As the cost of sequencing an individual genome gets lower and more people have access to their genomic data, a question has arisen about data ownership. Namely, who owns or should own the data that are generated by genetic tests? While this is a debated question, many feel strongly that we should have the right to use and benefit from our own genetic data, according to Helen Albert at Labiotech.eu.
“I am convinced that I am the only one who has the right to own the information about my genome, it’s like the right to express my thoughts, the right to choose a job or religion. This is one of the basic human rights to dispose of our body and mind in the way we want,” emphasized Alexey Gorbachev, CEO of Russian biotech Zenome, one of the companies using blockchain and genomic data science to empower the consumer to control the use and sale of their own data.
The rise of direct to consumer genetic testing companies such as 23andMe, providing both ancestry and health testing options, has occurred quickly, Albert notes. Consumers have been signing away access to their own genetic data, often without realizing it, and several companies have profited hugely as a result. Companies like Zenome aim to combat this and give the power back to the individual.
In an age of personalized medicine, access to genetic data is a valuable commodity for pharmaceutical companies for developing new therapies and diagnostics.
“We see that by enabling the user to earn by sharing his personal information, we, on the one hand, help scientific progress and help the pharmaceutical industry to create new drugs, and on the other–guarantee a user’s privacy, hiding his or her sensitive information,” said Gorbachev.
Zenome and other companies in this space are using blockchain–made famous for being behind the digital currency Bitcoin–to help create a fair marketplace for genetic information. Put simply, blockchain is a type of information technology that does not rely on one central server, but instead all users are part of the network forming a “decentralized” server that is much more secure. It allows new information to be shared between two parties in a safe and anonymous way.
The human genome project started some 15 years ago. The rapid reduction in the price of whole genome sequencing since then means that it’s now much more affordable for an individual to have their genome sequenced. Just a couple of years ago, getting your genome sequenced would have cost around $10,000 (€8518), whereas whole genome sequencing is now being offered by companies such as Italy’s Dante Labs for as little as €399 ($468).
Albert notes that Israeli biotech DNAtix is one of those companies using blockchain to allow DNA data exchange between individuals. CEO, Ofer Lidsky, said:
“We are bringing a new possibility of participating in research, testing your DNA, storing your DNA and staying anonymous. It’s the safest genetics on the planet that will be available, because currently, any genetic test that you do, you are compromising your privacy. Someone knows who you are, and you have no control of where this information goes.”
“Each person owns his or her own DNA. If it’s DNA connected to their wallet and it’s encrypted, only they have access to their DNA. So if he or she wants to share it with a researcher they have to decide to participate in research and they will get rewarded in tokens for that.”
DNAtix has built its own blockchain to allow both anonymous data transfer of DNA sequence and also allow people to have their genomes sequenced anonymously.
In a public “proof-of-concept,” DNAtix successfully transferred the complete sequence of famous geneticist Craig Venter’s Y chromosome in June using its blockchain technology–the first company to transfer sequence in this way.
The US is currently leading the field when it comes to this space with companies such as Luna DNA, EncrypGen and Nebula Genomics, but both Gorbachev and Lidsky believe the market will continue to open up in Europe.
“From what we see currently, Europe is behind the United States, which is leading in direct-to-consumer genetics, but it’s [spreading] everywhere. I mean, all the countries of the world are soon going to have the possibility of direct-to-consumer genetics,” Lidsky predicts.
Genomic testing is ushering in a new age of medicine as we get closer to the $100 genome. Patients can be treated with much more precision, tailored-made to their own individual genetic makeups for more effectiveness. But radical change, even for the better, often brings ethical and societal issues we also need to consider.
One major concern is for the privacy and security of genomic data. For instance, policymakers in Washington recently threatened to make genomic data necessarily available to employers. Forbes’ Patrick Lin says that complicating the privacy issue is the fact that there’s no clear legal owner of genomic data; those data were found to be unpatentable and, because they lack authorship or a creator (legally), cannot be copyrighted.
“It seems the only way to have any control over your genomic data is to simply not get tested, keeping that data hidden ‘in’ one’s own body. But this defeats the entire point of most modern medical genomic technology,” Lin asserts.
We should get used to the notion that the blockchain currently is the go-to technology for digital privacy issues, delivering secure transactions without having to trust third-parties in industries as different as finance, real estate, health and genomics.
Already, different companies are betting on the need, based on the expected phenomenal growth of genomic data, for blockchain-based securitization of data. Besides some hype about the connection of blockchain and genomic data, viable business models and how to integrate the technology into the existing healthcare industry are far from clear.
Why should it make sense to combine the capabilities of blockchain technology and genomic data? At first glance, it makes perfect sense. There is little doubt that genomics will play a big part in the future of healthcare by providing data for personalized health, argues Alex Schmid for Front Line Genomics.
In addition, it is estimated that the amount of human genomic data doubles every seven months, in the long-term rivalling the huge data quantities of nuclear physics and astronomy.
Apart from the needed storage capacities for this amount of data, privacy and secure handling are a major concern for businesses and private genome owners. Genomic data are very sensitive to many kinds of possible breaches and exploitations, from higher health insurance fees based on chronic diseases revealed by personal genome data to the unauthorized use of genomic data for commercial drug development.
The blockchain is, in essence, a public, unhackable digital ledger of transactions of any kind. For example, no banks are required anymore for conducting (crypto) currency transactions, and all real estate transactions could be handled by the blockchain without a middle-man.
The key point of the blockchain, therefore, is the fact that it functions “trust independent.” There is no third party that the buyer and the seller must trust, and the parties involved don’t even have to trust each other at all. Thus, the blockchain digital infrastructure provides a secure transaction system for the exchange of products and services.
As a general concept, the blockchain clearly offers a valuable technology to manage and transact genomic data without compromising privacy. Yet the crucial aspect for every company active in the field is how to mold this technology into a valuable and scalable business model.
Technology is only part of the equation. Today, genomic data are generally widely disseminated among a multitude of institutions from hospitals, universities, research institutes, sequencing and analytics companies to private storage.
The challenge will be to fit the blockchain technology into the genomic and health landscape in general, as well as into the health systems of different countries. To date, the business models of genomic blockchain companies are mostly similar, with slight variations. Yet time will tell which business model can be expanded and refined until it is most suited to establish the blockchain as a technology to support our genomic future for the benefit of everyone.
NB: Let’s face it: Blockchain is the single most confusing term since Bitcoin. Here’s a guide for total beginners that might be useful if you have just an “imprecise notion” of the term, or no notion whatsoever.