The Problems With Data Protection

During the last 12 months, one of the biggest concerns that the government has been trying to address has been data privacy. In April, Mark Zuckerberg testified on Capitol Hill regarding how Facebook handled user data efforts during Russia’s attempt to subvert democracy. During the testimony, Zuckerberg reiterated his company’s commitment to privacy several times and listed the steps that the company is taking to address the Senate’s concerns.

And while privacy concerns on social media channels is troubling, it would pale in comparison to security breaches when it comes to the data that is more personal than any other: the human genome. 60 Minutes recently ran a story about how authorities used genetic genealogy to solve a 40-year-old cold case and catch the Golden State Killer. While much of the segment was about the methods employed to track the killer, one issue that was debated revolved around the private nature of DNA uploads in public databases.

For over 10 years, 23andMe has been selling saliva-based DNA kits to consumers to give them a glimpse into their health and ancestry data. The company has more than 5 million users, which has transformed it into one of the world’s leading DNA testing companies. However, over the summer, the FTC announced that it was investigating the company over privacy issues. Many consumers don’t realize that their personal information may be shared with third-party companies, and one big issue is that the companies’ terms of service aren’t always crystal clear.

In a recent American Journal of Human Genetics study of approximately 13,000 people, nearly 90 percent of participants noted concern about misuse of their data. Unlike financial breaches where steps can be taken to protect consumers, once DNA data is compromised, that’s it. So, while consumers can be paid for sequencing their genomes, many consumers wonder if the risk is worth the reward.

Decentralized DNA

Blockchain technology could allow companies to safeguard personal information by de-identifying raw DNA data files. This could include stripping away information such as names, contact information and other sensitive information, rendering the DNA data files completely anonymous. Consumers could then feel confident about sequencing their genome, uploading the data files to a blockchain platform, selling that data at the time and to whom they choose and profiting in the process.

The question is when this technology will be available. While this space is still in its infancy, there are several options that are already available or will be soon.

One company that appears to offer a promising solution in the space is EncrypGen (DNA). In November, EncrypGen launched its Gene-Chain platform, making it the world’s first fully functional blockchain genomic data marketplace. Consumers who have had their DNA tested can upload the data files to Gene-Chain. Platform users will be able to set a price for their data and then wait for interested researchers to purchase that data. Gene-Chain appears to offer a lot of promise for the complex issue of genomic data privacy and monetization.

While EncrypGen is the first to market, it certainly won’t be the only option available for consumers. Shivom (OMX) is a promising health-tech company focused on developing a DNA data and healthcare services platform. The company aims to democratize genomic sequencing in order to provide individuals with the ability to securely store their DNA data and automate their health and wellness. Shivom is currently developing an alpha version of its platform that it hopes will succeed in a very new market space.

Another option in the space may come from Zenome (ZNA). Zenome plans to build a decentralized storage system for genomic data provided by network participants and supported financially with the help of internal cryptocurrency. The company says it will be possible to find a person with a specific eye color, age, weight and nationality, for instance. Like Shivom, the company is currently developing an alpha version that is expected to arrive at some point in 2019.

One major reason why companies are eager to enter this space is the expected growth rate in the genomics market. Grand View Research estimated that the global genomics market is expected to be worth $27.6 billion by 2025. Estimates such as this continue to be revised upward as there have been advancements in genomics and personalized medicine.

All three of these promising companies have done a lot to advance the cause of genomic data privacy and monetization. It will be both interesting and fascinating to see if these companies will be successful at applying blockchain technology to solve one of the most sensitive issues facing businesses in the 21st century.

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