Debating Human Genetics

Contemporary Issues in Public Policy and Ethics

Alexandra Plows

• Publisher: Routledge
• Year: 2010
• Print ISBN: 9780415451109
• eBook ISBN: 9781134057856
• Edition: 1
• Topic: Medicine
• Subtopic: Ethics in Medicine

Debating Human Genetics is based on ethnographic research focusing primarily on the UK publics who are debating and engaging with human genetics, and related bio and techno-science. Drawing on recent interviews and data, collated in a range of public settings, it provides a unique overview of multiple publics as they 'frame' the stake of the debates in this emerging, complex and controversial arena.

The book outlines key sites and applications of human genetics that have sparked public interest, such as biobanks, stem cells, genetic screening and genomics. It also addresses the 'scientific contoversies' that have made considerable impact in the public sphere – the UK police DNA database, gene patenting, 'saviour siblings', and human cloning. By grounding the concepts and issues of human genetics in the real life narratives and actions of patient groups, genetic watchdogs, scientists, policy makers, and many other public groups, the book exemplifies how human genetics is a site where public knowledge and value claims converge and collide, and identifies the emergence of 'hybrid publics' who are engaging with this hybrid science.

1
Methodology and publics overview

Introduction

First, this chapter further interrogates what is meant by ‘public engagement’, showing how social movement theory (SMT) tools and principles have informed both a definition of public engagement with human genetics, and the accompanying methodology for studying it. Hybrid, fluid publics are shown to be engaging with human genetics in many different contexts. This first section also defines, and provides examples of, the sorts of public engagement identified during the research. Second, the chapter discusses the qualitative methods which formed the basis for data collection. Third, this chapter introduces a ‘cast list’ of the different publics whose voices are heard throughout the book. This section introduces the two case study sites which were the core focus of qualitative research; environmental social justice and Disability Rights groups who for various reasons tend to be cautious about or critical of human genetics applications; and patient groups and their supporters, who tend to be extremely supportive of them. This section also introduces other civil society groups who are engaging in the debates, noting that scientists, policy makers and the media are also key ‘prime movers’.An overview of ‘the general public’ and how ‘the general public’ engages, or could engage, with human genetics provides further reflections on concepts of hybrid civil society.

Section one: researching public engagement with human genetics

A social movement theory (SMT) approach was undertaken for the identification, understanding and theorising of public engagement with human genetic technologies. Whilst a ‘social movement’ is a specific type of collective protest behaviour,¹ SMT concepts can be seen as tools in a toolbox, used to understand a range of types of public engagement/social life (Doherty et al. 2003). One of the most straightforward uses of SMT informing this book is the description of social interaction as interaction between networks. Much public engagement with genetics can be described as the interaction of and between social networks of various types, in very different settings. Social movements – and other sorts of social networks – operate through fluid network activity, disseminating information, constructing identities, and developing sets of meanings, or frames (Diani 1992). These interactive, organic, horizontal (that is, non-hierarchical) network processes have been defined as ‘rhizomic’ (Deleuze and Guattari 1987). Resources such as information and knowledge (values, meanings) are disseminated between networks with ‘weak ties’ links to each other (Granovetter 1973; Carroll and Ratner 1996). Understanding public engagement with human genetics in terms of the network relationships which individuals and groups have with each other enables an understanding of social hybridity and assemblage as the links people make when catalysed by specific issues and circumstances.

Informed by social movement theory, ‘public engagement’ is defined in this book as a self-starting social phenomenon – social movement – as well as being a specific form of policy process. Public engagement is thus defined as the phenomenon and process of multiple publics engaging with human genetics in multiple ways, including protest activity. For example, a Disability Rights protest about prenatal genetic screening for Down’s syndrome is public engagement. A radio phone-in on ‘saviour siblings’ is public engagement. Scientists being interviewed in the media about ‘breakthroughs’ is public engagement. Public engagement of this type represents much of the data on which this book is based.

Another important term is mobilisation. Tarrow (1998) discusses mobilisation as social movement activity; mobilisation is both the process, and the end result, of activist networks. The terms mobilisation, and mobilising publics, are used throughout the book to emphasise the sense of public engagement as an active phenomenon, consciously undertaken by different social actors; people engage, people mobilise, over human genetics, in many different ways. The introduction discussed the importance of the concepts of ‘prime movers’ (McAdam 1986), and ‘early risers’ (Tarrow 1998), in the mobilisation process. Framing, an important social movement concept, was outlined in the introduction as being central to an understanding of how different actors develop their worldviews, or ‘lifeworlds’ (Habermas 1987) in specific contexts. Most of the actors described in the book are prime movers and early risers, many of whom were predisposed to mobilise, because their groups and networks predated ‘human genetics’ as an emergent social phenomenon. These groups thus brought their pre-existing frames to the ‘human genetics’ debates, and developed these frames in this new context (Nelkin 1995; Plows and Reinsborough 2008). Melucci (1996) describes how social movements go through periods of dormancy or ‘latency’, and that out of such latent networks prime movers and early risers emerge to frame the stakes of the debates, and to catalyse mobilisation.

The social geographer Paul Routledge has written about the ways in which specific social networks create ‘convergence spaces’ (Routledge 1996, 2003). The term convergence space can be taken to mean the conscious creation of (generally, but not exclusively) physical space by specific people (groups, networks) who then converge, within or through it. Such convergence spaces can catalyse hybrid activity. Thus broadly defined, a convergence space can consist of anything; a typical example would be a workshop, or a prearranged online blog session between geographically dispersed social actors. A protest can be seen as a convergence space. A meeting of the UK Human Genetics Commission (HGC) can be seen as a convergence space. ‘Accidental’ or ‘organic’ convergence spaces can occur; an informal meet-up of scientists around the water cooler can be a convergence space. A patient group ‘prime mover’ making fortuitous hyperlinks online creates a convergence space. Throughout the book, situated examples are given of the sorts of public engagement techniques which different publics employ. The key forms of this mobilisation can be summarised as being:

• networking (informal and formal) and capacity building within groups and networks

• protests

• lobbying

• input into policy/regulatory processes

• public education, ‘awareness raising’ and engagement work; events, literature, websites

• constructing, and interacting with, others as ‘allies or enemies’

Different chapters provide specific examples of this broad range of public engagement. For example, campaign groups often run workshop events consciously aimed at capacity building primarily within their own existing networks and groups. An example is the workshops on genetics, science and technology at the European Social Forum (ESF) in London, 2004 (Welsh et al. 2007). The ESF is an annual event of European grassroots networks, groups, NGOs and far-left political parties, and is an important event in the constantly co-constructed process of global civil society networks which have been termed the ‘anti’ [alter] globalisation movement. Whilst high-visibility ‘summit hopping’ by ‘the movement of movements’ at G8 and similar summits is part of a now long established repertoire of action², events like the ESF show the more latent work of movement capacity building. Participant observation was conducted at this event, which involved participating in the workshops being run on human genetics and bioscience more generally. Appendix 3 is a list of these workshops. It shows what human genetics developments/applications were catalysing mobilisation at the time, how these were framed, and which groups and networks were ‘prime movers’ and ‘early risers’. These are very much emergent frames and show the process of meaning construction in action. Generally, groups and individuals within these sorts of networks are often predisposed to undertake protest activity, which often performs a symbolic function and not always (or just) a disruptive one. Importantly, some of these groups will also engage with policy processes. Campaign groups and networks, especially the more ‘established’ charities and NGOs, also have a strong focus on ‘awareness raising’, for example through websites, publications and public events. These are the more public-facing aspect of network and group and NGO activity, for example the publications produced by the UK NGO/‘watchdog’ GeneWatch and the patient charity AMRC in relation to issues such as genetic testing. Many of the groups which engage in this way also engage with policy and regulation as ‘expert stakeholders’, for example responding to public consultations.

Public engagement defined as a policy practice, and ‘public consultation’ as a specific form of policy-defined public engagement, are very different types of public engagement, and are the primary means by which policy engages with public opinion. Public engagement as policy ‘best practice’ was developing in scope in the research timeframe. In Brussels in 2005 the EU held a forum entitled ‘Science in Society’³ which fed back the results of EU-wide policy initiatives to develop means of engaging with different publics and identifying their views; this is part of ongoing EU policy to develop public engagement as an integrated part of informing science policy through widening the stakes for future initiatives. A UK-led initiative which actively fed into the Science in Society event was the concept of ‘upstream public engagement’ (Wynne 2006; Wilsden and Willis 2004) which aims to engage ‘key stakeholders’ earlier on in the planning processes to better identify risks and benefits. Other recent policy-orientated initiatives which aim to develop public engagement methods and outputs include citizens juries (Greenpeace 2005) and ‘science cafés’.⁴

However despite such laudable aims, which have certainly improved public engagement approaches, public engagement as policy practice is still strongly criticised by many different participants. Many ‘prime movers’ identify limited terms and remits, and hence end results, embedded within policy-led public engagement, especially public consultations. These limits are even acknowledged by policy makers. The ‘Effective Consultation’ Cabinet Office report cited in the introduction identified public cynicism, even – or especially – amongst those who already engage in such processes, who asked the rhetorical question: what is the point of engagement? For a policy process to be underway, someone, somewhere has already set the stakes, and thus identified who counts as a stakeholder. There is much criticism, sometimes acknowledged by policy and regulatory authorities, of how agendas are being set in relation to human genetics and science generally; certain groups feel there is a lack of legitimacy for certain frames, whilst other accounts are privileged. From this perspective, even ‘upstream’ public engagement, which aims to include identified stakeholders early on in consultation processes, can be seen as having limited use when the policy agenda (and hence the identification of stakes, and stakeholders) has itself been set so far ‘upstream’ by politically powerful actors. The ensuing public debates have been ‘framed’ on many counts; publics thus have no option but to respond to issues as they emerge on terms they would not necessarily have set themselves. Many prime movers and other publics are wary of public engagement, and whilst they might engage with the processes, they usually have quite cynical expectations about what this may achieve. Because of this, they choose to develop their own forms of engagement including forms of protest (Welsh et al. 2007) in order to set their own agendas on their own terms. How the stakes of public engagement are set, and how different groups struggle to re-frame the stakes of the debate, are key issues in this book and are returned to in different settings.

Science communication can be seen as a form of public engagement. The rise of science communication as an actual academic discipline is significant. Imperial College launched the first science communication masters degree in the UK in 1991 (and also supervises doctoral students), citing these opportunities as ‘highly relevant to those seeking careers in public engagement or science policy’.⁵ Resources have been invested, from both public and private funding sources, to promote ‘public communication of science’. The Science Museum’s Dana Centre, for example, ‘takes a fresh, no-holds-barred look at the biggest issues in science today’.⁶ This has laudable aims – it is essential to make science accessible – but there is also a danger that such approaches rely on a ‘deficit model’ of public understanding of science. Several science departments and projects are running philosophy and social science programmes in parallel with their work on human genetics, such as University College, London (UCL ca. 2008). What is significant here, is the acknowledgement from the natural science ‘prime movers’ running such courses, that other disciplines, perspectives, ‘lifeworlds’, have much to offer the natural sciences in terms of identifying what the key issues at stake are; in framing the debates in a different way. Bucchi (2004) identifies ‘cross-talk’ between scientists and publics. This ‘cross-talk’ has the potential to ‘tilt the frame’ through an open approach to issues of meaning, knowledge and expertise in relation to human genetics debates. It has the potential to feed back to policy in terms of identifying a broader range of stakes and stakeholders.

Section two: methodology

The data used in this book was drawn from a three-year UK academic project on public engagement with human genetic technologies, entitled ‘The Emerging Politics of Human Genetic Technologies’,⁷ undertaken between 2003 and 2006/7.⁸ The predominant focus was on the UK, with attention also paid to EU and international publics, where the data was available within the limited scale of the project. The social dynamics of multiple publics were traced, identifying core areas of interest and concern in relation to a broad variety of issues and themes. This process first identified those social actors who were a very visible presence on the social stage. Informed by previous research by the research team (Chesters and Welsh 2006; Plows 2003, 2004; Doherty et al. 2003, 2007), the project also identified social networks, groups and individuals who were predisposed to become engaged in the debates, or whose existing frames and forms of engagement were arguably less well represented in consultation processes and in other policy/public settings than some more visible others. Identifying these more hidden voices enabled an overview of a broader pool of social actors, and it is the potential of this data to inform and develop the debates on ‘human genetics’ which is a key focus in this book.

The research methodology was qualitative, drawing first on documentary and other types of data logged at specific sites and events, including online data such as web blogs and websites, noting an increasing tendency for people located in specific places to use the internet, for example by ordering genetic tests online. A key qualitative method used was ethnography or participant observation, which is a means of understanding a social phenomenon through personal participation in events by the researcher. Participant observation was deliberately developed as a methodological form of ‘upstream public engagement’ in that participation in grassroots settings enabled a clear view of what people were doing and saying in relation to human genetics on their own terms (Plows 2008a). Such participant observation is founded on principles of ‘grounded theory’ (Hammersley 1993) in that it was inductive; the project was led by what was discovered in grassroots settings, in interviews and in different public settings such as media debates. Importantly, through this use of participant observation, public engagement was thus traced opportunistically as it emerged onto the social stage in response to...

Table of contents

• Genetics and Society
• Contents
• Acknowledgements
• Introduction
• 1 Methodology and publics overview
• 2 Stem cells and cloning
• 3 Biobanks and databases
• 4 ‘PharmacoG’ as product and process
• 5 Genetic testing and screening
• 6 Genetic exceptionalism, health, identity and citizenship
• 7 Informed consent, individual choice
• 8 Futures talk
• Conclusion
• Appendix 1: List of anonymised interviewees
• Appendix 2: List of acronyms and their website references
• Appendix 3: European Social Forum workshops
• Notes
• Scientific Glossary
• Bibliography
• Index