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.
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In 1976, by international accord, the disease was renamed “Hansen’s disease,” to avoid the discriminatory connotations of the previous term (Oliveira et al. 2003).
Decreto n° 968 (Brasil 1962).
The movement’s leaders present their political activism as a collective process as opposed to the judicial review of cases one-by-one, apparent in what scholars call the judicialization of patients’ rights in Brazil (Biehl and Petryna 2013).
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The lack (or adulteration) of personal ID documents, common in Brazilian history, may have been exacerbated, here, by the question of stigma linked to leprosy (see Maricato 2014).
Saliva samples were collected from 345 people in ten cities (Rio Branco, Cruzeiro do Sul, Manaus, Vitória, Betim, Três Corações, Belém, Natal, Porto Alegre e Santa Terezinha) from nine Brazilian states (Acre, Amazonas, Espírito Santo, Minas Gerais, Pará, Pernambuco, Rio Grande do Norte, Rio Grande do Sul e São Paulo). Of these 345 samples, 284 involve comparison with a possible relative (family groups with two or three samples) and 61 are destined to a “genetic bank” involving individuals who have not located their relatives. The DNA of these individuals remains in stock, awaiting the appearance of a possible relative with whom to run the test for biological relationship.
In some cases, the other person to be tested is not present at the moment and the researchers have to schedule a new time and place to collect the corresponding sample.
The tests were run with standard PCR-STR kits using 17 genetic markers. Samples were examined twice, through independent preparations on two separate days, according to international standards of quality control. Test results were interpreted by comparing samples from two individuals and determining, through the use of genetic population indexes, the probability of a biological link.
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We thank Hugo Bock and Maria Luiza-Saraiva Pereira (University Federal of Rio Grande do Sul - UFRGS) for their invaluable collaboration in the laboratory analysis; to Movimento de Reintegração das Pessoas Atingidas pela Hanseníase (MORHAN) for the logistic support during field trips.
Compliance with ethical standards
The research complies with the current Brazilian Ethics Guideline in Genetics and Anthropology. Participation in the study was entirely voluntary and the confidentiality of data was respected at all times.
Conflict of interest
Claudia Lee Williams Fonseca, Flávia Costa Biondi, Glaucia Cristina Maricato, and Lavínia Schuler-Faccini declare that they have no conflict of interest. This project was funded by the Brazilian Research Council (CNPq)—National Institute of Population Medical Genetics (INAGEMP)—process 573993/2008-4.
This article is part of the special issue on “Genetics and Ethics in Latin America”.
Claudia Lee Williams Fonseca and Flávia Costa Biondi contributed equally to this work.
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Fonseca, C.L.W., Biondi, F.C., Maricato, G.C. et al. Project REENCONTRO: ethical aspects of genetic identification in families separated by the compulsory isolation of leprosy patients in Brazil. J Community Genet 6, 215–222 (2015). https://doi.org/10.1007/s12687-015-0227-3
- Hansen’s disease
- Human rights