As depicted in Chapter 1, a key component of Enlightenment visions of progress was the notion of progressive knowledge. What has been called “strong progress,” which is the belief in sustained, linear advances in the human condition, was inextricably bound up with a particular kind of epistemic progress, namely progress in the knowledge of the natural world dating back to the Scientific Revolution.Footnote 1 In the course of the twentieth century, persistent trends questioning the progressive and cumulative nature of knowledge – including scientific and medical knowledge – were themselves linked with undermining the status of the idea of progress. In the paper “Was ist Wissensgeschichte? (What Is the History of Knowledge?),” historian Philipp Sarasin outlines the rise of approaches that conceive of knowledge as always circulating back and forth between different social spheres, institutions, and media, as well as between scientists and the so-called public.Footnote 2 Knowledge, in this view, is not fixed and cumulative but rather unstable, connected to power, contingent on highly variable conceptual presuppositions, and always has the potential to dissolve again.
In this chapter, I monitor the status of the medical example for proponents of new approaches to scientific knowledge and progress, as well as for the strong reactions it entailed.Footnote 3 Throughout, my aim is to show the implications for medical progress of larger debates about the progress of knowledge. Postmodernism, for example, forcefully questioned positivistic attachments to progress and presented the idea of progress as a way of formulating a fundamental human need but one without a foundation in reality.Footnote 4 Medicine, for this collection of theories, was a powerful example demonstrating that there is no such thing as knowledge that continually approaches the truth, that even the body is historical, and that knowledge is always a tool of the powerful. Medical historians too wrote about problems associated with the belief in the improvement of medical knowledge and therapies.Footnote 5 From the medical side, some respondents were adamant that scientific knowledge about the body is rigorous and objective and that medicine could remain uniquely immune to the uncertainties inherent in relativistic accounts of knowledge. In what follows, I show how prominent representatives of the view that medical knowledge can improve are not immune from the epistemological critiques of the progress of knowledge developed in the past half-century, as well as highlight how an excessive focus on biomedical knowledge gains neglects other, important dimensions of medical progress. Taken together, these attenuate strong claims for progress in medicine based on progress in science.
2.1 The Importance of (Biomedical) Scientific Knowledge after War
I mentioned earlier the role of nuclear weapons in bringing the dilemmas of progress into sharp relief. But coexisting with the fear of their potentially devastating consequences was the awareness that World War II had been won precisely thanks to the scientific research program behind their creation. In the last months of the war, American President Franklin D. Roosevelt wrote to his advisor and Director of the Office of Scientific Research and Development, Vannevar Bush, asking how the same vision and boldness employed during the war could be during peacetime and, in particular, what could be done with particular reference to “the war of science against disease.”Footnote 6 The response was Bush’s report Science, The Endless Frontier (July 1945), which began with the statement that “progress in the war against disease depends upon a flow of new scientific knowledge.” Bush called for increased government funding to science, identified medical progress with scientific progress, and positioned it as a foremost political concern, linked to national military security and public interest.Footnote 7
This particular idea of progress in medicine resonated widely in North America at the time and was bound up with the sense of victory and new hegemony of the post-war period. In the political context of the Cold War, the continued advancement of science was perceived as both practically and ideologically necessary for maintaining the international status of Western powers and repackaged as essential for Western self-understanding and values. In the article “Science on the March” (1952), MIT President Karl Taylor Compton linked the exigencies of war, the joy of discovery, and the pioneer mentality to explain the scientific and technological breakthroughs of the past decades.Footnote 8 The United States’ new identity as a nuclear power resurfaced in attempts to link the nation’s progress not to westward migration but rather to a potentially limitless technological “frontier.”Footnote 9 And if the darker sides of scientific knowledge had become more tangible, scientific progress continued to be associated with the desire to explore the unknown, rather than a heightened responsibility for the ethical implications of scientific discoveries. Testifying to a Congress committee on space exploration in 1958, rocket engineer Wernher von Braun observed that: “[p]eople are just curious […] What follows in the wake of their discoveries is something for the next generation to worry about.”Footnote 10
Post-war medicine had a special status in these discussions of scientific advance. Historian of medicine Roger Cooter describes a commonplace whereby medicine (along with the weapons industry) was considered the ultimate endorsement of Trotsky’s saying that war is the locomotive of history, the locomotive of progress.Footnote 11 If surgeons, in particular, received intensive training during the war, medical practices and technologies with their roots in the West spread to a number of countries, enhancing Western medicine’s sense of its global potential. In general, the period was characterized by widespread enthusiasm about the extent to which breakthroughs in scientific knowledge could successfully resolve health problems. New possibilities for medicine brought about thanks to the biological sciences included the synthetic production of penicillin, the development of chemotherapy, the first open heart surgery in 1952, better vaccines, and the chemical DDT and its insecticidal properties, for example for controlling malaria.Footnote 12 I do not want to list all the major medical events in the post-war period, but I do want to underline that they could be seen as embodying the promise of scientific medicine to guarantee human well-being. In reference to the era, physician Leon Eisenberg describes it as a time when “medicine as a source of human progress was an article of common faith.”Footnote 13 Crucially, medical progress could both serve an ambitious political agenda and perform a stabilizing function. It offered an important means of projecting international power but without the direct threat of leading to war between major powers. The pursuit of progress in medicine also promised that life was getting better without requiring any substantial internal societal reorganization – as per the Communist model – or globally. Sociologist Paul Starr writes that the valorization of medical science “epitomized the postwar vision of progress without conflict. All could agree about the value of medical progress, and [theoretically, at least] all could benefit from it.”Footnote 14
In this sociopolitical landscape, new knowledge of nuclear technologies sparked public imagination in terms of its potential for ambitious visions of better health and medicine. Future progress in medicine was a foundational part of how the “new world of tomorrow” was presented at the time.Footnote 15 Medicine was touted as the most promising field in the “atoms for peace” program that US President Dwight Eisenhower announced to the United Nations in 1953. The allure of harnessing the knowledge of the atomic world was associated with the resurgence of the idea of essentially limitless medical progress, as well as a potentially disease-free life. In an article that appeared in American Magazine in 1947, University of Chicago Chancellor Robert M. Hutchins suggested that the future atomic city “will have a central diagnostic laboratory, but only a small hospital, if any at all, for most human ailments will be cured as rapidly as they are diagnosed.”Footnote 16 The National Education Association produced publications for students describing atomic energy as that which ensures the unlikelihood “that you or any of your classmates will die prematurely of cancer or heart disease, or from any contagious diseases, or from any other human ills that afflict us now.”Footnote 17 Translated into medicine, the sense of breakthrough associated with the atomic era provides a powerful illustration of how an idea of progress emerges from the interaction between the scientific knowledge of a given time and concomitant political and societal interests.
Eventually, this early enthusiasm for atomic medicine faded. But the sense that it was specifically scientific knowledge that had the potential to improve human health to the point of defeating death and disease remained. A WHO pamphlet entitled Ten Years of Health Progress (1958) underlined the role of great scientific advances in the accelerated progress of the past years.Footnote 18 In the same year, WHO Director-General Marcolino G. Candau observed that:
if the great advances gained in science and technology are put at the service of all the people of the world, our children and their children will live in an age from which most of the diseases our grandparents and parents took for granted will be banished.Footnote 19
And he spoke of a new chapter in the history of medicine, replete with practices and experiences that until now belonged to the realms of fantasy and fiction.
Inevitably, overly optimistic claims about scientific knowledge as able to overcome disease and prolong life indefinitely were sharply criticized by contemporaries, and some of these critiques are similar to the ones canvassed in Chapter 1, including insufficient attention to all dimensions of health and overly simplistic ideas of progress. But the critique of medical progress as the scientific knowledge of body mechanisms occurred in the broader context of debates as to how and whether there could be progress in scientific knowledge at all. In the post-war decades, voices from within the medical establishment and the social sciences profoundly questioned whether scientific truth-seeking could translate into progress in medicine. Slightly later, these debates became incorporated into more general reflections as to what is meant by progress in knowledge. Relativistic positions took this challenge to its logical extreme, arguing that medical knowledge could not make progress because there is no such thing as progress in knowledge at all.
2.2 Challenges to Scientific Knowledge Progress from Medicine and the Social Sciences
Within the medical sciences, one prominent challenge to optimistic ideas of unlimited medical progress was related to insights into ecosystemic, holistic health. René Dubos (1901–1982), a microbiologist active in medical research, questioned the notion that medical progress could be reduced to the progress of laboratory sciences, a view that had heavily influenced ideas about progress in medicine since germ theory. Based on the insight that virulent pathogens are highly present in healthy individuals and yet rarely cause disease, he argued that the context is as important as any single microorganism – for example, a bacteria – in determining disease.Footnote 20 In doing so, he developed a nonlinear, multifaceted notion of disease that called for understanding the whole person in their physical, social, and psychological contexts.
A concern with the patient as a whole person, an interest in the possibility of multiple causes of disease, and a cautious approach to accepted doctrines of medical science: Dubos shared these traits with many other researchers, but he underscored the ramifications of his concerns for narratives of medical progress. He welcomed the dramatic decreases in mortality rates of the past century but thought that they were largely misattributed to the knowledge of specific disease causes. Using a number of examples including leprosy, the plague, and typhus, he sought to revisit conventional ideas about progress by arguing that the most devastating infectious and nutritional diseases had all but disappeared in Europe before the advent of germ theory.Footnote 21 Not only had laboratory medicine been given undue credit for controlling infectious disease and reducing infant mortality – a phenomenon that Dubos associated with better nutrition and sanitation – but he also noted that little practical progress had been made toward addressing varied, ill-defined ailments including those of old age, which constitute such a large percentage of medical practice.Footnote 22 While Dubos readily conceded that new knowledge – for example of microbial diseases – had led to some spectacular successes, he emphasized that the accompanying rhetoric of progress obscured medicine’s ultimate inability to eliminate the disease burden on society.Footnote 23 Progress against specific diseases, he argued, runs up against fundamental biological and knowledge limits.
Central to his argument is that medical knowledge transcends laboratory knowledge because it deals with the health of human beings who are fundamentally ecological, living in an environment that changes over time. Referencing contemporary books Our Synthetic Environment by Murray Bookchin (1962) and Rachel Carson’s The Silent Spring (1962), he noted that technological advances bring with them harms to health that are revealed only after a certain amount of time, and even then often too late.Footnote 24 Health, Dubos believed, should be conceived as fitness to respond to various factors and that fitness is achieved through innumerable adaptations to those factors. Essentially, he challenged the view that diseases have remained more or less constant throughout human history, and what has changed is only our knowledge of them. He, therefore, was also skeptical of “utopian” views of progress that sought to acquire cumulative knowledge about a fixed disease entity. Since the body was engaged in constant adaptation, and disease could always arise when maladjustments occurred, the burden of disease, he wrote, “is not likely to decrease in the future, whatever the progress of medical research and whatever the skill of social organizations in applying new discoveries.”Footnote 25 Dubos developed these arguments in his book, The Mirage of Health: Utopias, Progress and Biological Change (1959), in which he tells the reader: “Complete freedom from disease and from struggle is almost incompatible with the process of living,” and that a related belief in progress is a coping strategy that “has provided mankind with solace in times of despair and with élan during the expansive periods of history.”Footnote 26
While he was concerned to point out the fundamentally misguided nature of a certain kind of scientific knowledge-seeking, Dubos was also interested in articulating what he saw as a viable, yet fundamentally limited view of progress. He muses that since it is impossible to know in advance the nature of the ecosystem that will be relevant for future diseases, what is left is the challenge of how medical knowledge can help individuals and societies become better able to face unpredictable problems. And he noted that this is an “ill-defined task,” which requires a much more nuanced assessment of both the possibilities of future progress and the achievements of the past.Footnote 27 Nevertheless, Dubos believed that this necessarily modest task was also a form of ideological protection against utopia. He drew attention to how the “restless” pursuit of specialized medical knowledge without “any clear statement of direction” would not lead to any viable conception of progress and could be harmful.Footnote 28 In a notable break with the view that progress in biomedical knowledge is inherently peaceful and beneficial, he warned that unless medical scientists take a long-range view of the consequences of their activities, they may very well come to know the anguish that atomic physicists experienced as they witnessed the tragic effects of their scientific triumphs.Footnote 29
As Dubos was referring to bioscientific medical progress as a “mirage,” a number of contributions from the social sciences documented how the knowledge categories and technologies of Western medicine did not have the universal appeal that had been optimistically assumed. Various inputs chronicled at length how local medical services were consistently preferred to Western biomedicine and concluded that this was largely due to the ways in which they were better adapted to local social structures. In the example of campaigns to boil drinking water, both the local populations who chose to do so and those who did not did so for differing motives, for example, because they were offended by the socially degrading implication that their hygiene was inadequate. Such cases heightened the interest of social scientists in the social and cultural contexts of medical knowledge and beliefs, as well as prompted them to question whether rational, progressive knowledge was the exclusive prerogative of Western scientific medicine.Footnote 30 Accordingly, a number of academics from the social sciences developed distinct theoretical approaches to investigate medical knowledge by integrating social factors into epidemiological and other medical research. And in doing so, they turned a critical eye on Western medicine’s sense of itself as able to achieve progress by uncovering the truth about disease.
A major figure in this regard was sociologist Talcott Parsons (1902–79), who articulated, this time from a social science perspective, a theory of health as graspable only within a broad, systems perspective. Medicine itself, he points out, should be understood as a complex multilayered system made up of multiple actors, institutions, norms, and beliefs. Among the elements constituting this system, Parsons zoomed in on the prevalence of the belief in medical progress, which he saw as particularly developed in Western cultures. Parsons emphasizes that the belief in the accumulation of truths as able to overcome medical uncertainties was in large part cultural. And he criticizes the widely held view that the progress of scientific knowledge consists essentially in piling up discoveries and facts, describing how the “exact relation of the known to the unknown elements cannot be determined; the unknown may operate any time to invalidate expectations built up on analysis of the known.”Footnote 31
In doing so, Parsons reframes uncertainty not as something that knowledge-seeking can surmount but as something that coexists alongside and is even driven by progressive knowledge. Uncertainty, in this view, takes on a paramount importance in relation to knowledge generally. He argues that even as what is known increases, the physician is faced with inherent limitations of control, given that many medical conditions are essentially uncontrollable. The advances in medical knowledge, while remarkable, are far from eliminating such aspects of medical practice and are unlikely to do so in the future. On the contrary, increases in knowledge may resolve some uncertainties, but they also create new forms of uncertainty that did not previously exist, thereby shedding light on the extent of human ignorance. Years later, his former student Renée Fox – who went on to work extensively on medical uncertainty – summarized one of Parsons’ key contributions as follows:
while medical scientific progress can reduce extant areas of uncertainty and limitation, it also identifies previously held misconceptions, uncovers fresh areas of ignorance, raises new questions, and brings in its wake side effects and iatrogenic harms that did not exist before.Footnote 32
Parsons saw the desire to overcome uncertainty and enthusiastic claims about medical-scientific progress as bound up together and attributed this to the fact that health problems affect the most intimate aspects of patients’ bodies and lives and are linked with physicians’ own emotional involvement and responsibility. Drawing on the work of anthropologist Bronisław Malinowski (1884–1942), he notes that magical beliefs and practices cluster around situations involving a significant uncertainty factor and in which there are strong emotional interests in a successful resolution, for which health problems present a classic example.Footnote 33 Since scientific medicine precludes magic, rhetorical strategies and beliefs in the need for action rather than inaction tend to fulfill that function. He singled out his own country, the United States, as one in which the pressure on physicians and families to do everything possible is particularly strong. The notion of progressive knowledge as underpinning progress in medicine, therefore, cannot be dissociated from the specific coping strategies and expectations of both physicians and patients. These confirm optimistic bias in favor of intervention and reinforce beliefs about the possibility of truly controlling organic processes.
2.3 Challenges to Scientific Knowledge Progress from the Philosophy of Science
If these developments in the social and medical sciences posed a significant challenge to traditional ideas about the importance of progressive scientific knowledge for medicine, a further, distinct challenge came from the philosophy of science. Ludwik Fleck had argued in 1946 that contemporary science “is not closer to any objective picture of the world than the science of 100 years ago”;Footnote 34 work by Thomas Kuhn, Paul Feyerabend, and Larry Laudan, among others, further contributed to questioning the view that science develops simply by adding new truths to established foundations in a linear progress format.Footnote 35 In The Structure of Scientific Revolutions (1962), Kuhn develops a view of progress as problem-solving rather than achieving a potentially universalizable end and argued that knowledge should not be equated with an objective truth but rather seen as an intervention, able to illuminate specific aspects of the object of inquiry. He distinguishes between normal science – that is, scientific endeavors conducted within an accepted paradigm – and revolutionary science, in which different accepted truths compete and eventually generate a new paradigm. Progress that is cumulative and continuous could occur within the parameters of the research program of normal science, but this progress is always theory dependent; while Newton claims that an apple falls to the ground because of gravity, Aristotle says that it falls because it is seeking its telos. Kuhn writes that unless one simply defines approaching the truth as the result of scientific endeavor, “we cannot recognize progress toward that goal.”Footnote 36 If the new paradigm produced following a revolution cannot be said to have made clear epistemological progress compared to the prerevolutionary paradigm, then progress across paradigms is difficult.
Kuhn drew attention to how hard it is for scientific knowledge to represent nature objectively by observing that scientists make decisions according to plural criteria, criteria that cannot be ranked in any impartial way.Footnote 37 Four years earlier, in 1958, historian of ideas Isaiah Berlin had argued that:
[i]f, as I believe the ends of men are many, and not all of them are in principle compatible with each other, then the possibility of conflict – and tragedy – can never wholly be eliminated from human life, either personal or social. The necessity of choosing between absolute claims is then an inescapable characteristic of the human condition.Footnote 38
Building on Berlin’s account of persistent ethical tensions, something that resonates in the normative framework for medical progress developed here, Kuhn’s theory showed that there is no one way to resolve epistemic tensions and that choosing between values is an inescapable part of doing science.Footnote 39 Even if several values – accuracy, simplicity, and explanatory power, say – are relevant to a decision, we might still weigh these values in different ways and therefore arrive at different results. There may be no common measure for abstract values such as accuracy and simplicity; values may also be incommensurable, in that they cannot be compared. Thus conceived, the free exercise of human reason does not lead to one truth but rather to numerous competing truths since there is no correct way in which plural values should be ordered.
Not only do well-informed scientists arrive at different judgments about what is true, Kuhn also argued that extrascientific factors, such as politics, institutions, thought leaders, and the like, often dictate how scientific change takes place. In short, the paradigm in which progress occurs is itself dependent on values and determined by outside factors. Kuhn did not deny the possibility of progress per se, and in a postscript written in 1969, he clarified his position by remarking that later scientific theories “are better than earlier ones for solving puzzles in the often quite different environments to which they are applied. That is not a relativist’s position, and it displays the sense in which I am a convinced believer in scientific progress.”Footnote 40 Nevertheless, the consequences for overarching claims of scientific progress were profound across different fields. Kuhn’s work has consistently been read as disputing the notion of orderly progress, for example, identifying instead “a secretive and non-cumulative sequence of scientific revolutions: an opaque world that neither reflects nor validates liberal ideals.”Footnote 41
2.4 No Progress in Medicine: Questioning Cumulative, Progressive Knowledge
Kuhn’s work did not so much break with the notion of progress per se but rather drew attention to the problems of progress in the physical sciences. But his depiction of scientific revolutions, and the complications they pose for progress, motivated relativism, skepticism, and a host of other positions that developed fundamental critiques of a truth-seeking idea of progress. The importance of these debates for ideas of medical progress and knowledge is difficult to overstate; according to Steve Fuller, postmodernism made it “no longer fashionable to believe in the idea of progress.”Footnote 42
For skeptical arguments, medicine is a privileged field to show how a widely shared belief in justifiable, universalizable progress is not compelling. Jean-François Lyotard, whose book La condition postmoderne: rapport sur le savoir (The Postmodern Condition: A Report on Knowledge, 1979) intensified these debates, defined the postmodern attitude as incredulity toward metanarratives and the idea of progress as a prime example thereof, representing how knowledge supposedly accumulates toward a good ethicopolitical end.Footnote 43 The emphasis on discourse and the socially contingent character of knowledge was bound up with an important relativist proposition, namely that linear accounts of the history of medical progress must be abandoned. Instead, Lyotard advocated a return to the petit récit (small narrative) informed by lived experience, distinctiveness, and complexity. In doing so, he articulated a representative suspicion of the privileged epistemic status of scientific knowledge and the way it should be reconceived as one among other competing forms of knowledge, all of which have their own validity. Rather, by highlighting the contingency and perspectival nature of beliefs – including reason – grounded in the normative preferences of particular societies, narratives that draw on “rationality,” “science,” and “truth” are inexplicable without reference to the cultural context in which they are articulated and, in particular, without the Enlightenment commitment to progress and the imperialism that underpinned its idea of civilizational advance. Pushed to their logical extreme, such contributions have been described as denying “the existence of progress, even in science and especially in medicine.”Footnote 44
Critiques of the privileged status of scientific/biomedical knowledge were articulated in a fast-changing landscape in which there was a rising awareness of the complexities of lifestyle, stress-related, and chronic diseases. Medicine as a field able to capitalize on scientific advances was questioned both because successes in infectious disease control were not replicated for noncommunicable diseases and because the increasing costs and commodification of medicine seemed to have become decoupled from health benefits. As monitored in Chapter 3, the image of the expert, benevolent physician also lost status: a certain antipathy to professional authority developed in response to concerns about abuses of power in the medical context. If scientific progress was previously at the center of public attention, it slowly was displaced by medicine’s various economic and moral problems.
Indeed, the confidence in medical, scientific progress was undermined to such an extent that medical nihilism flourished in the 1970s.Footnote 45 For instance, Ivan Illich (1926–2002), a theologian and social critic, articulated a particularly resonant critique of widespread confidence in medical progress. Illich emphasized that the pursuit of medical knowledge without taking into account the richness and inherent fragility of the human condition is detrimental to health. For him, the widely praised progress of medicine was greatly exaggerated; a vast amount of clinical care is incidental to curing disease, while the damage done by medicine to health is very significant.Footnote 46 The empirical work that Illich drew on to support his claims largely concerns the historical evolution of disease patterns, the questionable effectiveness of some medical treatments, and improvements in procedures and devices – including contraception, vaccination, and treatment of water, sewage, and the like – that have significant health benefits but are not medical in a narrow sense. Extrapolating from these observations, he argues that medicine’s current priorities increase human suffering because the medical system actually harms the patients it treats, the medical profession holds power to the detriment of other social groups, and the commodification of health fundamentally damages individuals’ innate ability to cope with illness. In his terms, the construction of hospitals amounts to “castles turned cathedrals, built to protect us against ignorance, discomfort, pain and death,” and he characterized this development as profoundly disabling.Footnote 47
Illich describes his writings as trying to question the ontological status of health as a certainty or an axiom, which also acts as a pillar of contemporary society.Footnote 48 But they are also an attempt to question widely held views about the reliance of medical progress on scientific progress. In his view, many technical medical interventions were based on an excessively narrow, scientific conception of medical knowledge, which held that solving a problem simply meant that there was one less problem to worry about. Knowing in medicine, he pointed out, transcends isolated interventions because it requires understanding how they fit together in the larger fabric of human life. Technologies, as he portrays them, do not contribute to individual independence and judgment abilities but rather harm them because by delegating knowledge tasks to technologies we lose in individual comprehension.Footnote 49 Illich points out that the logic of scientific progress underpins a medical system in which resources are increasingly diverted toward expensive, high-tech hospital treatments and one that has unrealistic expectations of medicine’s curative potential. And he criticized the faith that open-ended improvements in health are possible, something he saw as “sentimental” and as rooted in a “deep-seated need for the engineering of miracles.”Footnote 50
Illich’s arguments were inspirational for various attempts to rethink the “medicalization” of specific health issues such as depression and for redistributing funds away from, for example, intensive care toward education, preventative medicine, and social programs.Footnote 51 Discussing Illich’s contributions, Michel Foucault (1926–1984) notes that a particularly important aspect of his critique was to show that the rational practice of medicine itself, and not medical errors or accidents, can cause harm. Effectively, medicine could be dangerous, not due to ignorance or falseness, but rather through its knowledge, and precisely because it was based on science.Footnote 52 In his own work, and drawing on Nietzsche’s account of knowledge as a tool of power, Foucault used historical examples to show how the imposition of medical knowledge is an act of authority and that claims to medical progress are exaggerated. He saw societies as having certain forms of discourse that they accept and consider true, practices that validate these assumptions and strengthen the status of those whose views count as the truth. These insights rest on his view of the self as fundamentally relational, whereby individuals’ ability to reason is molded and shaped by the variety of relations they entertain. In Foucault’s theory, the body itself is fundamentally political and subject to power relations: the self dissipates and conforms, confronted by a “power that is law, the subject who is constituted as subject – who is ‘subjected’ – is he who obeys.”Footnote 53 There is, therefore, no stable, perfectible idea of the self or of society that grounds medical interventions and can act as a standard for measuring progress. With these premises, he was able to shed light on the ways in which the commitment to certain kinds of medical progress and powerful interests were bound up together. Both the history of sexuality and the history of psychiatry display evidence of the “medicalization” of issues that are not a disease and the authority of medicine to determine what is normal. In Foucault’s account, changing historical categories of madness – from excessive to unreasonable and insane – did not represent epistemic progress toward understanding a single phenomenon but are rather manifestations of social norms and transgressions that always take place in a specific context.
2.5 Pluralism, Information, and Knowledge
In the course of the twentieth century, positivistic attachments to progress and the perception of medical knowledge as engaged in incremental progress toward uncovering all the mysteries of health were significantly undermined. Early portrayals of the violence done in the name of progress were expanded in a stream of writings – some of which are discussed in Chapters 3 and 4 – that detail the harms done to specific individuals and groups in the name of progress. Yet the lack of a clear relationship between scientific progress (however defended) and medical progress also opened up new ways of interpreting and reacting to human illness. For one, laying bare problems in different accounts of scientific progress increased the value allotted to the knowledge of nonscientists and to that of patients. In an early contribution, Sandra Harding comments on the emancipatory potential of acknowledging that contrary to the assumption that there is “a” world out there, graspable and explainable through science, “there are as many kinds of interrelated and smoothly connected realities as there are kinds of oppositional consciousness. By giving up the goal of telling ‘one true story,’ we embrace instead […] permanent partiality.”Footnote 54 This valorization of epistemic pluralism set the scene for the expansion of scientific inquiry into a wider array of issues not normally associated with the material of scientific knowledge – such as the body, power, discipline, and gender. And this extension of the scope of inquiry fundamentally questioned narrower assumptions about what constitutes scientific knowledge.
One effect of this turn toward pluralism was to show how trends, fashions, and popularity of medical knowledge often take the place of progressivity.Footnote 55 For this reason, narratives of progress can be thought of as having been engulfed by a flood of data, associations, information, and cross-references associated with the internet.Footnote 56 On the web, knowledge functions as a good that acquires its worth from supply and demand, and the desire for progress makes it particularly liable to be co-opted by profit incentives. Rather than specific medical truths that ground narratives of progress, we have contingent knowledge masquerading as convincing truth claims. To illustrate this process, one internet user commented at length on an article in the Economist magazine chronicling a changing consensus among medical experts as to whether saturated fat or sugar was worse for health.
joski65, June 3, 2014, 12:25
Run. Don’t run. Walk. It’s better. Don’t walk in the mornings, there’s too much smog in the air. Walking in the evenings isn’t good for digestion and there must be at least a 3 hour gap between walking and bedtime. Play. But don’t play impact sports. Those would cause permanent damage to your knees and joints. Swim. But remember the water in most pools are not clean and will lead to skin damage. In any case, exercise does not really matter. Your diet does. Breakfast, like a King, lunch like a prince and dinner like a pauper. That’s bullshit. Eat 5 times a day in small equal quantities. No. Focus on proteins. Eat white meat, avoid red meat. Eat only fish. Eat only chicken. Eat only eggs. make that only the egg white. That’s a recipe for high cholesterol! Eat only fruits, veggies. Eat only leafy veggies. don’t eat leafy veggies because they have worm eggs in them. Avoid other veggies they have high carbs and lead to gas attacks. Eat that ugly looking Brazilian jungle vegetable, it cures cancer. No avoid it! it leads to impotence. Stick to fruits but avoid the skin. No eat only the skin, they’re rich in proteins. But don’t eat the fruits which have red seeds they are poisonous and green fruits should be avoided if they were purple flowers. Drink milk. But not buffalo milk, drink cows milk. But make it skimmed. No skimmed is processed, drink goat milk no camel milk. Don’t drink milk! the body cannot digest milk after the age of three. Drink mother’s milk? only till three. Drink? Water. But not from the tap. Mineral water. Which is tap water only dirtier. No only water from the Alps. Drinking is good. Small quantity of alcohol helps keep the arteries from clogging. But drink only wine. Red wine. but only with white meat. But now since no white meat there can’t be no wine. Drink only coffee and tea. No they cause damage over the long run. Drink green tea. No it causes prostrate problems. Don’t smoke! it causes cancer. Smoke cigars less tar. Beedis are better. But cause ulcer. Smoking up is best. Pot is bad. It is medicine. Yogis smoke up. Yogi’s go nowhere. Breathing the air in any city is equivalent to smoking 20 cigarettes.
Welcome to the age of information. You are now better informed about every aspect of your health and can take informed decisions about leading a healthier, happier and emotionally stable life.Footnote 57
In making the list of competing kinds of health advice as long and wide ranging as possible, Joski65 is very much at odds with proponents of medical knowledge as cumulative, stable, and progressive. But this caricaturized depiction resonates both in arguments that decry privileging biomedical knowledge over other forms and in those that draw attention to the persistent gaps between progress in knowledge and related progress in its application to medical problems.
“Pluralistic,” a “social product,” “historically situated,” and “perspectivist”; post-Kuhn progress in scientific knowledge appeared “messy,” “imprecise,” and subject to values and therefore muted.Footnote 58 What is significant about these developments for my purposes is that they reveal the difficulty, and perhaps impossibility, of providing a compelling account of scientific progress that is highly relevant to progress in medicine. For one, the line between science and nonscience was no longer as clear as it had been.Footnote 59 Science studies disciplines show how science is a social process, influenced by economic, professional, and cultural values and constraints. They also reveal the extent to which particular canons of knowledge are constructed by active elimination and forgetting and involved in a permanent struggle to claim some sources of knowledge as superior to others and give them a privileged status. Effectively, the narrowly scientific identity of Western medicine, and view of itself as a source of universalizable and incontrovertible knowledge, had to reckon with its status as a form of knowledge among others.
Secondly, the relationship between scientific advances and medical progress needs to be rethought. What is referred to as scientific progress in normal times is progress in acquiring knowledge about the world within a particular theoretical framework. At the same time, beyond discoveries and technological innovations, it is major problems or crises that can trigger the elaboration of a new framework. Such shifts occur when a novel theory develops in response to a crisis that cannot be resolved by normal problem-solving activities. Transcending and, perhaps, abandoning a given framework may have a larger impact on individual or population health than improving specific practices within an accepted framework.
Finally, just as medical knowledge has multiple sources, there are multiple instances in which progress can occur, but they may not all add up. Scientific understandings of health provide valuable insights, but they do not capture health in its entirety. There may be progress in the understanding of health and disease or in the effectiveness of medical interventions, or the status of modern medicine in relation to other areas of human life might change.Footnote 60 Crucially, progress can be made on one level independently of the others and does not necessarily reinforce or contribute to progress in a different aspect. In this way, refining the relationship between scientific progress and medical progress shows the necessity of a multidimensional account of progress in medicine.
2.6 Defending Progress in Medicine
Despite the above views, the denunciation of scientific medicine (Schulmedizin) as unable to provide certainties does not predominate in Western countries. The belief in scientific advances as the main drivers of medical progress is still a popular notion among the general public as well as for medical professionals, scientists, and engineers. The technical successes of medicine aimed at healing the body continue to be referenced as prime examples of the potential of scientific knowledge to improve human life more generally. Cultural theorist Nico Stehr observes that scientific progress in medicine and other applied fields is regularly “paraded as incontrovertible evidence of the usefulness and power of knowledge.”Footnote 61 Regardless of the abovementioned critical voices – and to some extent as a reaction to them – the idea that objective progress by applying scientific reason in medicine is both possible and desirable continues to flourish.
In such debates about the progress of knowledge, medicine is not simply one example among others. Regardless of the centrality of medical examples for questioning progress, medicine is also portrayed as uniquely impervious to esthetic or ironic insights that question progress. Physicians, one neurosurgeon writes, consider medicine to have a unique situation among other branches of knowledge in terms of its ability to remain unaffected by the widespread uncertainties that relativistic thinking has injected into almost every other field.Footnote 62 Describing the demise of Enlightenment thinking about progress, and the faith that we can obtain an objective understanding of reality, physician Paul Hodgkin muses that medicine alone remains curiously immune to these epidemic uncertainties.Footnote 63 And as other fields have adopted practices and modes of thought that distance themselves from the idea of progress, medicine retains what an MD calls an anomalous position in contemporary culture. They describe medicine as an “island of rationalistic modernity” floating in a sea of subjectivism, relativism, and cynicism and conclude that medicine “has not abandoned ideas of progress, neither has it abandoned the idea of purpose.”Footnote 64
The arguments that medicine is largely immune to skeptical accounts of progressive medical knowledge fall into several categories. The first is that the biomedical dimension of health is simply the predominant one and trumps all others. The serious, urgent nature of some medical complaints has been put forward to illustrate how this simply discounts the desirability of “alternative”/unorthodox treatments, and only the very deluded could fail to believe in treatments approved by the present state of specifically biomedical knowledge. Hodgkin sums up this attitude as follows: “[s]urely the rationalist, scientific project of biomedicine is immune to all this postmodern relativistic junk where one version of reality is as good as another. After all, a diabetic coma requires specific actions to be taken which cannot depend on whim but are the same for all times and all places.”Footnote 65 Medical successes including more effective surgical techniques, powerful antibiotics with minimal side effects, and new treatments for some cancers have all been used as examples thereof. While discussing the variety of healing practices in the United States, one MD argues that while constructionist practices may provide some insight into psychosocial diseases, there exists a common core of diseases to which they simply do not apply:
What of major biochemical and pathologic disorders, such as pneumococcal pneumonia, diabetic ketoacidosis, critical aortic stenosis, fracture of the hip, and a multitude of other serious diseases? These have responded to therapies that have grown out of the modern (pre-postmodern?) bio-physical model of disease. Would an American with a ruptured appendix really choose the shaman over a skilled physician?Footnote 66
Such points are often made by framing the importance of biomedicine and health itself in terms of their relevance for life and death. The situation in medicine has been described as analogous to the situation in war, in which survival is a priority.Footnote 67
Another reason that progress in scientific knowledge is portrayed as crucial is that it resonates with a view that health and disease are objective and real. If health is not a fluid, moving target but rather a fixed and given state, then it follows that the goals of medicine and progress can be refocused on curing disease. If the purpose of medicine is to alleviate illness and cure disease, there is also a clear goal, and progress toward it can be objectively measured. This assumption is what underpins the Chan Zuckerberg Foundation’s aim to support scientific research to cure, prevent, and manage all diseases in the next century.Footnote 68 Essential to this claim is the assumption that there are universalizable truths about health valid in different times and places. Jeremy Simon summarizes the importance of an epistemic attitude that presumes an objective understanding of reality for such progress in medicine:
There really are diseases out there that we can come to know about just as there really are electrons, and it is medicine’s goal to learn about these real diseases. Thus, we make progress in medicine whenever we discover a new fact about the medical part of the natural world. Discovering a new disease that is “really” out there is progress, and so is learning something new about one of those diseases, such as how to eliminate it from the body of someone who is stricken by it.Footnote 69
Conversely, some so-called diseases are not real and therefore should not be of concern either to medical researchers and practitioners or to patients. The corollary of this argument is that there is a clear consensus as to what health consists in, and while there has been a sustained interest in alternative medicine, different forms of well-being, and the mind–body connection, “reality” will have the last word. Speaking to this point, an anesthesiologist observes that, in the field of health, it is completely normal to still hold “the nineteenth-century idea of progress.”Footnote 70 Given the continuous and dramatic progress against all forms of disease in the twentieth century, it is perfectly viable to expect this progress to continue. Meanwhile, forms of postmodern/alternative medicine will be exposed as fraudulent and return to the shadows, along with voodoo, phrenology, and bleeding, where they belong.
Furthermore, in light of the complexities of disease and treatment, the idea of progress is a valuable motivating factor for researchers, physicians, and patients alike. While physicians practice in conditions of pervasive uncertainty, it is well known that they struggle to communicate ambiguity and ambivalence to patients; nor are they expected to. The conviction that physicians must present a “solution” or a truth exists as a fundamental premise underpinning the clinical encounter, related to the very act of diagnosis, a concept that lends itself toward an attachment to one knowable truth. For this reason, some physicians argue that it should be replaced by the concept of hypothesis, which references the fluidity and slippery nature of knowledge.Footnote 71 Medical education remains based on a cumulative view of knowledge, driven by rational inquiry, overcoming ignorance, and leading to objectivity or the truth. And while individual physicians readily concede that uncertainty is often unavoidable, medical training mainly teaches that uncertainty is something to be minimized, ignored, or repudiated. One MD cites her own experience as a medical student during which she reported a cardiac exam to her superiors and stated:
“In my exam this morning I didn’t hear any murmurs or extra sounds, but someone else should probably listen to him, just to make sure.” I was quickly and firmly chastised with the words, “No one wants to hear what you don’t know.” You should say “the cardiac exam showed no murmurs or extra sounds” and leave it at that.Footnote 72
In her telling, the way in which physicians crave certainty, and believe that intervention in conditions of uncertainty is constructive for patients, is merely another manifestation of the desire for progress.
The broader culture in which physicians operate is internalized by patients too. As a rule, patients want to identify the source of their medical problem, to know why it occurred, and hope that medicine provides a solution to overcome it. Referring to the patient perspective, Charlton observes that “a sick person wants the certainties of modernity.”Footnote 73 From the point of view of the patient, even a diagnosis, which implies corresponding knowledge about a condition and acceptance into a bureaucratic system, can be perceived as therapy. Not all diseases have the same biological legitimacy; many disorders that medicine does not fully understand are not considered legitimate, with all the repercussions this entails. For this reason, Joseph Dumit refers to them as “illnesses you have to fight to get.”Footnote 74
For patients, faith in medical progress is based on hope for a good outcome and the possibility of overcoming uncertainties. Hope, that is, the belief in the possibility of progress, allows patients to anticipate a desired future, and makes illness conditions more bearable.Footnote 75 Surgeon-turned-patient Paul Kalanithi remarks on how “a drop of hope” pushes back uncertainties and the “fog surrounding [his] life” and allows him to cope with his illness.Footnote 76 But hope and progress are bound up together in complicated ways. Reflecting on her incredible desire to see her very premature son survive, and her knowledge as a trained obstetrician-gynecologist that this was unlikely, MD Jen Gunter refers to hope as an “analgesic” better than anything science has to offer.Footnote 77 Hope, in this case, is a refraction of her desire for progress without a strong grounding in reality. Persistent uncertainties in medical knowledge and difficulties associated with its implementation temper hopes for progress. Medical interventions come replete with multiple problems and side effects, and there may well be fewer effective ones than most people assume.Footnote 78 It is possible to argue that extant beliefs in medical progress are based more on patients’ hopes for progress and new therapies that will improve their lives than on a well-founded confidence in medicine’s capabilities.
Physicians’ and patients’ desires for progress in medical knowledge are shaped by broader cultural pressures that valorize the idea of scientific progress in medicine. Take cancer research, for example. Unprecedented amounts of funding were made available for cancer research in the 1970s, based on the desire to gain new knowledge and improve the treatment and prevention of the disease. The possibility of winning the “war on cancer” is associated with targeted therapies based on knowledge of mechanisms designed “to strike with devastating consequences for the disease.”Footnote 79 Since that time, the US National Cancer Institute alone has spent more than 100 billion dollars on cancer research, under the mandate of “leading the nation’s progress against cancer” in which the advance of scientific knowledge and expensive treatments play a key role.Footnote 80 Yet, the gap between epistemological progress gained and using new knowledge to explain and treat cancer in a cost-effective way remains.Footnote 81 Stopping smoking is one factor that has a pronounced impact on decreasing cancer rates, but cancer remains the second leading cause of death in the United States overall and the leading cause among people younger than eighty-five.Footnote 82 At the same time, the discourse of progress and cancer largely prevails. The medical profession, those who market it, and the public at large share a general sense that cancer is largely preventable and that, if not prevented, it can usually be treated and even beaten.Footnote 83 Beyond the questionable empirical basis for this belief is the fact that such narratives play a powerful role in and of themselves. Medical researcher Robert Weinberg reflects that while the “overenthusiasm” and “reductionist triumphalism” associated with certain phases of the war on cancer were certainly ill-founded, perhaps he and his colleagues would never have begun their work had they known how complicated things would turn out to be.Footnote 84 In other words, the belief in progress is a powerful motivating factor in its own right.
Much of this chapter has chronicled insights by philosophers, historians, and others about the contingent nature of science and truth, as well as a persistent tendency to associate medical knowledge with an ambitious, progress-oriented view. In what follows, I want to discuss in more detail two exemplary answers to the question of what is medical progress today. In addition to shedding light on the knowledge we seek, the kinds of knowledge we value, and the technologies we associate with that knowledge, these examples illustrate how science itself exists in perpetual motion, continually challenging the knowledge it has created, and revealing new unknowns.
2.6.1 Reclaiming Progress I: Evidence-Based Medicine
As depicted above, the rejection of relativism and skepticism, and the affirmation that real, tangible, and useful knowledge exists, reinvigorated the idea of progress in medicine. In turn, this belief is reflected in the knowledge theories and methods underpinning medicine. Evidence-based medicine (EBM), in particular, has been prominently associated with progress as scientific knowledge. If improved medical knowledge and its applications are linked to objective knowledge, EBM is regularly cited as the best example in this regard.Footnote 85 In a BMJ article, Paul Hodgkin argues that EBM “promises certainty” and that knowable certainties imply progress; “[a]fter all, if there are knowable medical truths ‘out there’ then we should get our act together and apply them.”Footnote 86 Beyond its specific capabilities and fallibilities, one of the most striking successes of EBM has been to associate itself with the desirable future of medicine.Footnote 87
The rise of “evidence-based medicine” – the term was first used in the 1990s and is often commuted to evidence-based healthcare – blends with wider debates on evidence, measurement, and causal inferences that were already well established beyond medicine. A devotion to empirical methods and the study of evidence informs the idea of evidence-based progress from policymaking and economics to legal studies and business. And visions of progress based on evidence-based scientific generalizations played a particular role in the debates around progress in medicine. In a seminal article in the 1990s that signposted itself as marking the emergence of a new paradigm for medical practice, Gordon Guyatt and his collaborators challenged the previous authority of expert-based medicine, writing that rather than intuition and unsystematic clinical expertise, EBM stresses the best available scientific evidence.Footnote 88 From an epistemological perspective, EBM’s proponents hold that careful design, methodological rigor, and replication are fundamental for limiting personal bias and gaining knowledge, thanks to systematic inquiries. Rather than a hodgepodge of the idiosyncratic opinions of individual physicians, the aim of EBM, as further refined by David Sackett and colleagues in 1996, “is the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients.”Footnote 89
EBM’s commitment to epidemiological and biostatistical ways of thinking means that randomized controlled trials (RCTs) and meta-analyses thereof are at the top of its evidence hierarchy. The preference for evidence produced by clinical trials is bound up with the conviction that we can arrive at an objective measurement and understanding of reality, independent of time and place, and generalize these results to other settings. EBM observers Devisch and Murray represent this belief with the equation “[evidence] = truth = reality.”Footnote 90 Modernism has been characterized by the faith in the existence of objectivity, determinacy, and impartial observation, and EBM espouses many of these traits.Footnote 91 In an article devoted to assessing “progress in evidence-based medicine,” two of its founders, Benjamin Djulbegovic and Gordon Guyatt, explain that the “higher the quality of evidence, the closer to the truth,” and that the “pursuit of truth is best accomplished by evaluating the totality of the evidence.”Footnote 92 “Does ‘anything go,’ as some post-modernists would have it,” they asked in a different publication:
or is there such a thing as the objective scientific methodology that can be universally accepted by everyone? EBM espouses those philosophical views that endorse a central role of evidence to serve as a neutral, objective arbiter among competing views, thereby aiming to generate agreement among rational observers.Footnote 93
As a method of producing knowledge, the goal of EBM is to use RCTs to measure the reliability of medical interventions and the claim that the increased use of such trials – as an objective, universalizable, and neutral kind of methodology – constitutes progress.
Yet even as the proponents of EBM aspire to remove it from the realm of human values and opinions and connect it with truth-seeking scientific inquiry, epistemological and ethical questions arise in relation to every aspect of its knowledge production. Evidence is probabilistic knowledge, and such knowledge is obtained as the result of conscious, deliberate human activities.Footnote 94 EBM presents a kind of evidence that depends on eliminating the cultural context and subjectivities of the researchers creating that knowledge. Claims about the neutrality of scientific evidence obscure the ethical, emotional, and cultural complexities of clinical decisions.Footnote 95 Rather than a simple equation between evidence and truth-seeking, EBM implies a commitment to specific quantitative practices and statistical analyses. While EBM did propose new epistemic standards in the form of the RCT, it also brought to light the substantial limitations of this knowledge and the ideas of progress that rely on it.Footnote 96
EBM is not presenting a fundamentally new theory of medical progress, or even a framework in which such a theory is encouraged to develop, but rather offering a coherent structure for optimizing medical practice based on diligent attention to a specific kind of medical evidence. In a study that emphasizes historical tensions between rationalism and empiricism in medicine, Warren Newton writes that “[f]or all its rhetoric of novelty, Evidence Based Medicine represents a counter-revolution of traditional empiricism, draped in modern clothes of statistics and multi-variate analysis.”Footnote 97 In light of controversies as to what scientific progress actually is, Leen de Vreese observes that EBM fits with one particular approach to scientific progress, namely “problem-solving” rather than “knowledge-gaining.”Footnote 98 Since EBM’s progressive results are small gains in piecemeal knowledge rather than significant gains in understanding, de Vreese concludes that the advantages offered by RCTs must be balanced out by those associated with different methodologies. John Wu, meanwhile, has pointed to the self-limiting ambition of this particular form of empiricist thinking for progress: “If everything has to be double-blinded, randomised, and evidence-based, where does that leave new ideas?”Footnote 99
If there are important kinds of medical knowledge that are not captured by RCTs, EBM’s self-allocated role in driving medical progress may not be justified. Systematic reviews and meta-analyses have epistemic limitations because they rest on researchers’ decisions and choices about which studies to include in such reviews, how to determine their quality, and how to compare them statistically.Footnote 100 Multiple problems arise when conducting randomized clinical trials in social contexts, and they are at times ethically questionable, which limits the ability of RCTs to capture the social determinants of health. The expense of trials, the tenuousness of diagnostic categories constantly subject to revision and refinement, the existence of evidence that is narrative and subjective in nature, or derived from intuitions and physician expertise – all these have contributed to EBM acknowledging some of its limitations, as well as the importance of qualitative research and patient values.Footnote 101 In practice, however, it remains committed to methodological progress in the form of the RCT and its ability to produce reliable evidence about medical interventions. As a result, it has devoted much effort to improving this particular method of gaining medical knowledge, but the measured effect sizes of interventions have gotten smaller and smaller. This has led one epidemiologist to lament that we seem to be using “more and more advanced technology to study more and more trivial issues, while the major population causes of disease are ignored.”Footnote 102 Properly assessing progress means coming to grips with the strengths and weaknesses of various kinds of medical knowledge. It also implies acknowledging the difficulty of passing from clinical research to providing care in a real-world situation, with all of the epistemic challenges this entails.
2.6.2 Reclaiming Progress II: Big Data and Huge Progress
At this point, I want to step away from evidence-based ideas to wider debates on progress in recent decades. Just as warnings that progress could not be unconditionally associated with any one kind of evidence became more acute, the term and concept became caught up in a different field where dreams of progress were about to explode. The artificial intelligence (AI) boom following the breakthroughs in the feasibility of deep learning in the early 2010s was associated from the beginning with unprecedented knowledge gains in medicine. Tech commentator Peter Sweeney observes that the knowledge we expect of AI is “truly revolutionary” and links this aspiration to “theory-free science” that enables medicine to progress.Footnote 103 Others highlight the extent to which knowledge progress in the digital era represents a historical rupture and could result in a kind of progress that is markedly different from previous eras.Footnote 104 AI excels at producing knowledge through inductive reasoning, that is, learning from observation, and more generally, AI technologies are seen as elements in a progression that have enabled machines to both mimic and surpass human intelligence. Data is crucial: Computer programs reveal patterns and relationships that scientists or clinicians might not otherwise see because they are able to interpret results from trillions of data points relevant to a particular problem. As Sweeney puts it: “Data-driven has come to mean progress. If you subscribe to dataism, then it follows that access to data and talent are the only factors impeding progress.”Footnote 105
Part of the hype surrounding knowledge progress via information technologies is associated with the notion of rapid exponential growth, whereby each development becomes a building block for future developments. The implications for progress are profound: In this framework, it accumulates and accelerates. Pronouncements of individual researchers have contributed to these expectations; Mo Gawdat, formerly head business officer at Google X, argues that we will not experience 100 years of AI progress over the next century; rather, at current rates, we will experience 20,000 years, and that is without considering an unforeseen technological revolution.Footnote 106 As a rule, it is a recurring theme in the knowledge and progress discourse of the digital era to highlight that we are at a unique juncture in the history of medicine, whereby the capacity of information technologies to provide understanding makes comparisons with previous eras largely irrelevant.Footnote 107 Even as the problem of the excessively rapid growth of scientific knowledge was identified a century ago – Cynthia Whitehead argues that since then each era portrays the “exploding knowledge” problem as newly discoveredFootnote 108 – AI is depicted as both the motor behind progress and the crucial answer to information explosion.
The famous knowledge is power paradigm, whereby knowledge is the antidote to fear and uncertainty, has been described as the initial motivation for AI research in medicine.Footnote 109 And yet, progress in AI research raises a host of difficult questions for this paradigm as well as for the idea of progress in medicine. Human beings are flawed knowledge creators, but it does not follow that the knowledge of highly complex algorithmic machines trumps all others. Ideas of medical knowledge progress as achievable via AI involve a redefinition of knowledge along the lines of what a computer can do; a recent statement by computer researchers that information processing tasks are “the foundation of all knowledge work” is exemplary in this regard.Footnote 110 Such statements tap into previous trends that valorize particular kinds of knowledge bound up with measurement, breaking down the whole into constituent parts, and researchers’ disengagement. British scientist William Kelvin expressed this thought in 1883 when he said that when you can measure something and express it in numbers, you can know something about it, but if not your knowledge is meager and unsatisfactory.Footnote 111 A century later, the notion that we can arrive at an unbiased, neutral position expressed in numbers was identified as a tenacious assumption of Western medicine.Footnote 112 Giving priority to digitally generated data and associating it with the truth mask the way that the progress of that knowledge is always constructed and embedded in human value systems.
In a variety of ways, the readiness to cede epistemic authority to big data and AI is based on an image of persons – both patients and physicians – as resembling computers. Computer scientist Geoffrey Hinton differentiates between rule-based algorithms that aim to master the facts of a case (knowing that) and learning algorithms able to perceive patterns that are formed (knowing how). But there is a third realm of knowledge – knowing why – and he emphasizes that “asking why” is our conduit to every kind of explanation, and crucial for progress in medicine.Footnote 113 While AI has huge potential for both mastering facts and perceiving patterns, it has less for investigating causes. By delegating increasing aspects of clinical practice to opaque learning machines, physicians’ daily experience of mixing implicit and explicit forms of knowledge, knowing how, knowing that, and knowing why, fades. At the same time, asking why relates both to patients’ existence as finite beings with unique lives and values and to the broader social relationships in which they find themselves. This kind of Zusammenhangwissen (integrated knowledge) transcends task-focused algorithms because it requires physicians to step back and assess whether what they are doing is what they ought to be doing.Footnote 114 This kind of knowing, in all its dimensions, is an essential kind of knowledge in medicine.
A further problem with epistemic dependence on AI is linked to the fact that increases in knowledge occur alongside higher standards for justification, that is, standards that have to be met so that a given correlation between data and phenomena holds. Here, big data can make things worse, as more data throws up an inestimably large number of associative links that can make understanding which associations are causal and which are simply correlational more difficult. For example, while acknowledging the number of potential risk factors, and the importance of a systems approach, researchers identified 108 variables and 304 causal linkages that may influence obesity.Footnote 115 At the same time, such a high number of relevant traits does not result in a commensurate increase in genuine understanding of the medical problem at hand. In such cases, we are faced with the problem that more information is not an unconditional good, as well as the fact that increases in knowledge can entail increases in medicalization. Information about a connection that was previously unknown has consequences for those who choose to treat such a data point as an opportunity for intervention. Progress requires understanding the challenges involved in data provenance and collection and recognizing the limitations of deep learning.Footnote 116
A further problem hindering medical knowledge progress driven by AI is related to health inequalities and how the factors associated with the rise of health AI – such as access to computers and electronic health information – may be widening existing disparities. This is linked to the well-known problem of bias in both the creation and use of algorithms. Algorithms learn from data that may be of bad quality, not representative, or affected by human opinions and prejudices. AI systems are often trained on readily available datasets from the internet, which are neither complete nor unbiased. For this reason, big data has been labeled a regime of knowledge, power, and control, and internet studies scholars argue that algorithmic power reinforces oppressive social relationships, for example by creating new indicators of racial profiling.Footnote 117 In healthcare, the consequences are alarming. Deep learning algorithms trained using the data from homogeneous populations – often adult males of Caucasian origin – do not have the same accuracy for diagnosing and treating minorities. For example, an algorithm widely used in American hospitals to refer people to healthcare programs was found to be systematically discriminating against specific population groups.Footnote 118 In the assessment of one arts and technology researcher, such uses of AI in medicine sound more like the escalation of various societal conflicts than like progress in healthcare.Footnote 119 Meanwhile, some have sought to redefine medical progress so that it includes due attention to fairness in AI, practices of nondiscrimination, and the protection of patients’ rights.Footnote 120
2.7 Conclusion
Intellectual historian H. Stuart Hughes observes that the confidence it is possible to gain objective knowledge of the past is characteristic of the nineteenth century and contrasts this with a more typically twentieth-century perspective, which pays increased attention to built-in disparities between external reality and the subjective appreciation of that reality.Footnote 121 In recent debates on this topic, medicine played a central though Janus-like role. Within science studies, the humanities, and medicine itself, various voices chronicled the complex processes of knowledge production underpinning medical practices and paid particular attention to how power structures conditioned their implementation as well as shaped the expectations of patients and the public. Scientific medical knowledge came to be seen less as making incremental progress toward more refined and better knowledge but rather as a series of constantly renegotiated claims, contingent on unarticulated conceptual presuppositions. Biomedicine, it has been argued, is neither inevitable nor a given, but rather the product of specific political and ethical choices. Pushed to the extreme, relativistic sympathies are reflected in the belief that science is merely one among multiple options that foster health. Despite the above tendencies, the most optimistic incarnations of the idea of progress continued to hold sway in medicine. For some, medical knowledge is a “politically neutral,” “real” form of knowledge that embodies scientific progress for the benefit of human beings. The conviction that science will find ways to eliminate all health problems has been strengthened by spectacular scientific achievements; many modernist assumptions about scientific medical knowledge and its links to medical progress continue to flourish.
While we look to medicine to produce orderly, progressive knowledge, it relies on uncertain and imperfect science and a body of knowledge that is constantly changing. This is one of the reasons that Richard Horton, editor of the Lancet, has written “[t]he idea of progress is wrong, as is the idea of catastrophe. These are the wrong coordinates by which to judge our lives. There is no endpoint we are working towards. All there is is transition.”Footnote 122 Health is anything but static, and complete, definitive knowledge of health and disease is impossible. This is not least because a biomedical approach to health is only one among others. As we shall see in the next chapter, questioning a narrow focus on traditional, scientific ideas of health and progress was associated with a rise of interest in alternative and complementary medicines and holistic healing practices. It begins with interrogating the claimed authority of physicians and researchers in favor of lay knowledge and patients’ subjective experience. And a significant motivation for this shift was a widespread sense that scientific knowledge gains themselves are not enough to amount to progress, what is needed is knowledge that is able to empower patients.
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