Literature DB >> 25966990

Project REENCONTRO: ethical aspects of genetic identification in families separated by the compulsory isolation of leprosy patients in Brazil.

Claudia Lee Williams Fonseca1, Flávia Costa Biondi, Glaucia Cristina Maricato, Lavínia Schuler-Faccini.   

Abstract

In this paper, we discuss the experience of a team of geneticists, working in partnership with a Brazilian social movement aimed at promoting the rights of victims of Hansen's disease. These university researchers propose to use DNA test results to ascertain kinship connections and thereby reunite families that were sundered apart by draconian state policies of the mid-twentieth century that decreed the forced segregation of leprosy patients and the institutionalization of their children. The team's aim is to help revert stigma and reinforce positive group identity as well as to facilitate judicial claims to moral and financial reparation from the Brazilian state. We will discuss how, notwithstanding the voluntary nature of tests, mediated at all times through the social movement, the geneticists take care to follow clear ethical guidelines in the collection and stocking of DNA samples as well as in the devolution of test results. The subsequent inclusion of anthropologists in the team brings to the fore new ethical dilemmas ranging from procedures in field research to the possible consequences of research results.

Entities:  

Year:  2015        PMID: 25966990      PMCID: PMC4524834          DOI: 10.1007/s12687-015-0227-3

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  8 in total

1.  Prophylaxis and exclusion: compulsory isolation of Hansen's disease patients in São Paulo.

Authors:  Yara Nogueira Monteiro
Journal:  Hist Cienc Saude Manguinhos       Date:  2003

2.  Hansen's disease control in the State of São Paulo: a historical analysis.

Authors:  Paula Araujo Opromolla; Ruy Laurenti
Journal:  Rev Saude Publica       Date:  2011-02       Impact factor: 2.106

3.  Ancestry, Temporality, and Potentiality: Engaging Cancer Genetics in Southern Brazil.

Authors:  Sahra Gibbon
Journal:  Curr Anthropol       Date:  2013-10

4.  [Isolated 'like us' or isolated 'among us'?: the controversy within the National Academy of Medicine over compulsory isolation of leprosy sufferers].

Authors:  Vivian da Silva Cunha
Journal:  Hist Cienc Saude Manguinhos       Date:  2010-12

5.  Social representation of Hansen's disease thirty years after the term "leprosy" was replaced in Brazil.

Authors:  Maria Leide Wand-del-Rey Oliveira; Carla Maria Mendes; Rachel Tebaldi Tardin; Mônica Duarte Cunha; Angela Arruda
Journal:  Hist Cienc Saude Manguinhos       Date:  2003

6.  Carville and Curupaiti: experiences of confinement and community.

Authors:  Cassandra White
Journal:  Hist Cienc Saude Manguinhos       Date:  2003

7.  Genetics and human rights. Two histories: Restoring genetic identity after forced disappearance and identity suppression in Argentina and after compulsory isolation for leprosy in Brazil.

Authors:  Victor B Penchaszadeh; Lavinia Schuler-Faccini
Journal:  Genet Mol Biol       Date:  2014-03       Impact factor: 1.771

8.  Genetic counseling and presymptomatic testing programs for Machado-Joseph Disease: lessons from Brazil and Portugal.

Authors:  Lavínia Schuler-Faccini; Claudio Maria Osorio; Flavia Romariz; Milena Paneque; Jorge Sequeiros; Laura Bannach Jardim
Journal:  Genet Mol Biol       Date:  2014-03       Impact factor: 1.771

  8 in total

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