23 January 2018

Sell DNA

What happens if your genome is publicly available?

Novye Vedomosti

DNA information can be the same commodity as other data. Buyers can be, for example, pharmaceutical companies. There are already services that allow those who want to earn on their DNA directly.

One of them, the startup LunaDNA, is ready to buy genetic information in order to then sell it for medical research. He promises to pay with cryptocurrency – Luna Coins. The company has already attracted $2 million in seed funding. Through ICO she expects to raise another $40-50 million.

The decentralized genetic information market Zenome offers those who have decoded their genome to upload data to the service in order to order research or find a buyer. For calculations, its own currency is also provided – Zenome DNA Token. Another company, DNAsimple, pays for DNA samples with the usual money – $50 per sample.

Companies claim that all this helps science: the larger the DNA database, the more opportunities for research. People are offered easy earnings and claim that their privacy is protected. "The data is stored in encrypted form," he convinces Zenome. "Only the user decides who to grant access to."

However, experiments have shown that even depersonalized DNA data entering the market, under certain conditions, it is possible to identify a person. This creates opportunities for abuse – for example, discrimination in hiring, if the employer becomes aware of the candidate's genetic predisposition to certain diseases. It is difficult to say which part of potential sellers are sufficiently aware of the risks, although they are indicated by agreements drawn up by companies.

"Genetic data is becoming more and more accessible," says Bob Gelman, an American privacy consultant. – Like other medical characteristics, they can get to information dealers, compilers of personal dossiers and marketers. At the same time, they can be used to judge your relatives, too."


The market for genetic research is growing. Only in the testing sector, according to Credence Research forecasts, an average annual growth of 25% is expected – up to $340 million by 2022. The turnover of the biomaterials industry in 2018 is expected to be $22.7 billion.

For those who collect genetic information, its sales can bring tens of millions of dollars. A couple of years ago, 23andMe, which specializes in genome decoding, made a deal with the biotech corporation Genentech. For access to the data, according to Forbes, she paid $ 60 million. At the same time, it became known that 23andMe had agreed to cooperate with Pfizer.

Theoretically, the genetic characteristics of even one person can affect the success of research related to the development of new drugs. The dramatic story of Henrietta Lacks, an American woman who died of cancer in the early 1950s, is well known. The doctor, without informing her or her relatives, sent samples of her tissues for examination. As it turned out, the cells had a growth inhibition mechanism disabled, they could divide an infinite number of times. Based on them, an "immortal" cell line was created, which was used for various experiments and the development of drugs, including polio vaccines. Manufacturers have earned millions of dollars on them. At the same time, the woman's relatives were not paid anything.

Now companies are saying they are ready to share the revenue. "This kind of information is valuable, and we want everyone to understand it," says Michael Witz, one of the creators of Luna DNA. "Pharmaceutical companies pay a lot of money for such data," notes Genos founder Cliff Reid. "From an economic point of view, it is quite reasonable that people get a small part of it."

Genos is engaged in decoding the exome, the functional part of the genome directly responsible for the work of the body. Clients pay her several hundred dollars each, but they can return some of the money by providing their data for research. Another company, Gencove, offers partial genome decoding for just $60. She noted that low prices make it possible to cover costs, and additional income is provided by the subsequent sale of data.

However, the value of individual genetic information may be relative. And it may not be obvious to a person. The case of Henrietta Lacks may happen again. "There is a danger that unprofitable deals will be imposed on people who do not understand the value of specific data," says Peter Pitts, president of the Center for Medicine in the Public Interest, a former employee of the US Food and Drug Administration.


Genome decoding companies warn that the data can be transferred (or sold) for research if the client does not object. According to 23andMe, about 80% of its several million customers have given their consent. AncestryDNA notes that both the actual data and the genetic material – saliva samples stored in it - can be used.

However, agreements with clients are not always obvious. AncestryDNA emphasizes that it does not claim the rights to someone else's DNA. However, it gets ample opportunities for its use. "By providing DNA, you authorize the company to store, process, analyze, transmit and distribute your genetic information for purposes related to the provision of services, research conducted by the company, as well as the creation of personalized products," its rules state. These rights are granted free of charge and may be transferred to third parties. It also states that the client does not receive any rights to commercial products that can be developed using his DNA.

"The company says it doesn't own your DNA, but actually gets the rights to it," says lawyer Joel Winston, who is engaged in consumer protection. "She can keep it for years, using it for research for her own purposes."

The client, the source of DNA, still has opportunities for control – he can, for example, demand that the company delete his data. However, he may lose control when the information gets to third parties. "Supporting clinical trials is a good thing," he notes Peter Pitts. – But it may happen that your data will be bought by one company, then resold by another. How are they eventually used? You may not know this in advance."


One of the most obvious is that information can get to marketers who use it for targeted advertising. "If I decided to share my genetic data for the sake of science, I would not want to be bombarded with spam after that – for example, about the treatment of a disease that can be found in me," former US President Barack Obama said, commenting on this topic.

Companies that gain access to someone else's DNA try to dispel such concerns (23andMe emphasizes that "it does not use it for advertising purposes"). But there were also attempts to do otherwise by creating an appropriate business model. A few years ago, the American company Miinome openly offered to collect genetic data in order to then sell it to advertisers. In return, consumers were promised free DNA decryption.

The idea has not received serious development. But, perhaps, it's a matter of time – already now, for example, some are ready to give companies detailed data about their physical parameters so that they pick up their clothes. "There are huge opportunities for growth here," noted geneticist Michael Schatz from the Cold Spring Harbor laboratory. "In the future, genetics will certainly become one of the factors that large retailers will take into account."

Over time, according to Artem Elmuratov, one of the founders of Genotek, such information can be integrated into social networks. "Now both VKontakte and Facebook are fighting to ensure that users are identified. This is the new normal. Genetics will easily fit in here," he noted in an interview with Republic. "First through genealogy, then through health care. Over time, this will grow into the fact that people will receive even more personalized information from social networks. Genetics will be another brick in the Facebook algorithm."

At the same time, spam is probably the least of the risks. "If you link genetic information to a specific person, there are large–scale opportunities for abuse," Forbes wrote a couple of years ago. – Imagine that an election candidate receives – and makes public – information about an increased risk of Alzheimer's disease in a competitor. Or the employer will refuse to accept the applicant, because he learns that he or she had relatives with autism. Imagine a world where such data can be used against you."


When information about someone else's DNA is transferred to a third party, it does not include personal data of a person that allows him to be identified. But anonymity is not absolute. It's not just about the possibility of leaks and hacker attacks. Companies recognize that theoretically, using information from different sources, it is possible to find a specific person by the genetic code. "This is not a common practice, but it is possible, especially if the genetic information – yours and your relatives – will be in different databases," explains AncestryDNA. "In the future, with the development of technology, this may become more common."

"Given the uniqueness of DNA and the abundance of information sources, it is incredibly difficult to achieve complete anonymity," states Laura Rodriguez, one of the heads of the US National Institute of the Human Genome. "It is hardly possible to talk about any absolute guarantees regarding such information."

A number of studies concerning deanonymization confirm this. One of them, published by Swiss scientists a few years ago, was devoted to the analysis of a part of the genetic code that determines phenotypic traits (for example, eye color or blood type). The authors identified some of the familiar people by profiles published in the open DNA database. Another work considered a possible relationship between the structure of the Y chromosome and the surname, which may be an indicator of kinship. In this way, theoretically, it is possible to determine the surname by comparing part of the code with open databases, and then, if other information is available, such as age and region of residence, to find a specific person.

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