Who Owns Your Medical Data?

Questionable Relationship Between UK Government and Google Deep Mind Health Highlights the Need for Decentralized Medical Big Data and AI

While my main interest remains in the algorithmics of creating powerful AGI, issues regarding the social and political aspects of narrow AI in the contemporary world keep jumping to my attention....   And intriguingly, to the extent that AGI is going to emerge from a network like SingularityNET, it may be the case that these sociopolitical and algorithms aspects intersect in complex ways to guide the nature of the first AGIs that emerge...

In the “about as surprising as a corrupt North Korean politician, or a windy day in the wind tunnel” category, an evaluation of Google Deep Mind Health’s deal with the UK government has identified some serious concerns with the arrangement.

This third-party evaluation was requested by Google Deep Mind Health itself, which is a positive indication that the organization does care about the ethics of their doings (a cynic might hypothesize their main concern here to be the public perception of their ethics, but such cynicism is not necessarily founded at this stage).   However, this doesn’t detract from the bite or validity of the findings.

Among the essential problems noted are the nature of the bargain between the UK government and Google Deep Mind Health.   The government gets free data organization and data services from Google Deep Mind Health, for a wide scope of medical data regarding UK citizens.  In exchange, Google Deep Mind Health gets preferential access to this data.

In principle, the data in question is supposed to be made widely available to others besides Google Deep Mind Health, via accessible APIs.  However, in practice, this seems not to be happening in a really useful way due to various prohibitive clauses in the commercial contracts involved.   

Not to put too fine a point on it: What we see here is a centralized government medical system dancing to the tune of a big centralized AI/data company, passing along individuals' private medical data without their permission.   The 1.6 million people whose medical data was passed to Google Deep Mind Health were not asked permission!

This is in some ways a similar bargain to the one an individual makes when using Gmail or Google Search — a free service is obtained in exchange for provision of a large amount of private data, which can then be monetized in various ways.  The (fairly large) difference, however, is that the bargain now being made by the government on behalf of millions of citizens without their consent. A free service is being obtained from a commercial company by the government, in exchange for the provisions to this same commercial company of the population’s medical data, which can then by monetized in various ways.  

Quite possibly the UK government officials involved have entered into this bargain in a good-hearted and pure-minded way, with a view toward the health of the population, rather than for more nefarious motives such as, way, maximizing campaign contributions from entities associated with the commercial corporations benefiting from the arrangement.   But even if the motives of the government officials involved are squeaky clean, this seems much worse ethically than Gmail/Google-Search, whose bargain people enter into knowingly if haplessly. Because in this case the government is entering into the bargain on each individual's behalf without their knowledge or consent.

This sort of problem is a core part of the motivation for a host of recent projects operating at the intersection of medical data and blockchain.  By enabling individuals to store their medical data online in a secure manner, where they hold the encryption keys for their data, the nexus of control over medical data is shifted from monopoly or oligopoly to participatory democracy.   

In the democratic blockchain based approach, if a company (Google Deep Mind Health or anyone else) wants to use a person’s medical data for their research, or to provide information derived from this data as a service, or to provide an easier way for the person to access their medical data — then the company has to ASK the person.   Permission may be given or not based on the permission’s choice. Permission may be given to use the person’s data only in certain aspects, which can be enabled technically via homomorphic encryption, multiparty computation and other techniques. The process of asking and granting permission will often involve transparency regarding how and why the data will be used.

The point isn’t that Big Medical Data or medical AI is bad — directed properly, applying advanced AI to massive amounts of human biomedical data is the best route to effective personalized medicine, and ultimately to curing disease and prolonging human life.  The point is that the process of getting to personalized medicine and radical health improvement should be directed in a participatory way by the people whose data is being used to fuel these revolutions.

My own SingularityNET AI-meets-blockchain project is doing work in this direction, for instance its explorations into AI-guided regenerative medicine, and its partnership with the Shivom  medical blockchain project.  But SingularityNET and Shivom aren’t going to democratize big medical data alone.  What is needed is a wholesale redirection of medical data access, storage and analytics away from private collaborations between governments and megacorporations, and toward decentralized networks that are controlled by the world’s individuals in a democratic and participatory way.   

What is at stake here is, quite precisely: Who owns the deep knowledge about human life and death and health and disease and body function, which AI is going to discover by analyzing the world’s biomedical data over the next years.