Gene Coop

Human genomic data cooperative for and by citizens to support health research and responsible and inclusive governance of data

ProjectID

ledger_GeneCoop

Acronym

Gene Coop

Additional Info

Recent decades brought human genetics from laboratory studies to mainstream commercial products. Today's genetic research is a multi-billion industry based on the indisputable value of scientific output for the pharmaceutical industry. The key resource in this value production is the genetic material acquired from individuals through exploitable commercial services to be resold as digitalised genetic data to research institutions for profit. Waag decided to challenge this exploitation with a socially responsible business model of self-ownership where citizens remain owners of their genetic material and sequenced data. We believe citizens should remain owners of their genetic data and become stockholders of their genomic utilisation and commercialisation. For that purpose, Waag proposes the Gene.coop, a co-operative institution, fully owned by its members, providing a legal frame for the citizens to remain owners of their genetic data during the whole process of its monetisation. Such an organisation would actively advocate, negotiate and represent citizen interests.

Enduser Relevance

Human genomic data cooperative for and by citizens to support health research and responsible and inclusive governance of data

Contact

lucas@waag.org

Endorsements

Disclaimer

We make open wetlab

Country:  Netherlands

NGI Project:  NGI ledger

Status: Operational technology (practical and/or commercial viability)

Category: Decentralized solutions (including blockchain and distributed ledger technologies)