Let’s first address the elephant in the room: data ownership. It’s a term we have all 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 like a slug’s silver trail, and in terms of the value of this data, represented by the millions of dollars harvested by giants such as Facebook.
Facebook and its ilk, once the darling of the new generation of digital citizens, has in recent years witnessed a backlash in popularity as our lack of privacy is revealed, the social bubbles that we live in are contemplated and the huge value placed on our cumulative online scratchings is counted.
Traditional social media sites are now being deserted in droves by younger populations as the unfair weighting of monetary rewards in favour of the platform over the individuals is rejected. Sites such as Steemit, Uptrennd and now this site have been created to address the unbalance and are the new social media 2.0 darlings attempting to dispense largess on a more equitable fashion that favours the individual who owns the data rather than the platform that shares it.
But do individuals own their data? This is a question posed by Dr David Koepsell, philosopher, lawyer, lecturer, entrepreneur and author. He is also the CEO and founder of EncrypGen (http://encrypgen.com), a next generation blockchain solution for genomic data. He is the reason for this article which is actually going to look at genomic data and how we share it, but first we need to get over the hurdle of what is data, personal data, and who owns it? In his book Who Owns You David tackles this thorny issue from both a legal and philosophical perspective.
His book raises some pretty interesting points. He explains his premise: “my claim was broader and based not primarily on ethics but on ontology:data cannot, in any rational sense, be possessed or owned at all. Neither can expressions, for that matter — a distinction recognized in the law but poorly understood in the general discourse.”
What is property, and what are property rights? David defines property as a bundle of ownable rights such as land and objects. They tend to have physical boundaries and can be fenced and held by the owners. Contrast that with the non-excusive nature of all other things and he argues that makes possession of those things is nearly impossible – with one exception, facts known only to you or more commonly called secrets.
In conversation with David he points out that no one owns the data, not Facebook, not Twitter not you. “There’s no philosophical foundation for the notion of data ownership. Ownership for things like data is not exclusive and not a rival. I can use data and you can use the same data and neither of us harms the other as we don’t take anything away.
“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.”
Phew – we are charting some pretty deep stuff here. On the subject on the ownership or otherwise of data, may I direct you to a very explanatory medium article written by David here or directly to his book, available here.
Onto genomics now. Let’s start by defining the term genome.
Agenomeis an organism’s complete set of DNA, including all of its genes. Eachgenomecontains all of the information needed to build and maintain that organism. In humans, a copy of the entiregenome—more than 3 billion DNA base pairs—is contained in all cells that have a nucleus.
In 2017 David launched EncrypGen and 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 antheses 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. Indeed, the cost of obtaining your genome is around $90 which is 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 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 to everyday personal medical.
“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. David’s platform does not offer testing directly but can direct people to third parties if they wish, 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 time, and 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 are going to vet the scientists or purchasers of the data directly, David says no. “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.”
The whole area of genomes is still a fairy murky one. David tells an example of their being several public DNA databases which Law Enforcement uses to track down cold cases.
“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.”
It’s a whole can of worms. This is me talking now. I mean I get how it is great to catch a serial killer but could an unscrupulous actor also use the same facility to track down an innocent person, like something from an Tontine murder thriller?
And when I try to argue there may be more prosaic outcomes such as class action suits from relatives against a family member that donated their DNA to a public database, David again counters there is no privacy right as there no property rights on personal data. I guess it’s all about control.
First published on VOICE