How to Get a Fair Share: IP Policies for Publicly Supported Biobanks

Abstract

To realize the benefits of personalized medicine, many have argued that large-scale participation in biobanks is necessary. Participants with expectations of benefit beyond the advancement of science may refuse to contribute if they feel they are being exploited. Even if participants, on an individual basis, are unaware or unconcerned with a biobank’s intellectual property policies, governments negotiating access to data and providing support for biobanks should seek an equitable arrangement on their citizens’ behalf. The imprimatur of government sponsorship, potential for conflicts of interest, and costs associated with publicly supported projects highlight the importance of striking a fair deal among the government, researchers, and participants in publicly supported biobanking. I propose that public biobanks adopt policies that ensure access to data, experimental use, and non-monetary benefit sharing with participants to encourage fairness, promote acceptance, and maintain trust.

Keywords: biobank, experimental use, data sharing, data access, benefit sharing, patents, genes, population studies, ethics

JEL Classification: O34