Science and Citizens

Globalization and the Challenge of Engagement

Melissa Leach, Ian Scoones, Brian Wynne, Melissa Leach, Ian Scoones, Brian Wynne

• Publisher: Zed Books
• Year: 2013
• Print ISBN: 9781842775516
• eBook ISBN: 9781848137769
• Edition: 1
• Topic: Politics & International Relations
• Subtopic: Civics & Citizenship
• Index: Politics & International Relations

Rapid advances and new technologies in the life sciences - such as biotechnologies in health, agricultural and environmental arenas - pose a range of pressing challenges to questions of citizenship. This volume brings together for the first time authors from diverse experiences and analytical traditions, encouraging a conversation between science and technology and development studies around issues of science, citizenship and globalisation. It reflects on the nature of expertise; the framing of knowledge; processes of public engagement; and issues of rights, justice and democracy. A wide variety of pressing issues is explored, such as medical genetics, agricultural biotechnology, occupational health and HIV/AIDS. Drawing upon rich case studies from Asia, Africa, Latin America and Europe, Science and Citizens asks: · Do new perspectives on science, expertise and citizenship emerge from comparing cases across different issues and settings?
· What difference does globalisation make?
· What does this tell us about approaches to risk, regulation and public participation?
· How might the notion of 'cognitive justice' help to further debate and practice?

THREE | Citizens engaging with science

Commentary

MELISSA LEACH, IAN SCOONES AND BRIAN WYNNE

This section presents a series of cases that draw on and extend the themes raised in the last section. They illustrate interactions between publics and science in a variety of settings, raising questions about forms of knowledge, epistemology and expertise. These cases show public engagements with science to be bound up with material struggles for health and livelihoods, and social solidarities that emerge to address these, whether among patient groups in the UK, labour unions in India or HIV/AIDS activists in South Africa. The cases consider how contemporary configurations of the state, civil society, the private sector and international organizations, as well as emergent coalitions and alliances that cross-cut these categories and distinctions, shape the possibilities of different types of citizen engagement.

Richard Tutton, Anne Kerr and Sarah Cunningham-Burley’s chapter, through an examination of a focus group working on gene patenting in the UK, shows how perspectives brought to public debates about science and technology reflect different people’s lived or imaginary perspectives. This is true for both ‘publics’ and ‘experts’. Tutton et al., however, show the necessity of deconstructing such categories, demonstrating them to be contextual, performed and contingent as people seek to position themselves and each other in ways that might shift even in the course of a conversation. Particular ideas of citizenship or non-citizenship are created through these discussions. There are limits to this negotiability, however, as, in order to create meaningful alliances, people latch on to particular discourses or framings; for example, a company being an exemplar of ‘good practice’ or a pariah. This is an illustration of a broader pattern where, in order to create political solidarities, multiple subject positions and perspectives must coalesce around a particular discourse in order to press claims.

Engagements between publics and science involve complex forms of (often temporary) coalition, alliance and hybrid organization between actors of different kinds. This is illustrated by Steven Robins in his discussion of the alliances that formed around the ‘dissident science’ camp, arguing against a singular viral cause of AIDS, and the Treatment Action Campaign (TAC) position, fighting for access to anti-retroviral drugs in HIV/AIDS treatment in South Africa. Robins’s chapter also shows how public science engagements interrelate with, and can become coloured by, historically embedded cultural and political frames of meaning, in this case the interpretation of AIDS through racialized lenses linked to South Africa’s apartheid and post-apartheid history. In this context, TAC has adopted a very particular, and effective, campaigning discourse that has foregrounded treatment regimes and access to drugs, and has backgrounded the well-recognized complexities of AIDS causation. As TAC activism shows, emergent solidarities straddle local, national and global spaces, perhaps, as Robins suggests, constituting a form of ‘globalization from below’.

Other chapters similarly address the processes and terms by which public science policy engagements proceed, drawing attention to a variety of dimensions and scales. Thus Dr Murlidhar V.’s chapter on occupational health in India illustrates the role of a non-governmental organization (NGO), in alliance with labour unions, in forging a connection between the previously quite autonomous life-worlds of workers and medical scientists, struggling to get the former recognized by the latter. The terms of this engagement are, however, those of medical science, as are their mechanisms and means of legitimacy – such as publications in scientific journals and training workers to use measuring instruments. This is an example of ‘citizen science’ in the classic and relatively restricted sense of equipping publics with the ability to engage with science on its own terms. Nevertheless, in facilitating access to medical science for workers, it offers opportunities for treatment, compensation claims and improvement in working conditions. These feed positively into other dimensions of citizenship, including the claiming of political and economic rights. This illustrates a more general point – that public engagements with science can have wider and unanticipated effects on other dimensions of empowerment and citizenship. Potentially, such dimensions could also feed back into a reflexive capacity and an epistemic awareness, and so claims for ‘cognitive justice’ around other issues.

As Kees Jansen and Esther Roquas show, many of these context-specific understandings of issues are occluded through processes of internationalized science. Looking at the particular case of biotechnology regulation, they examine how international epistemic communities, particularly as propagated through international networks and committees of scientific advisers, construct and impose internationalized forms of ‘cognitive consensus’ and notions of ‘best practice’, whether around risk assessment or instrumentalized forms of participation. They draw attention to the inequalities in these international forums and the frequent under-representation of developing-country perspectives. These internationalized perspectives are often detached from locally contextualized experiences and complexities, yet they become imposed on them via national regulatory frameworks that are expected to implement them. They characterize this process and the problems it causes as ‘absentee expertise’. With their focus on Latin America, they show how this arises in places where there is limited national scientific capacity.

While globalization may be promoting and giving power to such international epistemic communities, their effects in particular countries are inevitably mediated by the nature of states, bureaucracies and society. This is illustrated clearly in James Keeley’s chapter, which examines the relationship between international discourses concerning biotechnology and the modernizing developmental projects of the Chinese state. Keeley’s account echoes the familiar observation that significant cultural and social issues are seamlessly translated into scientific discourses. In this case, we see the state’s overall commitment to modernization as a socio-historical project being manifested in discourses around science, risk and nature. The chapter discusses how a pro-genetic modification (GM) discourse, propagated by alliances between private sector actors and international organizations, has been partially taken on, but also in parts subverted and challenged, by actors within China. He also locates the construction of citizenship in this context, showing how a state collectivist notion of the Chinese citizen is being challenged by more liberal, individualist, market-and consumer-oriented perspectives.

Considering citizenship in terms of mobilization around highway construction in Brazil, Angela Alonso and Valeriano Costa’s chapter focuses on the political conditions for such mobilization. The chapter reminds us of the importance of social profiles, social and political interests, membership of and engagement with forms of association and access to formal institutions in effecting patterns of mobilization. These structural political dimensions interplay with the more cognitive, discursive dimensions, which are given more emphasis in other cases, in shaping the way public engagements with science play out.

Sheila Jasanoff starts from these important political questions, but moves on to a more explicitly discursive analysis, asking, for example, what implicit political subjects are inhabiting the definitions and framings of issues. She shows how, in the case of Golden Rice biotechnology, it is framed as a universal solution, ‘a view from everywhere’. Yet this serves also to erase particular forms of political subject or citizen in favour of a mass representation, skipping over lived experiences and erasing particular political constellations that might articulate these lived experiences and alternative possibilities. Her discussion of this case echoes Brian Wynne’s argument about technical discourses embodying implicit assumptions about the human subject and social relations. As Jasanoff suggests, this raises major questions about the avenues through which alternative views of what a technological society might look like can be expressed.

One such avenue is discussed in Paul Richards’s chapter, where he makes the case that discussions about biotechnology and plant breeding need to be embedded in international human rights discourses concerning the right to food. Richards shows how institutionalized science – increasingly a private-sector-led version – embodies a particular construction of farmers and the needy poor, yet there exist a variety of other technology needs that may be more appropriate responses. By shifting the frame from one focused on the risk of starvation to one of rights and cognitive justice, a different perspective on agricultural/food technology priorities opens up; one that can be more attentive to the rationalities and agendas of poor farmers’ own agricultural innovations. These agendas also embody alternative political and societal agendas: as Richards suggests, local ideas about food security and seed exchange reinforce notions of solidarity and rights – in effect, citizenship. As he puts it, ‘local seed systems do not just yield food; they also “grow” communities’.

7 | Myriad stories: constructing expertise and citizenship in discussions of the new genetics

RICHARD TUTTON, ANNE KERR AND SARAH CUNNINGHAM-BURLEY

Introduction

In this chapter, we explore the ways in which people in the UK discussed the patenting of genes in a series of focus group conversations. We consider in particular people’s discussion of the case of Myriad Genetics, a US company that holds patents on BRCA1 and BRCA2, two genes involved in the hereditary forms of breast and ovarian cancer. The Myriad case was a vignette in our study of the ways in which people position themselves and others when talking about access to genetic information, particularly the issues of ownership and regulation.¹ We introduced this case to the focus groups to engender discussion about the implications of patenting for genetic testing. We are interested in the ways in which people took on the roles of ‘expert’ or ‘citizen’, explicitly or implicitly, when they considered these issues, and what types of knowledge-claims and moral judgements these positions involved. The discussions about Myriad covered concerns about competition within science and medicine, the accuracy of different types of genetic tests, the globalization of genetic information and the relationships between multinational firms, national governments, scientific and health professionals, public healthcare, patients and consumers. These wider issues of commercialization and the public/private interface surfaced at different points in the focus group discussions, and responses to these embraced moral, political and economic arguments. What people bring to these debates, and the extent to which they are heard or can influence policy, depends on constructions of expertise and citizenship and the different knowledges, experiences and subjectivities implicated in such roles.

After providing some background to the Myriad case we discuss the focus group methodology that we employed, before moving on to analyse the different ways in which groups discussed Myriad. The analysis provides an outline of the different ways in which groups, and sometimes individuals, came to different or similar positions; reflection about the ways in which knowledge-claims and moral values were involved; and discusses the reasons why particular groups or individuals may have framed their accounts in these ways. We identified two main ways in which Myriad was constructed in these discussions: as an exemplar and as a pariah – although these should be seen as two sides of the same coin as both interrogate the relationship between Myriad’s actions and the role of private enterprise in the realm of genetic research, testing and healthcare. These versions of Myriad are highly flexible and contingent, and can be understood only within the context of these research conversations. Our analysis emphasizes such contingency by examining the construction of expertise and citizenship, and offers an interpretation of why particular groups may settle upon specific subject positions vis-224;-vis gene patenting and Myriad’s activities. We deliberately do not attempt to reach a conclusion about what the majority of groups thought ought to happen with respect to the enforcement of the Myriad patent in the UK, or about the regulation of gene patenting more generally. Indeed, we explicitly reject such an analytical construct because it would be too simplistic, given that people’s accounts of these issues are neither static nor resolute. We also avoid categorizing groups according to types such as ‘layperson’ or ‘professional’, and comparing their views within this framework, as this involves fixed notions of expertise and laity that do not do justice to the range of authority claims involved in the discussions.

We end the chapter by reflecting upon the implications of our analysis for exercises in public consultation and professional–public dialogue about genetics. We argue that normative theories of expertise (see Collins and Evans 2002) or ideal models of citizen participation, such as citizens’ juries, involve setting up artificial boundaries between citizenship and expertise, and between the knowledge-claims and moral values on which they are based – boundaries that are forever changing in discursive practice. Analysts and participants alike need to pay more attention to the structure and function of ‘authority claims’ in these types of public–professional dialogue, in order to answer the questions as to why they are being made, by whom, in what context and to what effect.

A Myriad story

The US-based company, Myriad Genetics, holds international patents on BRCA1 and BRCA2, two genes involved in hereditary forms of breast and ovarian cancer (Dalpé et al. 2003). There has been marked opposition to these patents in several European countries and Canadian provinces on the grounds that they are too broad, with the effect of placing Myriad in a monopolistic position in relation to BRCA testing (Clement 2002; European Parliament 2001; Henley 2001; Wadman 2001; Whestphal 2002). Opponents of the patents argue that they could stifle the invention of alternative diagnostic techniques and limit patient access to the tests, especially in public healthcare systems, since there is no check on what Myriad can charge. They have also expressed concern about the company’s policy that tests requiring full sequencing of the BRCA genes be sent to their laboratories for completion (Rimmer 2003). This raises the prospect of Myriad being able to construct a large proprietary database to reinforce its dominance in this and perhaps other areas of clinical research. Opposition to the Myriad patents has culminated in a legal challenge by the Institut Curie in France and other research agencies in Belgium and the Netherlands, supported by their respective national governments (Henley 2001; Rimmer 2003). Myriad has responded to these criticisms by arguing that patents allow them to protect their investment in this costly area, and to provide tests of the highest quality (Rimmer 2003). In Britain, Myriad originally signed a licensing agreement with a British company, Rosgen, to conduct BRCA tests for private healthcare patients, but this company has since gone into liquidation. Negotiations with the Department of Health about the provision of BRCA1 testing for National Health Service (NHS) patients are ongoing (Meek 2000a, 2000b). In the meantime, NHS laboratories continue to perform their own in-house tests without payment of royalties to Myriad (Nuffield Council on Bioethics 2002).

Focus group methodology

We convened a range of discussion groups as part of our research into expertise and citizenship in terms of the new genetics. These can be broadly termed focus groups because we, as the researchers, moderated each group and emphasized interaction between group members rather than between individual participants and ourselves. In this chapter, we present data from eleven groups: genetic counsellors; members of a support group for people affected by cancer; members of a government advisory commission on genetics; school pupils; members of an umbrella organization for people affected by genetic conditions; refugees; members of a Friends Meeting House; members of campaign groups concerned with genetics; university scientists; clinical geneticists/genetic nurses; and actuaries with an interest in genetics. With the exception of the members of the umbrella organization for people affected by genetic conditions, the people in these groups already knew each other. Some, such as the clinical geneticists, actuaries and policy advisers, worked together closely. Others met regularly in religious (Friends Meeting House group), educational (school group) or conference (counsellors) environments. Most of these groups involved around four people. Only two people turned up to the group for members of the umbrella organization for people affected by genetic conditions. We have still called this a focus group, however, because the same format was used and the two participants discussed issues with each other rather than responding in turn to a question from the moder...

Table of contents

• Cover
• Title
• Copyright
• Contents
• Foreword by John Gaventa
• One | Science and citizenship
• Two | Beyond risk: defining the terrain
• Three | Citizens engaging with science
• Four | Participation and the politics of engagement
• List of contributors
• Bibliography
• Index
• Notes