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Restoring Genetic Identity After Forced Disappearance and Identity Suppression in Argentina and After Compulsory Isolation for Leprosy in Brazil

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Restoring Genetic Identity After Forced Disappearance and Identity Suppression in Argentina and After Compulsory Isolation for Leprosy in Brazil Genetics and Molecular Biology, 37, 1 (suppl), 299-304 (2014) Copyright © 2014, Sociedade Brasileira de Genética. Printed in Brazil www.sbg.org.br Research Article 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 Victor B. Penchaszadeh1 and Lavinia Schuler-Faccini2,3 1Departmento de Ciencias de la Salud, Universidad Nacional de La Matanza, Buenos Aires, Argentina. 2Instituto Nacional de Ciencia e Tecnologia em Genetica Médica Populacional, Porto Alegre, RS, Brazil. 3Departamento de Genética, Universidade Federal do Rio Grande do Sul, Porto Alegre, RS, 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 increas- ingly 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 histori- cal 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 repres- sion 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 fac- tors 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. Keywords: genetics and human rights, suppression of identity, leprosy, Argentina, Brazil. Introduction ated with the preservation and defense of human rights, in Developments in human genetics over the past half- particular the right to identity, and is an excellent tool to re- century have been unprecedented and to the point that the pair the ominous consequences of right-to-identity viola- 21st century has been dubbed “the century of the genome”. tions and to bring those responsible to justice (United Na- However, the awesome discoveries and applications of ge- tions, 2009). netic technology should not allow us to forget that flawed In this paper we describe two histories that exemplify genetic concepts were used in the past to justify troubling the use of genetics in the defense of human rights. violations of human rights, such as eugenics, racism, dis- crimination, stigmatization of those who are “different” Restoration of Genetic Identity After Forced and even genocide (Müller-Hill, 1988; Kevles, 1995). Disappearance and Suppression of Identity in More recently, progress in forensic genetics has enabled its Argentina use in human genetic identification for different purposes. Additionally, it became explicit that the right of identity is a Background fundamental human right (United Nations, 1989). A num- During the dictatorship that ruled Argentina between ber of historical circumstances have connected these devel- 1976 and 1983, the military engaged in savage repression opments, and genetic identification is increasingly associ- and egregious violations of human rights, including the forced disappearance of 30,000 political dissidents Send correspondence to Victor B. Penchaszadeh. Departmento de Ciencias de la Salud, Universidad Nacional de La Matanza, Flo- (CONADEP, 1986). The disappeared included pregnant rencio Varela 1903, San Justo, Buenos Aires, Argentina. E-mail: women, babies and small children abducted with their par- [email protected]. ents. Abducted adults were taken to one of many secret 300 Penchaszadeh and Schuler-Faccini detention centers run by the military, where they were sav- gen typing, DNA technology was soon incorporated, and agely tortured and, with few exceptions, murdered. Preg- the forensic genetics laboratory of the BNDG kept abreast nant women were not spared torture and suffering during with developments in the field. Currently, testing is based their captivity, delivering their babies in humiliating cir- on the analysis of 15 short tandem repeats provided by the cumstances in military barracks or hospitals, only to be AmpF STRIdentifilerTM PCR Amplification kit (Applied murdered shortly after delivery. It is estimated that no less Biosystems) and GeneMapper Software (Applied Bio- than 500 babies were born in captivity to disappeared systems), complemented when needed with mitochondrial women (Van Boven, 1988; Andersen 1993) and their fate DNA analysis, following guidelines from recognized inter- varied: most commonly, they were kept as “war booty” by national forensic genetic bodies (Bär et al., 1997; Carra- someone within, or linked to the security forces. Birth cer- cedo et al., 2000; ICRC 2009). Genetic identification is tificates were forged, and the children were registered as bi- deemed positive when the inclusion probability of an indi- ological offspring of their appropriators. (Penchaszadeh, vidual with unknown identity of being a grandchild of puta- 1997). In a few cases, babies were anonymously left in in- tive grandparents is 99.9% or higher. stitutions for abandoned children or handed over to neigh- bors (OAS Organization of American States, 1978). In Results virtually all of the cases, the children were raised with their According to Argentina’s law, the genetic testing of a true identity suppressed. The appropriation of babies of dis- minor suspected of being the victim of forced disappear- sidents was part of a deliberate genocidal military policy ance and suppression of identity is mandatory through the based on the perverse conviction that those in power had courts, with heavy involvement of psychology profession- the duty of “freeing these children from the subversive edu- als, who care for the best interests of the child. When the cation” of their parents. true genetic identity of a disappeared child was deter- mined, he/she was informed of the results and put in contact Methodology with the biological relatives, and the true identity of the in- After the return of democracy in 1984, an intensive and dividual was legally restored. Over time, as appropriated prolonged search for the disappeared children began and children became adults, nuances appeared in the process. was led by the Abuelas (grandmothers) of Plaza de Mayo, a First, adults who suspect they are the offspring of disap- non-governmental human rights organization with the spe- peared parents acquired the right to request genetic testing cific mission of finding the children of their disappeared sons using the BNDG database through a special state agency and daughters. The constitutional government appointed a (CONADI: Consejo Nacional por el Derecho a la Iden- National Commission on the Disappeared (CONADEP, tidad) or through the courts. Second, the Supreme Court 1986), which requested the help of the American Associa- ruled in 2008 that when needed to uncover a crime of forced tion for the Advancement of Sciences (AAAS) to devise a disappearance and suppression of identity, the state had the statistical formula to genetically identify children in the ab- obligation of obtaining DNA for testing, and if the victim sence of their disappeared parents by comparing their ge- declined, DNA could still be obtained by non-invasive netic markers to those of putative grandparents. Eventually a means (i.e., extracted from personal belongings, such as “grandparentage index” was devised and successfully ap- tooth brushes and underwear). Between July1984 and Feb- plied in 1984 to identify the first appropriated child (Di ruary 2014, 110 individuals appropriated as children and Lonardo et al., 1984; Penchaszadeh, 1997, 2012). Soon, who had their identity suppressed, were genetically identi- many suspected appropriated children started to be localized fied while they were still minors, or as adults, and their true through various means (anonymous reports, reports from genetic identity was recovered (Penchaszadeh, 2012). survivors of detention camps, forged birth certificates, suspi- cious adoptions and others), and legal procedures for their Discussion identification started. All requests for genetic testing were It is impossible to describe in depth the horrifying ex- mandated by the courts, after proper legal, ethical and psy- periences of these 110 individuals who, at varying ages, chological handling of each suspected case. were informed that they were not the children of those, who The National Bank of Genetic Data (BNDG, by its until then, they had considered as their parents. They came initials in Spanish), created by law in 1987, developed a da- to know that their true parents had been
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