Apu Sarker was showing me an open palm in a video call from his home in Bangladesh. Nothing seemed unusual at first, but when I looked more closely, I could see the smooth surfaces of my fingertips.
Apu, 22, lives with his family in a village in the northern Rajshahi district. He worked as a medical assistant until recently. Her father and grandfather were farmers.
The men in Apu’s family seem to share a genetic mutation so rare that it appears to affect only a small group of families in the world: they have no fingerprints.
In Apu’s grandfather’s day, not having fingerprints was no big deal. “I don’t think he ever thought of it as a problem,” said Apu.
But over the decades, the small grooves that revolve around our fingers – known as dermatoglyphs – have become the most collected biometric data in the world. We use them for everything from going through airports to voting and opening our smartphones.
In 2008, when Apu was still a boy, Bangladesh introduced national identity cards for all adults and the database required a fingerprint. The perplexed employees did not know how to issue a card to Apu’s father, Amal Sarker. Finally, he received a card with “NO DIGITAL PRINTING” stamped on it.
In 2010, fingerprints became mandatory for passports and driving licenses. After several attempts, Amal managed to obtain a passport showing a medical advice certificate. He never used it, partly because he fears the problems he may face at the airport. And although riding a motorcycle is essential to his agricultural work, he never obtained a driver’s license. “I paid the fee, passed the exam, but they did not issue the license because I was unable to provide the fingerprint,” he said.
Amal carries the license payment receipt, but it doesn’t always help him when he’s stopped – he was fined twice. He explained his condition to both perplexed policemen, he said, and held up the soft fingertips for them to see. But neither waived the fine.
“This is always an embarrassing experience for me,” said Amal.
In 2016, the government made it mandatory to compare a fingerprint with the national database to buy a Sim card for a cell phone.
“They looked confused when I went to buy a Sim, their software froze every time I put my finger on the sensor,” said Apu, with a wry smile. Apu was denied the purchase, and all male members of his family now use Sim cards issued in his mother’s name.
The rare condition that probably afflicts the Sarker family is called Adermatoglifia. He became widely known in 2007, when Peter Itin, a Swiss dermatologist, was contacted by a woman in the country in her late thirties who was having trouble entering the United States. His face matched the photograph in his passport, but customs officials were unable to register any fingerprints. Because she had none.
Upon examination, Professor Itin found that the woman and eight members of her family had the same strange condition – flattened fingertips and a small number of sweat glands on their hands. Working with another dermatologist, Eli Sprecher, and graduate student Janna Nousbeck, Professor Itin examined the DNA of 16 family members – seven with fingerprints and nine without.
“Isolated cases are very rare and no more than a few families are documented,” Professor Itin told the BBC.
In 2011, the team identified a gene, SMARCAD1, which mutated in the nine unprinted family members, identifying it as the cause of the rare disease. Virtually nothing was known about the gene at the time. The mutation did not appear to cause any other harmful health effects other than the effects on the hands.
The mutation they looked for during those years affected a gene “about which nobody knew anything,” said Professor Sprecher – hence the years it took to find it. In addition, the mutation affected a very specific part of the gene, he said, “which apparently had no function, in a gene without a function”.
Once discovered, the disease was called Adermatoglifia, but Prof Itin nicknamed it “immigration delay disease”, due to the problem of his first patient entering the United States, and the name stuck,
The disease that delays immigration can affect generations of a family. Apu Sarker’s uncle Gopesh, who lives in Dinajpur, about 350 km (217 miles) from Dhaka, had to wait two years to obtain an authorized passport, he said.
“I have had to travel to Dhaka four or five times in the past two years to convince them that I really have this condition,” said Gopesh.
When his office started using a fingerprint presence system, Gopesh had to convince his superiors to allow him to use the old system – by signing a time sheet every day.
A dermatologist in Bangladesh diagnosed the family’s disease as congenital palmoplantar keratoderma, which Professor Itin believes has turned into secondary adhermatoglyphia – a version of the disease that can also cause dry skin and reduced sweating on the palms and feet – symptoms reported by Sarkers.
More tests would be needed to confirm whether the family has any form of adhermatoglyphics. Professor Sprecher said his team would be “very happy” to help the family with genetic testing. The results of these tests may bring some certainty to the Sarkers, but no relief from the day-to-day difficulties of navigating the world without fingerprints.
For the afflicted Sarkers, society seems to be becoming increasingly difficult to control, rather than evolving to accommodate its condition. Amal Sarker lived most of his life without much trouble, he said, but he felt sorry for his children.
“It is not in my hands, it is something I inherited,” he said. “But the way my children and I are dealing with all kinds of problems, for me it is really painful.”
Amal and Apu recently obtained a new type of national identity card issued by the Bangladeshi government, after presenting a medical certificate. The card also uses other biometric data – retinal scanning and facial recognition.
But they still can’t buy a Sim card or get a driver’s license, and getting a passport is a long and time-consuming process.
“I am tired of explaining the situation indefinitely. I asked many people for advice, but none of them managed to give me a definitive answer,” said Apu. “Someone suggested I go to court. If all options fail, this is what I have to do.”
Apu hopes to get a passport, he said. He would love to travel outside Bangladesh. He just needs to start his app.
Photographs courtesy of the Sarker family.