Updated: Jul 21, 2021
This article was originally published in Blockchain Industry Review - a Crypto Curry Club Magazine published monthly and available in soft copy and the printed version.
An Interview with Featured Contributor, David Koepsell,
Data ownership - a term we’ve all had to become familiar with in recent years. Data is the new oil and personal data is our new oil.
Social media has in part been responsible for our awareness: both in terms of how much personal data we give away, often unknowingly, and in terms of the value of this data, represented by the millions of dollars harvested by giants such as Facebook.
Traditional social media sites are now being deserted in droves as younger generations are rejecting their questionable data policies and their unfair weighting of monetary rewards in favour of the platform over the individuals.
But do individuals own their data? This is a question posed by Dr David Koepsell, philosopher, lawyer, lecturer, entrepreneur, author and the CEO and founder of EncrypGen, a next generation blockchain solution for genomic data. His premise: 'data cannot, in any rational sense, be possessed or owned at all’.
“In the same way you might have certain hopes and dreams. You don’t own them. They are something that you hold and think are important, and you might even value them, but you don’t own them in any sense that we use the term ownership. That’s why we are thinking in new ways to expand the blockchain foundation for EncrypGen, to give better control which is what we all want.”
Onto genomics now.
A genome is an organism's complete set of DNA, including all of its genes. Each genome contains all of the information needed to build and maintain that organism. In humans, a copy of the entire genome—more than 3 billion DNA base pairs—is contained in all cells that have a nucleus.
In 2017 David launched EncrypGena nd went live in 2018. The platform is a marketplace for people to record their DNA and sell it to pharmaceutical companies. The reason he set it up was as an antitheses to a billion-dollar business that had sprung up around DNA since the human genome was first mapped at the turn of this century.
Commercial companies such as 23andMe and Ancestry.com are huge multimillion-dollar businesses that provide genome sequencing for individuals at a very low cost.
The cost of obtaining your genome is around $90, so it seems to be a loss leader. In an industry that is pretty much unregulated, it is estimated that this data is sold at least 200 times over.
The industry on the consumer side is termed recreational, but each person is asked at time of purchase if will they allow their data to be ‘used for science’. It is understood that some 80% of people comply. This then allows the testing companies to sell the data for commerce.
It is mostly sold to pharmaceutical companies which in turn use it for science but this middle section is pure commerce and the space which EncrypGen wishes to disrupt.
“There is no transparency as to the path the data sets take after being purchased. This has other implications for use which is why we want to offer a marketplace that uses blockchain to track the transactions – and returns control to the people who submit the data as well as monetary rewards.”
Having access to large data pools of DNA is significant in the research for new drugs, to identify disease patterns, to move medicine forward in leaps. Again there is currently very little transparency on the deals.
One Parkinson study run by Pfizer is estimated to have purchased 3000 data sets from 23andMe for several million dollars. It is estimated that each person’s DNA was valued at $10,000 each.
Even allowing for 23andMe to recover costs and profits it would have been a tidy sum to earn if the individuals were compensated directly. David also points out that in time this industry should move from recreational - i.e. people using DNA sequencing to find out about their heritage - to using this technology for medical purposes, to chart your over all health and predict possible health conditions.
“Imagine in time being able to sequence your DNA and then apply the results to your general health, taking preventative steps to avoid pinpointed diseases through diet, exercise or proactive medicine.”
EncrypGen has been up and running since late 2018. Some 1500 people have uploaded their DNA onto the site. The platform does not offer testing directly but can direct people to third parties, or they can use the existing high-profile commercial companies if they wish. “The difference is that the users on the site set the price and they earn money from controlling their data.” In a relatively short time, David hopes to hit critical mass in terms of numbers.
Already scientists are dabbling on the platform and people have sold their DNA.
Asked if they will vet the scientists or purchasers of the data directly, David says no.
The whole area of genomes is still a fairy murky one.
David tells an example of there being several public DNA databases which Law Enforcement uses to track down cold cases.
There are laws already governing this area and these are set to grow as the market matures. On our marketplace we will anonymise the people protecting their personal data and allowing them to see how many times the data is sold – to their benefit.”
There are a number of public genomic databases where people in the past decade had donated their data to be used for science, hobbyists and ancestry. These are de-identified but there is usually some quality of information that can lead the DNA back to a person.
"In the case of Golden Gate Killer, they found a relative of the man in one of these databases and so he was identified.”