Road-maps and Revelations: on the somatic ethics of genetic susceptibility

7/29/2019 Road-maps and Revelations: on the somatic ethics of genetic susceptibility

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DRAFT VERSION © CHRISTOPHER GROVES 2013 – DO NOT CITE WITHOUT AUTHORIAL PERMISSION

Road-maps and Revelations: on the somatic ethics of genetic

susceptibility

Dr Christopher Groves

ESRC Centre for the Economic and Social Aspects of Genomics (Cesagen), Cardiff

University, Cardiff, UK The ESRC Centre for Economic and Social Aspects of Genomics (Cesagen)

Cardiff University

10 Museum Place

Cardiff

CF10 3BG

Tel.: +44 (0) 2920 870544

Email: [email protected]



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Road-maps and Revelations: on the somatic ethics of genetic

susceptibility

Understanding genomic susceptibility risk has been represented as key to a new

era of personalized medicine, in which ‘empowered’ individuals shape their lives

according to a ‘somatic ethics’ of genetic risk management. Based on a

comprehensive analysis of websites and other documents produced by key

companies within the personal genomics industry, I argue that the rhetoric of

empowerment these companies employ constructs an ‘ideal subject’ of personal

genomics while also expressing tensions implicit within the idea of a somatic

ethics based on genetic susceptibility. Using Kaushik Sunder Rajan’s concept of

‘genomic fetishism’, I show how these tensions arise from the relationship the

rhetoric of personal genomics constructs between risk and uncertainty, and relate

them to broader tensions within ‘risk thinking’ as a mode of governmentality that

extends beyond genomics.

Keywords: personal genomics; uncertainty; genomic fetishism

Introduction

In analyzing the increasing centrality of the body to contemporary ethics and politics,

Nikolas Rose has identified the emergence of a ‘somatic ethics’, where the object of

concern is the body interpreted as the materialization of the self, and is mediated by newmodes of knowledge – genetics and genomics, neurology and psychology (Rose, 2007,

pp. 26-27). This somaticisation of the subject links up with other forms of

subjectification in ‘advanced liberal societies’ which ensure that ‘biology’ will not ‘be

accepted as fate’ (p. 26). For example, others have noted how the individual is

increasingly enjoined to take the responsibility for being an ‘entrepreneurial self’(Petersen & Lupton, 1996) positioned within

a political and ethical field in which individuals are increasingly obligated to

formulate life strategies, to seek to maximize their life chances, to take actions or

refrain from actions in order to increase the quality of their lives [...] (p. 487)

In addition, action within this ‘political and ethical field’ is increasingly defined by ‘risk

thinking’ (Rose, 1999), in which the future is rendered legible to institutions and

individuals through the lens of actuarial, probabilistic calculation. The individual, at the

intersection of somaticisation and these modes of governmentality, is summoned to take

care of the future of her body – its risks and its potential. The uncertain future isconstructed in a particular way – as knowable through the tools employed by risk

thinking, as malleable to the life-plans of rational individuals, and as demanding from

them a commitment to the care of an ‘orderly’ body. In this way, the confluence of

somatic ethics, risk thinking and the entrepreneurial self represents a specific way of

‘producing’ the future by combining ethics, knowledge and modes of action (Adam &Groves, 2007)

Promissory discourses around genomics contribute to this by colouring theuncertain future in shades of anxiety and hope. Hope is supported, in particular, by

discourses of genetic susceptibility accompanying the Human Genome Project.Genome-wide association studies (GWAS) and individual whole-genome sequencing

(WGS) allow the complex, probabilistic associations between particular phenotypical

traits and multiple genes to be explored and tested. These technologies of knowledge



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production construct the susceptible individual’s future as a non-determined, contingent

combination of genetics and environmental influences.

Kaushik Sunder Rajan (2006) has suggested, however, that genetic

susceptibility, as a way of understanding the future, forms part of circuits of

commodification that fetishize the genome. Genomic fetishism is not genetic

determinism: it is an ‘understanding of determinacy’ created ‘when probability reifiesinto prophecy’ (p. 163). In this paper, I illustrate how genomic fetishism can be a useful

concept for analysing key tensions within a somatic ethics articulated around genomics.

I do this by examining how companies selling personal genomic susceptibility testing

(PGST) construct such an ethics, alongside an idealised subjectivity, that of the PGSTconsumer. I explore the ethical injunctions that are implicit or explicit within these

representations, lay out how genomic fetishism haunts the futures these companiesconstruct therein, and how this calls into being a particular kind of genomic subject that

is somewhat at odds with the idea of an activist, entrepreneurial self guided by asomatic telos.

Background and analytical themes

Since 2007, a number of companies (particularly in the USA) have been offering

susceptibility testing for a variety of complex, common health conditions. These tests

represent a new wave of mass-market genetic testing, distinct in terms of their

technological infrastructure, theoretical basis and regulatory status from previous‘generations’ of susceptibility testing based on a limited number of genes (such as

BRCA1 and 2) and from testing for monogenic conditions. These tests build on socio-technical developments constitutive of genomics as distinct from genetics, and

particularly on the genome-wide association study (GWAS), which explorescorrelations between the incidence of particular variations at single points on an

individual’s genome (single nucleotide polymorphisms, or SNPs) and the presence of

particular phenotypical traits (including pathological ones) ght. After subjecting

customers’ biosamples (typically, spittle or cheekswab) to a genomic assay (a scan of

areas where significant variation is known to occur, rather than full genome

sequencing), PGST companies compare the results with data from a library of GWAS

studies assembled by the company according to its own scientific criteria. Proprietary

algorithms are then used to produce risk profiles from this data for a variety of health

conditions. Unlike earlier generations of susceptibility tests, PGST is subject to a

significant degree of regulatory ambiguity, which has stimulated concern over when and

how these tests might be used, how reliable they might be, and what clinical value (if

any) they might possess (SACGHS, 2010).The evolution of emerging technologies is often influenced by the expectations

which surround them, which may take the form of a regime of hope, often employinghighly speculative rhetoric about possible futures (Brown, 2005). In the case of PGST, a

regime of hope has been articulated around personalized medicine. Personal genomics

has been presented as speeding up the emergence of a universalized preventative

medicine, on the basis that, whether in relation to rare, single gene conditions (such as

Huntingdon’s), common, multigenic ones (like diabetes and heart disease) or adverse

reactions to particular medicines, ‘we are all at risk for something’ (Francis Collins,

quoted in Beardsley, 1996, p. 102). Individual genotyping for genetic disease risk has

been presented by PGST companies as promising major reductions in public healthcare

costs (Navigenics, press release, 8/04/08), with pharmacogenomic (effect of genotypeon drug response) testing being consistently promoted as the most promising source of



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progress (Scott, 2011). Built into personalized medicine is an ethical vision of an open-

ended concern for ‘wellness’, for the ‘prolonging of healthy life’ (Rose’s phrase,

denoting the telos of a somatic ethic), which is reflected here and now in the business

models of PGST companies that provide a subscription model of genomic risk testing,

in which customers pay to access updates on new GWAS research on SNP associations.

However, the plausibility of such future visions is highly contested. The clinicalvalidity (how reliably a given genetic variant is associated with the risk of a specific

disease) and clinical utility (whether the test provides information that can be useful in

clinical decisions) of GWAS-based analyses has been subjected to significant scrutiny.

The promised predictive power of tests has been doubted (e.g. Hall, Mathews, &Morley, 2010; Liu & Song, 2010; Makowsky et al., 2011), and it has been suggested

that, compared with phenotypical data, genomic data is a statistically insignificant predictor of disease (Paynter et al., 2010). Still others criticise expectations by focusing

on the methodological assumptions of GWAS. Some genomics researchers questionwhether the ‘common variants’ approach to mapping susceptibility under GWAS is

superior to methods which examine rare variants; whether the complexity of gene-gene

is an obstacle to predictive power (McCarthy et al., 2008), or whether the phenomenonof missing heredity surrounds GWAS-based risk scores with a significant and

unquantifiable amount of uncertainty (Tomasson, 2009; Zuk et al., 2012). Finally, as the

scientific corpus on which testing draws has new studies added to it, risk scores for a

given SNP or SNPs may be revised or even reversed, along with any corresponding

classification of an individual as being, for example, high or low risk (Bunnik et al.,

2011, p. 7).

The potency of the hopes surrounding PGST in the face of such scepticism is

perhaps sustained by assumptions rooted within other social practices. The rhetorical

force of expectations surrounding personal genomics derives in part from the increasinglegitimacy ascribed to ‘risk thinking’ (Rose, 1999) within and across a variety of social

domains. Interpreted as a form of governmentality, risk thinking can be seen as anextension of rationalisation (Turner, 1993) that retains its typical commitments, such as

a reliance on instrumental reason as a criterion of public rationality, strict

consequentialism in ethics, and promotion of scientific methods of investigation based

on experimental tests of naturalistic hypotheses. Risk thinking exemplifies one of the

main goals of rationalisation – to render the world legible, quantifiable and governable

– by mapping and gridding the future. Using concepts from probability theory and

welfare economics, it constructs concepts of the ‘expectation value’ of possible events,

domesticating an uncertain future by quantifying uncertainties and rendering them

commensurable (Espeland & Stevens, 1998).

Risks, fixed in the form of expectation values, can be treated denotatively asobjective entities which, once identified, can be subjected to further scientific

investigation. At the same time, the field of uncertainties in which they are located tendsto become reified alongside them (Wynne, 1992). Once identified, quantifiable risks

form a bridgehead from which background uncertainties can be represented as fixed andremediable in relation to those risks already identified, becoming ‘known unknowns’ in

the process. The implicit hope within risk thinking is that to view the future through thelens of risk is not simply a useful means of managing uncertainty, but is also a way of

objectively reducing uncertainty: a legible future is a tameable one. Yet this is a

questionable assumption: uncertainty can also be dynamic and shifting: research does

not necessarily lead to a reduction in uncertainty, but may instead displace and/or even

deepen it (Schummer, 2001). Beyond the rationalised, denotative meaning of risk, itsconnotative significance lies in the project of establishing a stable distinction between



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knowable risk and a residual territory of unknown possibilities, thus keeping at bay the

suspicion that risk knowledge is a temporary island in a shifting sea of irremediable

uncertainty (Groves, 2009).

As an extension of this symbolic meaning, the distinction between reified

categories of risk and uncertainty can become transformed into one between moral

categories, as has been documented in public health discourse. Examples of suchmoralized distinctions based on risk versus uncertainty are those between

controlled/unruly and rational/emotional patients (Petersen & Lupton, 1996, p. xii), or

between anxious, ‘endangered’ individuals subject to uncontrollable biological

processes, and rational, distanced, risk-aware subjects who reduce their exposure todanger by managing their health risks (Crawford, 2004). Similar categories which

support ascribing individual responsibility for risk have been mapped within women’srepresentations of themselves as ‘risk managers’ of their own propensities for breast

cancer (Robertson, 2000), and in how blame is applied to women who do not practicesupposedly preventive measures (Parker, 1995, pp. 320-321; Press et al., 2000, p. 241).

These examples demonstrate that, for risk thinking, what counts as acting

responsibly in the face of an uncertain future is generally read off the reified, ‘scientific’definition of risk, but also that the reified understanding of risk then also becomes

morally sanctified. To be responsible is to strive to eliminate, reduce or otherwise

control contingencies, guided by a calculus of risk. Consequently, the ‘scientific’

definition of risk is retrospectively baptised as the foundation of a specific moral order,

identified by Rose and others with neoliberalism.

However, if uncertainty is treated analytically as having a range of potentially

dynamic meanings rather than just a single one (risk), this ethical framing is inadequate

(Groves, 2009). Where uncertainty is experienced as reflexive, for example, efforts at

risk management may intensify uncertainty as easily as reduce it. The calculable futuredefined by assessments of risk is shown to rest on a perspective illusion, in which the

future appears as a ‘stationary’ field of possibilities. What this ignores is how risk management itself reflexively transforms the future in unpredictable ways (Orléan,

2010).

One might expect, then, different treatments of uncertainty to underlie distinct

ethical positions regarding how to deal with hazards to health, or more widely. In the

remainder of this section, I explore this idea by considering some ways in which social

science research has shown how the incorporation of genetic and genomic knowledge

within healthcare creates tensions within public health discourse, centring on how risk

and uncertainty should be dealt with.

Knowledge

Testing for susceptibility to conditions like breast cancer, based on the presence of

certain mutations in BRCA1 and BRCA2 genes, has been the subject of a broad body of

social science scholarship that has emerged since the late 1980s. This research has

drawn on scholarship that has shown how risk thinking in healthcare has transformed

individuals into loci for series of risk data that represent the ‘environment’ in which

health risks are determined. Elements of this environment include psychological,

physical and social data, together with ‘lifestyle’ (Petersen & Lupton, 1996, pp. 4-5,

15).

The risk conferred by particular genetic mutations or (in post-genomic

discourses) ‘polymorphisms’ forms part of this environment. Genetic/genomic risk enables a diverse range of institutions and agencies to re-constitute and govern the



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population as a set of ‘risky’ individuals and to encourage them to participate in their

own governance (Raman & Tutton, 2009, p. 5). However, using genetic susceptibility

information to support such efforts is problematic. Commenting on models of breast

cancer risk, Press et al. (2000, p. 242) note that risk information may create new

uncertainties because, as it is based on epidemiological studies, it is ‘ostensibly

meaningful only on a population level and not for an individual woman attempting tounderstand her own risk’; nonetheless, this information tends to be ‘conveyed as exact,

certain and tailored to the individual’.

The idea that risk information is tailored to the individual has been contested by

Gould (1985, p. 521), who discusses the difference between epidemiological data andindividual prognosis. The key point of uncertainty here is to what extent the individual

should be considered a representative member of the population(s) from which risk datais sourced, and whether, therefore, positing a direct link between population data and

individual risk may commit the ‘ecological fallacy’ (Clancy, Berger, & Magliozzi,2003). Changing circumstances, including individual actions to manage risk, may move

the individual into an entirely different ‘population’ with a different risk profile

(Crawford, 2004), in effect changing the supposedly ‘stationary’ future mapped by risk data. Although the promise of genomics has been identified as ‘molecular precision’

(Rose 2007 p. 19), i.e. to enable the exact contribution of an individual’s genotype to his

or her risk of a developing a condition to be determined, to establish associations

between multiple SNPs and a given disease still relies on genetic epidemiology, in

which different and conflicting research programmes (e.g. focusing on rare vs. common

variants) have emerged.

Action

Commentators on programmes of genetic screening for BRCA mutations have noted

that a common assumption behind them was that a better understanding of risk will

inevitably drives individuals to ‘de-risk’ their lifestyles, (Lock, 1998, p. 13). However,

it has also been noted that such expectations have proven problematic, as individuals are

generally not motivated by the provision of genetic information alone (Collins, Wright

et al. 2011). Indeed, more information may create additional uncertainties that translate

into unwanted forms of action, as has been observed in the case of ‘risk spirals’, where

the generic quality of data stimulates a desire for more data, together with monitoring,

extra visits to physicians and so on, all of which may, together, produce more anxiety

(Press, et al., 2000).

If quantification alone does not domesticate uncertainty, the symbolic function

of risk as a moral category may do so, however. It has been suggested that, when facedwith reflexive or spiralling risk uncertainty, risk thinking can provide ritualized,

symbolic practices that serve to restore ‘plausible coherence’ to the individual’srelationship with her health, and to public health practices more generally by ensuring

that contingency is at least symbolically tamed. Crawford (2004) analyses three

oppositions which emerge around the distinction between tamed and untamed

uncertainty as ways of re-ordering the social world around the symbolic coordinates of

risk thinking: possible events construed as unpredictable dangers versus predictable

risks; anxious endangered individuals, versus rational, risk-aware subjects; and lay

prejudice versus scientific expertise. These symbolic categories allow the boundary

between order and disorder to be policed, with the aim of establishing and maintaining

behavioural norms of individual responsibility.



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Nonetheless, this symbolic dimension of risk thinking in healthcare may also

prove problematic. Genetic susceptibility creates asymptomatic individuals, called to

become self-monitoring risk managers, a necessarily open-ended vocation. It has been

suggested that this kind of open-endedness may be psychologically problematic, given

the typical symbolic patterning of health practices in Western cultures. Culturally

prevalent health narratives (Frank, 1998) tend to be structured around a passage fromillness to health that can best be described as restitutive (Wong & King, 2008). But the

narrative of individual responsibility for risk does not fit with these cultural categories.

Predictions of risk represent temporally abstract ‘futures’, without specifiable location

in time, which may undermine individuals’ identification with particular modes of acting and models of behaviour that are constitutive of their understanding of and

attitudes towards their own health (Jain, 2007, p. 79), and which express attachment to‘lived futures’ (Adam and Groves 2007, p. 128).

Ethics

The tensions between the forms of knowledge genetic/genomic forms of risk thinkingconstructs and the modes of action it promotes also give rise to further tensions that

affect its deepest values, and in particular its characteristic ways of representing

individual responsibility. Somatic ethics, with its telos of avoiding risk and optimizing

health, links with pre-existing practices and concepts constitutive of the ‘entrepreneurial

self’ (Petersen & Lupton, 1996), at the same time as it links up with risk thinking.Disclosures regarding genetic susceptibility pass to the individual a responsibility, not

just to the self, but more specifically to its always to-be-anticipated future (Adams,Murphy, & Clarke, 2009). As a result, the subject of genetic risk, it has been suggested,

may be transformed into a ‘perpetual patient’ (Finkler, 2000), for whom personalvigilance and submission to external regimes of monitoring are associated, in symbolic

terms, with order and rational, utility-maximizing behaviour.

The ethical universe of risk thinking in which the difference between

good/orderly and bad/disorderly bodies is produced remains, therefore, one where final

confirmation of where the individual belongs is always pending. If an epistemological

gap persists between epidemiological data and the individual case (even in genomics,

where the fulfilment of its promise of molecular precision remains deferred), then a

properly ethical gap opens up too within the concept of individual responsibility for

genetic risk. The reason for this is that responsibility for one’s heath is ceaselessly

projected into the future perfect tense. I may have been responsible yesterday and today

(e.g. by following expert recommendations on diet and exercise appropriate to the

segment of the at-risk population to which – to date – I have been assigned, thanks tomy genotype) but whether I will have been responsible or not is a question that is

always to be settled. Lowered risk, or optimal health, remains always to be achieved.They thus represent intrinsically unreachable regulative ideals, distinct from traditional

deontological moral categories, where membership of symbolic categories (good or

bad) is settled on the basis of whether one acts in conformity with a fixed law. Where

ethics enjoins us to live up to a regulative ideal, there is always uncertainty as to

whether one has pursued the ideal correctly (Žižek, 1996, p. 119), reproducing

uncertainty and with it a potential for anxiety.



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PGST and genomic subjects: genomic essentialism, anti-essentialism and

fetishism

I have shown how risk thinking in healthcare can be interpreted as an attempt to

construct a somatic ethics, which includes within it a risk subject enjoined to live by

such an ethics. Drawing on research on the dilemmas characteristic of a previousgeneration of genetic testing, I have explored why such a goal may be problematic,

thanks to the static characterisation of uncertainty central to risk thinking, and which is

inherited by its genetic and genomic expressions.

In this section, I explore in detail how the tensions I have described are reflected

in the discursive efforts of the ‘new wave’ of susceptibility testing companies to

construct a coherent telos for PGST, along with an ‘ideal consumer’ who will pursue it.

The need for them to deal with these tensions within the ways they represent the valueand promise of their services is reinforced by the political economy of PGST, which

positions individuals as passive consumers at the same time as companies extol thefuture of personalized medicine as one in which individuals will ‘take control’ of their

health.I trace below how four PGST companies are negotiating the ethical territory

opened up by susceptibility risk thinking, and how they do this via particular rhetorical

strategies, including elision and distinction (Roberts & Throsby, 2008). The structure of

our empirical analysis mirrors that of our analysis in the previous section: beginning by

examining the how representations of genomic knowledge contribute to making up

PGST subjects, I then look at the modes of action required of the ideal genomic subject,

and finally, explore the ethical frameworks which PGST companies construct around

post-genomic life. The complete picture resulting from this analysis is one of a idealized

subject and a somatic ethics for which hope is central, yet one which constantly tries to

head off anxiety and the prospect of passivity inherent in the political economy of

healthcare genomics.

Approach

The empirical analysis is based on a corpus of 245 public documents, covering four

companies (23andMe, deCODEme, Navigenics, and Pathway Genomics), with

23andMe being the most represented (80 items). These included an extensive sample of

company webpages, onlne staff interviews, articles by staff, and other public documents

such as testimony to US Congress committees. To provide a more comprehensive

historical view, I used the Internet Archive (internetarchive.org) to index versions of the

companies’ websites at quarterly intervals (where available). References to webpagesare given below in the text in the form [site, ‘page title’, date range], where the daterange indicates the dates of the earliest and the most recent instances of the quoted text

found. Documents were coded using NVivo 8 in order to map how companies’representations of the consumers of their tests have evolved. Some limitations of our

approach should be noted. The Internet Archive does not preserve webpages from Navigenics.com, as the company website is configured to prevent ‘bots’ (automated

software applications) from indexing its content. Nonetheless, the company archives its

press releases online, and a number of past interviews with senior staff were also

available.



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Essentialism and anti-essentialism

I begin with the ways in which PGST companies have constructed a relationship

between genomic knowledge and identity. The companies studied have generally taken

care, from the outset (23andMe, deCODEme and Navigenics all launched in November

2007, Pathway in June 2009) to avoid outright genetic determinism in their online andother published content. There are exceptions, such as citations of discoveries of a ‘gene

for’ multigenic diseases (e.g. Pathway, Front Page, 12/06/09). Nonetheless, the link

between genomics and identity made by PGST companies tends to exhibit genetic

essentialism, by representing the genetic component of our being as the core of what

makes us human (Einsiedel & Geransar, 2009, p. 355).

For example, a close connection is often posited between personal genetic

information (PGI) and fundamental, hitherto hidden aspects of identity. PGST providesthe means to ‘to truly know thyself’ (Navigenics, Press Release, 08/04/08). Genetics is

responsible both for our common identity as human beings, our ‘fundamentalsimilarities’ (23andMe, 13/03/09, ‘About Us: Core Values’), and for our identities as

individuals, what ‘makes you unique’, (23andMe, ‘How it works’, 13/03/09). Althoughthe relationship between genetics and phenotype may not be represented as strongly

deterministic (Resnik & Vorhaus, 2006), it is still direct, one-directional and

unmediated: ‘[o]ur phenotype is the physical or visible representation of our genes’

(deCODEme, ‘About Genetics – Prediction’, 20/05/10); ‘Your Genes Hold the Untold

Story of Your Health’ (Pathway, ‘Genes and Health Conditions’, 08/06/11). Metaphors

which represent DNA as ‘an organic blueprint or book of recipes’ (deCODEme, ‘About

Genetics – What are Genes’, 20/05/10-07/06/11) are occasionally used.

At the same time, an anti-essentialist tendency is often apparent. 23andMe

suggests that other, non-genetic factors are equally or more important in shaping

phenotypical traits, pointing out on their ‘Core Values’ page, for example, that genes

operate

in conjunction with diet, environment and other factors to influence aspects of our

appearance, behaviour, and physiology.

Other companies also employ the ‘equally or more important’ trope. For example,

Navigenics notes on its ‘Next Steps’ pages (07/06/11) that ‘[i]n some cases, the

environmental risks carry much more weight than the genetic risks’.

There appears, therefore, to be a tension between essentialist and anti-essentialist representations, perhaps most marked in the case of deCODEme. However,

this tension eases when companies construct links between their susceptibility risk products and action that can be taken by the customer, or by customers together with

their physicians, to reduce risk. Here, anti-essentialist tropes become much moredominant, with genomic risk information represented as being both of personal utility

(in motivating behaviour change) and clinical usefulness (in potentially improving

diagnoses and treatment recommendations). For example, on one of its ‘Customer

Stories’ pages, deCODEme describes a patient’s test results, requested by his physician,

as ‘another tool, or as Jack repeats, another arrow in Dr. Bale’s quiver’ (‘Genetic test is

sensible self-investment’, 3/10/08-15/06/2011). The function of the ‘tool’ is described

here as to exert direct causal influence on behaviour.

The space for action is still represented as created by one’s genotype, however,

which is often represented as, ‘in the last instance’, the anchor of one’s identity: ‘mygenetic makeup isn’t going to change’ (deCODEme, ‘Anna Peterson’, 20/05/10 –



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07/06/11); ‘[y]our genetic risk can't be changed’ (Navigenics, ‘Next Steps’,

07/06/2011). On the other hand, if the influence of genotype is, in the last instance, what

other causal influences only modify, companies insist there remains plenty of room in

which to act. Indeed, the importance of environmental factors is central to claims about

the ‘empowerment’ provided by genomic self-knowledge. Changing ‘lifestyle’ factors

such as diet, smoking etc. are often represented as the key to reducing risk.

Genomic fetishism

As we have seen, anti-essentialist themes often emerge when companies focus on how

PGST consumers act upon disclosures of genomic risk. Although these dilute genetic

essentialist tropes, and mark a distance from genetic determinism, they also mark points

where genomic fetishism can appear.

A typical example is how imagery of maps and mapping is deployed: ‘your

genes are a road-map to better health’ (deCODEme.com, Front Page, 20/05/10-

15/06/11), ‘a map that can help guide your future’ (Navigenics.com, ‘Next Steps’,

07/06/2011). Mapping metaphors in genetics and genomics have a long history and aretypically complex, as Rosner and Johnson (1995, pp. 117-20) point out, having

implications for knowledge and action in the shape of how they colonise both the

genome and the future. The idea of genomic risk interpretation as ‘road-mapping’

extrapolates from population-level risk data anchored in the past to a present future of

determinate risk (Adam & Groves, 2007, p. 5). By extending the planning and acting perspective of whoever surveys the mapped territory, the map extends the reach of their

power to control and ‘civilise’ territory.The use of ‘road-map’ imagery (implying a definitive guide for the individual

making a journey into the unknown, as contrasted with earlier invocations of genomic‘maps’ in connection with the Human Genome Project, for example) represents a direct

extension of the relationship posited by companies between knowledge and action. The

‘in the last instance’ trope connects knowledge to a fixed unchanging reality which it

‘uncovers’. A goal of better or ‘optimal’ health requires a potentially risky future to be

‘civilised’, unknown dangers to be transformed into known risks, and the tested

individual to be symbolically transformed from a ‘dangerous’ subject ignorant of her

genotypic ‘past’ into a risk-aware subject attuned to the contours of her risky future

The transition between knowledge and action is generally represented

(particularly by deCODEme and Navigenics) as seamless: rational and health-conscious

individuals, presented with accurate maps of their potential futures, are able to translate

these easily into planning and action:

‘[o]nce you are aware of those conditions, taking preventative measures is the next

logical step’ (deCODEme, ‘About Genetics – Prediction’, 20/05/10 – 08/06/11)

‘empowering individuals with genetic information catalyzes new behaviours’

(Navigenics, Press Release, 23/11/10).

Sometimes, however, the transition from knowledge to action is represented as

involving a disruptive vision of the future caused by the ‘unique experience’(Pathway.com, ‘Terms of Service’, 12/06/09) of finding out one’s genetic risk, in which

a life-changing revelation is involved. Commenting on the impact of being presented

with a risk profile, one deCODEme customer is reported as saying ‘my genetic makeupisn’t going to change but, through this experience, I have changed’ (deCODEme, ‘Anna



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Peterson’, 20/05/10 – 07/06/11). Here, a temporal relation between the past, present and

future distinct from that inscribed in the ‘road map’ metaphor is constructed.

In these instances, present knowledge of the future is not just depicted as

predictive but also as representing a distinct category of knowledge, i.e. that of

prophecy or divination. In the revelation of one’s genomic past, a future present

simultaneously breaks into the here and now (Adam & Groves, 2007, p. 5). Thesymbolic importance of such divinatory disclosures is that they convey the urgency with

which individuals in the post-genomic age are summoned to take responsibility for

searching out and ‘avoiding’ the fixed future presents that their genome has ‘laid up’ for

them: ‘If we don’t know what our future problems might be how can we avoid them?It’s like saying, I’m just going to wait until a car runs me over’ (deCODEme, ‘Prevent

and Avoid Health Problems’, 21/11/08-15/06/2011).Both sets of imagery – road-maps and revelations – exhibit genomic fetishism,

at the same time as marking out a territory distinct from determinism. The ‘pastness’ of genomic knowledge lies in its reference to – ‘in the last instance’ – a fixed, ‘inner’

reality. At the same time, the future is represented as fixed, in the specific sense that, by

employing imagery of maps and revelations, companies represent the results of thecomplex processes by which PGI is interpreted as fixed points on which ‘de-risking’

strategies can be based. At this point, PGST companies manifest the kind of reification

of risk that, as I noted earlier, is characteristic of risk thinking as such.

According to Marx, the effect of commodity fetishism is to present the

commodity and its relations with other commodities as naturalised (Marx, 1990, p.

165), creating a perspective illusion which obscures the social relations through which

commodities are produced as such in the first place. Kaushik Sunder Rajan suggests that

the relations of scientific production suffer the same fate in genomic fetishism as the

social relations of material production within commodity fetishism. On the one hand,GWAS studies tend to be funded by charities and state research agencies on a not-for-

profit basis, and are then available for PGST firms to exploit commercially. On theother, instead of recognizing that genomic knowledge is ‘the result of contingent,

fragmentary, contested and constantly revised processes’ (Rajan, 2006, p. 145), the

results of susceptibility testing tend to be represented as definitive and authoritative. For

example, the risk profiles PGST companies provide are based on interpretations of

GWAS studies, the significance of which are often by no means settled among

geneticists. GWAS research has, historically, been carried out in particular ethnic and

geographic populations. As the scientific corpus on which testing draws has new studies

added to it, the meaning of particular genetic associations may change as evidence

grows for some associations, and diminishes for others. In practical terms, this means

that risk profiles may change, even sometimes resulting in reversal of risk classifications from high to low, or vice versa (Bunnik, et al., 2011, p. 7). Further, the

divergences between risk scores provided by different companies for the same conditionhave been widely noted (Fleming, 2008; Ng, Murray, Levy, & Venter, 2009). Finally,

the sufficiency for risk profiling of GWAS studies, which only examine a pre-selectedset of sites on the genome, is placed in question by the prospect of cheapening whole-

genome sequencing.Yet the language of maps and revelatory disclosures depicts the future

knowledge with which the individual testee is provided as anchored to a fixed point.

While maps and revelations imply distinct temporal logics, as we have seen, they share

this fetishistic perspective on risk. As we saw previously, this kind of view characterizes

risk thinking more widely: it tends to reify risks as real objects of scientificinvestigation, forming part of a stationary future. Genomic fetishism extends this



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perspective to encompass the genome, via the discourse of susceptibility risk. The

rhetoric employed by companies often elides (Roberts & Throsby, 2008) the difference

between, on the one hand, the fixity of one’s genetic inheritance, and on the other, the

ongoing project of determining its significance, in which shifting uncertainties are

implicated. If one’s genome is ‘in the last instance’ the sole fixed determinant of risk,

then the production and consumption of genomic knowledge tends to be represented asmapping or revealing its contours (‘discovering your genome’), rather than the

production and interpretation of a provisional and contingent quantification of

uncertainty.

At the same time, low-key conflicts between fetishistic and anti-fetishisticimagery also play out on company websites, just as essentialism uncomfortably

alongside anti-essentialism. As we have seen, the event of ‘discovering one’s genome’is generally represented in a declarative and categorical mode. While sometimes going

hand in hand with denials of determinism, this may imply that the ‘genes’ themselvesare speaking truth through risk profiles:

‘Her genes suggest she won’t have too much to worry about’ (deCODEme.com,‘Dorrit Mousaieff’, 20/05/10 – 0/06/11)

Nonetheless, recognition of the contingent and partial nature of knowledge of

susceptibility risks is built into companies’ subscription-based business models (andways of rating reliability of information, such as 23andMe’s star system for research

study results). At the same time, the justification for subscribing to research updates isgenerally framed positively – not as necessitated by the scientific uncertainties

surrounding current research, but required in order to access growing scientific

understanding of genetic associations. Each additional piece of research tends to be

framed as a new ‘discovery’ to add to previous ones, rather than a contingent

modification to earlier interpretations that may add to or subtract from their

significance, render them ambiguous, or even reverse them.

‘Your deCODEme results will not reside in a single static report, but in an ever

evolving information-rich and secure web account’ (deCODEme.com, ‘FAQs’,

12/07/09-20/05/10)

The fixity of the future addressed by PGI reports is affirmed in such representations:

genomic knowledge is presented as provisional only in the sense that there are still

inaccuracies or gaps which will inevitably be remedied or removed.

Representations which foreground more emphatically the contingent nature of

genomic research are also evident, however. These are typically linked to caveats

regarding the limitations of what genomic risk profiling can tell customers, and which

occur in less prominent parts of websites. These still tend to be phrased neutrally (‘the

science may change’) rather than ‘negatively’ (e.g. ‘uncertainty may grow rather than

diminish’).

‘some of the information you learn from 23andMe may change over time’

(23andMe.com, ‘Considerations’, 13/11/08-17/05/2011)

‘Over time, new studies are likely to be published that may change your risk

estimates.’ (Navigenics.com, ‘Policies’, 08/07/11)



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‘[...]future research may change our understanding of the relationship between

individual SNPs and risk for disease.’ (Pathway.com, ‘Terms of Service’,

12/06/09)

Some exceptions can be found, relatively prominently, within 23andMe’s website,

suggesting that ‘change’ may be more ambiguous. On the relatively prominent ‘CoreValues’ page, it is stated that ‘but science is constantly moving: two steps forward, one

step back, and often one step sideways’ (23andMe.com, ‘Core Values’, 13/11/08-

17/05/2011). Nonetheless, despite systematically distinguishing between established

and provisional research results (A. Gould, 2010), 23andMe tends to promote its

database of research studies as definitive, once a study is ‘established’ (23andMe.com,

‘For Scientists’, 13/11/08 – 17/05/11).

Overall, however, though companies avoid, for the most part, deterministic language,

risk profiles tend to be represented as providing a fixed reference point in the future

(whether present future or future present), an island of determinacy amid indeterminacy

generated by a black box of scientific apparatus and knowledge practices. Though thedetails of the map may change, the territory of risk it maps will not. Susceptibility risk

is thus constructed as a ‘naturalised’ fact which demands a strategic response, much as,

in other contexts where risk thinking is applied, forecasts of profits, road congestion, or

energy demand do (cf. Wynne, 1982, p. 52). This affirms a central assumption behindrisk thinking, that ‘the contingent can only temporarily elude conquest’ (Crawford,

2004, p. 516).

Genomic Fetishism and ‘Somatic Ethics’

Despite the emphasis by companies on PGI as ‘empowering’, acknowledgements of the

limitations of PGST’s knowledge base also – if more implicitly – position the ideal

consumer addressed by company publicity as a more passive subject ‘in waiting’. There

is a general recognition that PGST testing is, as yet, generally of little clinical value, and

that the personal utility of testing is largely unexamined (Foster, Mulvihill, & Sharp,

2009). Still, the value of PGST is represented by companies as more than a

pragmatically useful tool for avoiding health risk – indeed, seeking access to one’s PGIis seen as a symbolic marker of responsible behaviour.

You can make sure that whoever is going to be in charge of you when you’re older

can be prepared, both financially and knowing what signs to look out for. You can

help ease their burden. Let’s be responsible adults.’(deCODEme.com, ‘Prevent and

Avoid Health Problems’ 20/05/10-07/06/11)

This normative ideal of individual responsibility is also articulated together with thegoal of maximizing or optimizing ‘healthiness’:

‘[...] those who initially choose to take the Navigenics Health Compass test will be

those who are looking to maximize their health and wellness and focus their

healthcare needs.’ (Lei, 2008)

‘We help you partner with your physician for earlier detection and better

treatments, and ultimately, optimum wellness.’ (Navigenics.com, ‘Next Steps’,

07/06/11)



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Simply de-risking one’s lifestyle in a piecemeal fashion is not enough: one’s

responsibility to avoid burdening others with unexpected and unprepared-for costs is

best fulfilled by taking ‘wellness’ as the telos of one’s actions. The value of one’s

genetic inheritance is therefore takes two forms, one ethical and one pragmatic. On the

one hand, it is a fixed object, constitutive of who one is, that cannot be transformed,

only cared for (Murray, 2007) by seeking wellness. On the other, it is a tool with hidden but exploitable instrumental value: ‘Like a bank filled with money, your genome is full

of value’ (Cline, 2009).

I noted earlier that, for the subject of susceptibility discourses, being

responsible is a condition that remains always to be achieved. The consequentialist logicof moral choice set out by companies presents the justification of choices made now as

connected to metaphors of optimising one’s entrepreneurial investments in the presentand of using ‘profits’ to offset future costs. Yet the possibility of such ‘payoffs’ in the

shape of the attainment and maintenance of an equilibrium state of ‘healthiness’remains contingent on the resolution of the uncertainties which surround the advance of

PGST’s regime of truth, and for which the individual waits. Whether the choice to buy

this test rather than that one will have been a genuinely responsible one always remainsto be seen.

Conclusions

Despite generally avoiding strong genetic determinism in how they constructs the

‘ideal’ subject of personal genomics, PGST companies, I have argued, do not avoid

genomic fetishism. On websites, in press releases, and in other documents theyrepresent the unknowns surrounding the clinical validity and utility of PGST as residual

pools of uncertainty that will gradually and inevitably be cleared up. The wayscompanies represent the value of their services obscures differences between the

genome ‘in itself’ and the genome ‘for us’, that is, the genome as expressed through

genomic assays and risk profiles. As a result, the fixity and stability attributed to the

former also becomes associated with the contingent and revisable results of complex

processes of scientific knowledge-production, resulting in a fetishism of genomic risk

that mirrors broader tendencies in risk thinking.

The uncertainties which are obscured by genomic fetishism, are considerable.

They relate, first, to how the contribution of particular SNPs to risk is assessed; second,

to hopes for the ‘personalization’ of healthcare which PGST is assumed to support; and

third, to the need for a ‘full accounting’ of risk which goes beyond an emphasis on

genetic susceptibility if personalization are to be realized. These uncertainties, taken

together, problematize the attempts by PGST companies to articulate a somatic ethicsaround genetic susceptibility.

The relative prominence given by PGST companies to the contribution of environmental risk factors to disease risk stands in sharp contrast to the almost total

absence of comment regarding persistent uncertainties rooted in genomic research itself

(e.g. common or rare variants as the appropriate focus for research, the effect of

interactions between SNPs other than those currently studied on disease risk, and so on).

As Ng and colleagues (2009) point out, such uncertainties are deprecated by companies,

in favour of discussions of the plasticity of environmental risk contrasted with the fixity

of genetic risk.

With respect to personalization, personal genomics is represented by all

companies in our sample as the key to realizing the massive social benefits of a personalized medicine future in which ‘molecular precision’ in assessing the risk



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conferred by a particular genotype is achieved. The provision of a risk report is

sometimes itself equated to ‘personalized medicine’, with deCODEme’s website

providing particularly emphatic examples. PGI is presented as more ‘personal’ and

precise a measure of risk than phenotypical information, such as cholesterol scores,

blood pressure, and family history:

‘So when you chase [phenotype-related risk] numbers, you’re forced to treat a

patient as the average of a huge study population.’ (deCODEme.com, ‘Prevent

Heart Attack, Stroke, Diabetes’, 20/05/10-07/06/11)

‘[...]you can’t get any more personal than knowing a patient’s genetic makeup’

(deCODEme.com, ‘Prevent Heart Attack, Stroke, Diabetes’, 20/05/10-07/06/11)

As we saw previously, commentators on a previous generation of susceptibility tests for

high-penetrance disease genes noted that risk numbers based on population-level datawere often misrepresented as ‘exact, certain and tailored to the individual’ (Press et al.

2000). The ecological fallacy may apply to PGST too. The meaning of the information provided by GWAS-based susceptibility testing constitutes more information about risk

for the particular individual is equally hard to establish.

Occasionally, companies acknowledge this, by noting the difference between a

risk profile and a comprehensive individual diagnosis of risk. A good example is

provided by 23andMe, which (unusually, on its prominent FAQs page) answers the

question ‘why is a risk report not a diagnosis’ by pointing out that ‘in order to make a

diagnosis, your doctor considers not only your genetic information, but also your

particular personal and family history and your physical condition, as well as any

symptoms you are experiencing’ (13/11/08 – 17/05/11).

Personalization here (in the form of making a diagnosis as opposed to a general

statement of risk probabilities) is acknowledged to require more than personalgenomics. What is still left out here, however – which companies generally do notdiscuss at all – is the idea that, to realize hopes regarding personalized medicine would

require a ‘full accounting’ of risk, including environmental, epigenetic and phenotypicalfactors, in order to provide a genuinely ‘personalised’ assessment of health risks

(SACGHS, p. 24). This will require a huge, coordinated and lengthy multisided research

effort to build bridges between different disciplines (Feero W, 2008) to build and make

sense of the huge and multiple datasets required. In addition, this would take the scope

of somatic ethics beyond a focus on the individual and his or her personal responsibility

for their genomic inheritance.

The fetishism of genomic risk in PGST discourse, and the forgetting of the

conditions of scientific production, reflects a wider political economy of genomic risk (Sunder Rajan 2006), in which risk as a saleable commodity requires quantitative

precision, even if this turns out – in the face of more complex uncertainties – to be

largely specious precision. It also reflects tensions within risk thinking as a mode of

governance, which mean that the precision promised by risk is constantly on the point

of being undermined by uncertainties that have been deprecated as part of a wider

politics of uncertainty, of which risk thinking is only part.

The ‘ideal subject’ constructed by companies is part of this wider political

economy, posited through genomic fetishism as empowered but at the same time as a

passive consumer. How individuals who have taken PGS tests experience andunderstand their own subjectivity is an open-ended question. However, empirical

quantitative and qualitative research to date suggests that susceptibility risk informationdoes not obviously translate into an increased sense of agency and responsibility.



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Studies appear to have found that, at most, samples are split down the middle on

whether the information has been beneficial in motivating changes in health behaviours

(Bloss, Darst, Topol, & Schork, 2011, p. R135; McGowan, Fishman, & Lambrixa,

2010). In this paper, I have suggested that PGST companies’ attempts to articulate what

a somatic ethics for personal genomics might look like reflect wider ethical and political

tensions within contemporary societies arising from the relationship between their present and future. To what extent users of PGST services find these tensions relevant,

and to what extent they experiment with novel practices as a way of building PGST risk

profiles into a somatic ethics of their own (cf. English-Lueck, 2010) in the face of wider

and deeper uncertainties are topics for additional research suggested by our conclusions.

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Road-maps and Revelations: on the somatic ethics of genetic susceptibility

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