Hu-manity.co, an organisation developing human rights and corollary sovereign laws in a decentralised manner on blockchain, has announced it will use IBM’s Blockchain Platform as the foundational technology for its global consent ledger to help enable individuals to claim property rights to their personal data – including healthcare data.
Through Hu-manity.co’s new Android, and soon to be released on iOS, #My31 consumer app, users in the US can control and manage consent, authorisation and commercial use of their personal information via a permissioned blockchain-based data marketplace.
According to Hu-manity.co, with a focus on data transparency they will use a blockchain network to put users at the centre of the data economy and in control of managing and permissioning their own personal information. Through features like immutability and decentralisation, blockchain makes it possible for organisations and individuals to interact in a more transparent manner. Coupled with technologies such as AI and advanced data encryption, Hu-manity.co believes blockchain is an ideal foundation for their global consent ledger.
Upon claiming their data property rights, users receive a title of ownership, akin to a property deed. The 30 Human Rights ratified by the United Nations (UN) does not explicitly address human data rights, so the app is dubbed #My31 as an allusion to the “31st human right” – that everyone has the legal right to ownership of their inherent human data as property.
The app provides users the ability to designate how their data can be shared, with whom, and under which circumstances, starting with healthcare data. Personal or medical data is not stored by Hu-manity.co; the data will remain wherever it is currently stored such as in a hospital electronic medical records system or by a research organisation. However, the #My31 app will record a user’s property ownership as well as their data-sharing preferences.
For example, users can choose to share no information with third parties, or they may want to provide consent for use of their medical data for cancer research only. Users can also choose to lease their data to pharmaceutical companies or data aggregators but only upon receiving fair market compensation.
“IBM has long been focused on providing data stewardship which supports our belief that your data is your data,” said Senior Vice President, IBM Global Industries, Platforms and Blockchain, Bridget van Kralingen.
“With new digital business models driving data sharing to unprecedented levels, we believe that blockchain can serve as a key ingredient to enhance trust and responsibility with regard to data. Our work with Hu-manity.co is a pioneering example of how permissioned blockchain can help balance individual rights with distributed data access at scale,” continued van Kralingen.
Founder and CEO at Hu-manity.co, Richie Etwaru, added that individuals today lack the means to effectively control how their data is used by corporations and whether they receive compensation or alternative value when their personal data is commercialised.
“By creating a global consent ledger built on the IBM Blockchain Platform, people, corporations and the monetisation of human data can co-exist sustainably,” said Etwaru.
“People will enjoy greater levels of security, privacy and control while corporations will be able to lawfully benefit from access to higher quality data that has the explicit consent and authorisation of its rightful owner,” continued Etwaru.
According to CEO at Constellation Research, Inc. and Hu-manity.co Advisory Board member, R. “Ray” Wang, MPH, the research value and insight from a patient record greatly increases when the patient consents explicitly to sharing it.
“Explicitly consented records coupled with authorisation of use are of tremendous value to the healthcare industry. It is not only ethically sound, it also accelerates key healthcare breakthroughs as we welcome this era of fair-trade data,” said Wang.