Hepatitis C Narratives and the Dawn of
Biological Citizenship: Unravelling the
Policy Implications
Michael Orsini
Assistant Professor, School of Political Studies, University of Ottawa (Canada), 1
Stewart St., Ottawa, Canada, K1N 6N5, email: morsini@uottawa.ca
Abstract
A number of authors from fields as diverse as anthropology, sociology, and political
science are asking important questions about the dawning of a new kind of
citizenship – biological citizenship – and its implications for how we understand the
relationship between the state and civil society actors. The perspective of biological
citizenship can be expanded to include the emergence of illness as a new political
cleavage, as an identity through which citizens frame their political demands and
challenge authorities for forms of redress. Using the case study of Hepatitis C in
Canada, this chapter asks whether these new forms of citizenship, rooted in illness
identities, undermine other dimensions of citizenship, and the possible implications
of such a shift for how we understand public policy in general and health policy in
particular. Is biological citizenship contributing to a new wave of contentious
politics which takes as its starting point the citizen’s relationship to his/her
biological body? Or, rather, must we examine how in the process of contestation,
illness activists may reinforce particular ways of seeing and knowing the biomedical
body? The illness narratives of Hepatitis C patients also reveal how biological
citizens are “made up” from above (by government, scientific and medical
authorities) and from below, by patients themselves who work to contest biological
and biomedical truth claims. Their ability to problematize official knowledge
regarding Hepatitis C, however, depends on a number of factors, including the
social status of infected individuals, in this case whether they were infected through
intravenous drug use or through the blood system.
Introduction
2
Adriana Petryna’s Life Exposed: Biological Citizens after Chernobyl
(2003) describes biological citizenship as “a massive demand for but
selective access to a form of social welfare based on medical, scientific and
legal criteria that both acknowledge biological injury and compensate for it”
(2003: 6). As she explains, “the damaged biology of a population has
become the grounds for social membership and the basis for staking
citizenship claims.” (2003: 5) This chapter asks whether new forms of
‘biological citizenship’ are undermining or reinforcing other dimensions of
citizenship, and the possible implications of such a shift for how we
understand public policy generally and health policy specifically. Is
biological citizenship contributing to a new wave of contentious politics that
takes as its starting point citizens’ relationship to their biological bodies? Do
these new forms of contention, for instance, challenge the architecture of the
welfare state as we know it? As Garland (2003: 62) has argued, for instance,
citing the work of French sociologist Pierre Rosanvallon, that “thinking of
the welfare state as a risk management state shifts our attention away from
conflicts over the means of production and towards conflicts over the means
of security. In this analysis, the key historical actors are not so much social
classes as risk categories…” Biological citizenship promises to open up
important spaces for citizen engagement, encouraging citizens to become
intimately acquainted with their biological destinies. This is most clearly
3
evident in the discourse of genetics, in which the suggestion is that genetic
knowledge has the potential to revolutionize societies and empower
citizens/health consumers to take charge of their own health. To “know thy
genetic self” thus becomes a duty of responsible citizenship in the age of risk
(see Petersen and Bunton 2003).
The first section expands upon the idea of biological citizenship,
focusing on how the term has been used by social scientists. The second
section of this chapter discusses the links between illness identities (or illness
narratives), biological citizenship, and public policy. The third section
contextualizes the discussion of illness identities in the wake of the
burgeoning literature on the risk society. The fourth section applies some of
these concepts/ideas to a research project I am currently leading on Hepatitis
C in Canada, which is funded by the Canadian Institutes of Health Research.
To date, 74 in-depth qualitative interviews have been conducted with a broad
sample of persons infected with Hepatitis C throughout the country,
including those infected through the blood system, in the course of surgery,
or through intravenous drug use. Although we are still in the process of
analyzing the interviews, I offer here some general themes that are emerging
from the interviews. Finally, I offer some preliminary implications for public
policy of taking seriously the challenges associated with the emergence of
4
biological citizenship. Before proceeding, I will provide some background
on Hepatitis C itself.
Hepatitis C: A Brief History of the “Other” Virus
While knowledge about hepatitis was amassed during the first decade
of the AIDS epidemic, it continued to elude the scientific and medical
communities. Hepatitis was not a new disease, however. Epidemics of
hepatitis have been traced back as far as the 18th century and possibly as
early as the time of Hippocrates (4th century B.C.) There are reports of
outbreaks of hepatitis infection as far back as 1883, when thousands of
factory workers in Germany contracted it after being inoculated with small
pox vaccine. One of the most serious outbreaks occurred in the period
following World War II, during which large pools of pooled and dried serum
were used on the battlefield. The U.S. Army Medical Corps, for instance,
found that a significant number of wounded soldiers who received blood
transfusions had inflamed livers. In addition, they discovered that more than
30,000 American servicemen who were vaccinated against yellow fever had
contracted Hepatitis.
The three most common strains of hepatitis are A, B, and C. Hepatitis
A, which is normally transmitted by the fecal-oral route, is highly infectious.
5
It is normally spread through contaminated water and food, and is more
common in poorer nations, although there have been a few outbreaks
recently, one of which was traced back to a Toronto supermarket. Unlike the
other strains of hepatitis, there are few cases of Hepatitis A Virus (HAV)
being transmitted by blood. Hepatitis B Virus (HBV), on the other hand, is
transmitted primarily by injection drug use, sexual contact, perinatally (from
mother to child), and through blood transfusion. People infected with HBV
experience symptoms similar to those infected with HAV, but they are often
more severe and longer lasting. While many clear the virus, for a time public
health authorities became concerned with that sub section of individuals who
developed chronic hepatitis but remained symptom-free. As a result,
infection through blood transfusion became commonplace as many infected
people unknowingly donated blood unaware that they were infected. Before
a specific test for HIV was available, blood was tested for the presence of
hepatitis B, after it was discovered in the 1980s that as many as 90 per cent
of AIDS patients had also been exposed to hepatitis B.
Hepatitis C, previously known as non-A, non-B hepatitis, is also
transmissible by blood. Like HBV, HCV can remain in the body for several
years without appearing to cause infection. For this reason, hepatitis C is
often dubbed the “silent epidemic”. Once it gets into the bloodstream, the
hepatitis C virus finds its way to the liver, where it replicates and causes
6
inflammation. Chronic inflammation leads to scarring, or cirrhosis. A
healthy liver removes toxins from the blood, converts and stores blood sugar,
manufactures vital proteins, regulates blood clotting, produces bile and other
digestive enzymes and hormones. When the hepatitis C virus takes up
extended residence in the liver, it quietly reproduces for many years, often
without causing any outward symptoms or illness. But chronic inflammation
is toxic to healthy cells, and can lead to cell death. A common treatment for
hepatitis C is interferon therapy, which has helped some patients “clear” the
virus. Recently, treatment has combined interferon with ribavirin, an antiviral drug, with varying results.
As far as hepatitis C is concerned, 1974 was a crucial year as it
represented the first instance in which non-A, non-B hepatitis was
discovered and reported in the medical literature. The following year, the
National Institutes of Health in the U.S. confirmed that this new form of
Hepatitis had indeed contaminated the blood supply; fully 7.5 per cent of
heart surgery patients had contracted non-A, non-B hepatitis, twice the
number who were infected with Hepatitis B.
The 1980s was a period of intense activity in the scientific
community, especially in relation to isolating HIV, the virus that is widely
believed to cause AIDS. It also marked the beginning of government
involvement in the AIDS domain. By the summer of 1982, eight cases of
7
AIDS had been reported to the Health Protection Branch of the Canadian
government. Although HIV was officially isolated in the spring of 1984 by
Dr. Robert Gallo of the U.S. National Institutes of Health, the New England
Journal of Medicine had reported as early as 1983 that there was ample
evidence that HIV could be transmitted via blood from members of high-risk
groups. By April of 1985, the first HIV-antibody test kit, which was
developed in the U.S., was approved for sale in Canada. More than eight
months of bureaucratic wrangling would pass, however, before Canadian
blood donations would begin to be screened for the presence of HIV.
Scientists also struggled in the 1980s to develop a test to screen for
the presence of hepatitis C (still known only as non-A, non-B hepatitis). Dr.
Harvey Alter, of the U.S. National Institutes of Health, had suggested in the
mid-1980s that the use of surrogate testing could eliminate up to half of the
infections. A specific test to screen for hepatitis C was not available and
implemented in Canada until 1990, but two “surrogate” (or substitute) tests
were available to screen for non-A, non-B hepatitis as early as 1974: one
measured a liver enzyme while the other detected previous exposure to
hepatitis B. In 1986, the same time that U.S. blood banks began using these
surrogate tests, the Canadian Red Cross and governments opted instead to
study the tests’ efficacy. During this time, it was estimated that about
100,000 people a year in the U.S. had contracted non-A, non-B hepatitis;
8
Canadian estimates were roughly one-tenth the American figure. Alter’s
suggestion fell on deaf ears in Canada, where the Red Cross urged caution
and more evidence before implementing testing, just as it had done with
respect to AIDS. The U.S. began using surrogate (or substitute testing) in
1986, while Canada continued to insist that the costs of testing far
outweighed the benefits.
Still, this as-yet-unnamed virus – identified for what it wasn’t – paled
in importance to HIV, which was killing its victims at an alarming rate.
During this period and in the absence of life-prolonging medication such as
HAART (Highly Active Anti-Retroviral Therapy), the road from HIV
infection to full-blown AIDS was brutally short. By contrast, few people at
the time believed that hepatitis C constituted a serious public health issue, a
claim that was repeated by officials who testified before the Commission of
Inquiry on the Blood System in Canada in 1994-1995, when hepatitis C first
entered the public lexicon and the media discourse. (The Inquiry examined
the facts that led to the contamination of the blood supply during the 1980s,
in which more than 1,200 people were infected with HIV and another 10,000
were infected with hepatitis C (Orsini 2002). Indeed, up to the present day,
hepatitis C seems to belong to a second class of diseases, even though
persons with Hepatitis C won a small victory when the federal government
9
announced in 1999 the creation of a research unit within Health Canada
devoted solely to hepatitis C research.
Only recently has Hepatitis C begun to emerge as a public health
concern affecting the health of all Canadians. The virus, for instance, has cut
a swath through the drug-using population of Vancouver’s downtown East
Side, where infection rates among injection drug users are as high as 90 per
cent; by contrast, HIV infection rates in this area are believed to be about 40
per cent. Moreover, in some cases, patients have been found to be coinfected with hepatitis C and HIV, which often frustrates treatment since the
drugs used to combat HIV may worsen or counteract efforts to treat hepatitis
C, and vice-versa. While HCV is increasingly being viewed as a public
health issue, medical practitioners continue to have a difficult time
diagnosing and treating the condition. Moreover, little research has been
conducted on the lived experience of persons with HCV. Qualitative health
research and participatory research practices thus become important tools for
uncovering the impact of HCV on the quality of life of patients and for
developing appropriate public policy responses.
Biological Citizenship and the ‘Body’ Politic
10
Building on Petryna’s work, Novas and Rose (2004: 1) use the term
“to encompass all those citizenship projects that have linked their
conceptions of citizens to beliefs about the biological existence of human
beings, as individuals, as families and lineages, as communities, as
population and races, and as a species.” From the perspective of public
policy generally and health policy specifically, it is important to recognize
how biological citizenship opens up a space to think about the emergence of
illness as a new political cleavage, as an identity through which citizens, as
citizens or as members of civil society organizations and/or social
movements, frame their political demands and challenge state authorities for
forms of redress, whether through direct compensation for iatrogenic harm
(in the case of tainted blood victims who contracted HIV and hepatitis C, for
instance), or indirectly through appeals for more robust social programs
offered by the state.
As noted, Petryna’s groundbreaking work, Life Exposed: Biological
Citizens after Chernobyl (2003) traces the features of this new “citizenship
regime” using as a case study the 1986 Chernobyl disaster in Ukraine, during
which tens of thousands of citizens were exposed to radioactive iodine,
which has been linked to deadly thyroid cancers in children and adults.
Expanding upon Petryna’s work, Carlos Novas and Nikolas Rose have
argued that the perspective of biological citizenship can be expanded to
11
include the emergence of illness as a new political cleavage, as an identity
through which citizens, as citizens or as members of civil society
organizations and social movements, frame their political demands and
challenge state authorities for forms of redress, whether through direct
compensation for iatrogenic harm (e.g: tainted blood victims), or indirectly
through more robust social programs offered by the state. Novas and Rose
are interested in how biological citizenship challenges, supplants or
intersects with the dominant mode of understanding citizenship as linked to a
nation state or territory. A number of forces, they note, be they religious,
ethnic, or cultural, have placed the fundamentally national form of
citizenship in question. As such, Novas and Rose use the term ‘biological
citizenship’ “to encompass all those citizenship projects that have linked
their conceptions of citizens to beliefs about the biological existence of
human beings, as individuals, as families and lineages, as communities, as
population and races, and as a species.” By citizenship projects, they are
referring to “the ways that authorities thought about (some) individuals as
potential citizens, and the ways they tried to act upon them.” (Rose and
Novas: 1)
Biological citizenship is also concerned with public participation and
citizen engagement practices, encouraging citizens to become intimately
acquainted with their biological destinies. Waldby et al use the term
12
‘bioidentity’ to describe our “common understanding of our bodies as ours,
as both supporting and being included in our social and subjective identities”
(Waldby et al 2004: 1462). This is most clearly evident in the discourse of
genetics, in which the suggestion is that genetic knowledge has the potential
to revolutionize societies and empower citizens to take charge of their own
health. To “know thy genetic self” thus becomes a duty of responsible
citizenship in the age of risk. Would be parents are urged to undergo genetic
counselling to discuss the risk factors linked to birth defects in newborns.
Individuals who have a family member with a history of heart problems or
diabetes, are counselled to under go testing to determine whether they are
genetically susceptible to experience similar health problems. The argument
is that possessing such information/knowledge can be potentially
liberating/empowering, and encourage individuals to adopt healthier lifestyle
practices, and the like.
Theorizing the Links between Illness Narratives, Citizenship Projects
and Public Policy
Much of the literature that examines the importance of illness
identities has adopted a narrative or biographical approach (Zinn 2004;
Williams 2000). In the social sciences, the disciplines of sociology and
anthropology have done the most to bring narrative perspectives to bear on
13
issues relating to health. This, of course, has not been without its challenges,
given some of the unease within the medical and scientific communities of
qualitative approaches to understanding health. Of narrative, Morris notes
(1998: 251), “medicine… not only avoids narrative but treats it with a
disdainful mixture of hostility and contempt.” The arrival of Evidence Based
Medicine, which holds as its gold standard the double-blind, randomized
clinical trial, no doubt leaves little room for narrative, much less qualitative
approaches that are grounded in the situated knowledge of patients. At best,
qualitative studies might be justified on the basis of complementing the more
‘robust’ findings derived from quantitative studies. To use the
methodological jargon, they may help to ‘triangulate’ the data. “Anecdotal”
evidence, however, can never replace the so called rigour, objectivity, and
reliability of evidence-based approaches (see Laforest and Orsini 2005).
Not surprisingly, perhaps, public policy has only recently begun to
take seriously the perspective that narrative brings. As Dvora Yanow
explains, the so-called ‘interpretive turn’ in the social sciences has begun to
influence political science generally and public policy studies specifically.
Narrative analysis, in public policy terms, has been centered on examining
“the issue-oriented stories told by policy actors, using such analysis to clarify
policy positions and perhaps mediate among them. Work of this sort
analyzes the structure either of the policy and agency stories told by various
14
actors or of their content, allowing comparisons across different versions.”
(Yanow 2000: 58) The preoccupation with ‘framing processes”, currently
popular among social movement scholars, is another direction in which
narrative analysis has moved. The key here, however, is that the analysis of
story telling is viewed from the perspective of a strategic policy actor, be it a
pressure group or government agency, seeking to influence or shape the
policy agenda with their “version” of events. It is not concerned so much
with democratizing public policy; rather it clings to a pluralist vision that the
act of including more voices in the policy process is somehow sufficient.
Whether those voices are heard or actually contribute to policy making is
less important.
Conversely, as alluded to earlier, there is a strong tradition in a
number of social science disciplines of using narrative analysis to make
cognitive sense of how patients come to experience their illness. In fact, the
focus on illness, as distinguished from disease, is significant. The former,
according to Kleinman (1988: 3), “refers to how the sick person and the
members of the family or wider social network perceive, live with and
respond to symptoms and disability.” Disease, on the other hand, “is what
the practitioner creates in the recasting of illness in terms of theories of
disorder… In the narrow biological terms of the biomedical model, this
means that disease is reconfigured only as an alteration in biological
15
structure or functioning.” (Kleinman 1988: 5-6) Moreover, it is recognized
that the process of telling these stories of illness and disability can be critical
-- and sometimes transformative -- for patients who may be overwhelmed by
feelings of isolation or stigmatization. Swain (2000) makes this point in his
discussion of the limitations of ‘traditional markers of disease’ (e.g. life
expectancy, symptoms) in measuring the health-related quality-of life of
patients. The traditional markers of disease “often do not parallel a patient’s
feelings or perceptions concerning the disease. Lately, interest has focused
on identifying how patients perceive their illness and quantifying its impact
on their lives. Therapeutic interventions are not only being assessed for their
direct impact upon traditional markers of disease but are now evaluated for
their ability to preserve overall patient health and well-being.
Illness stories have been the focus of study among sociologists and
anthropologists interested in understanding how patients experience illness
and how interact with the health establishment. Sociologist Arthur W. Frank,
who has done some pioneering work on the subject, has argued that the need
has never been greater for patients to tell their stories, to give voice to ‘the
illness experience’. These stories, often told by “wounded storytellers”, are
beginning to gain recognition as authentic truths.
According to Sharon Kilty, this recognition allows illness stories to
become both therapeutic and empowering for those in the throes of illness:
16
Illness stories are therapeutic for tellers who have a real opportunity
to be heard and to hear themselves. As they tell and retell their story
they can unravel the truth of their own experience of illness and
begin to adjust to the person they have become. From this position
they can begin to uncover the person they could become. Telling
their story has given them the opportunity to step outside of
themselves and witness who they are…
Illness stories are therapeutic for others who also have a chronic
illness or disability. Hearing the stories allows them to recognize that
they are not alone; other people can understand their experience and
even have similar experiences. They may discover new role models
which show them how to work actively with their illness experience
in ways that enrich their lives. Hearing illness stories from others
may encourage people to take a risk and begin to talk about their own
illness experience. In these situations not only is the telling of the
story therapeutic for the listener as well as the teller, but it is also an
empowering process for both parties…
Illness stories are enlightening for everyone outside of the illness
experience, be they family, friends, health care professionals or
politicians. There is a famous saying "you cannot understand a man
until you have walked a mile in his moccasins" - telling our stories
begins to allow these individuals to walk with us through our illness
experience in our moccasins... (Kilty 2000: 17-18)
Frank classifies three types of narrative, although he is careful to note
that they are not mutually exclusive: the restitution narrative, the chaos
narrative and the quest narrative. In contemporary culture, the restitution
narrative is that which most people want to hear, itself not surprising given
that it clings to a belief in ‘restorable health’. For Frank, these narratives
fulfill two important functions:
For the individual teller, the ending is a return to just before the
beginning: “good as new” or status quo ante. For the culture that
prefers restitution stories, this narrative affirms that breakdowns can
17
be fixed. The remedy, now secure in the family medicine cabinet,
becomes a kind of talisman against future sickness. (Frank 1995: 90)
As Kilty notes, however, “people with chronic illness and disability
do not fit this model and so can find it difficult to tell a story which does not
appear to have a happy ending.” (2000: 17-18) This is especially true in the
case of people with Hepatitis C, the majority of whom will develop chronic
hepatitis, with which they may have to live for 30 or 40 years. Hepatitis C is
not chronic in all patients; some clear the virus, while others may become
acutely ill and die as a result of end stage liver disease.
The chaos narrative or story remains “the most frequently unheard.
When people are overwhelmed by the intensity of their illness, to speak
coherently becomes impossible. Only when there is a tentative ability to
stand outside the chaos can the story begin to emerge.” (Frank 1995: 98)
This has been referred to as “the anti-narrative of time without sequence,
telling without mediation and speaking about oneself without being fully
able to reflect on oneself.” (Frank 1995: 98)
As Kilty explains, chaos narratives are often disjointed and without
sequence:
The underlying message is that life does not get better. All this
provokes anxiety as the mask slips off to reveal human frailty and
vulnerability. Revealing how easily each of us could be toppled has a
deep effect on the listener. This particular type of story is often
18
witnessed only by close friends and family, who find the act of
listening painful and frustrating. It is natural to long for a restitution
narrative where life returns to normal and the teller returns to their
former self. This frustration is often unknowingly communicated to
the teller, who then cannot share their true story for fear of further
upset. This is when hearing others' stories can be enormously
supportive, especially when in a state of despair. (Kilty 2000: 18)
The third form of illness story is the quest narrative, in which a
person journeys through and faces suffering head on in the belief that they
were destined to learn something from the illness experience. In their search
for alternative ways of experiencing illness, quest stories may include
becoming politically active, forming a patients’ rights group, attending
support group meetings, helping others who may be in a similar situation. To
use a somewhat overused term, it is about becoming empowered. As Frank
makes abundantly clear, he is not suggesting that all illness narratives
conform to one type. Indeed, in many illnesses, all three types are told,
depending upon where the patient is on his/her journey. The three narratives
should be viewed as “patterns in a kaleidoscope: for a moment, the colours
are given one specific form, then the tube shifts and another one emerges.”
(Frank 1995: 76)
Illness Narratives and Identity in the Risk Society
19
Theorists as diverse as Ulrich Beck, Mary Douglas, and Anthony
Giddens each have addressed the burgeoning discourse on risk, which is
characteristic of late modernity. While their approaches differ, each is
interested in how notions of risk have permeated society and have influenced
macro political and social processes. In Beck’s now classic formulation of
the “risk society,” the critical difference between the risks of today and those
connected with industrialization is the former’s thoroughgoing power. The
risks associated with modernity and the “afflictions they produce are no
longer tied to their place of origin – the industrial plant. By their nature they
endanger all forms of life on this planet. The normative bases of their
calculation – the concept of accident and insurance, medical precautions, and
so on – do not fit the basis dimensions of these modern threats.” (Beck 1992:
22) For the purposes of our discussion, Beck’s reference to “social risk
positions” is important to consider. As he notes, some people are more
affected than others by the production and distribution of risks. The essential
difference between risk positions and class positions, according to Beck, is
that “in class positions being determines consciousness, while in risk
positions, conversely, consciousness (knowledge) determines being.” (Beck
1992: 53) The difficulty arises in the process of amassing knowledge, which,
in the class situation, is seemingly evident (the loss of a job, for instance):
“No special cognitive means are required for this, no measuring procedures,
20
no reflections on validity, and no consideration of tolerance thresholds. The
affliction is clear and in that sense independent of knowledge.” (Beck 1992:
53) In the case of risk situations, however, the risk itself often requires
outside validation or articulation. The victimization of people who discover,
for instance, that the food they eat may contain hazardous chemicals “is not
determinable by their own cognitive means and potential experiences.”
(Beck 1992: 53) The danger may be invisible, hidden in a cup of tea; it is not
tangible to the person assuming the potential risk. Paradoxically, the
theorists of risk society suggest, we are both less capable of controlling our
exposure to risk, while at the same time the individualization of risk seems to
suggest that we partake freely of risky activity. A discourse that presumes a
simple connection between risk and responsibility fails to account for the
relationship between risk and anxiety: “A risk can be marked not only
because it is dangerous in itself but also because of its inability to satisfy
basic needs for security, community of feeling and meaningfulness. Some of
those failings can be nearly impossible to fulfill; such is the case with man’s
anguish in the face of the enigmas of life and death.” (Lyttkens quoted in
Sjoberg 1987: 128) Nelkin and Gilman extend this argument, explaining that
for many “locating blame for disease is in effect a strategy of control. If
responsibility can be fixed, perhaps something – discipline, prudence,
isolation – can be done.” (Nelkin and Gilman 1988: 362)
21
The discussion of risk in general is fraught with a host of problems.
Risk is a catch-all phrase to describe activity that is deemed as potentially
dangerous. It places the burden of responsibility on the backs of the defined
risk-takers (members of so-called risk groups) to alter their behaviour for the
sake of the common good. As Douglas notes, the meaning of the term “risk”
has shifted from its old connection with technical calculations of probability.
Economists, for instance, view humans as risk averse; rational actors make
their choices according to the “hedonistic calculus.” In current political
usage, however, risk refers to danger, and high risk “means a lot of danger.”
Moreover, high risk refers not to the probability of pain or loss, but
exclusively to negative outcomes.
The word has been pre-empted to mean bad risks. The
promise of good things in contemporary political
discourse is couched in other terms. The language of
risk is reserved as a specialized lexical register for
political talk about the undesirable outcomes. Risk is
invoked for a modern-style riposte against abuse of
power. The charge of causing risk is a stick to beat
authority, to make lazy bureaucrats sit up, to exact
restitution for victims. (Douglas 1992: 24-25)
Robert Castel, in a discussion borrowing heavily from Foucault, offers a
counterpoint to Douglas’s discussion of risk. He distinguishes the notion of
risk from the previous notion of dangerousness, which was “formerly used to
designate the privileged target of preventive medical strategies.” (Castel
22
1991: 282) The shift from dangerousness to risk, he says, rests on the
presumption of the disappearance of the subject:
The essential component of intervention no longer takes
the form of the direct face-to-face relationship between
the carer and the cared, the helper and the helped, the
professional and the client. It comes instead to reside in
the establishing of flows of population based on the
collation of a range of abstract factors deemed liable to
produce risk in general. (Castel 1991: 281)
The shift from dangerousness to risk effectively downloads responsibility
from the state to individual citizens. That is, the state is not concerned with
altering those factors which contribute to the spread of diseases such as
hepatitis C and HIV – they are given – so much as with ensuring that these
factors don’t conspire to produce the negative result: the transmission of the
disease.
Every Virus Tells a Story: People with Hepatitis C as Biological Citizens
When we examine the illness narratives of Hepatitis C patients, we
can see how a risk discourse simultaneously downplays their health
concerns, while magnifying their responsibility. In its written submission to
the Krever Inquiry (the government-sponsored Commission of Inquiry on the
Blood System in Canada), the Hepatitis C Society of Canada claimed that the
Canadian Red Cross and the Canadian Liver Foundation attempted to
discredit people with Hepatitis C, by painting all sufferers as “druggies”.
23
Emphasis was placed on their reckless behaviour, including intravenous drug
and alcohol use. In addition, not only were people with hepatitis C singled
out as reckless risk-takers, many were told not to worry about the “benign”
virus. A common theme expressed in interviews with patients was one of
profoundly mixed messages – hepatitis C was at once viewed as deadly
serious but also no cause for alarm; in general, many patients were told there
was little cause for concern. At the same time, several patients mentioned
that their doctors inquired about how they were infected, asking specifically
whether they were current or former drug users. For those who experimented
with drugs when they were younger, the question forced them to revisit a
painful chapter in their past. For those with no history of drug use (ie:
recipients of tainted blood), the idea that they would be lumped in with “drug
users” caused – and continues to cause – great anxiety.
While patients were assured that the virus would not adversely affect
their health, the reactions they encountered from friends and family alike
suggested otherwise. As one woman testified at the Inquiry into the tainted
blood scandal, “Most of our friends headed for the hills because they were
scared they could get it by sitting in the room with me. Parents at my son’s
school would not let him into their homes. I feel like a leper.” (Joyce M.,
quoted in Powell 1996: 25) People with hepatitis C find themselves in the
24
unenviable position of being both marked by risk and erased as individuals
whose health concerns are considered minor or non-life threatening.
It is perhaps not surprising that persons with Hepatitis C have had to
work hard to attract attention, whether from their doctors, the media, or
governments. For many years, HCV moved slowly and discretely through
the Canadian population, although current estimates suggest as many as
240,000 Canadians may carry the virus. Worldwide, as many as 170 million
are presumed to be infected. By comparison, contracting HIV was seen as a
virtual death sentence. While people with HIV were able to tap into the
wellspring of activism that previously animated gay liberation and helped to
mobilize communities around fighting AIDS, people with hepatitis C
continue to struggle to carve out a distinct identity, a struggle that has been
frustrated by the heterogeneity of the group and by challenges from those
who continue to view hepatitis C as a minor medical problem.
One of the key findings emerging from the data relates to how the
experiences of people with hepatitis C are structured by the nature of their
infection. Those who were infected in the course of sharing drug injecting
equipment are not only qualitatively different from those who were infected
through tainted blood (generally, IV drug users spoke of having had difficult
life, often marked by poverty, illness, family trauma) whereas those infected
through tainted blood, while not carbon copies of one another, conform to
25
the stereotype of middle class respectability. This, it turns out, affects how
respondents reacted to and are dealing with life with Hepatitis C, or to use
the words of William Gamson, how they constructed their “injustice frame”
– in this case, the degree to which they politicized the origins of their
diagnosis. As Gamson has noted:
The heat of moral judgment is intimately related to
beliefs about what acts or conditions have caused
people to suffer undeserved hardship or loss. The
critical dimension is the abstractness of the target…
When we see impersonal, abstract forces as responsible
for our suffering, we are taught to accept what cannot
be changed and make the best of it… At the other
extreme, if one attributes undeserved suffering to
malicious or selfish acts by clearly identifiable groups,
the emotional component of an injustice frame will
almost certainly be there. (Gamson, in della Porta and
Diani, 1999: 70)
Those infected through drug use often spoke of not being surprised
that they were infected, noting that this is the price one pays for choosing a
“dangerous” lifestyle:
Interviewer: You know how you got it?
Respondent: I figure I got it from Tammy (pseudonym) I would
say. But with an understanding that I would. We were partners.
We were doing the hardcore drug thing. Everyday we had to shoot
each other up. We’d mix our drugs together. We had unprotected
sex our whole relationship and I knew from the beginning that
Tammy had hep C. I had that sense I’m in this with her. If I end up
with it with her we’re going to be together and that’s what
happening with us. So we’ll go through whatever struggles we go
through together. So it could have been through unprotected sex
but was more likely from making up, not sharing like taking a
needle from her arm and putting it on mine but…
26
As a result, they do not express anger or resentment with respect to the
failure of others to take seriously their health concerns, even though they
recount harrowing tales of being bounced from doctor’s office to doctor’s
office begging to be treated by gastroenterologists or the few hepatologists
who specialize in hepatitis c, or of finding out they were positive and never
receiving follow up or so much as an information pamphlet to take home. In
addition, how drug users found out they were infected was critical. For
many, testing was required as a condition of entering treatment for heroin
addiction at a methadone clinic. Dealing with a positive hepatitis C diagnosis
then became part of a comprehensive plan to get one’s house in order,
“getting clean”. Treatment clinics provide a support system, albeit a short
term one, for someone dealing with the trauma of a hepatitis C diagnosis.
Others were not so lucky, finding out by accident in the course of a visit to
an emergency ward or a walk-in clinic.
Conversely, tainted blood recipients were often indignant about their
situation, claiming that they were indeed “authentic victims”; they did
everything they were supposed to do, they were law-abiding citizens, and did
not deserve to be infected with tainted blood. Dealing with the stigma
associated with hepatitis C was particularly difficult for tainted blood
victims, and many expressed concern that this was related to the
overwhelming incidence of Hepatitis C among drug using populations.
27
An overwhelming majority of respondents discussed a range of issues
related to treatment, which for coding purposes are grouped under the
headings: choosing treatment, life under treatment, and life after treatment.
With regard to the first, “choosing treatment,” respondents’ decisions to opt
for treatment were influenced by a number of factors, including positive
encouragement from friends, family and/or health care professionals, a
generally positive attitude toward conventional medicine, a desire to see
treatment as part of a wider, comprehensive attempt to “put their life together
again” (mainly IV drug users). In addition, many respondents mentioned the
discovery that they had a “good genotype”, one of the six strains of the virus
that have been identified, as motivating their decision to go ahead with
treatment. Genotypes 2 and 3 are easier to treat than Genotype 1, although
Genotype 1 is more prevalent in North America (about 70 per cent of
patients) than Genotypes 2 and 3 (roughly 14 per cent of patients). Patients
with genotypes 2 and 3 are almost three times more likely than patients with
genotype 1 to respond to therapy with alpha interferon or the combination of
alpha interferon and ribavirin. Current studies at the University of Toronto
have identified a small subset of genes that can predict whether a patient
with chronic hepatitis C will be able to respond to current treatments. The
study found that the difference between those patients who responded to
treatment and those who did not was what they called “the level of
28
expression -- whether the genes were turned on or turned off -- of 18 genes.”
In the near future, determining the levels of a small subset of genes in
patients’ liver biopsies, with perhaps a simple blood test, may be helpful in
deciding who will respond to treatment of chronic hepatitis C with current
combination therapy. Furthermore, patients with genotypes 2 and 3 undergo
a 24-week course of combination treatment, whereas patients with genotype
1 require 48 weeks of treatment. Although most of the persons interviewed
had undergone or were in the process of being treated, for the minority who
did not undergo treatment, being told they had a “bad genotype” – a strain of
the virus that is more difficult to treat – played a large role in their decision
to reject treatment. In some cases, the respondents spoke of the decision
being made for them, by their doctors, who actively counseled them against
this. For the others who rejected treatment but not for reasons of genotype, a
lack of faith in conventional medicine, a concern about the seriousness of the
side effects, and a history of depression or mental health problems, were all
cited as reasons.
When asked what life was like under treatment, patients described a
bewildering array of symptoms, including trouble sleeping, depression,
lethargy, “brain fog” (short term memory problems, difficulty remembering
seemingly mundane details), lack of appetite, hair loss, diminished sex drive,
29
gastrointestinal problems, and “interferon rage” (anger issues that can lead to
wild outbursts, violent behavior, and sometimes suicidal thoughts).
For many who under went treatment, “life after treatment” is
qualitatively different from life before, in the sense that they felt unable to
return to the life they had before being diagnosed with Hepatitis C, even
though they may have been living with hepatitis C for much longer. The
‘new normal’ is nothing like their previous life, although this reality is not
easily accommodated by the health care system, which treats these patients
as success stories. For those who were treated successfully, assurances that
they had cleared the virus were met with skepticism as they still felt unwell.
The general experience was one of seeing this chronic illness as an instance
of “biographical disruption” (Williams 2000; Bury 1982) – hepatitis C forces
you to rethink who you are, your identity, recognizing that this disruption
may be longer lasting than previously thought. Although when describing
their experience some patients found comfort and strength in being able to
educate others about the disease, the fact that they had to provide support to
newly diagnosed patients was an indictment of the health care system itself
and the lack of knowledge of hepatitis C. Less than one third of respondents
felt that their physician understood hepatitis C.
Few of the patients spoke of Hepatitis C as a catalyst for positive
change, unless they had a history of IV drug use. In those cases, it was
30
difficult for patients to separate the process of getting clean from choosing to
embrace their Hepatitis C diagnosis. While the drug maker Roche claims on
its website that “many people who are living with Hepatitis C experience a
shift in their outlook on life and often are motivated to set new goals for
themselves,” the interviews reveal that this may apply only in those patients
with serious drug addiction problems. The website counsels patients “to view
your diagnosis as an opportunity to improve your personal life, work on
developing healthy behaviours, and make the most out of each and every
day.” The following paragraph finally cuts to the chase: “As part of your
effort to make healthy choices and set new goals, you may also take the step
of getting treated for hepatitis C, which in turn may make other life changes
possible.”
Stigma – and ignorance – emerged as a significant concern for people
living with hepatitis C. This is not surprising given the fact that the majority
of new infections are found in injection drug users. The attitudes of others
vis-à-vis people with hepatitis C are eerily reminiscent of the attitudes
toward people with AIDS in the early years of the epidemic. And in the
Canadian context, the fact that hepatitis C first entered the public lexicon in
the wake of the tainted blood scandal, meant that hepatitis C would be
mentioned alongside HIV. This was both a blessing and a curse. Hepatitis C
acquired the stigma that is still associated with HIV/AIDS; at the same time,
31
however, the media reminded the public that AIDS was a greater public
health threat than hepatitis C.
Unravelling the Policy Implications
The implications of a shift to forms of biological citizenship are
directly and indirectly related to public policy. They are directly related to
public policy in the sense that they call upon the state to expand our
understanding of public policy, that is, the nature of state intervention in the
economy and society. And they are indirectly related in the sense that
changes in how citizens construct their citizenship duties or obligations and
demands will have an impact on how they view their role as participants in
policy processes. Biological citizenship projects expand the boundaries of
the political, or what Jenson has aptly termed “the universe of political
discourse.” The second implication concerns the need to explore how the
possible implications of such a shift are not reducible to positive or negative
effects, as new forms of citizenship rooted in biology “cannot merely focus
upon strategies for making up citizens from above.” (Rose and Novas 2004:
4). Indeed, the third implication relates specifically to how biological
citizenship is altering the character of collective mobilization. Paul Rabinow,
for instance, has argued that we are witnessing the proliferation of “biosocial
groupings”, which are defined as “collectivities formed around a biological
32
conception of shared identity.” (Rabinow, in Rose and Novas 2004: 6).
Support groups, patient organizations, and the like exist for a number of
ailments, conditions, illnesses, and diseases, some of which are recognized
and accepted by medical and scientific authority, while others remain
marginal or hotly contested within official medical or scientific discourses,
such as Multiple Chemical Sensitivity Syndrome (see Kroll-Smith and Floyd
2000). In a useful discussion of health social movements, Brown et al (2004:
52) characterize embodied health movements as those “that address disease,
disability or illness experience by challenging science on etiology, diagnosis,
treatment and prevention.” There are other instances, however, in which
scientifically acceptable conditions (such as hepatitis C) which may not be
the subject of contestation within official circles, struggle to become
contested on the political stage (Brown et al. 2003). For some asthma
sufferers and activists, for instance, asthma offers an opportunity to mount
wider challenges around environmental and transit-related issues, all in an
effort to politicize asthma, which is increasingly present in socioeconomically disadvantaged urban communities.
Finally, biological citizenship can open up spaces for the articulation
of “politicized illness experiences, focusing attention on the wider politicaleconomic forces that structure health. At first blush, the politicization of
certain illness identities presumably opens a space for people living with this
33
or that disease. Official recognition of a disease or illness by the state or by
societal actors may do little, however, to reduce the incidence or magnitude
of the problem, if it does not attend to the underlying factors that produced
the problem in the first place. For instance, what some have termed “the
medicalization of homelessness” – or a disease-model approach to
homelessness – has been seen as a more effective or caring response to a
pressing social issue. But as Lyon-Callo explains (2004: 51), “One effect of
conceptualizing social problems through the lens of diseased bodies is often
a neglect of systemic inequality.”
Concluding Thoughts
This chapter has attempted to introduce the term “biological
citizenship” to the field of health studies and specifically, health policy, but
it should be clear that the implications of such new forms of citizenship
extend beyond the field of health. I conclude with three broader questions
raised by the hepatitis C case itself, but can only sketch the contours of
possible responses to these questions. First, does biological citizenship
supplant others dimensions of citizenship? It would be premature to suggest
that biological citizenship eclipses other dimensions of citizenship, but
certainly the mobilization of citizens along disease or illness-specific lines
casts in a different light debates about universal citizenship rights. It forces
34
us, as well, to recognize that “politicized illness experiences” may fast
become the next wave of “contentious politics”. To be sure, there are
dangers associated with one disease constituency being pitted against the
next in the race for recognition, but as some health social movements have
already demonstrated, there are important social justice links between
seemingly disparate movements (for instance, among asthma activists,
environmentalists, and civil rights movements).
Second, do we need new analytical tools to understand the important
shifts under way in how “biological citizens” in the age of risk, an age in
which we have seemingly lost the ability to control our exposure to a
plethora of risks? In the case of Hepatitis, one will recall, paradoxically,
people with Hepatitis C found themselves in the unenviable position of being
both marked by risk and erased as individuals whose health concerns are
considered minor or non-life threatening. Within a risk discourse, the health
concerns of Hepatitis C patients were downplayed, while their responsibility
(for getting infected in the first place, especially in the case of IV drug users
and for making “responsible” treatment decisions) was magnified.
Third, how do new forms of contention by “biological citizens”
challenge the architecture of the welfare state? While biological citizenship
has the potential to empower citizens to become intimately acquainted with
their biological identities and challenge biomedical knowledge, we should be
35
cautious about its emancipatory potential to reframe the public policy
landscape, and with it the role of citizens and the welfare state itself. While
this shift may have profound implications for how we understand
fundamental categories such as life and death, not to mention the
conceptualization of health, how citizens interact with each other and with
authorities is structured by existing power relations, as well. When, for
instance, patients challenge biomedical knowledge or science, they may, in
the process, reinforce the supremacy of scientific or medical knowledge, or
valorize particular ways of knowing, even though this may not have been
their original intention.
Acknowledgments
I would like to thank the Canadian Institutes of Health Research for research
funding, Michael Graydon for invaluable research assistance, and Francesca
Scala for helpful comments.
36
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