When he was little, Adriano Berjillos listened to his father tell family stories. He knew that he had an ancestor, one of those whose degree of kinship is measured in “greats,” who came from Germany. That’s where he got his white skin and blonde hair, he told her. 30 years later, he repeated it in an email from 23andMe. Berjillos paid about 100 euros, spat into a test tube and a few weeks later was able to take a look at his own DNA. “Welcome to yourself,” the email said. The family legends took a tangible shape when he discovered that he, in fact, had 4.5% Franco-German blood. That he had a good chance of having white skin and blonde or brown hair. That he didn’t have freckles. That, surely, he would have the big toe longer than the rest. “And he got everything right,” he says, surprised.
He also told him that he had less than 1% Ashkenazi ancestry, a Jewish community that settled in central Europe in the 9th century. This community, along with the Chinese, was the main objective of a group of hackers that last September he accessed the 23andMe databases to steal genetic profiles. They put Berjillos’s, and that of four million other users, for sale in a forum of the deepweb. It was assumed that some health insurers might be interested. Or some tabloids, since they included, with names and surnames, the genetic profiles of famous people. Other information suggested that the real purpose was to blackmail the company with reputational damage.
Berjillos doesn’t care about all this. In Europe there is public and total healthcare, he had already shared his data on Forocoches. He doesn’t think having a very long big toe is particularly interesting information or worth hiding. At the time of speaking with EL PAÍS he had not even checked his email to see if his data had been stolen. “Hey, yes,” he will add in a later audio. “I checked and sure enough, they sent me an email.”
Data is the oil of the digital economy and in recent years, millions of people have uploaded their DNA data to the internet, which could be a problem. Maybe not for someone like Berjillos, but users with genetic malformations, public profiles or belonging to ethnic minorities in racist contexts (such as the Uighurs in China or the Rohingya in Burma) may have more misgivings.
The majority of clients of this technology (up to 80% in the case of 23andMe) agree to have their genome used for medical research. And this, in addition to interesting studies, brings great benefits. In 2018, 23andMe reached an agreement with one of the largest pharmaceutical companies in the world, GlaxoSmithKline, for more than 300 million dollars for the “development of new drugs.” Before this deal there were more than a dozen similar agreements. This data is usually anonymized, but a magazine study Nature, of 2021, warned about residual risk of individual identification.
“Most large companies in the sector make profits by selling their clients’ genetic data,” they point out on the Spanish company’s website. 24Genetics. “We do not”. Its president, Nacho Esteban, explains that European laws are much more guaranteeing than American ones. “That’s the Wild West of data,” he summarizes. But he also emphasizes that it is an anonymized sale, and points out that the use of this data for scientific purposes can be positive. “We, for example, did research on genetics and how it affects covid. We did it for free and we were published in Nature”.
The data is kept online to be updated with the scientific advances that occur in this field in a notable way. And to connect family members as they create a profile. The thing started as a Facebook of genes, but little by little, it is composing a puzzle of humanity’s DNA. And there are already so many pieces that it is often possible to locate even the missing ones.
It is estimated that a record of genetic profiles of 2% of the adult population of a country would be enough to locate the relatives of any citizen from an anonymous DNA sample. According to a study by JAMA Insights, in 2021 more than 26 million tests had been carried out. Three years later, only the two largest companies, 23andMe and Ancestory, far exceeded that figure, reaching 33 million. The numbers are growing exponentially. “We don’t know how many profiles there are of the Spanish population, but in the United States, the probability of locating someone is very high,” says Antonio Alonso, geneticist and director of the National Institute of Toxicology and Forensic Sciences.
Alonso highlights the multiple implications that this can have. To begin with, in the field of police investigation, where it will be possible to find almost any criminal with a DNA sample. In 2018, the Sacramento police arrested, after more than 40 years, the so-called Golden State Killer, one of the largest serial killers and rapists in the history of the United States, thanks to gene banks. A researcher uploaded a genetic sample of the mysterious killer to GEDmatch. Thus they began to find distant relatives, until the circle was closed on Joseph James DeAngelo Jr. The case went around the world due to the fame of its author, but it is far from being unique. “We have already investigated 700 cases with this technique, many of them solved,” says Alonso. “Especially in the US, but also in Europe.”
Until now, for these cases, CODIS was used, a computer program (created by the American FBI, but used in many European countries) that contains data from DNA profiles of convicted people, found evidence and missing people. This studies about 20 or 25 regions of DNA. But in recent years, with the popularity of public databases, managed by private companies, a new form of research has opened up. There are tens of millions of people in these, not a few thousand. And its analysis is much more exhaustive. “There, not 20, but 600 thousand regions of the genome are being analyzed,” highlights Alonso. “That’s why they are so effective.”
They are individuals, people who want to know how much Viking blood is in their blood, what genetic malformations they can develop or if they have a fourth cousin who lives in Australia. But in the process, you can give the information necessary to put a family member in jail. Before, the possible needle was recorded. The entire haystack is now being searched, but in such detail and methodically that any needle can be triangulated. Thanks to DNA databases and working with public records and social networks, you can reach the correct branch of the correct family tree, narrowing down the mystery person until the number of suspects is reduced to a dozen. “This does not take you directly to the criminal, but to a group of family members up to the fourth degree,” explains Alonso. “Then you have to investigate, who that person is, the geographical and temporal dimensions, the age of this individual.”
But in Spain, the police do not use the databases of these companies. Begoña Sánchez, commissioner and director of the Scientific Police, confirms this to EL PAÍS. “In these cases CODIS is used,” she adds. Sánchez recognizes that accessing the enormous records of private companies could help in the resolution of a case, but it is not the technology, but the law that prevents this. “How far does the consent of someone who uploads their genetic profile to these platforms go?” she asks. She senses a judge’s response, so she doesn’t even try. “We are not going to risk having an investigation launched against us,” she sums up bluntly. CODIS has certain limitations. It only mentions the sex of the person, when technology already allows for a much more detailed description. “This is the future, but it has to be accompanied by appropriate legislation,” summarizes the commissioner. “We are going towards massive sequencing.”
Files are destroyed, genes are not
It is not only the police who are interested in triangulating an unknown person through genetic material. Alonso is helping to set up a State DNA Bank of victims of the Civil War and the dictatorship. The tool will help identify remains from mass graves of murdered people, but will also include the genetic profiles of people allegedly affected by baby thefts, although he recently pointed out in this newspaper that he does not know of any cases.
These types of investigations are also quite common in adopted people searching for their origins. Many of them began doing genetic tests years ago, to find out possible predispositions to developing diseases. But with the advancement of biotechnology, this procedure has become a tool to locate biological family.
“Files can be destroyed, but genes cannot. The only thing that will never disappear is DNA,” says Beatriz Benéitez, family mediator and president of the association. The voice of the adopted. She has never used it, but she has accompanied many people on this path. “I always guide them and advise them to do it,” she confirms. It’s what she did with Mar Anes. “My intention was to find a direct relative or someone who brought me closer to the same goal, perhaps a distant cousin,” explains Anes, a 52-year-old adoptee—and adopter—in an audio exchange. She got 1,500. One of the closest was Nelly, an 80-year-old fourth cousin. Now she is also her friend and they talk almost every day. Sometimes she sends him a photo and Nelly answers, “you have eyes just like this one or another cousin.” When she goes to the doctor, she reminds him of the family’s health history. They are simple phrases, but for Anes they mean the world. No one had looked for a resemblance of her until then, no one had told him about her background, not only medical, but family. “He is very pretty,” she admits.
Anes knows from his genetic profile that the majority of his family comes from León. But he regrets that genetic tests are not very popular there. That is why he has not been able to locate a closer relative. “I’m not doing an active search either,” she admits, “I don’t think I could handle another rejection.” But every few months she checks her profile on 23andMe again to check if there are any updates, if a new family member has taken the test. She knows it’s a matter of time.
Nacho Esteban also believes it. The businessman confirms that this sector has grown enormously in recent years, but believes that it is not a fashion but a trend. And that is far from stopping. “These technologies are increasingly capable of reading more data with greater precision and at a lower cost,” he says. This explains the increasing number of requests they are facing. The benefits are many and obvious. The risks include possible data leakage. Or for helping send a distant (and guilty) relative to jail. But the thing is, even if you are not in one of these enormous genetic data banks, there will always be a distant cousin, aunt or nephew who is. Your genetic material is already online, even if you have never been tested.
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