The genetic condition constitutes me, but it does not define me

A collective biography of people with albinism in Brazil

Bibliographic Data

ID3081003
AuthorsDaphne Sarah Gomes Jacob Mendes (0009-0006-3229-8923, Universidade de Brasília), Marco Montagner (0000-0001-9901-0871, Universidade de Brasília), Maria Inez Montagner (0000-0003-0871-7826, Universidade de Brasília)
Year2025
Volume34
Issue2
Publication date2025-01-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueSaúde e Sociedade (JOURNAL)
Journal identifiersISSN: 0104-1290 • E-ISSN: 1984-0470
PublisherFapUNIFESP (SciELO) (PUBLISHER)
DOI10.1590/s0104-12902025240795en
OpenAlexW4411349069
LanguageEN
Citations received1
References cited8

Albinism is a relatively rare, non-contagious, genetically inherited condition still permeated by discrimination and stigmatization today. This research aimed to present the life experiences of people with albinism and their relationship with the condition, using their trajectories and narratives under a collective biography. Qualitative research was conducted using Merton's focused interview techniques and snowball sampling method. The collective biography was built to show the group's trajectory and experiences through an intertwined narrative of the participants' statements. These people's experiences were addressed in the dimensions of birth and family; adolescence and the school universe; the world of work and professional trajectory; healthcare and strategies for overcoming their condition. Throughout this group's trajectory, prejudice and stigmatization are experiences lived from the moment of birth and continue throughout life. We conclude that the lack of information perpetuates stigmas around the condition and prevents these people from accessing accurate diagnoses and necessary care. This situation emphasizes the urgency of implementing public policies that address this group's needs

Albinism · Art history · Biography · Biology · Sociology · Genetics · History · History of Medicine and Tropical Health · Race, Genetics, and Society

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