Can we control the use of our DNA?

Daniel Uribe, Founder of GenoBank.io, living and based in Silicon, USA

Daniel, who is of Mexican descent did his primary degrees in Mexico but studied in Stanford University where he met Condoleezza Rice as part of the executive programme, and he is also a graduate of Singularity University. Both experiences formed his independent thinking – which is totally obvious in his founding of GenoBank.io, a DNA ownership legal tech kit and patent-pending blockchain technology platform which is turning personal control of DNA on its head.

When not studying, Daniel also worked for major tech giants such as Oracle and Sun Microsystems. He is a cybersecurity person with extensive experience in network storage; he has been working in the UNIX space since 2002. With these influences, his start-up was bound to happen – but in fact, it was his personal life that proved the catalyst.

“I first heard about blockchain early on, around the same time everyone was moving into the cloud, so the concept of decentralisation was hardly spoken of; if one had a database then it was on Oracle or similar. It was centralised, it was expensive, and it took a couple of humans to maintain – not thousands of nodes.

“At the time, the penny dropped for me; now we could have one ledger or one version of a book. This had not been possible before, not even the most famous books in the history of mankind have one version – there is no one version of the Bible or the Koran – but here was a technology that could offer one version, a live version, that was synchronised every 10 minutes.”

Daniel had the makings of a disruptive start-up in his hands, if he but knew it. However, it took a personal accident to crystallise these thoughts into a real project. His son at 18 months had an accident where he poked his throat with a straw. As a result, he bled for three days and the hospital did some tests, including looking at his DNA.

As a result, his son was diagnosed with a rare blood disease with something very similar to haemophilia; a deletion in his genes in the 17^th chromosome resulting in a condition called Glanzmann’s thrombasthenia.

While it was a relief to have the condition diagnosed and named, Daniel was uncomfortable about the handling of his son’s DNA records.

“The tests were covered by medical standards, HIPAA, but what caught my attention was that my son’s raw data was not available.  It was like trying to access state secrets such was the lack of transparency.”

Daniel was concerned on a number of fronts. What was going to happen to the raw data, was it going to be used for research? How many times might it be shared? Could he, as his father, ask for the data to be deleted? Might this impact his son in the future – who might hold this data and perhaps prevent him from attending university or filter him negatively out of a job?

“I wanted to know what was going on with my son’s DNA data.”

As Daniel struggled to find answers to these distressing questions it struck him forcibly that blockchain could provide an answer.

“Why not store personal data on a blockchain, restrict access and allow sharing governed by the owner of the data.”

Everything begins with a saliva or swab kit. The two most popular extraction kits are DNA and RNA, with the latter gaining popularity in COVID PCR testing where RNA offers a time sensitive snapshot of a person’s antibodies.

GenoBank.io offers anyone the opportunity to store their personal DNA (or RNA) data in a digital wallet, just as one might think of a digital vault. Owners of the data can access their digital wallets through a private web browser. The information is held in a digital data room with the owner holding the personal and private keys – not anyone or anything else.

“Through the use of private keys, the owners of the data can grant access to third parties if they wish.”

A core principle behind GenoBank.io is strict and verifiable data governance and that everyone has ownership and control over any data received from their saliva tube, and moreover that they can control any experience or relationship with a third party that might wish to use this information as a discrimination device.

GenoBank.io’s approach in leveraging blockchain technology was validated when one of Europe’s top scientific journals, The Journal of The British Blockchain Association, published our peer-reviewed research (https://bit.ly/39a12nU) Authored by Daniel and a GenoBank.io Advisor, Gisele Waters, Ph.D., GenoBank.io is the only player in the space to use blockchain technology to secure DNA data.

Right now, GenoBank.io is not so much interested in selling this data but controlling it.

“Using cryptographic technologies, we strive to ensure that no one should forfeit their ownership of their DNA to anyone else. With regard to my son’s unique DNA, I do not want to sell it to a third party, but I am not opposed to sharing it in terms of scientific research.”

The GenoBank.io roadmap defines that they will work with other businesses, in a B2B model. Their first customer, signed in December 2020, is a white label kit solution with a Mexican ancestry firm, SOMOS (somosancestria.com) based in California, and the first Latino designed ancestry platform. The company will allow individuals of Hispanic descent to explore their DNA heritage from the South American continent where there are eight identifiable specific ancestries including Mayan and Aztec heritage out of a total heritage of 68 backgrounds.

It is important that not only can individuals participate in this search, but they also still own their own data, and they can retrieve it any time.

There are eight projects that are lined up to undertake projects using DNA as a staple. GenoBank.io designs the kits to the partner’s specifications and then handles the distribution in the US.

“All of the kits have unique QR codes. For example, one tool kit being produced is a kit for survivors of sexual assault. Blockchain is used to keep the chain of custody of the samples – it’s not easy but it is effective. Another use would be to determine biological age and another for the aforementioned COVID testing.”

Right now, GenoBank.io has partnered with another company to do the testing – in the same way as industry leaders 23andMe and Ancestry have done up until now – but while the price is around the same, the ownership of the data resides firmly with the owner and the data is governed by GenoBank.io.

“This is not about monetizing your DNA; this is about securing it. If people wish to donate their DNA to scientists, this is super, but it is very much their call.”

To reach Daniel to find out more, visit the GenoBank,io website, https://genobank.io Facebook https://www.facebook.com/genobank/ | Twitter @genobank_io | Instagram @genobank.io find him on LinkedIn www.linkedin.com/in/uribedaniel/ and on social media @danielruribe

GenoBank.io would also like to invite you to join their webinar! Daniel will sit down with Federico von Son, MD, the Co-Founder and CEO of SOMOS on Thursday, January 28th at 11AM PST to discuss expanding genetic testing to underserved populations and details of their partnership.

To join, select this link to register: http://ow.ly/pBzm50Dg35b