An introduction to predictive diagnostic epistemology and a mandatory yet impossible ‘biological normality’
By Owen Dempsey
It is an age old commonplace that we live in an age of anxiety, consumerism and inequalities. But it is a more recent commonplace to argue for Patient Power : that a responsible citizen should take more responsibility for the measuring and budgeting of her own health. Perhaps, if you are wealthy enough you should get a fitness app, apply for a personal health budget, buy shares in molecular diagnostics, purchase your blood tests, PET scan and your genetic profile for just 1000$, and dutifully go to your family doctor for a ‘health check’. But why?
What isn’t so common is to question the basis of these activities, to ask what it is that we are aspiring to here. Is this aspiration something called ‘health’ or ‘normality’: the so-called normal healthy state that we should aspire to be? Our contemporary apparently obvious idea of the ‘normal is in fact steeped in 19th Century concepts of the pathological as just a variation of normal physiology. But in everyday life this has led to a contradiction since if they are qualitatively the same how can we tell them apart? I am suggesting here that this contradiction underpins Evidence Based Medicine’s major problematic: the identification of and quantification of biological difference to identify the future risk of biological precarity.
George Canguilhem’s harsh take on the reality of health as an inevitably perpetually declining power, from the start, to resist danger, is defined later on. But we know the markets don’t want to hear such negative attitudes, after all cures make money.
Much political rhetoric attempts to seduce us with the concept of aspiration, e.g. the freedom to buy a house, to have your own personal health budget, and so on. This rhetoric is that of a neoliberal politics, where the freedom for the individual to aspire to the greatest heights is paramount, apparently free of government interference, but with the support of a free competitive market. This freedom is ‘shaped’ (a phrase used by Hayek, a reactionary economist and advisor to Thatcher’s government in the UK in the 1980s), but it is an illusion of control. I would argue (after Jacques Lacan the psychoanalyst ) that instead of freedom, the individual is being set adrift in a fragmenting-society of apparent limitless possibilities and potential for growth. This endangered individual suffers a subjective psychic breakdown, loses anything remotely like aspiration and instead experiences a sado-masochistic servitude, a form of masochistic slavery to the sadistic market.
The idea here is to look at what the idea ‘normal’ signifies. Briefly, we will find to our surprise that it is a slippery complex and ideologically powerful customer! For Galton it was a mediocre average (this leads to eugenic overtones eventually). For Quetelian (and the conservative Durkheim) the normal was an arithmetic mean, and something to which we should aim to be restored, a kind of baseline. For Canguilhem, the French philosopher and historian of science (they amount to the same thing in France) the medical ‘normal’ is an Aristotelian virtue, and in terms of goodness or excellence it is an extreme perfect ideal to be aspired to. In theory this perfect but impossible ideal stems from Broussais’s principle (another Frenchman, this time a physiologist) who in the 1800s maintained that anything pathological is merely demonstrating a qualitative deviation (excess or deficiency) from something that is normal. This was a principle taken up by the infamous positivist August Comte who applied Broussais’s principle to the social and so felt able to define moral deviancy. The two most difficult and subtle points here, hard to grasp, are that a) because pathological tissue is qualitatively the same as the ‘normal’ it is then impossible to derive a quantitative measure to show that the pathological and the normal are actually different (and thereby to identify and define a ‘normal’); and b) by measuring difference we invisibly imply that there is a norm, and it is one that we should be aspiring to.
Here is an attempt at a hypothetical example, suppose that we classified means of transport perhaps in terms of engine size or number of wheels, and we discovered that large engine sizes or numbers of wheels were associated with more accidents. We could say that for example 16 wheeled vehicles were definitely dangerous and should be banned, but at what point, how many wheels, would you say that a means of transport was ‘normal’ was OK and did not require any special measures. There is no measurable (quantitative) number of wheels that enables us to separate one class of vehicles from another in terms of their qualitative form. All means of transport no matter how many wheels are risky, but counting wheels signals a desire to eradicate risk. You can imagine that if there is profit in persuading people that fewer (or smaller, or with fewer bearings, or titanium bearings, or harder/softer rubber etc etc) wheels might be safer, always just a little bit safer, then with a bit of effort and imagination you may start to get a feel for the economic market power of molecular diagnostics. Your body has a kind of wheel (genome) that embodies the risk of transport: the biological precarity of life. There is no lower limit to our ability to dissect this wheel (genome) and quantify your risk and the market and science will invent tools to construct these differences to sell for profit. I think I’ve stretched this metaphor perhaps too far but I hope it might help.
So by extension to the life-world we would say there is no measurable biological characteristic that enables us to separate the pathological tissue from the normal. And yet each of us is under pressure to consume and submit to screening diagnostic tests (a form of wheel counting, that make profits for doctors and business), precisely to measure differences that confirm our pathological abnormality, our risks of future illness, and by doing this it presupposes that there is a ‘normal state’ and it demands that we must aspire to it. Thus biological normality is both mandatory and impossible.
Foucault in his ‘Birth of Biopolitics’ and ‘History of Sexuality” describes this situation arising because of the ‘will to know’, a more or less political regulation of a market, a will to measure and normalise a population’s morals and health, identify deviancy etc, a classification of diseases based on organ ‘deviancy’ or pathology, and following Husserl in his ‘Crisis of the European Sciences’ a philosophy of knowledge that has mathematised and lost its original connection with nature.
The main sources here are Husserl’s phenomenology, and Canguilhem’s ‘The Normal and the Pathological’, Foucault and with a supporting role for Ian Hacking’s ‘The Taming of Chance’:
Fascinatingly Edmund Husserl, a Moravian mathematician turned phenomenologist, argued in the 1930s that Galileo had developed mathematic models to try to explain nature and that this led to the development of ideal perfect geometrical concepts, all obeying mathematical formulae. This in turn developed into a deeply held conviction that nature must obey mathematical formulae, and that nature in its reality somehow obeys these ideal perfect geometrical constructs. The original meaning of geometry as only a useful model representation of nature was forgotten. Husserl’s key point is that the original meaning of the concepts which is the attempt to provide a coherent framework for the mass of observed data ( a method for generating knowledge called induction), via human perception of course, has been forgotten and instead the maths and geometry has become the founding basis of what we believe nature to actually be. I think that in an identical fashion current scientific positivism and what we can call classical Evidence Based Medicine (EBM) has been based on a forgotten method of induction: the collection of large amounts of data followed by an attempt to mathematically classifiy. What is also forgotten is that our sense of these classifications representing reality faithfully, the ‘ideal’ as in abstract constructions of pathological entities and by implication the normal biological state is also the result of human sense constructions. So Husserl, put simply, sought to reframe knowledge by basing it on subjective perception alone not theoretical mathematically based theory.
Scientific positivism presupposes a ‘normal’ that is signified by August Comte’s aspiration for an ‘ideal’ or perfection, an extreme Aristotelian ‘virtue’, in terms of goodness and excellence. Comte’s appropriation of the ‘normal’ for social means enabled the ‘normal’ to be simultaneously used as an arithmetic mean, as well as a state we have ‘fallen’ from, and also ‘aspire’ to, and a symbol of acceptable, non-criminal, morally correct human nature/behavior).
So, for example, in social terms obesity, Heroin addiction, alcohol dependency, refusing to vaccinate your children, refusing cancer screening and health ‘checks’, are not ‘normal’ which is a signifier presupposed by and resulting from the diagnosis of any ‘pathological state’ and signifies at least three things simultaneously as a ‘shape-shifter’.
The abstract idea of Pathology presupposes three things :
- a arithmetic mean of a distribution of a measureable biometric, a mean defined as ‘normal’
- a ‘normal’ (right, correct, good) baseline state to which we must be restored and
- a demand to aspire to a fantasised ideal extreme virtue of a state of normality that is risk and precarity-free.
So the ‘normal’ can be and is simultaneously: a desirable average, a state to which we must be restored, and an ideal perfect state to aspire to.
This ‘sliding’ signification is part of what gives ‘normal’ and its significations such ideological potency. So observers can say: ‘but of course there is such as thing as a ‘normal’ for a population, its just the mean, so your talk of an ‘impossible normal’ doesn’t make sense.’
The detection of future risk of pathology, in terms of cancer as an example here, results in measurements which are:
- put in terms of a human construct: the language of risk (‘low risk’, ‘high risk’ etc) that functions within societal contexts of discourse (e.g. the market, screening programmes or consultations or NICE guidelines), and
- a symbolisation of risk that concerns another human construct: a pathology called ‘cancer’ that certainly causes suffering but is also certainly complex, unpredictable in terms of outcomes and responses to treatment or lack of treatment, and that as a human perception has a limit, a point where cancer becomes non-cancer, and I believe this is a limit that is not objectively measureable or at least has not been objectively measured as yet; and
- a symbolisation for the necessary treatment of a ‘risk’ of ‘cancer’, (so we have a third level of meaning-fulfilling conceptualization here, where each level only compounds the rhetorical effects and increases the subjectivity of the meaning fulfilled).
This also represents an unknown for an individual in four senses:
- the individual won’t behave according to the population norm since this is an ‘ideal object’ too, and
- the measurement of harms versus benefits is statistically error prone too, and always excludes precision for any individual
- following Husserl, harm and benefits are part of a whole life that is not totally measureable
- the nature of the aspirational ‘ideal’ normal state –
So, as a schematic simplification, and using the example of cancer risk, the four layered question might be, for an individual,
- to what extent can your individual risk be measured for developing
- something ‘ideal’ (abstract) called ‘cancer’ that may or may not be harmful, and
- that may or may not benefit from medical treatment
- and that presupposes a mandatory but impossible risk free biological normality?
This is the four layered question forced to emerge by the predictive screening test for e.g. a cancer development or recurrence at some time in the future.
The proposed solution for healthcare, the object of preventive medicine, is the demand for the impossible identification of ‘the’ risk that determines whether medical intervention is worthwhile for an individual. Instead of being a solution I am suggesting that this is EBM’s problematic. The fantasy (imaginary possibility of cure) veils this impossibility (symbolic precise knowledge of risk) that emerges as the Real (e.g. revealed by the inconsistencies in the naming practices of borderline diagnoses in breast cancer screening, such as: indolent tumours, to premalignant lesions, to ductal carcinoma in situ).
The fantasy also veils the impossibility of ever being able to eradicate something, e.g. a pathology like cancer, a pathology that is a precondition for the possibility of diagnosis, since diagnosis is based upon the necessary presupposition of an always already present pathology.
The fantasy (as fantasy always does according to Zizek) also contains the obstacle to its realization in terms of a Law, a Rule, which for Society is a Rule concerning the need to find cancer early in order to cure it. In other words, even if a risk could be ascertained as valid knowledge, its ‘truth’ would be undermined by the imperative to investigate in order to diagnose cancer as early as possible to the point where cancer must be diagnosed where nothing like cancer exists. In other words for cancer to be diagnosed as early as possible there must be no lower limit to the risk at which investigation is required or to the tissue appearance that may be ‘cancer’. The body under a neoliberal or anarcho-radical-liberal governmentality (politically and economically deregulated but individually highly regulated) must always be already biologically precarious, or indeed cancerous.
You might argue that all this talk of aspiration only applies to a small wealthier section of society who can afford to worry about their future biological risk or precarity. But there are broader societal implications. Healthcare costs are in danger of becoming increasingly dominated by a neoliberalised ‘diagnostic moment or test’ led health economy aided and abetted by the classical EBM community, driven by increasing demands for screening and health checks for the ‘healthy’. This may well a) reduce the money available to provide care for those who are ill, disproportionately represented by the poorest in society, and b) drive down the opportunities for health for the poorest, those with the greatest need, increasing health was well as social inequalities.
I like the quote from Canguilhem on health:
“The life of the individual is, from the start, a reduction in the power of life. Because health is not a constant value, but the a priori of the power to overcome dangerous situations, this power is one which erodes through the mastering of successive dangers. Health after cure is not the same as before illness. A lucid awareness that cure is not return can help the patient’s quest for a state of least possible renunciation, by freeing him or her from a fixation on the earlier state.”
(Une pedagogie de la guerison est-elle possible 1978 17, 13-26)
You don’t aspire to be normal. Instead it is a concept, the ‘normal’ that aspires to consume you!!