Hu-manity launches app giving consumers legal control over medical data

Hu-manity wants to change the way we share data by giving people legal ownership with contractual enforcement handled on the blockchain. The first foray will be with medical data, and today the company debuted the #My31 app in Google Play and the Apple App Store.

The name refers to the company’s core belief that data ownership should be a human right. The current United Nations Declaration of Human Rights include 30 core principles. The startup is exploring the idea of making data ownership the 31st human right central to its approach and how it markets the service.

When users download the app, they can sign up for the service and set the terms and conditions of how they use their data. You may be thinking that you already control your medical data, but you’re only partly right. Medical information is protected in the U.S. under HIPAA (Health Insurance Portability and Accountability Act), but Hu-manity CEO and co-founder Richie Etwaru says that this information is being sold by a number of third parties in an anonymized fashion today, whether we know it or not.

Hu-manity’s goal is to give app users the ability to set terms of data sharing, defining who can use it, and under what conditions, even getting paid for giving access. So for example, you could decide a particular drug company could use your data, but only for a single trial for a given price, and it couldn’t sell your data to another party after the trial ends.

When you claim ownership to your data, the company assigns you a title, a legal document and all that entails.

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The app uses the blockchain as an enforcement component for these rules. It chose Hyperledger Fabric as its underlying blockchain technology running on the IBM cloud. Etwaru says that they chose IBM for both technical and business reasons. “Launching with IBM brings credibility and validation to the notion that data should be human property,” he said.

As IBM’s Jerry Cuomo said, “If data is gold, then people have been stealing the gold.” A service like Hu-manity lets users define smart contracts on how to use the data, get compensated for it and enforce it all on the blockchain.

Today’s launch represents just one part of the company’s overall strategy that would require people to sign up for this app, and later for organizations like data brokers and pharmaceutical companies to join in to buy access to it.

In fact, Etwaru claims that these companies are very much on board with this idea already. Consider that they are paying for data today that is often bad or incomplete with no means to contact the data source directly. A service like Hu-manity while restricting how they use the data, would allow them to have a relationship with the owner that is lacking today, and that’s very attractive to these organizations.

Etwaru doesn’t expect this to take off like gangbusters from Day One, although he would surely be happy if it did. Instead, he sees this as a kind of movement and he hopes it will build slowly but surely, by word of mouth.

The movement metaphor will work a bit like a Kickstarter project where the first people to sign up will get access to rewards. For instance, the first 25,000 sign ups will get a premium printed title delivered to their homes for their records. By the time they reach a million users, they believe that will be enough people to represent the first cohort of users and they can begin to negotiate a cost structure with data buyers.

All of that is still down the road for now, and today’s consumer app represents the first step in what Hu-manity hopes will be a major change in how we view data ownership.