Science and Technology Studies

Asbestos is a naturally occurring silicate mineral with long, thin fibrous crystals. It became increasingly popular among manufacturers and builders during the industrial revolution and thereafter in the mid and late nineteenth century, due to its resistance to heat, electricity and chemicals. Asbestos, however, can be hazardous. When asbestos fibers are inhaled or ingested, they can cause serious health damages, including malignant mesothelioma, lung cancer, and asbestosis (Agency for Toxic Substances and Disease Registry 2001). As early as 1898, the Chief Inspector of Factories in the UK reported that asbestos had “easily demonstrated” health risks. In the early 1900s, researchers began to notice a large number of early deaths and lung problems in asbestos mining towns. By the 1930s, England regulated ventilation and made asbestosis an excusable work related disease (Johnston & McIvor 2000; Tweedale 2001).

The bovine spongiform encephalopathy (commonly known as BSE) crisis that exploded in the UK in the mid-to-late 1990s has been regarded as a classic case of failure in the management and communication of health risks to the public. Academic disciplines such as political science, social policy, management studies, sociology of science, science and technology studies, and others, have provided a range of analyses to explain what happened leading up to the crisis, helping us to understand why the management of the crisis was such a failure. One of the motivating factors behind this academic work, as well as the official inquiries, hearings, and reports of the British government, was to learn from this failure, with the hope that such a crisis will not be repeated.

This chapter provides an overview of some of the key findings from these literature sources and places them in a British context. We begin by briefly describing BSE, providing its history in the UK, and relating how it is associated with risks to human health. The rest of the report is divided into the following three parts that reflect the distinct stages in which the management and communication of health risks related to BSE took place in the British context. They include: Period 1 (1986 to 1996): BSE is identified, but only as a cattle and agricultural problem; Period 2 (1996 to 2000): BSE is linked to humans and leads to a health crisis; and Period 3 (2000 to the present): Institutions are transformed and the health risks are ameliorated.

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.

A series of governance issues currently surrounds
the multiple uses and multiple users of dried blood spots
(DBS) for research purposes. Internationally there is a discussion
on storing DBS resulting from newborn screening for
public health and using them as the basis for large biobanklike
collections to facilitate biomedical research. If such a
transformation were to be formalized, then DBS would sit
at the intersection of care (ie, public health) and research,
with the mechanisms through which such a collection
could be managed not totally self-evident. What is more, a
DBS collection raises questions about the fuzzy boundaries
between privacy and anonymity; how to control or define
quality control uses of DBS; medical vs nonmedical uses; as
well as benefit sharing and stakeholder involvement. Our
goal here is to explore some of the key questions relating to
DBS governance by way of the bio-objects and bio-objectification
concepts. By embracing – rather than resisting to
– the blurring of boundaries and problems in categorization
that have come to characterize bio-objects and bio-objectification
processes recently described in this journal, we attempt
to highlight some issues that might not be currently
considered, and to point to some possible directions to go
(or avoid). Building from our knowledge of the current DBS
situation in the Netherlands, we outline questions concerning
the uses, management, collection, and storage of DBS.

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.

This paper explores the interface between users and producers of translational science (TS) through three case studies. It argues that effective TS requires a breakdown between user and producer roles: users become producers and producers become users. In making this claim, we challenge conventional understandings of TS as well as linear models of innovation. Policy-makers and funders increasingly expect TS and its
associated socioeconomic benefits to occur when funding scientific research. We argue that a better understanding of the hybridity between users and producers in TS is essential to encouraging effective TS activities. In arguing for broader understandings of the hybrid roles of user/producers in TS we rely on empirical observations made during our four-year (2006–2009) study of three translational pathways here labeled
clinical, commercial, and civic. These pathways were identified in a large-scale network of scientists investigating the pathogenomics of innate immunity (i.e. “the PI.2 network”).  Through our examination of “user-firms” in the commercial TS case study, of patients and clinician-scientists as users in the clinical TS case study, and of bioinformaticians as user/producers in the civic TS case study, we suggest that the iterative and dialectical nature of TS blurs the lines between users and producers, rendering such distinctions arbitrary and sometimes misleading. We suggest that such a blurred
boundary may be a constitutive, if underappreciated, component of TS. Acknowledging the important role of user/producers may be a crucial step in overcoming translational challenges currently facing the biomedical domain, and in appreciating broader transformations in science.