Repositioning the patient: the implications of being ‘at risk’

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Social Science & Medicine 60 (2005) 1869–1879

www.elsevier.com/locate/socscimed

Repositioning the patient: the implications of being ‘at risk’

S. Scottd, L. Priora,�, F. Woodb, J. Grayc

aSchool of Social Sciences, Cardiff University, Glamorgan Building, King Edward VII Avenue, Cardiff CF10 3WT, UKbDepartment of General Practice, University of Wales College of Medicine, Llanedeyrn Health Centre, Llanedeyrn,

Cardiff CF23 9PN, UKcInstitute of Medical Genetics, University Hospital of Wales, Heath Park, Cardiff CF14 4XN, UK

dDepartment of Sociology, University of Sussex, Falmer, East Sussex, BN1 9SN

Available online 5 November 2004

Abstract

In the modern era of biomedical practice, genetic knowledge has redefined the idea of ‘the patient’ to include those

who are ‘at risk’ of disease alongside those who are already sick. For such individuals, it is risk itself that constitutes the

raison d’etre of medical intervention. Using data from interviews with 58 users of a UK cancer genetics service together

with data derived from clinical consultations, we consider the way such patients or clients make sense of a cancer

genetic risk estimate and how they integrate genetic risk information into their lifeworld. In particular, we note that

patient-clients who are ‘at risk’ tend to see themselves in a liminal position betwixt the healthy and the sick, and that

such individuals consequently seek recourse to systems of medical surveillance that can continuously monitor their state

of health. Our analysis also revealed the fact that many of those deemed by professionals to be at low risk of inheriting

cancer-related mutations subsequently strove to be re-categorised as being at moderate or high risk of an adverse

outcome. A number of explanations concerning lay health beliefs, lay ‘representations’ of health and the nature of the

patient-client’s lifeworld are examined and assessed in order to account for this apparent paradox.

r 2004 Elsevier Ltd. All rights reserved.

Keywords: Genetics; Risk; Cancer; Liminality; Sick role; UK

Being-at-risk

In a recent overview of transformations in modern

medical practice, Clarke, Shim, Mamo, Forsket, and

Fishman (2003) argue that a new stage of development

has been reached. They refer to this stage as that of

‘biomedicalization’ and contrast it with its predeces-

sor—which they refer to as ‘medicalization’. Their

rhetoric justifying this re-categorisation of practice is

e front matter r 2004 Elsevier Ltd. All rights reserve

cscimed.2004.08.020

ing author. Tel.: +44-0-29-20-875428; fax:

4175.

esses: [email protected] (S. Scott),

k (L. Prior), [email protected] (F. Wood),

@cardiffandvale.wales.nhs.uk (J. Gray).

not especially persuasive. However, Clarke et al. do

identify and highlight a number of distinct trends that

have transformed the relationships between healers and

patients in the modern world. These include the politico-

economic reconstitution of biomedicine as a sector, a

focus on health and risk (rather than illness and disease),

transformations in how biomedical knowledge is dis-

tributed, and transformations of bodies and personal

identities in line with the increasingly ‘technoscientific’

nature of biomedical practices. This paper focuses on

some of those trends, and it does so by concentrating—

via the use of empirical data—on the ways in which

cancer genetics has reconstituted the nexus of doctor,

patient, nurse and clinic.

d.

www.elsevier.com/locate/socscimed

ARTICLE IN PRESSS. Scott et al. / Social Science & Medicine 60 (2005) 1869–18791870

Despite enormous advances in medical knowledge

and technology, cancer remains one of the greatest

threats to our physical health. It has been estimated that

this disease causes a quarter of all deaths in the UK,

with one in three people being affected at some point in

their lives (Cancer Research UK, 2003). The most

common types of cancer are those of the breast, lung,

large bowel (colorectal) and prostate gland, which

account for more than 50% of new cases and a

significant proportion of the budget available for health

care services. Recently, the advancement of genetic

knowledge has been heralded as offering the most

promising breakthrough for cancer detection and

treatment. In particular, the development of genetic

testing and screening technologies has enabled clinicians

to make visible an individual’s risk of disease well before

it becomes manifest (Prior, Wood, Gray, Pill, & Hughes,

2002). Insofar as genetic risk assessment promises to

increase our ability to predict, detect and intervene so as

to ameliorate the effects of such a serious disease, this

might be seen as the latest attack in the long running

‘war on cancer’ (Proctor, 1995). Insofar as cancer

genetics focuses on being-at-risk, it positions itself at

the very centre of current medical practice—especially so

since risk and risk assessment have become increasingly

pivotal to the exercise of medical discourse in the

contemporary world (Skolbekken, 1995).

The shift in focus from the actual to the potential

presence of disease that is evident in clinical cancer

genetics is part of a much wider movement. Indeed, as

Lupton (1995) argues, the discourses of public health

and health promotion in general have tended to redefine

illness as a danger that threatens us all and demands that

we devise strategies of self-protection. So, in the modern

world each and everyone is ‘at risk’ of something or

other and the category of ‘being-at-risk’ may be said to

constitute a new source of social identity (Novas &

Rose, 2000). The consequent extension of ‘surveillance

medicine’ (Armstrong, 1995) into the routines of our

everyday lives has been well documented as a factor

responsible for changes in diet, lifestyle and self-

regulation in the population at large (Hughes, 2000).

In most cases, of course, our status of being-at-risk is

acquired by little more than membership of a population

group—older people, cigarette smokers, people with

diabetes. In other cases, the status is acquired by evident

possession of some particular, and personal, quality

(Brett, 1984)—as with HIV and AIDS. And it is into this

latter group that genetic mutation carriers fall. So that,

for such individuals, to be ‘at risk’ is to feel well, to be

asymptomatic, yet always to be aware of the potential

for becoming otherwise. Such ‘beings-at-risk’ must

consequently confront the possibility of their future self

as suffering from a bodily pathology that is probable

rather than actual, and to incorporate this tentative

knowledge into the ‘lifeworld’—the world of everyday

knowledge and action (Schutz & Luckman, 1973)—and

life plans.

The person identified by medical professionals as ‘at

risk’, then, occupies a unique position within the health

care system, and this is especially so in the world of

clinical genetics. Indeed in that world, the direct

interpersonal contact and focus on the patient’s body

so characteristic of both (modern) ‘bedside’ and post-

modern medicine (Shorter, 1985) is re-drafted in a

number of ways. Thus, the gaze of the clinical

practitioner shifts from body and cell to DNA, from

individual patient to family group, from bedside to

laboratory, and from ward round to review meetings

and counselling sessions. In fact, such re-drafting

probably represents as fundamental a shift in patient–-

doctor relationships as those alluded to by Jewson

(1976) in his discussion of the transformations of the

‘sick man’ in 18th and 19th century medical cosmology.

In any event, it certainly suggests a re-definition of what

it means to be a ‘patient’ and how the lifeworld of the

‘being-at-risk’ is subsequently structured. As we shall

show, patient-clients’ or clients’ understandings of

being-at-risk as well as their strategies for managing

this new status have serious implications for health

service provision. In this paper, we explore the ways in

which cancer risk assessment redefines the status of the

patient-client and their family within the health care

system. We also highlight how those deemed to be ‘at

risk’ find themselves embracing a liminal status that

locates them in a netherworld between the healthy and

the afflicted. (Indeed, even for the purposes of this

paper, it is not clear whether we should refer to our

subjects as ‘patients’, ‘clients’ or a hybrid category,

‘patient-client’. In most cases, we have elected to refer to

the hybrid.) From the standpoint of medical sociology

such an identity raises interesting questions about the

limitations of some of the most fundamental concepts of

medical sociology—such as, for example, Parsons’

(1951) notion of the sick role, and Bury’s (1982) concept

of biographical disruption. For whilst the latter concepts

invariably have much to say about the impact of illness,

chronic illness and disease upon social identity and

social relationships, their applicability to those who are

not yet ‘sick’ is problematic. It is to an examination of

such issues that this paper is directed.

Genetics and the lifeworld

It is well known that the communication of risk

assessments between doctors and patients raises im-

portant and fundamental issues about the nature of

medical consultations. This not least because the

numerical and statistical data from population risk

estimates have to be translated into terms that are

meaningful to the individual patient and communicated

ARTICLE IN PRESSS. Scott et al. / Social Science & Medicine 60 (2005) 1869–1879 1871

effectively (Alaszewski & Horlick-Jones, 2003; Edwards,

Elwyn, & Mulley, 2002; Gifford, 1986; Joffe, 2003;

Lloyd, 2001; Lloyd et al., 1996; Skolbekken, 1998). In

the case of cancer risks, it has been argued that

communication of risk status can lead to adverse

psychological outcomes (Rees, Fry, & Cull, 2001). In

fact, much of the early work on genetic risk assessment

tended to highlight the negative, ‘troubled’, conse-

quences of receiving genetic risk information (see, for

example, the essays in Marteau &Richards, 1996). Partly

in response to this, clinical genetics has tended to engage

with various forms of ‘counselling’ so as to mollify

adverse consequences of risk assessment and commu-

nication procedures—to repair, as it were, the lifeworld

of the patient. Health psychologists have subsequently

commented on the positive effects of genetic counselling,

in terms of reducing patient-clients’ levels of stress and

anxiety (Randall, Butow, Kirk, & Tucker, 2001; Meiser

& Halliday, 2002), and making them feel more

optimistic about avoiding the development of a heritable

disease (Shaw & Bassi, 2001). Genetic counselling, it has

also been argued, increases an individual’s sense of self-

efficacy, empowering them to make autonomous deci-

sions about treatment (McConkie-Rosell & Sullivan,

1999; Clarke et al., 2000) as well as increasing their

willingness to engage in ‘preventative’ behaviours such

as breast self-examination (Lloyd et al., 1996).

Our interest of course is in how people deemed to be

at risk of inheritable cancers integrate that knowledge

into the lifeworld, and how at risk assessments serve to

re-position individuals in such worlds. In both respects,

our work interconnects with research into social

‘representations’ of adult onset genetic disorders (such

as that reported on by Marteau & Senior, 1997), and

with work into how the at risk integrate genetic

information into family and kinship networks (Cox &

McKellan, 1999; Hallowell, 1999; Richards, 1997).

Unlike much of that work, however, we are also

concerned with identifying how being-at-risk can affect

a person’s relationship with a health service provider.

Indeed, we aim to consider the role that a genetics clinic

might have in mediating between the personal and

broader worlds in which the at risk find themselves and

the effects that such processes of mediation have on

newly acquired ‘technoscientific identities’ (Clarke et al.,

2003; Novas & Rose, 2000).

Table 1

Interview respondents by type of cancer and level of risk

Cancer site/by risk Low risk Mod risk High risk Total

Breast 8 11 6 25

Ovarian 2 3 6 11

Colorectal 6 10 4 20

Other cancers 1 0 1 2

Total 17 24 17 58

The study

The data that concern us here are drawn, in the main,

from 58 semi-structured interviews with patient-clients

who had been referred to a regional cancer genetics

service during 2001–2002, and given a risk assessment.

The regional cancer genetics service in question covers a

population of almost 3 million people. Referrals to the

service have increased substantially since its inception,

with 643 proband (first in the family) referrals in 1999

rising to 1609 in 2002. Around one-half of patient-clients

are referred to the service by general practitioners in the

community and the other half from secondary care

doctors. For this study, and following ethical approval,

92 consecutive patient-clients were sent an information

leaflet about the research and asked if they would wish

to participate—58 agreed to interview. Interviews

focused on the experiences of patients-clients with the

service, and interviewees were requested to tell us their

‘story’ in their own words. These data are supplemented

with other data drawn from 17 consultations held

between clinical geneticists, genetic nurse counsellors

and some of the high and moderate risk patient-clients

just referred to. Interview data such as we present here

can be seen as both reflecting on and constituting the

lifeworld through specific communicative actions (Ha-

bermas, 1987). In that sense, we may see the extracts

that follow as not merely reporting upon an external

reality, but as constructing the lifeworld in action. Our

sample of patient-clients to whom the data refer is

described in Table 1.

The interviews with patients and audio-recordings of

the clinical consultations were transcribed in full, and

imported into the software package NUD*IST (Ri-

chards, 2000) for analysis. The researchers followed

what might be called a grounded theory approach

(Glaser & Strauss, 1967) to analysis, identifying some of

the main themes from a close reading of the text and

then devising a coding ‘tree’ in the program that

represented the organisational structure and relation-

ships between the ideas. This coding framework was

then refined as the analysis developed. Following the

model proposed by the advocates of grounded theory

(Charmaz, 2000), we identified a small number of ‘axial’

codes around which others revolved. Codes included

such themes as ‘decision-making’, ‘uncertainty’, ‘visibi-

lity’, ‘guidelines’, ‘rationing’, ‘patient identity’, etc.

The clinical assessment of a cancer genetic risk is a

complex business (Wood, Prior, & Gray, 2003). Of

direct significance to this paper is the fact that a risk

assessment is directly related to the flow of services and

resources that are directed towards patient-clients

(Prior, 2001, 2003). For example, patient-clients deemed


at low risk do not generally gain access to face-to-face

consultations with clinical geneticists, whilst people at

‘high’ or possibly ‘moderate’ risk do. Only high risk

patient-clients are likely to be offered genetic testing

facilities (and counselling), and only moderate- and high

risk patient-clients are likely to be offered access to

additional screening services. It is expected that low-risk

patients will be managed and monitored in the primary

care sector. In that light, a genetic risk assessment is

quite a busy vehicle—carrying as it does all manner of

implications. In the following sections, we focus on how

patient-clients integrate such assessments into their

everyday worlds.

Status liminality and the ‘potential sick role’

P34: It’s understandable that they need to see the

higher risk people, rather than people like mey But

who am I?

FW: Well you are important.

P34: But I am not even a patient. That’s another way

of looking at it, I am not.

FW: Of course you are.

P34: I’m not, I’m not. I do not feel like a patient.

Because to be a patient there has got to be something

wrong with you. And there is nothing wrong with me.

I am just somebody who filled in a bit of paper. That

is how I feel. And I would have felt like that even if I

talked to somebody. I am still not a patient.

(P34: Clinical assessment=moderate risk, colorectal

cancer).

When patient-clients reflected on the experience of

going through the genetics service, it became clear that

many had struggled to comprehend their status in the

health care system—as did the respondent cited above.

Many people expressed uncertain feelings about the fact

that they were neither fully recognised as cancer

patients, nor had they been discharged from the service

as fully recovered or ‘healthy’. Those who had received a

genetic risk estimate as moderate or high therefore saw

themselves as entering a ‘liminal’ state (Turner, 1967). A

state betwixt two worlds where they waited either to

develop a disease and be treated accordingly or to be

reassured from screening results that they were in good

health. This uncertain status of being neither sick nor

healthy introduced new concerns to the patient-clients as

they attempted to integrate the risk estimates into their

lifeworld. In particular, they had to adjust to an

increasing awareness that they might develop cancer in

the coming years, but remained unsure as to when and

indeed if this would happen. This period of anxiously

waiting for test results, screening or firm diagnoses was

identified by Crawford (1980) as the ‘potential sick role’,

(cf. Parsons, 1951). Crawford saw it as a position in

which the integrity of the body is left hanging in

question whilst the individual is denied access to the

privileges of both the unwell and the healthy. Interest-

ingly, as far as screening is concerned, such outcomes

had been predicted over two decades ago by commenta-

tors who noted how ‘risk’ rather than symptoms were

beginning to form the focal point of clinical consulta-

tions (Brett, 1984; Gifford, 1986; Lefebvre, Hursey &

Carleton, 1988). Indeed, in a somewhat percipient

passage Davison, Macintyre and Davey-Smith (1994,

p. 355) argued that there was evidence from studies of

hypertension that ‘asymptomatic risk identification can

create a type of social identity (neither well nor ill but ‘at

risk’)’—and that this held enormous implications for

predictive genetic screening where ‘mass application

could produce large numbers of well, but quasi-sick

individuals and families’.

In our study, the challenges to self-identity

and the lifeworld were perhaps most pronounced in

those who were deemed low risk, for they were not

usually invited to face-to-face consultations, but

encountered the service via telephone or written

communications. For some, this created a sense of

anti-climax. Patient-clients often felt that they had

invested a great deal of emotional energy into

completing a family history questionnaire and mentally

preparing themselves for ‘the worst’ news, only to find

that the outcome was deemed inconsequential, and they

would not be given access to any additional screening or

testing services. Thus, some of the patient-clients who

had been reassured that they did not need any further

treatment interpreted this as evidence that they were not

legitimate ‘patients’ and had been unfairly denied

resources:

P04: And they also sent this leaflet on information for

low-risk patients and discharged patients. Well as I

say again, I haven’t had any treatment to be a

discharged patient.

(P04: Clinical assessment=low risk, breast cancer).

And here is a response from a male colorectal patient:

P32: We laymen have got to accept that they know a

bit more about it than we doy [but] once they have

got involved and said ‘you should be checked just to

be—[I felt] I won’t say fobbed off, but written off

with just a note saying, you knowy Virtually it is

saying ‘don’t bother us.’ That is my opiniony I felt a

bit unhappy then and even more so when [my

brother] was sent for tests, and more so again when

they found something. So I have sort of been through

three stages of concern between then and now. And

as I say, I just felt a bit, er a bit, sort of pushed to one

side I suppose.

(P34: Clinical assessment=low risk, colorectal

cancer).


In line with our lifeworld perspective, it is possible to

argue that through communicative action people not

only report on the circumstances in which they exist and

act, but in so doing ‘develop, confirm, and renew their

membership of social groups and their own identities’

(Habermas, 1987, p. 139). In that respect these claims to

exclusion are telling, and generate a series of questions

about why such a sense of exclusion should exist and

how patient-clients sought to deal with their liminal

position. Previous research would suggest that lay

‘beliefs’ about the nature and causes of disease and lay

frames for assessing risk might be implicated in the

answers to such questions. So, it is to such issues that we

turn in the following two sub-sections.

Assessing genetic risk

A number of researchers have commented on how

there can be considerable divergence between lay and

professional understandings of risk. This, not least

because health risks can be perceived by patient-clients

in highly social, emotive and symbolic terms

(Joffe, 2003). Indeed, lay risk estimates—especially in

the field of genetics—tend to be formulated on a

different basis from those of medical professionals

(Richards, 1997; Parsons & Atkinson, 1992). And

this finding was certainly replicated in our own

data. Thus, it was clear that respondents often assessed

their risk on the basis of bodily resemblance of close kin,

and that probability calculations tended to be derived

from small and familiar (in every sense of that term)

samples. The following extracts illustrate the general

issues.

P10: [Accounting for why she is at risk of an inherited

mutation] To look at, size and their shapes. We are

all the same shape. As you have seen my shape you

have seen all my aunties. We have all got big hips and

bottoms and little boobs. And there are strong

features throughout the family. And it isn’t until

you do something like this and you look at all the

family on one photograph that you start picking out

all these thingsy

(P10: Clinical assessment=high risk, breast cancer).

This, of course, touches on one of the most commonly

cited lay theories, reported by Richards (1997), that

there must be a close link between genotype and

phenotype. Thus, many people said that they believed

themselves to be at high risk of cancer because they

physically resembled a relative who had been affected by

it. However, the conceptual organisation of the family as

divided into maternal and paternal ‘sides’ has been

identified by Davison (1997) as a common way in which

British people talk about kinship and inheritance, along

with the belief that individuals ‘take after’ older

relatives. Thus, patient-client 33 believed that cancer

had affected her family through ‘‘My mother’s side.

With my father’s side it was all heart and stroke.’’

Similarly, patient-client 16 had until recently thought

that she was protected from a genetic risk that ran down

the male side of the family; all of the women in the

family had lived to a ‘ripe old age’. She was highly

surprised when her mother developed breast cancer, and

had had to adjust her beliefs to accommodate the new

question of risk.

In other cases, the patient-clients observed from their

family history that cancer had occurred variously

between rather than within each generation. They

accounted for this in terms of the belief that cancer

‘skips a generation’, a popular lay theory also identified

by Richards (1997). This can, of course, be variously

explained in terms of the principles of Mendelian

inheritance, but for patients-clients there was simply a

general awareness of cancer occurring sporadically in

their family. For example, patient-client 13 had agreed

to take part in a research project about breast cancer

because her mother had died of the disease and she

feared for her own daughter’s health:

P13: Yes, in all honesty when I was in my 30s I can’t

say I was paranoid about it but it was on my mind a

lot. The reason I agreed to take part in the research in

all honesty was because any study I felt would help,

perhaps if it would skip my generation it would

reappear perhaps in my daughter’s generation. And

any research could help her and my grand-daughter,

is the real reason that I agreed to take part in ity I

think for my age now I think you have put [my risk

status] higher than I would.

(P13: Clinical assessment=moderate risk, breast

cancer).

Patient-client 13 was unusual in underestimating her

own risk level, for it was much more common for patient-

clients to overestimate relative to the genetic risk assess-

ment (cf. Hallowell, Statham, & Murton, 1998). Thus

patient-client 19, who was at moderate risk of developing

colorectal cancer, overestimated her own risk as around

50% because she had compared her family history to

information she had absorbed from the media in order to

make a more meaningful, individualised estimate:

P19: I mean I sort of, you know you read magazines

and on the TV and they talk about 1 in 3 or 1 in 5

people in the population. And then you do a quick

calculation in your head and there is my mum, my

uncle and my auntie. And so that really puts me

higher than 1 in 3. So I reckon I have got about 50:50

chance.

(P19: Clinical assessment=moderate risk, colorec-

tal).


Patient-client 12 articulates, in a somewhat

succinct manner, many of the pertinent issues about

inheritance and risk that we encountered among our

respondents.

P12: I think I follow my grandmother’s family

[laughs] And, like I said, all the girl cousins are

exactly the same. If all my family was in the same

room you would know my family, you would know

them. Because we have all got such strongy and the

feet [laughter], and feet. Even if we don’t look like

each other

FW: Mm. And do you think that might affect your

chances of inheriting?

P12: I think soy.

Genetics and aetiology

A number of researchers have suggested that people at

risk of inherited genetic conditions often conceptualise

the role of ‘genes’ in a multi-factorial causal framework

of disease and illness. So that whilst ‘inheriting a gene

[is] seen as important, it [is] not considered sufficient for

the onset of [a] condition’ (Marteau & Senior, 1997).

This certainly seems to be so for those who are affected

by inheritable forms of colorectal cancer (Michie, Smith,

Senior, & Marteau, 2003; Michie et al., 2002). Such

findings are, to a large degree, replicated in our own

work. So that whilst patient-clients were generally

prepared to trust in the scientific expertise of the medical

profession, many remained sceptical about the extent to

which genetics could account for their personal or family

circumstances.

Genetic risk was, in a sense, put in its place, as just

one of many aspects of family life that might affect

health, and as something that must be understood in

relation to one’s everyday experiences. Such a strategy

of normalisation was often reflected in the patient-

clients’ beliefs about the role of genes in causing cancer.

Many believed that while a ‘cancer gene’ might run in

the family, they would only develop the illness if the

gene were ‘triggered’ by knocks and bumps to the body

or other distressing life events. There was a sense

perhaps that, in some circumstances, one could take

steps to ameliorate any ‘bad-hand’ that fate might have

dealt out to one. Thus patient-client 24 referred to a

highly stressful job, a violent relationship and a car

accident as possible factors that might have damaged

her body and left her more vulnerable to genetic disease.

Whilst patient-client 28 said quite simply, ‘‘if I have got

the genes I don’t want anything to trigger them.’’ Others

used this idea of an interaction between genetic and

environmental factors to increase their sense of control

over their future health. Thus many people accounted

for the steps they had taken to modify their lifestyle and

gather information that might prevent them from

triggering a predisposition to cancer. As patient-client

16 explained,

P16: You may have the gene but provided you are

educated you may be able to prevent that gene from

developing into anything. And that I think is what

the key is, that you have that knowledge... I just

think you are taking control of things as opposed to

sweeping it under the carpet, and don’t talk about

ity At least you are informed and you are taking

precautions.


cancer).

Meanwhile, some of the respondents had begun to

think about inheritance as a wider issue than one of

genetics alone, identifying aspects of their family back-

grounds that suggested links between the generations.

Patient-client 12 referred to her family history of cancer

to estimate the crude probability of her own risk level,

confessing that she was ‘‘a bit concerned because of the

number of people with cancer in my family. My mother

died of breast cancer, [and] I’ve got 4 sisters who have

had mastectomies.’’ Meanwhile, patient-client 31 had

consulted with other family members to devise a lay

theory of who was at most risk of cancer, drawing on

various non-genetic factors:

P31: Well because of family history. I am bound to be

at a bigger risk. I mean possibly I am not carrying the

gene, but I know I am more at risk maybe than I

would normally be.

FW: So irrespective of whether you have the gene or

not, you think you might be at a higher risk?

P31: Yeah. I think in the back of my mind. Although

that doesn’t make sense because you have got to be

having the gene to be at risk, don’t you? But I think it

is always there in the back of my mind. And my

cousin and I go through all sorts because as I say she

is in on the risk. And she says ‘well we will both be all

right because we smoke and none of the others

smoked.’

(P31: Clinical assessment=high risk, ovarian/breast

cancer).

These lay frameworks for the assessment of genetic

risk and of the role of ‘genes’ in disease causation form

part of that background knowledge (i.e. the lifeworld) in

terms of which clinical risk communication takes place.

How professionals deal with such issues (and how

patient-clients react) forms a site for important research

in itself. Our only concern at this stage is to indicate that

being-at-risk of inherited cancer (for lay people) involves

more than mere genetics—a point further illustrated by

the following extract drawn from a clinic consultation.


P59: I thought I was probably relatively high risk

because of my sister. Yes. (Pause) How much

influence do you feel there are factors like stress?

NC: (Laughs) Well at the present time we don’t put it

into the equation at all.

P59: I think stress was a big factor with my sister. My

sister had an awful lot of stress really since the age of

20. She married quite young, she had a baby at 21,

her husband was a homosexual, left her when the

third baby was a few months oldy

CN: Yes, but obviously if we found a faulty gene in

the family that would be the underlying cause and the

stress theory wouldn’t be quite so plausibley

P59: I’ve always had this gut feeling that in any

cancer if you have a stressful life...

These illustrations of lay theorising—about genetics

and aetiology and the assessment of risk—may go some

way to point toward an explanation as to why ‘low risk’

individuals often feel excluded and marginalised by

being so categorised. Our data, however, suggest that

more than these two factors are involved in the

dissatisfaction of ‘not being a patient’.

Seeking surveillance

Contrary to our expectations, most of those who had

been assessed as being at moderate or high risk of an

inherited condition tended to reflect on that judgement

with equanimity. However, after being told that they

were assessed as being at normal or low risk of inheriting

a mutation, many patient-clients expressed a sense of

dissatisfaction. Consider the following illustrations.

Patient-client 29 had received a letter to say that she

did not have an increased risk of developing breast

cancer, but appeared far from pleased at the ‘good’

news:

FW: And how do you feel about that? Do you feel

reassured?

P29: No. Not at all. It just seems to be too much

coincidence that so many people in my family all on

my mum’s side and all blood related, you know. My

Nan, her brother and her sister died. My mum’s

sister. You know there are just too many that puts

things... you know reading a letter which says ‘you

are not in a higher risk’ does not put my mind at rest

at all. Not at ally

(P29: Clinical assessment=low risk, ovarian/breast

cancer).

And similarlyy

FW: Does the fact that they have told you that you

are [low risk], has it reassured...?

P22: No it hasn’t no. I don’t know. I suppose I had it

in my head anyway that I think I am at higher risk,

because it is just so close family. Iy


Conversely, those who were categorised as ‘high risk’

seemed to be quite content with the way in which the

genetics service had configured their status. Indeed, the

‘fortunate’ outcome of receiving a high-risk estimate

appeared to create feelings of safety, reassurance and

trust in the power of medical knowledge. As patient-

client 31 put it,

P31: I’m glad the decision was taken out of my hands

really. And I am pleased I am being monitored. I

went for a mammogram today.

(P31: Clinical assessment=high risk, ovarian/breast

cancer).

Patient 16 expressed similar sentiments:

FW: Mm, so how do you feel about that, being told

that you are at moderate risk?

P16: That is quite acceptable I think. y It just... it

makes me... I am glad because for me to be told that I

will be monitored at the age of 40 is greaty its nice

to know that there is that support, you know you will

be slotted in there and you will be looked after or

whatever


cancer).

Furthermore, in many cases, the understanding that

other family members would also be eligible for screen-

ing and testing augmented these positive feelings.

Patient-client 11 expressed the view that not only was

she ‘‘pleased that they are looking after me’’, but also

she felt that her family had been recognised as worthy of

specialist care and attention. To patient-client 11, this

combination of a personally meaningful risk assessment

and a treatment plan that took into account her family

status was a highly desirable outcome:

P11: Well it’s going to benefit others, I think, more

than myself. And I mean I have granddaughters. And

I have got a baby niece now as welly So it’s

important for future generations. And the fact that

there is so much of it in the family. I think well. I

think we are quite a good batch to test if you know

what I meany And I do feel that by taking part in

this that, em, I am not saying that I will get any better

treatment, but people may take more interest in me.

(P10: Clinical assessment=high risk, breast cancer).

This desire to be recognised and taken seriously by the

genetics service was particularly evident in the case of

patient-client 22, who was convinced that her mother’s

cancer signified a genetic predisposition in the family.

Despite being told that she was at low risk of breast


cancer, this patient-client remained determined to

‘prove’ her theory, and said that she was searching for

more information about her family history and even

considered obtaining a second opinion from a private

practitioner:

P22: And [the Counsellor] said that with my father’s

side, even though there is not enough on my mother’s

side to have the test, if there was a link possibly on

my father’s side, because it was two brothers and a

sister, all dying relatively young from cancer, so we

might get some luck going down that line. So I will

pursue that.

FW: A-ha

P22: I suppose if that was a no to that, that would

have to be the end of the line. I don’t think I could

pursue that any further, apart from going private.

[Pause] I don’t think I would. You know.


This apparent paradox of treating ‘good’ news as

‘bad’ news can possibly be accounted for in a number of

ways. For example, it could be that the receipt of a risk

assessment that ran counter to a personal risk assess-

ment was sufficient in itself to generate a sense of

discordance. Indeed, Renner (2004), in relation to a

study of feedback about cholesterol levels, suggested

that information that is inconsistent with pre-existing

expectancies is generally perceived as less trustworthy

and accurate than is consistent information. It could

also be that as ‘genetic’ causes of disease are commonly

nested in a wider framework of aetiology, discounting

the ‘genetic’ fails to fully discount the ‘inheritance’—as

is argued by Michie et al. (2003).

Both explanations find some support in our data—as

is indicated via the transcript extracts. However, we

would argue that there is more than mere lay ‘belief’

involved in these paradoxical observations. Indeed, we

suggest that what people are reflecting on in our

interviews is not simply their health beliefs, but their

position in the health care system. Consequently, to fully

comprehend their reactions we need to consider the ways

in which people are connected to the material structures

in terms of which they organise their health care.

Resolving uncertainty: the material basis of the lifeworld

As patient-client 41 explained, upon hearing the news

that he had a significantly increased risk of colorectal

cancer and was entitled to colonoscopies until the age

of 60:

P41: This [holds risk assessment letter from the clinic]

is in the background. Am I going to get to 60? Let’s

worry about it when I get to it. You say what do I

think about it? Yeah I am glad. I know that I can say

‘Hey, I want some screening now.’ And they have to

do it too. Whereas if I go along and say ‘my dad and

grand-dad died of cancer can I have some screening?’

Unless I had a genetic risk they would have said ‘on

your bike, back of the queue.’ And at least now this is

in my notes and when my time comes at least I know.

(P41: Clinical assessment=moderate risk, colorectal

cancer).

Patient-client 06 illustrated a similar outlook by

proclaiming that while she relied more upon subjective

perceptions and her lay ‘expertise’ than genetic knowl-

edge to identify changes in her body, she would welcome

the additional support of screening and monitoring to

complement her own routines and practices.

P06: I wasn’t particularly worried about the genetic

aspect of it, because as far as I am concerned I am

more at risk anyway. I don’t need a gene to tell me

that. You know the fact that two sisters have had it,

even if statistically I am not, in my mind I am more at

risk. But I wasn’t looking for a gene test to say I had

the gene or anything. It was just really I wanted

increased supervision y I think quite honestly I am

more at risk so I will be more careful. Whatever the

extra risk is, I will just be keeping my eye open a bit

more, and examining a bit more.


cancer).

These references to being monitored, cared for,

looked out for, and being supervised are liberally

scattered throughout our interviews. They signify a

desire for surveillance and engagement with a health

care system that will constantly check and ‘keep an eye

on’ the patient-client. In that sense patient-clients are

not simply giving voice to ‘representations’, but seeking

ways of organising health care resources around their

specific and particular needs and lifeworlds.

More importantly, perhaps, in trying to position

themselves within a system of health care resources it

could be argued that patient-clients are showing an

awareness of the multifaceted nature of risk assessments.

For—as we have pointed out—the latter are not simply

objective scientific assessments of the probability of

coming to harm, but are complex vehicles that determine

the distribution of health care resources. In a sense they

serve as rationing or distributive mechanisms in a health

service system. Thus, users of the service are well aware,

for example, that regular screening, counselling and

other features of health care management are only

available to those assessed as high and moderate risk.

And as our extracts from the interviews (above) indicate,

patient-client’s are ‘not worried’ about risk in the sense

of carrying a mutation. Their eyes are on the resources

that follow the risk, and they see their task as

positioning themselves so as to gain access to those


resources. It is a stance that is clearly evident from the

following extract—drawn from a consultation between a

genetic nurse-counsellor and a service user.

NC2: OK. And do you want me to give to give youy

you know we are talking about high risk. Do you

want me to give you anymore detail than that?

P31: No, ‘high risk’ is enough. That is the reason I

am here.

NC2: OK.

P31: I just want there to be somebody looking after

me. That is how I felt when IBIS1 finished. I thought

‘I have been abandoned.’

Conclusion

The question of risk in relation to health is one that

has become increasingly important for both health

professionals and medical sociologists. This is, perhaps,

not so surprising in what has been termed the risk

society (Beck, 1992), where—through our persistent

attempts to colonise the future—‘the influence of distant

happenings on proximate events and on intimacies of

the self becomes more and more commonplace’ (Gid-

dens, 1991, p. 4). It is certainly the case that in modern

medicine the focus on (and management of) risk status

rather than signs and symptoms of actual bodily

pathology has had considerable implications for pa-

tients, health professionals and for health provision in

general. As we have sought to show, the everyday

practices of cancer genetic clinics illustrate many of the

salient features.

Above all, we have been concerned with demonstrat-

ing how the status of ‘being-at-risk’ can position the

patient or client of a clinical service in a liminal world

betwixt health and illness. This is so for all at risk

patients or clients, and it has implications for the

conceptual architecture of medical sociology and

anthropology—most notably insofar as it reflects on

the notions of ‘health’, ‘illness’ and the sick role.

We have further suggested that the recognition of

liminal status seems to be sharpest among those deemed

to be ‘low risk’ (in that sense, gradations of risk status

are significant). And we have noted how such low-risk

patients or clients express a sense of dissatisfaction with

their risk status and sometimes strive to re-position

themselves into higher risk categories.

An apparent paradox of this kind calls for explana-

tion. Previous research—on patients tested for muta-

tions relating to colorectal cancer (Michie et al., 2002,

2003)—has noted similar paradoxical reactions to

‘negative’ results. In the latter case, explanations have

been sought in terms of individual health beliefs and

‘social representations’. In this paper we have suggested

1A research clinic that offered screening.

that the ways in which patients and clients assess risk

status, together with the ways in which they reflect upon

the role of ‘genes’ in disease causation, may well be

related to the sense of discomfort expressed by people

who were ‘not even patients’. However, we have further

suggested that more than ‘health beliefs’ are likely to be

involved in the reactions. Indeed, it seems to us that

what is involved here is a concern not so much with

‘risk’ as with resources. For, as we have shown, the at

risk (of all categories) more readily focus on health care

benefits associated with a risk status than on probabil-

ities of (future) outcome or even on genetic abnormal-

ities per se.

In any event, it is clear that genetic risk assessments

can profoundly disrupt the lifeworld of patients—that is,

disrupt the taken-for-granted frame of life ‘in which all

problems are located’ (Schutz & Luckman, 1973, p. 4).

Such disruption occurs not merely at the level of

consciousness—of knowledge, belief, etc—but also at

the level of action, and of structure (position). What our

work demonstrates is that lay recipients of professional

genetic risk assessments focus as much, if not more, on

the repair and realignment of the latter as they do on the

former.

Acknowledgements

The authors wish to express their gratitude to

members of the cancer genetics team upon whom the

data collection was dependent. Thanks are also due to

the patient–clients who generously shared their stories

with us, and to Roisin Pill who kindly commented on an

earlier version of the paper. We are grateful to the ESRC

for funding the project under the auspices of the

Innovative Health Technology Programme (award

reference L218252046).

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Documents

Repositioning the patient: the implications of being ‘at risk’