Governance of biobanks: benefit-sharing or power sharing?

Abstract

Biobanks pose unique challenges to legal and bioethical frameworks, and raise many as yet unanswered questions, including how these collections of biological samples and information should be governed and for whose benefit. While some commentators have suggested that biobanks should be regulated through specific legislation, I focus on exploring alternative models of governance. I examine, in particular, the interrelationship between benefit-sharing and public engagement, arguing that public engagement is a benefit in itself, valuable both in its own right and as an essential component of good governance, and critically examine proposals for more direct 'representative‘ forms of participant involvement and 'power-sharing‘ arrangements in the biobanking context. Central to my arguments is the concept of the "common heritage", which has been invoked by UNESCO and HUGO in relation to the human genome. From its early beginnings in the law of the sea, this concept has been linked to notions of solidarity, reciprocity and equitable access and sharing. Applied in the context of biobanks, the "common heritage" highlights the value of genetic collections and research for the benefit of present and future generations. Viewed as a third generation human right, the "common heritage" also links to notions of citizenship, civic involvement in policy processes and, ultimately, to participatory or deliberative democracy. From this, I suggest that robust biobank governance mechanisms require not only effective benefit-sharing arrangements but that these must necessarily involve provision for effective public engagement. Drawing on democratic and business management theory, I argue for a 'stakeholder' model of governance. This model draws its basic ideology from communitarian philosophy and regards any organisation (whether it be a corporation or a charity) as a 'social entity', accountable to a broad range of stakeholders. It is my contention that a stakeholder model is the most appropriate model of governance for large-scale population biobanks, such as UK Biobank, which are designed for public benefit, to enhance the health of all, including future generations. In sum, it is a model through which the common interest vested in biobank research might materialise.