Making Disease, Making Citizens

The Politics of Hepatitis C

Suzanne Fraser, Kate Seear

• Publisher: Routledge
• Year: 2016
• ISBN:
  9781317102458
• Edition: 1
• Topic: Sciences sociales
• Subtopic: Anthropologie

Since the naming of hepatitis C in 1989, knowledge about the disease has grown exponentially. So too, however, has the stigma with which it is linked. Associated with injecting drug use and tainted blood scandals, hepatitis C inspires fear and blame. Making Disease, Making Citizens takes a timely look at the disease, those directly affected by it and its social and cultural implications. Drawing on personal interviews and a range of textual sources, the book presents a scholarly and engaging analysis of a newly identified and highly controversial disease and its relationship to philosophies of health, risk and harm in the West. It maps the social and medical negotiations taking place around the disease, shedding light on the ways these negotiations are also co-producing new selves. Adopting a feminist science and technology studies approach, this theoretically sophisticated, empirically informed analysis of the social construction of disease and the philosophy of health will appeal to those with interests in the sociology of health and medicine, health communication and harm reduction, and science and technology studies.

Chapter 1
Towards a Quasispecies Epistemology

As we have already noted, medical discourse is an important mechanism through which meanings about hepatitis C are constituted and deployed in culture. In this chapter we begin our sketch of the disease by exploring medical articulations of hepatitis C in the form of review and summary articles tracking developments in knowledge about the virus. We track a key theme through the articles over time – that of scientific progress – noting how discussions of the knowability and containability of the disease, the framing of transmission and the action of testing have changed, and thinking through the meaning and effects of these changes. Our purpose is to offer a first sketch of an approach to knowledge – an epistemology – that helps bring to light some of the forces shaping understandings of the disease and of people who have it. Annemarie Mol and John Law’s work on complexity (2002) forms the inspiration for the chapter’s conceptual focus – one that takes the highly medicalised concept of virus ‘quasispecies’ and refracts it through feminist theory to provide a set of tools for understanding hepatitis C in its social and political complexity. As Mol and Law argue, it is all too easy to criticise ‘oversimplification’ when it comes to understanding social forces, and all too easy to observe that our objects of study are complex. All research, they say, needs to simplify in order to produce coherent accounts of things, but the key task is to stay alert to the complexities lost in these accounts, to build into our methods ways of keeping our eyes on both. This chapter is a starting point for work of this kind. It develops a way of thinking about knowledge production, and epistemology, built on both theoretical and material phenomena.

In generating the analysis presented in this chapter we looked at 29 articles chosen as general reviews, overviews and updates published across a range of medical specialties including hepatology, virology and immunology.1 Between November 2008 and March 2010, online searches of three databases (Medline, PubMed and Google Scholar) were conducted. The keywords used to conduct the searches were: ‘review’, ‘overview’, ‘history’, ‘knowledge’, ‘progress’, ‘evolution’, ‘current perspectives’, ‘new’, ‘to date’ and ‘what we know’. Links to the ‘related’ articles and references lists from those articles identified were also followed. A total of 72 medical journal articles charting the history of the identification of hepatitis C and the growing knowledge about various aspects of hepatitis C were sourced. From this list, articles covering the main issues on hepatitis C research and development (nature of the virus, diagnosis, testing and treatment) with the words ‘review’ and ‘overview’ in the heading were selected for analysis, as well as the medical histories documenting the ‘discovery’ of the virus. This produced the corpus of 29 articles analysed for this chapter.

Towards a quasispecies epistemology

This chapter explores what we will call a ‘quasispecies epistemology’. Its aim is to analyse key features of the construction of hepatitis C through a figurative mobilisation of the virology term ‘quasispecies’. It does this as a means of enacting Mol and Law’s proposal that complexity and simplification need to be held simultaneously if new, more productive analyses of social phenomena are to be produced. The chapter begins with a discussion of the notion of quasispecies, one which makes links with central aspects of Mol and Law’s critique of complexity. In conducting this discussion, the chapter distinguishes a medical ontology of quasispecies from a critical feminist ontology. Despite the differences between the two ontologies that emerge in this discussion, it will be argued that the notion of quasispecies can illuminate how phenomena located at the intersection of stigma, (medical) epistemic uncertainty and political volatility, as is hepatitis C, function to shape marginalised lives and are in turn shaped by them.

What can a thoroughly medical concept such as that of ‘quasispecies’ offer a feminist critique of medicine? This depends on how the concept is handled and to what end it is engaged. As mobilised in medical accounts of hepatitis C, the notion of quasispecies operates mainly as a means of describing an aspect of what is taken, in the most realist of terms, to be an a priori material object. At the same time, however, it is a way of understanding viruses, individuals, groups and processes, and as such can be used in an ontological experiment, provoking a series of political observations about hepatitis C. What does it mean, for instance, to say as did the Journal of Virology in 1992 (Martell et al. 66:5), that hepatitis C circulates as a ‘population’, or as the Journal of Molecular Biology did much more recently (Más et al. 2010: 866), as a ‘clan’? In the first place, we can see that this statement could be understood in the terms drawn from the work of Mol and Law that were elaborated in the introduction; as an expression of hepatitis C as always already multiple. But making this connection in any meaningful way, and to any useful purpose, entails taking a series of steps. Below we systematically engage the medical notion of quasispecies with Mol and Law’s observations about complexity to draw together a feminist quasispecies epistemology. In doing so, we also attend to recent feminist engagements with notions of materiality which argue that the material needs to be brought back into critical accounts of the social (Barad 1998; 2001; 2007). We will then take this epistemology to the literature to see what it brings into view about the medical production of disease.

Populations, clans, multiplicity

The hepatitis C virus turns out in the medical literature not to be a virus at all. Instead it is a population of viruses that differ at the level of genotype, subtype and quasispecies.2 Hepatitis C genotypes can differ in genetic sequence by up to one third. Within each genotype are numerous subtypes, incorporating further variations. Individuals living with the virus can ‘host’ millions of different quasispecies, or genetic forms of the virus that differ further due to changes occurring during replication within the body. According to an authoritative factsheet on hepatitis C (Franciscus 2010: 1):

hepatitis C constantly changes and mutates as it replicates – more than 1 trillion hepatitis C virions replicate each day. During the replication process, the hepatitis C virus will make ‘bad’ copies or errors in the genetic make-up of the newly replicated viruses.

When the body in which the virus is reproducing generates an effective immune response to the most common (or ‘master’) quasispecies, this quasispecies is destroyed, leaving other quasispecies to persist and mutate until they too are identified by the immune system and destroyed.

So, hepatitis C changes constantly. It reproduces itself, but in so doing, sacrifices itself to new forms of self. These new forms are the result of errors – of incompetence, haste, sheer volume. Yet, as the factsheet also tells us (Franciscus 2010: 1):

The process of constant mutation helps the virus escape the body’s immune response – when the dominant quasispecies is eradicated, another quasispecies emerges.

It seems hepatitis C’s orientation to error is also its strength. Martell et al. noted this in 1992 (3225): ‘This quasispecies model of mixed RNA virus populations implies a significant adaptation advantage’. They went on to explain that this ‘allows for the rapid selection of the mutant(s) with better fitness for any new environmental condition’, but also note that ‘quasispecies will remain in stable equilibrium with little evolution of its consensus or master sequence as long as conditions are unchanged’. Much more recently, Bowen and Walker (2005: 415) point, with some awe, to hepatitis C’s relative genomic ‘simplicity’ that nevertheless allows for complex changes during replication. The proneness to error in hepatitis C, they note, ‘is intrinsic to its persistence, allowing for rapid evolution to adapt to immune selective pressure exerted by the host’.

Host? Discussion of the virus ‘host’ appears intermittently in material on hepatitis C quasispecies, and in the broader review and summary literature traced here. The role of the host in shaping the virus is often alluded to, but not treated in any depth. Yet this role appears to be significant. As Davis explained in 1999 (245), ‘The diversity of quasispecies in any individual is related to the size of the individual inoculum. However, the evolution of quasispecies from a common inoculum varies with the host’. In other words, two individuals infected with the same sample of hepatitis C positive blood would, over time, generate significantly different ranges of quasispecies in their bodies. These ranges are dependent upon ‘environmental’ factors experienced by the virus, that is, on individual differences in each body. In short the genetic makeup of the virus actually undergoes change in its involvement with its environment. This is accounted for in the literature in conventional evolutionary terms: the virus reproduces rapidly, and the errors introduced during this rapid reproduction are either advantageous or disadvantageous. Those that work with the environment best persist. Those that do not die out.

While the literature regularly attributes disease chronicity (and in this sense, the ‘success’ of the virus) to the instability of the virus, doubts about these assumptions are also regularly raised in the literature across time. For example, debate has continued over whether hepatitis C’s tendency to produce quasispecies causes the disease’s persistence in the body, or whether the persistent nature of hepatitis C allows for the production of more quasispecies (Alter 1991: 644). Taking a different tack, Smith et al. (1997: 1511) noted in 1997 that aspects of genotyping technique (PCR amplification via reverse transcription) and broader research method were crude enough to warrant suspicion that research may be magnifying the role of quasispecies in interpretations of hepatitis C’s persistence.

Other confusions occur in relation to some of the most basic aspects of the debate. If hepatitis C is multiple, so is the language used to discuss it. Smith et al. (1997: 1511) note in this context that even the word ‘quasispecies’ has multiple lives. It is, for example, used to refer to each of the virus sequences that comprise the collection of quasispecies, or to the unrelated species variants within one individual but arising from different sources, or to several other phenomena. This variation is in part a product of the highly volatile nature of knowledge about hepatitis C since its naming.

The relationship between genotype, subtype and quasispecies differences and practical issues such as symptoms, disease progression and treatment efficacy also continues to be the subject of research and debate, but some certainties have solidified over time within the literature. Some genotypes are, for example, considered more harmful to the body than others. Some are more easily treated, that is they are more likely to be cleared from the body by treatment with combination interferon and ribavirin drug therapy. The significance of subtypes is less clear. Some argue subtypes impact on treatment outcomes, the natural history of disease and the success of transplants, and there is speculation that subtypes will be more closely considered in determining treatment dosage and duration in future. Thus, in spite of the articulation of some certainties about the disease, the characterisation of hepatitis C within medical discourse remains volatile. This is not to say, of course, that this volatility is thoroughly or explicitly articulated in the literature examined here. More will be said about this later. In the meantime it is enough to note that the discourse of knowledge production deployed within the material is relentlessly forward-looking in tone, and as such, rarely acknowledges or reflects on medicine as having been mistaken or wrong in its past pronouncements.

In all, it is possible to speak of hepatitis C as embracing, or better, comprising, a range of uncertainties, populations or clans. Medical knowledge is volatile and multiple, as is the terminology and even the virus ‘itself’. The relationships between various putatively separate phenomena are unclear, or, we might say, difficult to sustain under analysis. Cause and effect cannot be straightforwardly distinguished. Genome and environment are mutually dependent. Knowledge and method shape each other.

Building on the discussion of complexity offered in the Introduction, we can make a series of connections between the idea of quasispecies and theorisations of method inspired by contemporary feminist and science studies. Mol and Law suggest we can generate accounts of complexity when we acknowledge that phenomena are always ‘more than one and less than many’ (2002: 11); when we refuse the temptation to produce reductive and totalising overviews. Hepatitis C is an especially compelling instantiation of this idea in that it is both clearly acknowledged as multiple, and also actively, some would say, aggressively ‘held together’ as a phenomenon for purposes that can (and later will) be argued to be principally political.

Where phenomena are recognised as multiple, it is necessary to adopt strategies for their discussion in ambitious social science research such as that undertaken in this book that can to some degree accommodate, or let us say enact, this multiplicity. For example, according to Mol and Law, we must try to avoid polarising chaos and order, and we must necessarily treat material phenomena as emergent within rather than anterior to the social. Clearly, the quasispecies account of hepatitis C can be read in this light. As we have been told, the disease is always already multiple. Its essence is always in motion via mutation. Indeed ‘chaos’, in the form of continual error, is both its defining nature and its means of survival and success. Causation is also complicated here. Do quasispecies precede persistence or follow it? Does it, in any case, make sense to separate these two factors? Knowledge production about hepatitis C does not rest, nor does the genome – it is continually in flux. The environment within which the genome ‘evolves’ must also constantly change in that it is a human body. Indeed, the way the body is enrolled in medical advice about responding to hepatitis C suggests that diagnosis with the disease will at least sometimes generate active efforts on the part of the patient to change this environment through injunctions against drinking, and in favour of ‘healthy lifestyle choices’ such as good diet and exercise. For our purposes here we shall, therefore, nominate the following features of a quasispecies epistemology:

1. Constant motion;

2. Repetition and change through error;

3. Error and chaos as productive – as enfolded in, rather than antithetical to, order;

4. Phenomena as always already more than one and less than many;

5. Causation as multidirectional, non-linear;

6. Contingency of sameness and difference.

Of course, a key element of a quasispecies epistemology informed by the work of Mol and Law must be a reconsideration of ontology beyond positivist accounts offered within science in general and medical discourse in particular. While the analysis being developed here is provoked by medicine’s presentation of the hepatitis C virus as always changing, multiple, uncertain and so on in its materiality, our treatment of these characteristics is not a positivist one. In other words, as should be evident in what has been said thus far, the epistemology developed here has not been generated via the assumption, as made in the article by Bowen and Walker (2005) and in other work cited above, that hepatitis C is an a priori material object with essential or intrinsic attributes to be taken for granted. That is, whereas Martell et al. (1992: 415) explain that the proneness to error in hepatitis C, ‘is intrinsic to its persistence, allowing for rapid evolution to adapt to immune selective pressure exerted by the host’, the epistemology posited here would not take for granted as separate from and anterior to knowledge production either the phenomenon that ‘persists’ (the virus) or the phenomenon that ‘hosts’ (the body).

Instead, in keeping with feminist science studies work such as that of Barad and Haraway and science and technology studies work such as that of Latour, Mol and Law this approach takes materiality as emergent; as the product and producer of ontological politics. This book’s first author (Suzanne Fraser) has spelt out this approach to materiality elsewhere in an engagement with Karen Barad’s ‘agential realism’ (Fraser and valentine 2008), and the analysis offered here should be read as in keeping with this approach.3 Most importantly, an approach to the materiality of hepatitis C that treats it as emergent allows us to engage with disease as a thoroughly political object, the attributes and effects of which are radically open to change. In the next three sections we track a key theme that runs through the articles – that of scientific progress – mapping, or perhaps ‘walking’ as Law and Mol would suggest (2002), how discussions of the knowability and containability of the disease, the framing of transmission and the action of testing have changed, and thinking through the meaning and effects of these changes. All of these themes shape each other, but will be discussed separately here as a means of drawing out their specific effects and implications as well as their relationships.

Holding progress together

Tracking reviews of scientific knowledge on disease across time offers fascinating though partial insights into the constitution of scientific progress itself. The reviews analysed here appeared on an irregular basis, cover a variety of topic areas within the field of hepatitis C research and often leave large gaps in their accounts of knowledge development. For these reasons, they do not together provide an especially seamless overview of change over time. Of course, as Mol and Law have suggested, seamless overviews come at a price. In bringing together bits and pieces of thought and observation, they create coherence, thereby constituting the objects and subjects they seek to describe, but also excluding or othering elements that do not apparently fit. These elements can continue to haunt the newly constituted object, disrupting it, reminding us that all is not as it seems. Where the constituted object fails to lend itself effectively to conventional explanations, such as in those cases where disadvantage or inequity is insufficiently well articulated, this exclusion and haunting emerges as a significant impediment to understanding and effective action. The result, were we to attempt such a process of constitution here, would be something akin to the timelines often constructed in attempts to track medical knowledge over time, and of which hepatitis C has attracted many (see for example Nature Reviews (Microbiology) at http://www.nature.com/nrmicro/journal/v5/n6/fig_tab/nrmicro1645_Il.html and BBC News at http://news.bbc.co.uk/2/hi/uk_news/scotland/988329.stm). Timelines carry within them a temporal logic that tends to posit states of lesser development moving to states of greater development, as the ‘truth’ of objects is gradually revealed. The reviews found in the peer-reviewed medical literature to do the same – both individually and collectively – if we allow them to. By this we mean that a discursive strategy consistently found in the material, one it is wise to register and query, is the positing of breakthroughs, advances and achievements. It is also the case that obstacles and challenges are identified, but as we will show below, the language of the obstacle or the challenge reinforces, rather than departs from, the generally progressivist, triumphalist tone.

The first review of knowledge (Alter 1991) appears shortly after the hepatitis C genome had been cloned and sequenced. This event forms the basis for many expressions of medical triumph over time in the literature, but it most directly anchors the positive tone of material contemporaneous to it. So, as Alter (1991: 648) puts it, ‘There is optimism that a recombinant vaccine could be produced because the entire genome has been sequenced’. Alter describes vaccine development as in its ‘infancy’, a metaphor that acknowledges an absence of expertise but also implies that, just as infants grow and mature, so will knowledge. Alter also states (1991: 649) that ‘[t]he cloning of HCV is a remarkable accomplishment that has led to many important observations in a very short time. Our knowledge is expanding exponentially…’.

Reference to the early discoveries and triumphs of hepatitis C scientific research is made over and over in this literature, even, or especially, as realisations about the disappointing prospects for achieving in a timely fashion key goals such as a vaccine began to sink in. Three years after Alter’s comments, for example, Purcell (1994: 181) describes the cloning and sequencing of the hepatitis C virus as ‘one of the outstanding scientific achievements of the past decade’. This does not mean all is solved however. While, according to Purcell, the near-eradication of iatrogenic transmission of hepatitis C via blood products (such as those required in surgical operations or consumed by people with haemophil...