The USA audience may be even more smitten by the assumption of sovereign individualism than the UK. The scientific-technological relationship to consumerism and individual choice touches on matters of life and death when it comes to asymptomatic medical diagnostic screening programmes such as, most notably, the breast cancer screening programmes. These have been challenged on evidential scientific grounds by such reputable figures as Michael Baum who has called for such screening to be stopped (ref). Perhaps some may be surprised that such challenges have met with such little response – indeed the programmes are being extended to wider age groups rather than reduced. One of the foundations of medical ethics is the idea of freedom of choice for the individual. And rightly so. And a lot of work (including by me in the past) has gone into trying to maximize patient autonomy over decision making by ensuring information given is as user friendly and unbiased as possible. And rightly so.
However, and this is the crux. The premise of these efforts is that proactively offering the screening intervention is a good thing. UK government sponsored ‘Independent’ reviews have concluded, because a) they show that screening reduces specific cancer deaths; and b) that the harms, including overdiagnosis, are known about and quantifiable and therefore can be communicated to the public, that (breast cancer) screening is a good thing. And in general this has been the thinking for most non-targeted asymptomatic anticipatory diagnostic screening.
Just here I will make a small diversion to consider over diagnosis, as an unusual type of harm that perversely is used to promote screening, and yet confuses many, and cannot be adequately valued by many individuals for the harm that it is.
Overdiagnosis / this concept deserves some attention.
First, because knowledge and quantification of overdiagnosis is, somewhat counter-intuitively, used as justification for continuing with proactive screening programmes. (This is on the ground that as long as the public are told ‘the facts’ then people will be free and able to make their own kind up about whether to accept ‘invitations’ (read as compelling demands) to be screened). Of course, life is more complicated than that, and over-diagnosis certainly is. There are two things to know about the concept of over-diagnosis: the first is that it is due to the (necessary) failure of technology to identify a clear distinct borderline between bodily functions/tissues that are ‘normal’ – in the sense that the tissue will not become pathological (literally, cause suffering) and ‘abnormal’ – tissue that is predicative of, (assures with certainty) a symptomatic pathological future. This is because at the borderline the futures of these visually ambiguous and borderline bodily functions and tissues are under the unpredictable whim of random molecular processes. What looks to have carcinogenic potential is just as likely to have an asymptomatic future. This means that asymptomatic screening must always run into misdiagnosis at the frontier between the normal and the pathological. This failure leads to diagnoses of future symptomatic cancer that are simply wrong, a mis-diagnosis. This is overdiagnosis and leads to over and unnecessary treatment causing net harm to health.
Second, note that overdiagnosis as a phenomenon can only be inferred from the comparison of cancer diagnoses and symptomatic cancer outcomes between screened and non screened groups. In this sense whilst it is real enough it is also as far as any personal experience is concerned, an abstract concept. This is how public health policy makers can get away with not valuing the scale of over-diagnosis in calculations considering whether screening is a good thing (because no individual can stand up and say “Look, I’ve been over diagnosed and had an unnecessary mastectomy!”). This renders over-diagnosis a strange non-valuable, in a healthcare sense, (though profitable) harm as far as the market and its tool: pragmatic public health policy, is concerned. This, in turn, also means that for many (not all) individuals over diagnosis is a confusing concept that cannot adequately be taken into account when making decisions. Of course, for some the knowledge of the existence of overdiagnosis can be sufficient to lead to a refusal to be screened, or anger if insufficient information on over-diagnosis was made available at the time screening was being ‘offered’. This is a digression into the idea of over-diagnosis, that isn’t necessarily a deal-breaker as far as screening is concerned, but in my view adds to the reasons why asymptomatic non-targeted screening should be stopped. The main reason, as elaborated below, being its fundamentally and effectively anti-democratic and coercive nature as a fear inciting commodity in an uncaring free market dominated by capitalism’s demands for new and surplus profits.
So, now, bearing in mind the phenomenon of over-diagnosis as an especially elusive and malevolent kind of harm, we can return to the key questions for screening programmes.
First, what if there was genuine uncertainty about the overall benefits of such screening programmes, in terms of their ability to reduce overall all-cause mortality. After all, Baum has convincingly argued that both plausibly and evidentially, screening and treatment both can cause harm, including deaths, in their own right, and this is why overall mortality reduction due to cancer screening has not been demonstrated.
Second, what if the first principle of care should be to maximize patient autonomy over and above the targeted reduction in specific cancer deaths?
And, third, what if it could be demonstrated that even the proactive offer of such screening fatally undermines patient autonomy?
My argument now follows and combines the lines of thought of both Karl Marx and Jacques Lacan the French psychoanalyst. The key issue to keep an eye on here is the implication for individual freedom of choice.
For Marx, the capitalist system of waged employment to generate surplus value (profits) for business owners, manages to mystify and make invisible the lack of freedom for the worker (who MUST work to live), whose labour is effectively forced from him, stolen and used to generate value of our production that exceeds the cost of wages. This mystification of the exploitation of labour makes it seem as if profits can generated as if requiring virtually no effort at all on the part of the business owners, other than to employ people. Clearly a simple view but essentially true nonetheless.
This gets even more interesting when we introduce a psychoanalytic perspective. Following Lacan, then, who followed Freud: three key things: first, our individual sense of identity, our Ego, is formed within and constrained by cultural norms; second, this sense of identity is always only ever partial, creating a desire to either question, or please our cultural masters; and third, the capitalist system has profoundly affected the cultural Master and its norms – by creating a capitalist/consumerist culture capitalism has largely replaced culturally generated norms with the idea of surplus value itself. This has disrupted the sense of identity held in common by the masses so that we are predominantly driven by the desire for more, always expressly hungry for more and always more or less dissatisfied with what we have. We become the puppets of the system, of the market and advertisers who in turn are also controlled, and turned into mechanical tools of the system which demands competition, winners and losers, and ignores human suffering. This system also exploits the imaginary certainties of the mechanical utopian philosophies of science and the subject of science who is taken to be fully self aware, to have a whole unitary unassailable identity as a sovereign individual in control of his own decision-making and destiny.
The combination of a) the objectivisation of the human into a mechanism to exploit human and natural labour for the bottomless pit of human desire for more; b) the psychologisation of the human as a unitary autonomous atomic sovereign individual by neuron and psychological sciences; and c) the assumption that science can know the truth about nature including human ‘nature’ and the body’s future, all combine to incite the production of a totalitarian perverse psyche over-excited by the fantasy of being in control, of being the one to win, to own, to beat and to conquer the other losers, foreigners, competition, victims. This is brutally xenophobic and exploited by populist nationalist elitist and racist politics.
Unfortunately medical practice has been profoundly damaged by these processes. The result is that what seems like a philanthropic well-meaning offer to test the asymptomatic for signs of anticipated future disease and all that goes with that, has become a tool of capitalist, nationalist and apparently pragmatic business philosophies. But at the time has involved the oppressive exploitation of the consumerist desires and guilt of the masses using fear of future disease, the promises of more (surplus) life, of more (surplus) time with loved ones and so on.
Simply put then, in the end, given the equipoise over therapeutic benefit (let alone all-cause mortality reduction), the unavoidable and profound bias invoked by offers to screen, the in-sensible invisible nature of over-diagnosis, and the primacy of democratizing decision making to maximize autonomy; then the most ‘ethical’ way forward (that does the least harm) is to stop offering non-targeted asymptomatic anticipatory diagnostic screening. There should be a moratorium; debate over how or whether to target screening to high risk groups and whether it is medically unacceptably unethical to agree to screen somebody not at increased risk of disease.
This is clearly an authoritarian stance, but a lesser of two evils, as it is, I claim, less authoritarian than exposing the masses to the fear induced exploitative provocation of proactive asymptomatic anticipatory diagnostic screening programmes.
The account above is an intervention that creates a new and disruptive discourse around asymptomatic diagnostic screening. It is a critique from the perspective on the human whose essence is one of a lack of a complete sense of individual identity constructed within normative cultural constraints and has taken three factors into account: a) effective truth, exercised by b) political power, to create c) an ethos or ethics of pragmatic action in the name of targets productive of surplus-value. It does not claim to be promoting a good of some kind, but rather to be promoting a lesser evil.
The context for the intervention is the culture of deregulated capitalism. The ethics discussed apply to an intervention affecting individual rather than social or communitarian health outcomes, for example screening for things like cancers, hypertension, coronary artery disease risk, diabetes, depression etc. So, one caveat is that my argument does not extend to asymptomatic diagnostic screening for infectious conditions – such as Covid. This is because in this case an argument can be made for encouraging individual sacrifice (for example, in terms of freedom of movement and socialization) for the sake of, or in order to protect, vulnerable members of the community.