The Politics of Representation in the Governance of Emergent 'Secondary Use' Biobanks: The Case of Dried Blood Spot Cards in the Netherlands

Abstract

There is an international discussion to transform the collection of dried blood spot (DBS) card collections resulting from neonatal public health screening programs into a kind of biobank through the formalization of their (prolonged) retention and by expanding their use in medical research and development (R&D) practices. Given the scale of neonatal heel prick screening, these blood samples are increasingly being considered as a wealth of biological data for medical R&D. Due to the fact that donors are newborns and that the primary purpose of DBS is health care, the card collection is not a conventional biobank. However, it may be treated as such if there could be societal support and if a management body could be developed to deal with prolonged retention and use policies. One strategy to gain support for biomedical research is to involve citizens, donors, patients and their representatives and advocates at various stages and levels of the R&D process. This article explores the feasibility of existing notions of patient participation in the governance of medical R&D (in particular biobanking) in relation to the possible transformation of the Dutch DBS collection into a more formal biobank. In doing so we describe some of the current challenges of using of DBS cards for medical R&D, and explore what role patients have played in research processes in general and specifically in biobanking as well as the management of DBS collections. We focus on the current management structure of the Dutch DBS collection, and explore what role for patients and publics is needed to address the current proposal for changes to their storage, management, and use. We conclude by exploring a model of ‘adaptive governance’ in which a Participant Association is created to elect a Participant Board to operate alongside and within the biobank’s management structure (O’Doherty et al. 2011), which could work to increase transparency and trust of R&D decisions on DBS collection. This would neither preclude patient involvement, nor positions such involvement as a kind of panoptic answer to challenges in governance.