DNA Sequencing and the Privacy Awakening

With the increasing popularity of personal DNA tests, the cost of sequencing an individual’s entire genome decreases. Dropping from $100,000 USD in 2009 to only $1,000 USD today, genome testing is projected to cost $100 USD by 2021. The genome itself consists of the information encoded to “create” a human being. Packed into six billion letters of genetic code, each different combination of letters makes an individual unique. Today, companies like23andMe and Ancestry have decoded the genomes of approximately 26 million people worldwide. Since each human being has a unique genetic sequence, it is increasingly possible to identify an individual from DNA alone because the current process is devoid of privacy protection to individual DNA sequences. With this, when 23andMe arranged to share DNA sequence data with Glaxo SmithKline, they were met with backlash. Protecting the privacy and data of each individual DNA genome becomes increasingly intensified, especially with the outbreak of the Facebook and Cambridge Analytica scandal in 2018. Despite issues with privacy, genome sequencing possesses the potential for biomedical advancement. In fact, DNA sequences from around the world aids scientists’ research on, for example, specific diseases associated with certain genes or racial groups. Thus, Nebula Genomics has strived to overcome with privacy concern by putting people’s DNA on a blockchain. In doing so, customers who provide their DNA sequences obtain more protection and autonomy over their biological information. Unlike before, “companies offering genetic testing have asked their customers to simply give away their valuable genomic data and then have sold it without their knowledge,” according to Kamel Obbad, CEO and Co-founder of Nebula Genomics. However, the companies and entire procedure itself contains underlying
issues, concerns and disputes over anonymity, biological information, and privacy protection.

Blockchain: A Platform Achieving an Equilibrium between Privacy Protection & Scientific Research

Blockchain is, in fact, a platform where customers of DNA sequence providers can scrutinize their health condition and ancestry after sending their samples to genomic companies, such as Nebula Genomics, for anonymous DNA sequence analysis. The whole process is completely anonymous, according to Nebula Genomics. Customers could mail their samples through a nameless P.O. box, and pay the DNA sequencing fee with cryptocurrency, bitcoin or pre-paid credit card. A series of numbers (without names identified) would then be given to each sample once it arrived at the genomic companies. Genomic companies could then send back the data through an encrypted email (a service provided by companies like Enigmail, Mailvelope and Protonmail). Having been through all these steps, the promise of anonymity by the genomic companies is achieved. On the research end, scientists could access the DNA sequence database through partnering with genomic companies while compensating only those customers who give consent to share their biological information for scientific research. The precious biological information could possibly reveal the history of a particular disease in one’s family. From the customers’ perspective, discovering an unknown genetic illness means earlier prevention. From scientists’ standpoint, they could dedicate more research and time on exploring medications or cures for the current and the potential victims of that specific gene-related disease.

Disputes over Complete Anonymity & Privacy Protection

Although the process of DNA sequencing seems to be perfectly achieved anonymity, there are still vulnerabilities within the supposedly anonymous procedures. For instance, postal clerks might disseminate the names associated with anonymous P.O. boxes, names used for cryptocurrency or bitcoin may be linked to real names, and encrypted email addresses may be hacked. Therefore, instead of complete anonymity, the vulnerabilities reflect the process of individual DNA sequencing as “pseudo-anonymity,” according to Dennis Grishin, Nebula Co-founder and Chief Scientific Officer. There are still many steps necessary to achieve a perfect system for anonymous individual DNA sequencing. And yet, $4.3 million USD in seed funding from several companies, including Khosla, Fenbushi Capital, and Mayfield, hints toward an optimistic future for anonymity DNA sequencing.

Editor/ Judy Ya-Hsuan Lin

Author

Judy Ya-Hsuan Lin

Success is the ability to go from one failure to another with no loss of enthusiasm.