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

Abstract

Over the past three decades, there has been an accelerated development of genetic technology, leading to its use in human genetic identification for many purposes. Additionally, it has been made explicit that identity is a fundamental human right. A number of historical circumstances have connected these developments. Personal identity is increasingly associated with the preservation and defense of human rights and is a tool to repair the violation of these rights, particularly the right to identity. In this article, we report the use of genetics to support the right to identity in two historical circumstances. First, we report the search, localization, DNA testing and genetic identification of 110 individuals who were appropriated as babies by the Argentine military dictatorship of 1976–1983 in the context of savage repression and egregious violations of human rights, including forced disappearance and suppression of identity. Second, we report on the repair of right-to-identity violations of hundreds of individuals that occurred during the process of compulsory isolation of patients with leprosy in Brazil through the Program “Reencontro”, which has led to the genetic identification of 158 pairs of individuals who previously did not have proof that they were siblings. The high value placed on genetic identification by victims of identity suppression did not counter the prevailing view that genetic factors were not more important than other factors (social, emotional, educational, cultural, spiritual) in determining the complex phenomenon of personal identity. The use of genetic identification as a tool to redress and repair human rights violations is a novel application of human genetics for the benefit of mankind.

Repercussion of Segregation in the Lives of Children Separated by Leprosy

“…Some close relatives, who were temporarily responsible for the children, walked to the adoption or the primary school for being daughters of lepers, and they fear the possibility of contagion. Thus, even without presenting the disease, they also lived reclusive, isolated in schools, like their parents in colonies [11,12].…”

“…The population identified this child as a patient relative with leprosy, acting with discrimination, stigma and social exclusion [11].…”

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

“…One of the authors (LS-F), member of INAGEMP, had been doing volunteer work unrelated to her specialty in medical genetics with the social movement MORHAN long before she involved the genetics team of students and researchers. She had been involved, through other forums of discussion, with the geneticist Vitor Penchaszadeh (Penchaszadeh 2012;Penchaszadeh and Schuler-Faccini 2014), who had been a key player in the reuniting of children sequestered by the military during the Argentine dictatorship with their original families. The involvement of a geneticist in helping the children of leprosy patients to reunite with their original families seemed to be a logical extension of this Bgenetics activism.^The project, registered at the Federal University of Rio Grande do Sul (UFRGS) as an BExtension activity,^was named BREENCONTRO,^and included other geneticists.…”

Human rights in pandemics: criminal and punitive approaches to COVID-19

“…Public health has a long history of using punitive and criminal approaches to address community health fears. For example, compulsory isolation of persons with leprosy, or Hansen’s disease, was public policy in several countries until well into the 20th century 1 2. Compulsory treatment and isolation for persons with tuberculosis (TB) was also practised historically,3 and while less common today, continues to occur, including through the use of criminal sanctions 4…”