Throughout the last couple of years, data protection has emerged as a leading issue among companies and governing bodies. This is especially true in the United States where several incidents have been identified as a major cause for concern. A few examples include the following:
Credit card numbers, driver’s license numbers and passport numbers are among the most valued pieces of identity that citizens have. But what’s even more valuable is data that exists inside all of us at birth; our genomic data. Genomic data refers to the genome and DNA data of an organism. They are used in bioinformatics for collecting, storing and processing the genomes of living things.
At the moment, genomic data is among the most coveted and valuable type of data that exists. Researchers are eager to get their hands on it as it may be the key to curing the deadliest diseases and illnesses that people suffer from.
Problems with Traditional Genomic Sequencing Approach
Perhaps the most well-known company in this field is 23andMe. 23andMe, founded in 2006, is the world’s leading consumer genetics and research company. The company’s stated mission is to help people access, understand and benefit from the human genome. A significant part of the company’s business involves selling home-based saliva collection kits to consumers. After receiving the kit, the consumer simply spits into the tube, registers the data collection with the enclosed barcode, and sends it back to 23andMe. Within 8 weeks, the analytical reports will be made available to consumers.
While 23andMe does a fine job in analyzing data, they do a poor job in protecting that data. In June 2018, the Federal Trade Commission announced that they were investigating popular DNA testing companies like 23andMe and Ancestry.com. The investigation stems over concerns on how these types of companies are handling personal information and genetic data, and how they share that data with third parties. The FTC even has a page which lists all the risks associated with sending one’s genomic data to companies such as 23andMe.
Most of 23andMe’s users have agreed (often without realizing what they consented to) to let their data be sold for science. And while the DNA testing companies are making millions from their bulk data deals, the consumers who actually own what is being sold receive absolutely nothing. Additionally, consumers receive no notice of where their sensitive data is being sent, or how it’s stored.
In addition to the privacy risks already addressed, hacking is also a risk. And while credit card hacks can be dealt with, genomic data is an entirely different proposition.
Blockchain technology has emerged as a solution to various problems across several different industries. Although the technology is generally still in its infancy, there are a few instances where it has been deployed in an attempt to solve some of the hardest issues facing scientific enterprises. As it relates to genomics, blockchain technology made headlines in November. Encrypgen (DNA) announced that it had launched the world’s first genomic data marketplace, called the Gene-Chain.
So, what exactly does Gene-Chain do for consumers? It’s first important to remember what a blockchain actually is. Blockchains are distributed, cryptographically-secured, immutable ledgers. The benefits of blockchains include the following:
Gene-Chain Is a cryptographically encoded ledger used to mediate the searching, storing, buying and selling of genomic data. It is a private network, which means that users must join the community to participate. This essentially enhances the security and privacy of genetic data that has been uploaded onto their network.
Encrypgen uses HIPAA compliant, highly secure cryptographically-protected data storage, and Google Cloud to protect the most valuable of all data. These powerful forces work in concert to preserve the anonymity of users, create layers of abstraction between users and their data for identity protection and privacy, and process the available genetic data files through indexing. Although this is still version 1.0 of Gene-Chain and more developments and advancements are sure to come, this appears to be a very promising solution to a problem that is of the utmost importance.
In addition to Encrypgen’s Gene-Chain, several other promising companies are working on additional solutions to protect consumer genomic data. LunaDNA and Nebula Genomics are both working on an alpha version of a genomic data marketplace. Although neither company is interested in launching a cryptocurrency, both companies have hired extremely competent and talented developers. Nebula Genomics was founded by George Church, a Professor of Genetics at Harvard Medical School. Mr. Church has coauthored 480 papers, 130 patent publications, and one book.
With the increasing ability of hackers around the world, and the greed of corporations willing to take advantage of unknowing consumers, protecting consumer data is one of the top issues facing our society. Unlike credit cards, driver’s license numbers, and passport numbers, all of which can be corrected, genomic data is a one strike, you’re out ballgame. Once that extremely valuable and sensitive data has been exposed, there is no coming back from that.
Given all the concerns, it behooves all of us to proceed with the utmost of caution. While Encrypgen appears to be taking the lead in the field of genomic blockchain security, many more solutions will be coming in the future.