.com/docview/1558985494

 

Doctors alleged to misguide persons with albinism- UTSS             

Specific author not provided (IPP Media)                                              

A news story about claims that some doctors in Tanzania have advised people with albinism to seek traditional healing methods in place of medical skin cancer treatment. The article also claims that many people with albinism fail to get the appropriate treatment because of delays due to bureaucracy and delayed referral. Includes quotes from Under The Same Sun.

Website article 2014 (Healthcare and Human rights)     

http://www.ippmedia.com/frontend/index.php?l=69972

 

Roles of genetic counselors in South Africa

Kromberg, Jennifer G R; Wessels, Tina-Marie; Krause, Amanda 

A study using data from questionnaires, records ,and university statistics, of the activities of genetic counsellors in chosen regions of South Africa. Explains how genetic services operate in the country, and the different aspects of the counsellors work, and concludes that the country’s need for these professionals is not being met. (Specifically mentions albinism only briefly, but genetic counselling as a measure has been highlighted as key by other articles.)

Journal article 2013 (Healthcare and Genetics)                 

http://link.springer.com/article/10.1007/s10897-013-9606-2    

 

Availability knowledge and use of sunscreen products by people with albinism in Dar es Salaam region- Tanzania          

Kagashe, Godeliver A B; Maragesi, Sheila M;Mynene, Aaron

A study, using interviews with people with albinism and visits to pharmacies, to investigate what appropriate sun cream products are available in Dar es Salaam, and how aware people with albinism are of the need to use them . The authors concluded that people with the condition understood the importance of these products, but were often unsure on details such as how much to apply and when. The products were available in pharmacies, but at a high price which many could not afford, and so more state provision is suggested.

Journal article 2013              

http://www.irjpas.com/File_Folder/IRJPAS%203(6)70-74.pdf    

 

Stiefel and ILDS announce completion of first year of hats for skin health campaign                

Specific author not provided (Professional services close-up)                           

A description of a campaign by the company Stiefel with the International League Dermatological studies (IDS) to distribute sun hats to people with albinism in Tanzania. The Regional Dermatology Training Centre (RTDC) is also mentioned.

Press release/Journal article 2012 (Healthcare and Healthcare industry )

http://search.proquest.com/docview/928857757         

 

Attitudes and beliefs of an albino population toward sun avoidance: Advice and services provided by an outreach albino clinic in Tanzania                 

McBride, Sandy R; Leppard, Barbara J                

A study using a survey of outreach clinics in 1997, to examine the expectations of the clinic from people with albinism, and their knowledge of sun-protection issues. The authors findings include beliefs about skin cancer and factors affecting protection methods such as hats.

Journal article 2002          

http://archderm.jamanetwork.com/article.aspx?articleid=478813

 

Sun education in South Africa             

Schulz, E Joy                             

An article examining sun-safety education in South Africa. The author notes that there are signs that people with albinism in Johannesburg have access to free sun cream and sun-safety education, and that this appears to be having a positive effect.

Journal article 1998 (Healthcare and Medicine)                

http://ac.els-cdn.com/

 

 

Primary focus: Environment

 

The consequences for human health of stratospheric ozone depletion in association with other environmental factors  

Lucas, R M; Norval, M; Neale, R E; Young, A R; De Gruijl, F R; Takizawa, Y; van der Leun, J C

An article examining the changes in UV exposure due to ozone changes. Discusses the increased risk of skin cancer for people with albinism.

Journal article 2014 (Environment and Medicine)

http://pubs.rsc.org/en/content/articlepdf/2015/pp/c4pp90033b

 

 

Primary focus: Biology

 

Abnormal births and other “ ill omens”             

Hill, Catharine M; Ball, Helen L                 

An investigation of the reasons behind infanticide in cases of abnormal birth (including babies with albinism). The authors argue that the “ill omens” seen in such cases can act as biological indicators of a decreased probability of survival. The authors suggest that therefore parents may be evolutionarily predisposed to infanticide in such situations. African contexts and albinism are referred to.

Journal article 1996 (Biology and Society)          

http://link.springer.com/article/10.1007/BF02732900