Table 3

Consent for governance

Consent procedureIn the initial consent procedure, donors are informed on the ways in which the governance obligations take shape in the organoid infrastructure to which they contribute, for example, the protection of their privacy, conditions for access to data and samples, regulations of property rights and commercial interests and ethical oversight.
Ingredients for ongoing governance obligations
 1. Privacy by designThe incorporation of privacy measures in the entire infrastructure of organoid exchange. The most appropriate privacy standards apply by default, for example, in coding samples, governance of IT and data-sharing policies.
 2. Participant engagementThe substantial engagement of (groups of) donors and/or the wider public in the design and continuous adaptation of biobank governance.
 3. Benefit sharingThe fair sharing of monetary and non-monetary benefits generated through organoid exchange among all parties involved, including donors, patients and society.
 4. Ethical oversightThe involvement of ethical oversight bodies in different stadia of organoid exchange.