I have spent 15 years in academia and industry, created a startup, and am running a second one, dedicated to the progress of health and well being through the analysis of our DNA information.
I have come to realize that the issues are technological, but also to an incredible extent, organizational. Middlemen and authorities set the rules of how our DNA is used and after we provide our DNA, we are left out of the decisions, new information, and added-value created through the analysis of our DNA.
My latest venture DNA\/ID is dedicated to put the individual back at the center of the DNA revolution.
I am the only person in the “team”, but my capabilities are extended by the community: DNA\/ID is completely open source and collaborative. With an open forum to involve all stakeholders in the design and implementation of the solution.
At this time, crypto-assets provide the technological background to finally solve this problem at scale (don’t be afraid by the term crypto or the technology, in reality, it simplifies everything, read on…):
- It is easy to create tokens on top of other blockchains, for it is now trivial to create new Ethereum ERC-20 tokens.
- Decentralized storage and identity solutions are being developed on top of the existing blockchains, or new dedicated blockchains.
- Grass roots organizations can be created and transparently governed online
I created a new code repository open for all to see and contribute to implement the ideas set forth in this post.
What problem are you solving?
DNA companies business model relies on centralizing individual’s DNA information and obtaining property rights on them (23andMe, AncestryDNA, Sophia Genetics, and many others). Then they sell access to third parties, for example, biopharma or insurance companies (sometimes these activities are internalized). These companies in turn sell the results of their analyses: tailored drugs or diagnostics, or insurance back to the individual. The individual thus pays twice.
This process can result in additional reduced utility for the individual, for example, if they get denied life insurance because a higher-risk profile has been found, or if they remain unaware of an experimental treatment discovered with their help.
It is self-evident that the owners of our DNA data are ourselves, but the centralisers often hide behind authorities and regulators to refuse freeing data in “defence” of the individual who has given them some (hardly defensible) property right to their data.
I participated in a DNA data-sharing multi-centric medical genomics project for which no data could be shared at the end of the 3-year project. Middlemen abounded: researchers needing to keep their data confidential to avoid being scooped; medical genetics centres keeping an edge on a type of disease they have a lot of data about; the fact that the patient contact is through the physician who protects their patient’s trust in them; distrust between public and private institutions, etc.
This said, all folks I have met have the best intentions at heart, but have to ply to the incentives of the current system.
The interest of the individual, therefore all of us, is in participating with their families into a universal database with the maximum number of genomes, and with sharing of the information, and the added value, that analyses on their genomes have generated.
Currently, the incentives in the system are stacked against the natural owner of the scarce valuable resource. Fortunately, there is increasing awareness and even some backlash against the most aggressive companies. (See news item below).
Now imagine all DNA and personal info in a common database, where the individual can be contacted directly. Some individuals could even pay for the studies that could benefit them.
New biotechs could be created to cater for specific needs that are pre-financed. Grants and investments could then be directed to the long shots, where great uncertainty exists, but big breakthroughs are sought.
Such a world is clearly so much better, and getting there is technologically possible, if we all play our part.
A New Economic Model Centered Around the Individual that Aligns Incentives
Here, we propose to create a decentralised token given in exchange for contributing to a common network an underlying scarce resource, ie, personal DNA and associated information. The economic model is designed so that the value accrues to the token and thus the individual.
DNAcoin tokens will be issued for:
- Humans adding their verified identity linked to their DNA
- Miners verifying new DNA
- Developers working to improve the platform
These tokens will be sold on an exchange where third parties, biopharma or insurance companies and academic R&D, purchase tokens which permits them to perform analyses on the network’s DNA database. In order to seed the analysis side of the platform, and provide financing for the organisation (coordination, data storage costs, etc.), a set amount of tokens can be sold initially to such organizations.
After a critical mass has been reached the tokens will reach a definite value that will be a function of the number of individuals, the quality of their profiles, and their family connections. A fraction of a DNACoin, sufficient to buy sequencing could be granted upon signup, prior to sequencing, and allow anyone in the world to access this new tech, and to contribute to its utilization.
Tokens paid are then distributed back to the humans whose DNA was selected for analysis. This creates an incentive to maintain profiles with personal & genealogical info that are complete and compelling. See how such a profile would look. The addition of EHRs, and other genomic data (gene expression, proteomics, etc.), will make the profiles more attractive and therefore more profitable.
Individuals have the option of setting the amount of token they ask in exchange for access to their data. This amount can be negative, in which case I am paying tokens to encourage the use of my information, for example, in clinical trials where a cure for a disease I may have is tested. This provides a novel mechanism by which medical research or clinical trials are paid-for directly by the individuals affected.
Mining
DNA information is extremely identifying and unique to each individual. Still, it must be determined beyond doubt that a new, untampered-with human DNA is being added before issuing a token. This will require some research and testing. But once the algorithms have been established, DNACoin could be mined by vetting new DNA.
Technology stack
Decentralized storage of large DNA and other genomic datasets is challenging. However, new solutions such as Storj or Filecoin provide decentralized, encrypted solutions whereas the Organization would not have access, therefore cannot be hacked or tempted to commercialize personal data.
The same benefits can be obtained for the management of the identities of the users. Civic is one solution that fits the requirements.
An efficient way of querying a large decentralised DNA database, with strict access control, and restrictions to some portion of the data is a big challenge. One could imagine that smart contracts could play a role.
Ethics and governance
What if a user wants to remove their DNA? Should she be allowed? It would be reasonable to ask for the return of the token awarded for removal. But the token might have been sold and its price increased so much that it is no longer affordable for the individual to pay it.
Perhaps, they can put their DNA in a “dormant” state with no meta-data and with only queries that are not indentifiable. However, making sure that the results of a query on DNA is not identifiable is difficult tech-wise.
Another issue is that by revealing our DNA, we are revealing a fraction of the DNA from our families, tribes, and the population at large with which a large portions of DNA are shared.
I expect these issues to be advanced through a broad and open public dialogue.
Incidentally, recent advances in blockchain allow to easily create grassroots democracies to tackle these challenges. A draft of a Constitution is available here for comment. This text can be transcribed into computer language thanks to smart contracts running on the blockchain.
The time to further and implement these ideas is now
A recent LinkendIn post simply asking who is working in DNA and blockchain has generated a sense that the community is excited by this new area and willing to join forces to tackle the challenges.
There are people thinking about this type of solution (see below, HT to Jonathan Sheffi for pointing this out.).
And even an implementation of a token-based system that implement part of the functionality sought here (see , http://encrypgen.com). Entrepreneurs working in this space have also reached out.
I am still figuring out how the different pieces will fit together and will update the post as my understanding progresses.
Please, you too, spread the message and join the conversation!
If you ended up here, you have an interest for this important but sometimes obscure topic. So, at least please recommend the story so it reaches more like-minded people. Thank you.
