How can we control the use of our DNA?

Jillian Godsil talks with Daniel Uribe, founder and CEO of Genobank, 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 17th 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.”

Listen to the podcast to see what Daniel did to fix this issue.

Jillian Godsil is an award winning journalist, broadcoaster and author. Her most recent book, Persons of Interest, Timestamped in Blockchain and Cryptocurrency, can be found at https://www.amazon.co.uk/dp/B08NS1LXG8