Sharing standards before sharing resources? The case of research biobanks

By Marco Capocasa, Flavio D'Abramo, Fabrizio Rufo, Paolo Anagnostou, Giovanni Destro Bisol

open access biobanks open science research ethics

In biobank research, one of the main obstacles for full applicability of Open Access to biomedical resources is the researchers’ reluctance to make immediately and freely available these materials before having adequately exploited their potential. To analyse this issue from a wider perspective, we need to consider the role of research biobanks as main repositories in which human biological samples are stored, with or without accompanying them with genetic or clinical data (Haga and Beskow 2008). If withholding of biobanks’ resources drastically reduces their full value, their wide sharing is not simple to put into practice. The first and most complex barrier hindering Open Access is the lack of common standards, guidelines and legal frameworks due to socio-cultural differences of countries where biobanks operate (see Capocasa et al 2015 https://peerj.com/preprints/1212/). Developing harmonised standards is a challenge that primarily needs to foster international norms for donors’ privacy, intellectual property and patentability.

Comments

Please log in to add a comment.