Human genetic databases are large collections of biological samples and personal details of individuals, which can be used for many purposes of medical research. Participants in these projects have expectations of collective benefits resulting from the use of the samples they donate and the information they provide access to. However, the current legal regime does not ensure that the use of human genetic databases delivers collective benefits in line with the expectations of participants and the society at large. This is mainly due to the unsolved tension between individual rights of participants and proprietary rights that arise in relation to the making and use of these resources. For this reason, private ordering mechanisms are needed to regulate the use of human genetic databases and to ensure that research on those databases is consistent with individuals’ expectation and public interest.
The issue is discussed in the chapter of Maurizio Borghi “Individual rights and property rights in human genetic databases: a common-law perspective”, in Rainer Arnold, Roberto Cippitani & Valentina Colcelli (eds) Genetic Information and Individual Rights (Regensburg University Press, 2018).