How the grandmothers of disappeared children drove a revolution in genetics

The National Bank of Genetic Data has allowed over 130 people to recover their identities - and sparked a scientific revolution

“Martín, I am your grandmother,” 89-year-old Delia Giovanola, one of the founders of the Abuelas de Plaza de Mayo, said down the phone. It was November 2015. Delia was in Buenos Aires and 38-year-old Martín Ogando Montesano was in Miami. It was the first time in their lives that they had spoken.

“I saw that you’re on Facebook, I am too, please add me so we can remain in contact,” said Delia. Behind her, the array of scientists that made the reunion possible listened silently to every word, nodding, smiling and crying. They were watching history unfold before their eyes – a reunion 38 years in the making.

Eight months earlier, Martín had gone to Abuelas because he suspected that he was a son of desaparecidos — the 30,000 people kidnapped, held in clandestine detention centers and killed by the military dictatorship that took power between 1976 and 1983. The de facto government stole some 500 babies from the people they kidnapped and gave them up for adoption with forged identities.

The grandmothers of the stolen children founded the Abuelas de Plaza de Mayo organization to look for their grandchildren in 1977 — one year after the military took down the democratic government.

But it wasn’t until 1987, when President Raúl Alfonsín’s democratic government created the National Bank of Genetic Data (BNDG), that the foundations were laid for reunions like Martín and Delia’s. And it is possible because the BNDG, devised by the Abuelas themselves, changed the way the world understands genetics. Martín’s blood, for instance, was extracted in Miami and analyzed by the BDNG’s laboratories, which determined his DNA was a 99.9% match with Delia’s.

To date, 132 grandchildren have recovered their identities.

Among the people closely listening to Martín and Delia’s emotional conversation was Mariana Herrera Piñero, who had just been appointed as director of the BNDG. Martín was the first person to recover his identity under her tenure.

“It made me more aware of the horror of those times, but also of our role as scientists in this part of our country’s history. With each recovered identity, society as a whole also recovers a part of its identity,” Herrera Piñero told the Herald

“The Abuelas shouldn’t be nominated for the Nobel Peace Prize — they should receive a Nobel Science Award.”

The genesis of the bank

“Where are the children born in captivity?”, one Abuela famously shouted at a TV camera during the 1978 World Cup held in Buenos Aires.

How would the Abuelas ever find their grandchildren, who probably never knew who they were, and were scattered all over the country? How could they feasibly identify them if their parents disappeared?

In 1982, Abuelas Estela de Carlotto and María Isabel “Chicha” Mariani traveled to New York and met with Argentine geneticist Victor Penchaszadeh. Penchaszadeh had left Argentina in 1975 after the Argentine Anti-Communist Alliance (AAA), a right-wing terrorist group that operated during the Peronist government, kidnapped him for five days and threatened to kill him.

The Abuelas asked Penchaszadeh a simple question, albeit one that no scientist had ever asked and one that would revolutionize genetics forever. “Can we identify our grandchildren through our blood?” Back then, what they were saying was not even conceivable: parentage was determined not by DNA sequencing, but by a byproduct of DNA – protein variation. The blood of the person believed to be the parent was necessary to conduct the test.

Penchaszadeh couldn’t resist the challenge. “I received it as a mandate,” he told the Herald. “It meant a lot to me – I was doing science, but in the United States, where health is defined by commercial values.”

He put together a team, which was ultimately led by American geneticist Mary-Claire King. In addition to geneticists, the group was also made up of mathematicians such as Pierre Darlu.

King thought of using mitochondrial DNA and human leukocyte antigen serotyping genetic markers from dental samples, and in 1984 Darlu made the first draft of a statistical formula that would become the índice de abuelidad – the “grandparentage index.” The index guaranteed 99.99 percent efficiency in the determination of kinship and was used for the first time in 1984, when Paula Eva Logares, a girl who had been kidnapped together with her parents, recovered her identity.

That year, the Supreme Court of Argentina admitted the test as valid evidence.

“It had never been done before — proving somebody’s identity without accessing their parents’ genetic information,” Penchaszadeh told the Herald. “I always say that the Abuelas helped genetics redeem itself from its past abuses.”

In 1987, the National Congress created the BNDG, which since then has been in charge of resolving the filiation of the children stolen during the dictatorship. The Bank, unique in the world, stores samples of relatives who are looking for the children disappeared by the dictatorship, and of all the people who suspect they are children of the disappeared, and already left their samples in the Bank.

The BNDG usually works with the Argentine Forensic Anthropology Team (EAAF), created in 1986, and with the National Commission for the Right to Identity (CONADI), founded in 1994.

“This was one of the first times society demanded science to right a crime against humanity,” said forensic geneticist Mariana Herrera Piñero, who has directed the BNDG since 2015.

When Herrera Piñero started to work with Abuelas, the organization’s president Estela de Carlotto told her that she, Herrera, had three cousins who were disappeared. “My story here started with me finding out about my own family history,” Herrera told the Herald. “My family never wanted to speak about this.”

“I didn’t know my cousin was pregnant [when she was kidnapped by the military]. That part of the family is among the bank’s samples.”

The BNDG incorporated and developed a lot of technology since it was created. Martín’s blood was analyzed through specially designed software that compared it against 800 family samples. It’s a lot faster than in the 1980s, but the software still uses the original grandmotherage index.

Nowadays, Herrera Piñero says some 1,200 people a year have their blood analyzed. Last year, two grandchildren “recovered” their identity. For years, the government has been putting up ads that read “if you were born between 1975 and 1983 and have doubts about your identity, contact Abuelas.” 

But Herrera Piñero says the biggest wave of people going to Abuelas was in 2014, when the 114th grandchildren was “recovered” – Ignacio Montoya Carlotto, grandson of Abuelas’ president Estela de Carlotto.

The bank helps people recover their identity beyond Argentina – it has shared its knowledge with countries like Peru and Colombia which, due to their armed conflicts, need to identify thousands of their own disappeared people.

Many people who approach the bank are aged 44-45. Often, it is having children that prompts them to go. “They think – ‘if my identity has been infringed, so has my children’s’,” Herrera Piñero said. “It’s different when you have kids.”

In a conference last Tuesday, Herrera Piñero spoke about the possibility of developing a great-grandmotherage index.

Today, even after 132 grandchildren have recovered their identities, Vìctor Penchaszadeh still jumps for joy every time the Abuelas announce a new one.

“Each one is a reminder that they [the military junta] couldn’t get away with it.”


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