From the trend of these years, genomics is becoming the dominant force in the new medical era. Based on genomics data, medical institutions can give patients more precise and personalized treatment. Pioneers such as 23andme's genetic testing services have greatly promoted the market penetration of this technology, but on the other hand, it has brought some new thinking to social ethics. 23andme is known for its $99 testing product, but it is based on low-cost access to users and data, and then sells user data to pharmaceutical companies. This business model does come at the expense of user data ownership.
Gene data is very sensitive and contains information about people's longevity, health, race, intelligence, and more. In the future, genomics may tell us more things that, if leaked, can cause many problems.
For example, if the person knows that the person carries the gene related to breast cancer, the insurance company may refuse to participate in the insurance; if the DNA shows that one's skills cannot meet the company's expected ability to work, his career development may be affected.
On the other hand, desensitized genetic data is important for scientific advancement. Only on the basis of big data analysis can we come to a conclusion that is more in line with the real world and better realize personalized medical care. This is what many genomics scientists hope to see, through large-scale data research to find better treatments for specific populations, and to make breakthrough research in genetic diseases and immunotherapy.
There is no doubt that there is a conflict between personal privacy and scientific progress. The emergence of blockchain seems to reconcile this conflict.
Solve the problem of data attribution
Ten years ago, countless companies discussed whether the BRCA gene could be patented. In the end, the US and Australian Supreme Courts declared the patent invalid.
But can such a conclusion be used in the data attribution problem? As the provider of the data, the user does not enjoy the copyright protection of his own data, and does not benefit from the data transaction. Regrettably, there is no law that clearly defines who the owners of these data belong to. There is no legal requirement that such data should be protected by copyright.
It seems that the only way to control these data breaches is to not sequence and hide the data in the body. But this is undoubtedly contrary to the pace of development of modern medicine and genomics.
The economist Hernando de Soto called the blockchain an invisible hand whose system can accommodate people all over the world. Scientists in genomics seem to be trying to use this technology to solve the current genome problem.
Blockchains are often used for virtual currency issuance, such as bitcoin. So what does it have to do with protecting genomic data?
In fact, the application of the blockchain has long exceeded the virtual currency, but everyone is more concerned about bitcoin. Bitcoin is useful and valuable because the blockchain creates a constant, distributed way of recording that is impossible to crack. The owners of Bitcoin accounts have absolute control over their assets.
For data storage, this is a highly sensitive, even almost perfect solution. For example, DARPA is considering the use of blockchain technology to protect nuclear weapons data. In addition, blockchain technology is being used to track diamonds, intellectual property and real-world logistics.
Based on these logics, people try to add blockchain technology to genomics, and more want to create a specific scene through it to maximize the relevant ethical and moral protection.
Security and privacy, the possibilities brought by the wonderful combination
So, what is the possibility of "gene + blockchain"?
For individuals, this is a safe place to store genetic data. If you've tested it and want to be able to access it at any time, then storing it in the "gene chain" is a good choice. Also, unlike Google Genomics, you don't have to pay for it.
Storing data here is more secure than most other places. After all, carrying a USB port with you may be lost, and there is a possibility of leaking to the cloud or other places. In the "gene chain", your data encryption is almost unbreakable. The blockchain is a chained storage of distribution. If a node is cracked, the remaining tens of thousands of nodes will immediately reject the operation record.
You can get your doctor authorized by setting access restrictions, but he can only get the information you want to share.
Similarly, you can track who abused your data with a unique signature.
For scientists, they can get metadata and can search for potential topics to get the data they want for research. These search results do not reveal the donor's personal information, nor do they allow them to obtain the genomic data itself. But they can make a request to the donor, and the agreement is paid.
These may bring a real revolution to genomics and provide more powerful data protection for data providers.
But this is only one of its functions, in addition to strong encryption, blockchain can also be used for data management. Research institutions and companies with large amounts of genetic data can purchase licenses to store their data on the “gene chain†without worrying about ethical issues. They can put more energy into scientific research.
Who is doing
Storing and sharing genetic data is a technical issue, and computing has become a highlight of research. A raw omics data is about 5-6 gigabytes, contains 3 billion base pairs, and there is a lot of data to be labeled during the sequencing process, which is difficult to manage.
Harvard University's "Thousand Human Genome Project" puts the genome-wide data from the sequencing online, which can be downloaded free of charge by users. However, the management of these data is relatively traditional, that is, the data is compressed by the compression tool, and then transmitted and stored.
In 2016, Georg Church, a genetics pioneer at Harvard University, and a computer scientist from the University of Cambridge, Kamal Obbad, and Harvard University scientist Dennis Grishin founded a startup called Nebula Genomics.
Once the user has obtained the data, the data can be stored in Nebula Genomics' blockchain platform. Other research institutions can use this platform to obtain desensitized data. Of course, this process requires payment. The system was built on a specially tailored encrypted data, and in order to pay for the purchase of data, the research institution must first purchase the token.
The purchase of these data is not a lifetime, one payment is required once, and a set of data can be sold to multiple agencies. The tokens that users receive can be exchanged for testing services with Nebula Genomics' partner agencies, and are currently being exchanged primarily with Veritas Genetics (another company founded by Church).
Nebula Genomics' idea is to turn a user's genetic data into something that is copyright-like, allowing users to enjoy the ownership and copyright of the data. Of course, the user initially needs to pay the amount of cash for testing services, and the current price is $1,000 per full genome test. As the cost of sequencing declines, the price of services will also decrease. The company hopes to officially begin operations and services in the next six months and work with security experts to create a safer, protected and anonymous environment.
Nebula Genomics is a company with its own platform and data sources, and companies such as EncrypGen, Luna DNA, and Zenome that don't add blockchain elements don't provide sequencing services to users. They usually need to get data from third parties.
Luna DNA is one of the early attempts of blockchains in medical applications, consistent with the original idea of ​​Nebula Genomics, who wanted to turn personal data into data assets through blockchain technology. However, Luna DNA does not provide sequencing services, avoiding competition with 23andme and Ancestry at the sequencing level. They believe that encouraging data sharing through Luna Coin can in turn drive sales of sequencing services.
“Personal-level data is of little value, and statistically significant data needs to be more than 100,000 and millions of people involved,†said Bob Kain, co-founder and CEO of Luna DNA. “Unless a community-level data gathers, Otherwise it is difficult to solve the problems of genome and health."
Although the blockchain is still in a wild era, there are also opportunities for investors to see it. They have received a $2 million seed round investment, and the investor is a former Illumina executive.
EncrypGen from Russia and Luna DNA take a similar strategy and they are currently working on ICO. These virtual currencies will not be used as investment vehicles, they will end in July.
Solving the problem of data attribution at the user level, how to meet the needs of research institutions for large-scale data? Shiva may be able to bring the answer.
The German company, founded in 2017, hopes to transform the state of global healthcare through state-of-the-art technology, including blockchain, cloud computing, gene sequencing, artificial intelligence and big data analytics. They believe that these new technologies will lead medical research into a new era.
In addition to personal-oriented services, they also establish large-scale databases through public project sponsorship through partnerships with medical institutions and governments around the world, such as the company's cooperation with the Andhra Pradesh government in March 2018. In addition, they will choose to establish links with rare disease-prone areas to generate more characteristic large-scale data on the platform.
Shiva also launched a personal service. Shiva does not provide services, but acts as an eco-environment builder, bringing service providers and users together on the blockchain platform. Users can exchange their own data for services, usually from third-party testing organizations; and the services on the platform are not only sequencing organizations, but also insurance services, medical examinations and other institutions.
Shiva hopes to build an ecosystem based on blockchain technology to provide an open environment for service providers and users. In addition to genomics and personalized medical services, resident agencies can add other applications and services.
The above main solutions are data attribution and transaction issues. In addition to transactions, the blockchain also has storage capabilities and is extremely private and secure. Based on this, Zenome hopes to make applications based on these characteristics.
Their first phase of the plan was to create a decentralized genetic data storage system and establish a secure environment that could be exchanged freely. Zenome also does not provide sequencing services, and the platform's data is mainly from network participants. Next, they will ensure the authenticity of the data through a questionnaire and assessment system. After the data reaches a certain size, Zenome will attract large companies and research centers to purchase data.
But their ultimate goal is not to trade, but to make it possible for these companies to store data on their platforms to create a community like Google Genomic.
Regulatory ambiguity, technical limitations, perhaps there is no perfect solution
But can the intervention of blockchain technology really solve all the problems? This is hard to answer because there is no perfect technology.
Blockchain technology also has limitations. Bitcoin currently has 105GB of complete data files from Genesis to the present, and the amount of data continues to increase. With the development of blockchains, the blockchain data stored by nodes is getting larger and larger.
Second, in the public chain, each participant has access to a complete data backup, and all transaction data is public and transparent. In virtual currency trading, the trader is anonymous, but the transaction itself is public and accessible to everyone.
Finally, the application of blockchain in genomics is still in the water test stage. The regulation of this technology itself is still unclear. The so-called security is not absolute.
These problems have brought uncertainty to the commercialization of technology. We can only say that blockchain brings inspiration to genomics applications, but whether it really solves the current contradictions requires constant trial and adjustment.
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