Genomics is a term referring to the complete DNA structure and how it manifests itself in the organism that contains it. This science grows more precise every year, bringing with it new and better ways to understand and treat all manner of maladies. As with any medical advancement, though, close on the heels of the altruistic pursuit of knowledge come business opportunities and regulatory challenges. Amongst the challenges has been the proliferation of non-accredited laboratories offering genomic sequencing.
Medical researchers are not blind to this phenomenon, though, and some of them have begun helping individuals control the results of their genetic and genomic testing. One of the key tools in this effort has been blockchain technology, which has garnered worldwide recognition as the mainstay of cryptocurrency. In cryptocurrencies, blockchain technology ensures privacy by making every transaction a peer-to-peer matter through a distributed ledger; there is no central server through which the data must be relayed; therefore, there is no way for it to be intercepted and misused.
Although there is no currency involved in genomics, the creation of large private databases of genetic data of individuals nonetheless offers unique opportunities for both legitimate use as well as nefarious activities and misuse. Access to large quantities of genomic data can be worth millions in the research and development of new treatments or drugs – if amassing data for this purpose is the primary interest of a given entity, it is much less likely that they will seek to “democratize” the data through the application of blockchain technology or other approaches.
To prevent misuse of this type, a number of projects have begun that take genomics off of central servers and into the peer-to-peer format that cryptocurrencies use. These projects envision human genomes as another piece of currency in a digital wallet; only the owner can authorize it to be transferred. When transferred, it does not pass through a central server; instead, the genome being transferred goes directly to the recipient. This will mean that no one’s genome will ever be shared except with their express knowledge and permission.
A significant roadblock to these projects so far is speed; while cryptocurrency exchanges move with the speed produced by millions of users worldwide, a relatively limited number of people ever even get their genome sequenced, let alone take precautions about where the data ends up. Publicly and privately funded efforts to sequence vast numbers of individuals are exacerbating this issue, leading to accumulation of huge datasets in which individuals have signed away their genomic data rights with no clear ability to control where and to whom it is transferred in the future.
Technological challenges present themselves as well. Because genomes are specifically to be kept private and crypto survives on the principle of every connected user knowing what is in every block, there is a need to rework the blockchain concept to make it usable for private and effective genome transmission. Perhaps the most significant change is the proliferation of blockchains; several projects have made it their business to lead the world into genomic blockchains, resulting in several different chains that tend to be incompatible with one another.
The projects are both real and progressing and will eventually leave every individual in control of their own genomic data, but it will take time to make it happen and care, as it evolves, to ensure that legitimate use of genomic data continues to advance without compromising privacy.
Surya Singh, MD
Founding Medical Partner
Dr. Singh is actively licensed & board certified in internal medicine. He is currently the CEO of gWell, Inc, a genomics and wellness focused digital health company, and serves as a senior advisor and board member for mission aligned companies and non-profits. In addition, he is an Adjunct Instructor of Medicine at Harvard Medical School. He was formerly Corporate Vice-President and Chief Medical Officer of Specialty Pharmacy at CVS Health, and was an attending physician for many years at the Brigham and Women’s Hospital in Boston.