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 Society 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 Society 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.
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The initiators of Gene.coop are: Lucas Evers, Pieter van Boheemen, Miha Turšič, René Post, Sabine Wildevuur, Wieke Betten (all from Waag Society) and Roland van Dierendonck, Federico Muffatto (digi.bio).