Blockchain and the Consent Quandary: Unconsented de-identified data – Info News
Clinical data has been used for decades, and we’ve all benefited from it. Data is plentiful, and data is powerful. That makes data plenty powerful — that’s great news. Having worked in data analytics for years, I can attest the general observation is that the more detail you have in the data, the more insight you could gain from it.
That’s all well and good, but the flip side of that coin is that when it comes to health data, individual people are involved. Thereby, detailed granular health data translates to very sensitive, very personal information about very real people. People are naturally very private about their health journey, so there is certainly reluctance to share detailed information.
Historically, this hasn’t been a very visible problem because de-identifying clinical information has allowed a large amount of data to be used without compromising privacy. Privacy was protected in the past because the barriers to access these datasets were higher and no one had heard of “data theft for ransom”. Times have changed. De-identified data is increasingly re-identifiable and people’s own secrets are being held against them for ransom.
So here we are in the present day: data has immense potential and value, everybody has secrets, and re-identifiable data is being used without permission. Aside from privacy, there are other reasons why an individual may not want their data used by a third party including personal views on the purpose of the research / analysis, and insufficient incentive to participate.
Another reality of the past is that it wasn’t feasible that each contributor to a de-identified dataset be contacted, and consent requested. Again, times have changed. Technology now exists — and plays a frequent role in our lives — such that it is feasible to get individual consent.
Here’s the quandary: in order to get consent, you have to know who to ask. In an ethically sourced data world, data consumers seek consent but private individuals don’t want to be sought.
My favourite characteristics of public decentralised blockchains are that the information contained in the ledger is permanent, the parties in a transaction are anonymous, and data cannot be forged on large fully de-centralised blockchains. Axonium is using these three characteristics solve the consent quandary by facilitating anonymous consent.
With a decentralised public blockchain, a user can store their encrypted information on the blockchain and hold the only key that can unlock the data to make it useful to a third party — enforcing the centrality of consent. With Axonium, an individual consents to the retrieval of their information which is stored on the Axonium blockchain. Their metadata stored in a searchable database with the only being connected to their public key.
If a third party or external organisation wants to see the individual’s record, the organisation can submit a request for the data, and the request is sent to the individual via their public key. As the keys are anonymous and cannot be manipulate to reveal the identity of the key-owner, the party being asked for consent will remain anonymous regardless of whether their consent is given or withheld. To give adequate information to the individual making the consent decision, Axonium’s data request template requires the organisation to state:
- Who they are
- What data they are requesting
- Why they are requesting it
- The time period for which the data is requested
- The fee that the organisation is willing to pay for the data.
The informed individual is able to then make an educated decision on whether or not to provide their data. Aside from the other benefits of this process — including giving reward to the data owner, de-risking the data custodian and the data consumer by getting informed consent, allowing the benefits of shared data to continue — anonymous consent doesn’t just allow data driven research to continue but it actually encourages it by allowing organisations to use data with lower risk and allows data to be used ethically, all whilst keeping the data owner’s anonymity completely intact.
The benefits of shared data has always been known and hasn’t diminished at all. The risks of shared data have increased in time and face greater threats if the processes of the past continue unaltered. Fortunately, blockchain provides a solution to this quandary: anonymous consent.
Author: Ian Varughese (Founder of Axonium)
Article Prepared by Ollala Corp