Although I agree with Svenaeus’s claim that the phenomenology of medicine does more than merely describe what it is like to be ill, once one acknowledges its more far-reaching theoretical aspirations, one sees that it faces an even more difficult set of objections. Taking a cue from recent work by Rebecca Kukla, Russell Powell, and Eric Scarffe, I argue that the phenomenology of medicine could answer these objections by developing an institutional definition of illness. This not only allows the phenomenology of medicine to answer its critics, but it does so in a way that preserves its major achievements and extends its reach within the philosophy of medicine.With its rise in popularity, work in the phenomenology of medicine has also attracted its fair share of criticism. One such criticism maintains that, since the phenomenology of medicine does nothing but describe the experience of illness, it offers nothing one cannot obtain more easily by deploying simpler qualitative research methods. Fredrik Svenaeus has pushed back against this charge, insisting that the phenomenology of medicine not only describes but also  Once a minor movement, today the phenomenology of medicine (henceforth PM) exercises enough influence that critics feel the need to ‘put it in its place.’ Jonathan Sholl, for example, argues that PM’s proper place resides several notches below its current rank . As a diIn a recent paper, Fredrik Svenaeus dismisses these worries, arguing that critics like Sholl fail to appreciate PM’s distinctive offer . PM doesIn what follows, I weigh in on this conversation about the nature and value of PM. The paper has five sections. Section one defends Svenaeus’s claim that PM’s distinctive offer lies not merely in describing what it is like to be ill but rather in identifying the constitutive features of illness experiences. In section two, however, I argue that once PM’s aims are properly understood, it becomes clear that it faces a much more difficult set of objections; and in section three, I argue that these objections ultimately stem from a fundamental flaw in PM’s practice. Namely, it presupposes a normative notion of illness that its analyses cannot in principle provide. To overcome these worries, section four takes a cue from recent work by Rebecca Kukla and Russell Powell & Eric Scarffe and articulates an institutional account of illness –8; and s1According to critics like Sholl, if PM does nothing but describe experience, then it offers nothing distinctive, because countless research methods describe experience . MoreoveThe impression that PM does nothing but describe experience stems from multiple sources: (1) analytic philosophy and cognitive science have long used the term phenomenology as a synonym for ‘phenomenality,’ (2) enormous amounts of phenomenology-inspired qualitative research in fact does nothing but describe ‘lived experience,’ and (3) PM’s authors often insist that their key contributions lie in first-person descriptions of the experience of health and illness. So, it is easy to see why some critics think PM does nothing but describe experience.But those critics are mistaken. PM’s major figures clearly present what they do as a kind of conceptual work that does not merely describe what it is like to be ill but also attempts to identify the constitutive features of the experience of illness and to thereby define illness .a priori analysis of the possible kinds, categories, or modes of being, and what their relations are” [original emphasis]. Phenomenological ontology does not ask which things exist (or are), but rather what it means to be different kinds of things. To paraphrase Heidegger, it is concerned not with beings but rather with the meaning of beings. By isolating the essential features of this or that phenomenon, one thereby specifies the criteria something would have to meet to count as an instance of that phenomenon.How do PM’s authors do this conceptual work? The notion that phenomenology can clarify the essential or “eidetic” characteristics of different kinds of phenomena traces back to Edmund Husserl’s notion of the ‘eidetic reduction.’ To perform this reduction, the phenomenologist suspends her theories and factual beliefs about the phenomenon in question and examines the various ways it can be given; and based on that examination, she draws conclusions about possible conceivable phenomena and their essences. An important part of this process is what Husserl called ‘eidetic variation,’ wherein one imagines which changes the phenomenon in question can undergo while remaining the kind of phenomenon it is. In so doing, one isolates the parameters governing what it means to be the kind of thing in question. Hence, as Amy Thomasson explains, this process is key to understanding how phenomenologists practice ontology. Unlike today’s prevalent neo-Quinean conception of ontology as the study of “what does (and does not) ‘really’ exist” , p. 290,per se…”  us of what illness  consists” [original emphasis]. The definition Svenaeus arrives at via this method characterizes health as “homelike being-in-the-world,” a term of art designed to capture “the character of the normal, unapparent transparency of everyday activities” ? It would be one thing if she began her analysis with everything considered an illness experience and then refined things from there, ruling minor conditions out on some principled basis. But she does not. On this interpretation, before her analysis begins, she excludes experiences that most people consider illness experiences from the category of illness. This implies that she already has access to the norm that her analysis aims to furnish. Not only is such a view radically and gratuitously revisionary, but it presupposes access to the very norm it promises to provide.Instead, on this interpretation, Carel excludes these experiences from the category of illness one bona fide illness experience that lacks one aspect of their putatively eidetic/ontological accounts, then those accounts fail and stand in need of revision.Shifting focus now to Toombs and Svenaeus, in the phenomenological tradition, an eidetic/ontological account of some phenomenon purports to identify its defining marks or constitutive features. Such an account, then, should cover all phenomena of the relevant kind. Think of Toombs’s analogy to the eidetic analysis of a cube. On that analysis, no figure that lacks rectangularity, six square sides, or corporeality can count as a cube. Eidetic accounts, then, are supposed to capture every single instance of the target phenomenon. Thus, on the approach taken by Toombs and Svenaeus, if one can identify To find such a counterexample, one can turn once more to minor illnesses. A minor illness does not involve the dramatic losses that Toombs identifies as eidetic characteristics of illness. Unless one’s health is already compromised by another condition, when one catches a mild cold, one does not lose one’s sense of wholeness, certainty, control, or freedom, and the world does not become alien or unfamiliar. Neither does Svenaeus’s definition fit the experience; again, unless one’s health is compromised by another condition, a mild cold does not transform one’s body into an alien being, making one not-at-home-in-the-world, nor does one find oneself in “a pattern of disorientation, resistance, helplessness,…[or] despair.” Toombs and Svenaeus successfully capture important features of some illness experiences, but as eidetic/ontological accounts, they fail, because they cannot capture minor illnesses like colds.I want to now briefly address three things. First, I am not just being a pernickety stickler. By claiming to identify the “eidetic characteristics” , p. 229 transparent” [original emphasis]; and that such transparency is “the hallmark of health and normal function” [Turning now to my third and final objection, I want to raise a worry about PM’s normalcy talk. As shown above, Carel claims that in “a normal situation” , p. 30, unction” , p. 56. unction” , p. 234.unction” ; howeverunction” , p. 211.This normalcy talk is objectionable because it illicitly exploits an ambiguity in the word ‘normal.’ Normal can mean statistically typical , and it can also take on a normative significance when paired with the term “pathological” in a conceptual binary . PM’s authors talk about the body’s transparency as if it is “normal” in both the statistical and normative sense. Strictly speaking, both claims are incorrect. In the phenomenological tradition, the transparency of the ‘lived body’ – the body as it is experienced first-personally – is a condition for the possibility of intelligible experience. The lived body’s transparency, then, is not simply statistically typical – like having ten fingers – but is rather a constitutive feature of intelligible experience as such. Moreover, this holds true of the lived body both in a healthy “normal” condition and an ill “pathological” one. Even in serious, life-altering illness, when part of the body becomes obtrusive, obstinate, or conspicuous, the lived body, for the most part, remains transparent and continues to play its constitutive role.remain experientially transparent, making it possible for me to focus on and explore the conspicuous limb. To experience my illness as an illness, my body must remain largely transparent. From a phenomenological standpoint, then, it is false to claim that the “normal,” healthy body is transparent and the ill body conspicuous; the lived body is always partially transparent in intelligible experience, whether healthy or ill. Furthermore, the transition from transparency to obstinacy is in no way distinctive of illness but rather a core feature of embodiment evident in experiences that involve no illness whatsoever, e.g., when I sit too long at a conference, and my leg goes numb, reminding me to get up and move.For example, say one morning I wake to find my left leg partially paralyzed. That leg will become urgently conspicuous, which will indeed highlight ways in which it had been experientially transparent. However, when I set out to investigate the extent of the damage, my postural control, the bodily skills of my torso, arms, and hands, the saccadic movement of my eyes, my mastery of the associated sensorimotor contingencies, and so on, will In sum, then, these authors’ analyses of the lived body do not justify but rather presuppose the legitimacy of their normalcy talk within the framework of PM.As I said at the beginning of the previous section, the three objections just considered arise from a more fundamental flaw in PM’s practice. To bring this flaw into view, I turn to recent work by Kukla and Powell & Scarffe –8. TheseBefore I do so, however, I want to make something explicit to avoid unnecessary confusion: to my knowledge, the research programs undertaken by Kukla and Powell & Scarffe are entirely independent of each other. Kukla’s piece was published in 2015 , the twoTo begin, here is a brief description of the dominant approaches to disease that these authors criticize:Disease normativism maintains that the notion of disease is a social construction that reflects nothing more than value judgements about biomedical states .Disease naturalism attempts to define disease in value-neutral terms as biological dysfunction: a normally functioning biological trait makes a statistically normal contribution to an organism’s evolutionary fitness, and a trait that departs from normal function to a stipulated degree is deemed biodysfunctional or a disease .Hybrid views combine elements of 1) and 2). The most influential version defines disease as ‘harmful dysfunction’ - the judgment that a biomedical state is ‘harmful’ incorporates the evaluative dimension of normativism, and the claim that the state is biodysfunctional incorporates the putatively value-neutral element of naturalism .medicine, because medicine is a fundamentally “normative project” [institutional work to help make normative calls about health policy, treatment decisions, and the just distribution of resources. At the individual level, disease diagnosis signals that one is entitled to support; and at the population level, it serves as a heuristic to ensure that the relevant decision makers justly and equitably prioritize the treatment of those who, biomedically speaking, are worst off. The three approaches in disease discourse briefly described above cannot play this normative institutional role, because they are purely descriptive: disease naturalism describes biological facts about functions and fitness; disease normativism describes social facts about which biomedical states a community happens to disvalue; and hybrid views describe the conjunction of these social and biological facts [should disvalue. As Kukla puts it, these views are “devoid of normative force or practical upshot” [Kukla and Powell & Eric Scarffe bring the same basic charge against these views – none furnishes a sufficiently normative concept of disease for the institutions of medicine. To be clear, these authors are pluralists about disease concepts; they acknowledge that there may be multiple valid concepts of disease suitable for different projects. For example, they accept that a strictly scientific concept of disease might be suitable for biological research. They insist, however, that only a normative notion of disease can do the work one needs such a concept to do in the institutions of project” , p. 516:project” , p. 1176and natural facts [Institutional Definition of Health:health condition if and only if, given our resources and situation, it would be best for our collective well-being if it were medicalized—that is, if health professionals and institutions played a substantial role in understanding, identifying, managing and/or mitigating it. In turn, health is a relative absence of health conditions (and concomitantly a relative lack of dependence upon the institutions of medicine) [A condition or state counts as a edicine) , p. 526.From here on, I will focus mostly on Kukla’s approach, because I find it more congenial to my own aims and I think it better demonstrates the problems with the definitions of illness at work in the PM approaches described above. Kukla begins their analysis by defining health and health conditions; then they define the concept of disease in relation to the concept of a health condition. According to Kukla, health conditions cannot be captured in purely social constructionist or scientistic terms; rather, in determining what counts as a health condition, one is constrained both by social al facts , p. 526.what would be best for “our collective well-being” [ought to medicalize it – that the condition is properly considered a health condition because it tends to interfere with human flourishing, and it would be a good thing to bring the tools of medicine to bear on it. With this normative dimension, Kukla’s definition can do the ethical work one needs it to do in the practice of medicine.Based on this account of health conditions, Kukla then offers the following institutional definition of disease: “Roughly, we can think of a disease as a repeatable, relatively stable bodily state or process that systematically causally contributes to one or more health condition” , p. 527.l-being” , p. 526.discover that a condition is properly considered a health condition by learning that it would be helpful to medicalize it; conversely, one can also discover that one has mistakenly medicalized conditions by learning that it is not helpful to bring the practice of medicine to bear on them. As an example of the latter, consider the case of homosexuality. Until recently, the American Psychiatric Association, the WHO, and a good deal of the wider public considered homosexuality a disease. The normative concepts of health and disease developed by Kukla and Powell & Scarffe allow one to state unequivocally that this call was terribly, horribly wrong. One learned that medicalizing and “disvaluing homosexuality is not rationally justified” because doing so “causes objective harm and injustice” [It is important to emphasize the realist implications of an institutional approach: it implies that one can justice” , p. 582.This, however, does not imply that what one learns in such cases are facts that exist apart from social practices; rather, whether one should medicalize some condition depends on “our resources and situation” , p. 525,should medicalize.7Sensitivity to the institutional setting, however, does not make judgments about which conditions one should medicalize any less normatively substantive. Such judgments represent all-things-considered views about the way the world is and what is best to think and do.With this institutional definition of disease in hand, I can now fulfil the promise I made at the start of this section, namely, to shed light on the more fundamental flaw that underlies the objections from the last section. To briefly recall those objections: (1) on the interpretation according to which Carel offers a phenomenology of illness as such, she presupposes the concept of illness her analysis aims to provide; (2) Toombs and Svenaeus each provide a putatively eidetic/ontological account of illness that fails to capture an enormous swathe of illness experiences; and (3) PM’s normalcy talk presupposes access to a distinction between the “normal” healthy body and its pathological state. The institutional definitions just discussed, I contend, show why these problems are inevitable.ought to count as illness experiences.should count as illness experiences, PM’s authors simply identify the common characteristics of experiences that they already consider illness experiences. Thus, their approach necessarily presupposes a normative understanding of illness – which their non-normative analyses of illness experiences cannot in principle provide.Illness, like disease, is a normative institutional concept. What counts as an illness experience depends on normative judgments regarding which experiences normative concepts that one cannot construct merely by identifying the constitutive features certain experiences share in common. Such concepts, rather, are already at work when these authors select the experiences they want to analyze. Some version of objection (2) is also inevitable – there will invariably be counterexamples to any purely phenomenological description of the common features of illness experiences, because one cannot determine what counts as an illness merely by describing experiential commonalities. What counts as an illness hangs on what one thinks is best to treat as an illness, which depends on one’s resources, situation, and a lot of practice-dependent contingent facts; and one has no reason to expect that these things will, by some miracle, strictly covary with a uniform set of experiential characteristics. For instance, one might think it best, all things considered, to treat the experience of food poisoning, major depression, and the stages of suffering that arise from emphysema as illness experiences. There is no reason to shoehorn such radically disparate experiences into some vague, putatively all-encompassing phenomenological “definition,” because, again, one needs to consider much more than experiential similarities when deciding which experiences should be classified as illness experiences. Try to force all illness experiences into a common phenomenological frame and one will inevitably face counterexamples, unless you fall back on a phenomenological “definition” so vague that it captures veritably any experience of discomfort. In short, one should not expect to find a core set of phenomenological features that all illness experiences share, because illness is not a descriptive but rather a normative concept designed to do important work in the institutions of medicine.This explains why the problems identified in objections (1) and (3) are inevitable – these authors take for granted access to concepts of illness and the “normal” body that they cannot explain nor justify, because illness and normality are There is something worth noting at this point: If this argument is correct, then PM has no real cause for embarrassment over its fundamental flaw. Why? Because the argument suggests that the flaw in question features in a wide range of positions in the philosophy of medicine, not just phenomenological ones. What Kukla and Powell & Scarffe argue, after all, is that most attempts to define disease overlook the need for a substantively normative definition. PM has essentially overlooked the same thing with respect to illness, and so has made a version of the same common mistake.tends to correlate with disease, one should “allow for the possibility of illness without disease, as everyday experience and not medical science has the final word in defining health or illness” [Now, some of PM’s authors might push back here, arguing that while the concept of disease might belong to the institutions of medicine, health and illness do not. For instance, Svenaeus argues that although illness illness” , p. 464.illness” , p. 17. should disvalue and medicalize in light of what is best for their collective wellbeing. Far from ignoring it, then, institutional approaches factor everyday experience into its deliberations about which bodily states one should disvalue and medicalize.In this context, however, insisting on the conceptual independence of health and illness would be a mistake for at least three reasons. First, when Svenaeus and Carel make these claims, their target is a kind of biomedical science that considers everyday experience irrelevant to the project of defining health-related concepts. Institutional approaches, however, conceptualize health conditions as conditions that those who depend on the institutions of medicine to promote, restore, and protect their health Secondly, an institutional approach does not conceive of medicine as existing apart from the lifeworld, like an alien observer objectifying human reality from the outside. Rather, it sees medicine as a practice within the lifeworld, organized around our shared interests in promoting, restoring, and protecting health. So, there is nothing intrinsically scientistic or “de-worlding” about thinking that what counts as an illness is partially determined by the social practice of medicine. That practice is part of the lifeworld.wrong. Hostage to an oppressive ideology, they misinterpreted their own experience. However, if a person can be ill in the absence of any health condition, then any gays and lesbians who internalized their oppression, felt alienated from their desires, and saw their experience as fitting Svenaeus’s description of ‘unhomelikeness,’ ipso facto suffered from an illness. And if meeting some phenomenological descriptions were all that mattered for determining whether an experience is an illness experience, then there would be no normative basis for respectfully suggesting that they were getting it wrong. In a word, such an approach would make the notion of illness absurdly relativistic. The stigmatized and self-loathing gay Texan teen who feels ‘unhomelike’ in his conservative Baptist milieu would suffer from an illness, while his ‘at-home-in-the-world’ California counterpart would be healthy. Indeed, any person struggling with life’s problems who sees herself in one of these phenomenological descriptions of illness could count herself ill. Thus, the suggestion that one ought to allow for illness in the absence of any health condition raises serious concerns about mistakenly medicalizing internalized oppression and pathologizing normal suffering. Let illness float free from its foundation in a health condition, and you forfeit the realist implications of the institutional approach.Finally, allowing for the possibility of illness in the absence of any health condition has significant downsides. Consider the case of homosexuality again. In the recent past, when homosexuality was widely considered a disease, many homosexuals viewed their sexual orientation as an illness. Now, most hold that homosexuality never was a disease and that those who saw their sexual orientation as an illness were One has good reason, then, to insist on an intrinsic link between the experience of illness and the presence of a health condition. But how should one conceptualize that link?One might be tempted to adopt and adapt a division of labor familiar from PM: one could allow philosophers like Kukla and Powell & Scarffe to define health, while claiming illness for phenomenology. Thus, one might conceive of illness as the aversive, flourishing-undermining bodily experiences that arise from a health condition. This division of labor would allow phenomenologists to focus strictly on first-personal analyses of the bodily experiences arising from health conditions, while other philosophers did the work of defining health, health condition, and disease.This version of PM would still count as an institutional account of illness because it would link illness intrinsically to the presence of some health condition, institutionally defined. So, for example, say two people experience comparable episodes of extremely low mood that could be described in experientially similar terms; however, one person has just suffered a bereavement and the other can point to no reason for her crushing feelings of despair. Experiential similarities notwithstanding, the phenomenologist who takes the institutional approach would only see the second case as an illness, because the institutions of medicine, appropriately, do not think it right or helpful to medicalize our initial depressive responses to bereavement. On this approach, then, illness is an institutional concept because what counts as an illness hangs on what counts as a health condition, institutionally defined.To be clear, on the approach just sketched, not all health conditions would involve illness. For example, one might consider shortness due to human growth hormone deficiency a health condition, but it would not involve illness, because any aversive bodily experiences associated with shortness are due to the social context and human cruelty, not shortness itself. Hence, the approach would also allow one to distinguish between illness and oppression, as illness would be understood as the aversive bodily experiences arising not from the stigmatization of a health condition but rather from the health condition itself.The proposed approach, however, will not quite work, because not every flourishing-undermining, aversive bodily experience that arises from a health condition is properly considered an illness. Imagine another scenario: two people have roughly the same flourishing-undermining aversive bodily experiences arising from two different health conditions, namely, an infection and an injury. Even if their aversive bodily experiences border on identical – say, pain and swelling in the affected limb that prevents them from engaging in their ordinary activities – only the aversive bodily experiences arising from the infection would count as illness experiences. Why? Because it is considered best, from the standpoint of the practice of medicine, to treat aversive bodily experiences arising from injury differently than one treats those arising from infection. Like the institutional definition of a health condition, the institutional definition of illness will be constrained by our social practices and by the reality of the body in its environment. Injuries and infections are different material realities that call for different tools, techniques, and treatment regimes. So, from the standpoint of the aims of the practice of medicine, there are good reasons to place them in different categories. This means that the tempting option discussed in the previous three paragraphs will not suffice. That is, one cannot define illness as the aversive bodily experiences arising from a health condition, because not all such experiences count as illness experiences.which subset of aversive bodily experiences would it be best to medicalize?Illness, then, cannot simply piggyback on the institutional definition of a health condition; instead, it will need its own institutional definition. In other words, one also needs to think through what is best, given one’s resources and situation, to regard as illness experiences. On this approach, then, one would think of illness experiences - in a rough, preliminary way - as those flourishing-undermining, aversive bodily experiences that arise from a health condition and that it would be best for our collective well-being to medicalize. Of course, this raises the question – Answering this question in detail is beyond the purview of the current discussion, but I have already specified the relevant subset somewhat: the relevant aversive bodily experiences must arise not from the social oppression of those with a health condition but rather from the health condition itself. Moreover, the relevant aversive bodily experiences must not arise from injuries, because, for institutional reasons, those cases belong to a distinct treatment category. And there is no doubt that many other flourishing-undermining, aversive bodily experiences arise from a health condition that, for institutional reasons, should not be treated as illness experiences. For example, it may be common for patients living with a serious health condition to experience flourishing-undermining anxiety associated with their condition; but one might think it best, all things considered, not to medicalize that dimension of their suffering, because, like grief in bereavement, anxiety in the face of one’s mortal frailty strikes one as appropriate.The larger point here is that working out precisely which subset of flourishing-undermining aversive bodily experiences one should count as illness experiences is not as straightforward as simply identifying which ones arise from a health condition. One must deliberate about which aversive bodily experiences it is best to consider illness experiences given the aims of the institutions of medicine and one’s resources, situation, and a host of practice-dependent contingent facts.a priori which bodily states and aversive bodily experiences ought to be medicalized.This implies that one should never consider one’s judgments about these matters final; rather, one should see them as at stake in the evolving institutions of medicine. After all, one can get these things wrong . Furthermore, what counts as an illness will evolve as medicine develops and new treatment possibilities emerge. The point is not to pin down, once and for all, which bodily states count as health conditions or diseases. The point is rather to bring home the fact that making such determinations calls for ongoing philosophical and ethical deliberation. Thus, one should treat the questions of which bodily states should count as health conditions (or diseases), and which aversive bodily experiences should count as illness experiences, as in principle open to future deliberation. And one should never presume that one can know Now, given their common link to health conditions, the reader might want to know how the appropriate medicalization constitutive of illness experiences differs from that constitutive of disease. This issue is also too complex to explore fully here, but if one compares my rough institutional definition of illness to Kukla’s rough institutional definition of disease, one can highlight a significant difference in focus in these two definitional projects. I define illness experiences, roughly, as flourishing-undermining, aversive bodily experiences that arise from a health condition and that it would be best to medicalize; and Kukla defines disease, roughly, as “a repeatable, relatively stable bodily state or process that systematically causally contributes to one or more health condition” , p. 527.But one must be clear that this difference in overall orientation in no way recapitulates the division of labor I rejected above, namely, that division wherein philosophers deal with disease with an exclusively third-personal approach and phenomenologists tackle illness with their strictly first-personal method. As I argued in section three, everyday first-person experiences will factor into deliberations about what counts as a health condition, and so such considerations will shape the project of identifying diseases. What is more, as was shown in section three, a strictly first-personal approach to illness experiences is out of the question, because one cannot divorce the concept of illness from the notion of a health condition. So, in terms of overall orientation, the task of medicalizing disease will focus more on bodily states and processes and their causal relation to health conditions, while the task of medicalizing illness will focus more on aversive bodily experiences that arise from health conditions. But this overall orientation will not reflect a neat and tidy division of labor. Both projects will require interdisciplinary conversations in the institutions of medicine that span everything from the body’s material reality to fine-grained details about patients’ lived experiences.Shifting focus back to the big picture, what does this discussion reveal about phenomenology’s place in the philosophy of medicine? I have argued that PM cannot furnish definitions of illness by merely identifying the constitutive features of putative illness experiences, because such a procedure necessarily presupposes the very concept it promises to provide. In making this argument, have I not, in effect, answered Sholl’s call to put phenomenology in its place by banishing it to some irrelevant backwater in the philosophy-of-medicine empire?all health-related concepts.To the contrary, the view I defend here in fact broadens the prevailing understanding of what phenomenology has to offer the philosophy of medicine. As has been shown, PM, by and large, has settled for a division of labor wherein biomedicine defines disease and phenomenology defines illness. But with an institutional approach, that division of labor collapses, and a normative, interdisciplinary approach becomes the default for defining Existential Flourishing. In that work, McMullin marshals phenomenological resources to argue that human beings always find themselves in the grips of claims from three normative domains – i.e., “the claims posed by the self, other, and shared world” [should count as illness experiences. Thus, when it comes to the institutional project of defining health-related concepts, phenomenologists need not sit on the sidelines, because they have a range of relevant resources par excellence to bring to bear on that task.10This creates at least two new openings for phenomenology to contribute to the philosophy of medicine. First of all, the institutional task of identifying which bodily states and aversive experiences one should medicalize requires normative resources to determine which states and experiences one ought to disvalue; and the phenomenological tradition boasts a wide variety of such resources.d world” , p. 68 –Moreover, PM can also carry on doing what it has done all along, namely, carefully describing the constitutive features of subjectivity at play in illness experiences. Now, however, they can do so without worrying about the objections raised in section two, nor the fundamental flaw highlighted in section three, because they no longer need to take a normative conception of illness for granted. Rather, they can restrict their analyses to aversive bodily experiences identified as proper illness experiences within a normative institutional framework.11Important work in PM is vulnerable to various objections because it suffers from a fundamental flaw: it presupposes a normative notion of illness that its analyses cannot in principle provide. This flaw, however, is by no means fatal. Instead of taking for granted a normative distinction between the normal and the pathological and limiting itself strictly to the task of describing illness experiences, PM could contribute to the normative institutional project of defining health-related concepts, including illness. Furthermore, with that normative conception of illness in hand, PM could continue its work with more confidence that its analyses target experiences properly considered illness experiences. In sum, this move would allow PM to preserve its most significant achievements, answer its critics, fix its fundamental flaw, and extend its reach in the philosophy of medicine.


Hermann Goering, one of the most prominent members of the Nazi Party and for many years the presumed heir to Adolf Hitler, had a well-known history of morphine addiction. By the last days of the Second World War, he was widely considered by his contemporaries to have been completely incapacitated by his addiction. In this article, we argue that Goering's addiction, while possibly present, was purposefully exaggerated by his rivals for political purposes. His habit of ingesting paracodeine pills may have been a crude form of opioid maintenance therapy, similar to that of methadone today. Ultimately, his history of substance abuse had no significant impact on his capacity, ruthlessness, and leading role in Nazi crimes. In 1945, as the remains of Nazi Germany collapsed in the last few days of the Second World War in Europe, Hermann Goering surrendered to Allied forces. The “No. 2 Nazi” . GoeringIn this article, we argue that nothing could be further from the truth. Goering was highly intelligent, capable, ruthless, dangerous, and fully complicit in Nazi crimes. His well-documented use of paracodeine pills  was possHermann GoeringSpeaking of her fourth-born child, Franziska Tiefenbrunn once announced, “Hermann will either be a great man or a great criminal!” . HistoryBorn in the German Empire of 1893  gymnasium with no covering other than a towel around his waist”  was shot through by inefficiency, corruption, and self-interest” [Inside the Third Reich [However, it is important to note that many of these recollections are directly tied to other prominent members of the Nazi Party. Far from being a united front behind Hitler, the National Socialist government was a vicious quagmire of rival groups and individuals endlessly jockeying for the power that proximity to the nterest” . Goeringnterest” . Goeringnterest” . As his nterest”  declinednterest” . In thisnterest”  and playnterest” . In suchnterest”  - emphasrd Reich . Speer, rd Reich . During rd Reich . Perhapsrd Reich . Even thrd Reich . The SS rd Reich . After srd Reich . Inside the Third Reich: “Goering was an easy mark…” [Ultimately, it appears that many of these rumors may have been deliberate falsifications or exaggerations meant to undermine Goering’s status in the upper ranks of the Nazi Party. As Speer himself admits iny mark…” . By the y mark…” .Goering himself was aware that his history of morphine addiction was a potential political liability and had his medical records from Långbro destroyed in the early 1930s. However, by this point, the secret was already so well-known that even the foreign diplomatic corps was aware of his history . “Well aUpon interviewing Goering at Nuremberg, Kelley was doubtful that the Nazi was even truly addicted to his paracodeine pills. Kelley maintained that Goering “had the paracodeine pill habit, in the way that many people have the cigarette habit. It was the need to do something with his hands and mouth, to perform an act he was accustomed to, and liked doing” . From 19Reichsmarschall’s “habit” [Kelley estimated that Goering’s daily dose of 100 paracodeine pills in 1945 was equivalent to 3-4 grains of morphine daily . Given tHowever, these data are also suspect - while Kelley reported Goering took approximately 100 pills a day, his original captor, Colonel Andrus at Ashcan Prison, reported earlier that Goering “has been in the habit of taking 20 pills per dose, two doses a day” . Andrus’Some researchers have suggested that Kelley deliberately downplayed Goering’s addiction due to “the American justice system and its requirement that the condemned must appear sound of body and mind before going to the gallows… it is not conclusive that Goering was cured at all” . Leon GoWhile Goering’s high daily dose  in 1945 implies a morphine addiction, Kelley reports that it was remarkably easy to wean Goering off his paracodeine pills, simply by “cutting down the dosage each day until no more drug was allowed” . GoeringThe “humane treatment” that Goering received during his incarceration by Allied forces  was a grGoering’s morphine dependencyFrom this evidence, we suggest that Goering did not suffer from an opioid addiction at the time of his capture, but rather an opioid dependency. Although Ohler states that when captured, Goering possessed thousands of pills of Eukodal (an early form of oxycodone) , Kelley DHC is one of the weaker agents used to treat pain and is similar in efficacy to tramadol. With a short half-life of only several hours, it only has a weak binding affinity for the mu-opioid receptor and is most effective in the form of dihydromorphine, one of its metabolites . During A 2020 systematic review of DHC’s potential for opioid maintenance therapy examined three separate trials in five articles and cautiously concluded that DHC may be comparable to methadone for the maintenance treatment of opioid addiction. While the researchers admitted the review was undermined by lower-quality evidence , the posWe propose the following theory: in 1937, during the busiest days of his career , GoeringThe current literature on addiction medicine supports this claim. Medication-assisted treatment for opiate dependency is significantly associated with better outcomes, although the data on periods for longer than one year are still lacking . A 2015 Even if this theory is incorrect, it is our opinion that it is extremely dangerous and foolhardy to simply write off Hermann Goering as a drug addict. Not only does this provide a potential excuse for his reprehensible actions before and during the war , but it Hermann Goering is a complex figure. A war criminal and violent psychopath, he nonetheless had a powerful charisma capable of charming even his captors. We theorize that he appears to have stumbled across a means of treating his opioid cravings through the use of paracodeine pills. His capable and intelligent behavior during the trial and his lack of withdrawal symptoms suggest that stories of his morphine addiction during the Second World War were massively overexaggerated, due to both the machinations of his rivals within the ranks of the Nazi Party and his growing political irrelevancy as the Luftwaffe’sdefeats mounted. Ultimately, we conclude that Goering’s dependence on his paracodeine pills actually helped him ward off the cravings for stronger opioids, allowing him to be a fully capable actor in Nazi crimes. He was highly capable, intelligent, and fully complicit in the horrors of the Third Reich. Attributing any of his actions and behavior to morphine addiction is a dangerous oversimplification of one of the most ruthless and dangerous psychopaths of the 20th century.


The technique of thoracic ultrasound is living through a progressive rise in clinical routine.After initial skepticism due to the impossibility of studying lung parenchyma with the available ultrasound machines, the increasing evidence and the growth of ultrasound technology have permitted the development of ultrasound use in every application in respiratory care.In pleural diseases, ultrasound has become the gold standard in the management of pleural effusions, as a diagnostic tool and as a guide for interventional procedures .The study of diaphragmatic features and motions, after the evaluation of normal features , is beinThe ultrasound assessment of lung diseases is continuously growing; today, lung ultrasound is a fundamental tool to diagnose and follow-up pneumonia  and has However, the technique has limits, given the impossibility of ultrasound waves to cross the ventilated  peripheral air spaces.From a search on Pubmed for the terms “thoracic ultrasound”, “chest ultrasound”, “lung ultrasound”, “pleura ultrasound”, and “diaphragm ultrasound” we obtained the number of papers written yearly since 1945. This number is progressively increasing, reaching a huge peak of more than 21,000 total papers in 2021 and 2022, thanks in part to COVID-19-related research .This literature jungle has evolved from case reports and descriptions of artifacts and signs for lung study protocols and clinical trials, up to physical models to explain the origin of different vertical artifacts  and studSo, what do we need today?Much has been written about lungs and pleura, but the study of the whole respiratory muscular system and the global mechanics of the chest wall have yet to be fully explained and described.Moreover, all the known notions must be put in order, to finally assess the correct terminology and establish an appropriate and universal methodology. Thoracic ultrasound escapes from the pure “diagnostic imaging” because its features do not permit a precise diagnosis when only considering the obtained images. In fact, it becomes wholly the responsibility of an operator, who needs “good eyes” to correctly interpret the image, “good hands” to adequately guide the probe and create a good quality image, and finally a “good mind”, to understand the clinical situation of the patient and integrate clinical data with the procedure, to obtain a final, accurate diagnosis. That is art.


Japan’s government aims to promote the linkage of medical records, including medical genomic testing data and personal health records (PHRs), via cloud computing (the cloud). However, linking national medical records and using them for health care research can be controversial. Additionally, many ethical issues with using cloud networks with health care and genome data have been noted. However, no research has yet explored the Japanese public’s opinions about their PHRs, including genome data, being shared for health care research or the use of the cloud for storing and analyzing such data. Therefore, we conducted a survey in March 2021 to clarify the public’s attitudes toward sharing their PHRs, including genome data and using the cloud for health care research. We analyzed data to experimentally create digital health basic literacy scores (BLSs). Our results showed that the Japanese public had concerns about data sharing that overlapped with structural cloud computing issues. The effect of incentives on changes in participants’ willingness to share data (WTSD) was limited. Instead, there could be a correlation between WTSD and BLSs. Finally, we argue that it is vital to consider not only researchers but also research participants as value cocreators in health care research conducted through the cloud to overcome both parties’ vulnerability. For example, Garret et al. pointed out that it may not be possible to successfully establish nationwide electronic medical records systems if such systems ignore the traditional moral orders that govern the generation, ownership, use, and responsibility for medical records2. Another example is the care.data program from England’s National Health Service (NHS), which adopted a scheme in which medical record data could be collected monthly and used for health care and research unless the patient specifically opted out3. However, care.data was shut down in 2016 because of public opposition5. Some of the many reasons for its failure were a lack of communication to the public about the project, a lack of transparency, the failure of the opt-out scheme, people’s aversion to selling their data to for-profit companies, concerns about the impact of large-scale data collection and sharing on patient privacy, the utilization of personal health data conflicting with the individual’s moral values, and a lack of social license6. For the purposes of the current study, “[a] social licence in the context of data-intensive health research refers to the non-tangible societal permission or approval that is granted to either public or private researchers and research organizations beyond compliance with laws and regulations”7.There have been controversies with linking national electronic health record systems and using them for health care improvement and research in countries such as in England, Australia, and the Netherlandshttp://www.scot-ship.ac.uk) is an example of a program recognizing the importance of public engagement and understanding. SHIP is a research platform designed for collecting, managing, distributing for research use, and analyzing 30 years’ worth of electronic patient records throughout Scotland. The SHIP system works across organizational boundaries to nationally link health and nonhealth data while protecting patient confidentiality. SHIP recognizes the importance of public trust in data handling and in addressing ethical concerns8. Therefore, its core projects involve public engagement activities with various objectives, such as understanding Scottish citizens’ preferences, interests, and concerns regarding sharing health data for research9.On the other hand, the ScottisH Informatics Program , personal health records (PHRs) linked to personal data, information in medical and long-term care settings, and databases13.Japan has also attempted to utilize health care data. In 2009, the National Database of Health Insurance Claims and Specific Health Check-Ups of Japan (NDB) was developed by the Japanese government to cover almost all health insurance schemes14. Cloud service companies collect various types of data by employing sophisticated matching algorithms in the case of an accident or other incident, which often requires highly detailed personal information to ensure accountability. However, it is difficult for users to recognize what kind of data is being recorded, and they rarely know what data will be disclosed if an incident occurs. Furthermore, users sometimes do not understand which providers store and share their data because of the complexity of cloud interconnections.As the scale of secondary databases becomes enormous, cloud computing becomes essential for effective data management and processing. However, many ethical issues related to cloud computing (the cloud) have been pointed out in the literature. For instance, the cloud consists of complex interconnections between multiple services provided by different vendors and an equally complex network of people, blurring the boundaries of responsibility and accountability15.Additionally, cloud users inevitably relinquish control over their data by placing it on a provider’s server, making it difficult to know what data will be used for what purposes and leading to issues surrounding data control and ownership. Data are entrusted to cloud providers, so the employees of provider organizations can access the data at any time and from any location. Hence, data subjects’ ability and right to control their data may be limited or even violated. Even though it is important to track users’ activities on the cloud, these data can be exploited and misused if not properly protected. Therefore, Murphy and Rocchi pointed out that cloud users are the most vulnerable stakeholders in the complex web of interactions that cloud services create16. Nakada et al. examined the public attitudes that focus on the secondary uses of patient records for pharmaceutical companies’ activities, and in the study, the patient records used by the research institutes were beyond their scope17. Asai et al. also surveyed public attitudes toward the secondary use of medical data and samples for research without specific informed consent by the focus group; however, it did not specify what entities, such as research institutes or private companies, would utilize the medical records data for research18. While recognizing the valuable lessons from previous studies, we found the necessity of adopting a different approach in our survey. Therefore, we carried out a survey to identify public attitudes toward cloud computing and willingness to share PHRs and genome data for health care research in Japan. In this study, we defined PHRs as medical records, genomic testing, medical check-up, smartphone health application software (app), and wearable device health data.To further enhance medical development, it is necessary to promote the utilization of PHRs and gain public trust and willingness to share such information. Especially for Japan, where the government has begun to push for digital transformation strongly, knowing the trust and willingness of the public is essential for risk communication. However, as far as we have found, there has been no research on what the Japanese public thinks about their PHRs, including genome data, being shared for health care research and the use of the cloud. For instance, the Study Group on Utilization of Health, Medical, and Long-Term Care Information in Japan conducted a survey to identify issues with the appropriate diffusion and development of private PHR services, but their survey was not related to the research use of PHRsBased on the research results, we discuss here the current status and challenges of data sharing via the cloud and what the public deems necessary for safe data sharing in health care research. It is noteworthy that our study is also unique in regard to examining changes in people’s willingness to share data (WTSD) and PHRs for health care research, with a focus on digital health basic literacy scores (BLSs), to analyze the public’s perception of using points redeemable for goods and services as an incentive.The main purpose of this study was to clarify the Japanese public’s attitudes and values toward sharing PHRs, including genome data, for health care research by quantifying those attitudes. Therefore, we commissioned a research company  to recruit Japanese participants from its database . We asked those who agreed to participate to complete the anonymous online survey, and we collected data between March 22 and 24, 2021.19, Hooker20, Milo21, and their respective colleagues tried to create instruments assessing patients’ genetic literacy in medicine. Abrams et al. 22 created instruments to assess and characterize the public’s genetic literacy in the United States. Bowling23 developed a genetic literacy assessment instrument for undergraduate students. Sanderson et al. 24 developed a questionnaire to measure knowledge of whole-genome sequencing among patients and other stakeholders, such as research participants, the public, students, and health care professionals. In Japan, Ishiyama et al. 25 developed a quantitative scoring method to analyze the public knowledge and perception of genomic research. Subsequently, Hishiyama et al. 26 modified this method to examine the relationship between regulations regarding and the utilization of genetic information in medicine and research; however, PHRs in general were outside their surveys’ research scope. Although there is much to be learned from these studies, we could not find established methods for quantitatively assessing the public’s recognition and knowledge of digital health basic literacy or the relationship between the public’s perceptions of and willingness to share the PHRs included in genome data in the context of health care research. Thus, we experimentally created BLSs to examine the relationship between participants’ BLSs and their perceptions of data sharing and the use of the cloud for health care research.In previous studies, many efforts have been made to develop genetic literacy assessment tools or methods. For instance, ErbyReferencing previous studies, we developed a 40-question online survey to assess participants’ recognition and knowledge of six selected terms: genome, genomic medicine, cloud computing, AI, app, and wearable device Table . To deteWe conducted descriptive statistical and binomial logistic regression analyses to explore the relationships among demographic characteristics, BLSs, and WTSD. Regarding the latter, the objective variable was a binary value for the BLSs . The explanatory variables were gender, age, educational background, annual household income, occupation, marital status, and history of outpatient visits to medical facilities in the previous year. Regarding age, we selected the value for those in their 40 s as the baseline because the majority of the respondents were in their 40 s. In terms of annual household income, we set “more than 3 million JPY to less than 5 million JPY” as the baseline for comparison because it included the median household income in Japan. Regarding educational level, we chose junior and senior high school graduates as the baseline to reflect Japan’s compulsory education system.t test or one-way analysis of variance (ANOVA) to confirm the differences.We used IBM® SPSS® version 27.0.1.0. for the statistical analysis. We calculated the mean, median, and standard deviation (SD) of the BLSs and then performed a Ethical Guidelines for Medical and Biological Research Involving Human Subjects issued by the three Japanese ministries27. However, we followed the research ethics guidelines of the Japan Sociological Society and designed the questionnaire so that the survey participants could easily refrain from answering questions, thus reducing the burden associated with answering the questions.No ethical review was required for our study in Japan because it was outside the scope of the n = 5830), and Table n = 28) were excluded from the analysis because there were not enough of them to ensure statistical significance. Certain groups were asked additional questions. Questions regarding genomic data usage were addressed to direct-to-consumer (DTC) genetic testing consumers  and those interested in consuming DTC genetic testing services . Similarly, we only addressed questions about accessing health data from wearable devices  to participants who indicated using such devices .We conducted an online survey to examine public attitudes toward the use of PHRs, including genome data and the cloud for health care research. The response rate was 20.4% . For the demographic characteristics, those in socially disadvantaged positions tended to have lower mean BLSs; such respondents included women , those with low annual household incomes , those with less education , and those with unstable occupations . Additionally, those who knew about DTC genetic testing services had a higher mean  than those who did not  = 39.299, p < 0.001).The descriptive statistics for the digital health BLSs were mean 9.6, median 10.0, and SD 4.5 for all respondents Table . StatistFigure We asked the respondents about their views of the cloud itself. Table p < 0.001; Table Regarding item a, the respondents were more concerned about their transaction records with financial institutions (74.8%), their purchase histories (64.1%), and their travel histories (60.0%) than with their PHRs being handled via the cloud, that is, their medical record data (54.2%), genome data 53.7%), medical check-up data (51.2%), smartphone health app data (48.9%), and health data from wearable devices (45.7%). For all types of data, the mean BLS for respondents who answered that they were “unconcerned” about their data being handled via the cloud was statistically significant and higher than the mean for respondents who answered “concerned” or “I don’t know” . Furthermore, the mean BLS for those who selected “agree” (≧10.93) for all concerns listed in the questions was significantly higher than the mean for respondents who selected “disagree” (≧8.99) or “I don’t know” . In short, the mean BLS values for both the respondents who recognized benefits and those concerned about the cloud were significantly higher than those for the other respondents.Notably, the mean BLS for respondents who selected “agree” (≧11.47) for all advantages listed in the questions was significantly higher than the mean for respondents who selected “disagree” (≧8.37) or “I don’t know”  and a high-BLS group (10 ≦ BLS ≦ 18). We then conducted a binominal logistic regression analysis. The results showed that the high-BLS group’s BLSs ranged from 11.0 to 18.0 , whereas the low-BLS group’s BLSs ranged from 0.0 to 14.0 . The respondents with “5 million JPY to less than 8 million JPY”  and those “8 million JPY to less than 20 million JPY”  tended to be in the high-BLS group, unlike those with “3 million JPY to less than 5 million JPY.” Regarding educational level, the OR for “occupational school or junior college”  was larger than that for “junior or senior high school.” Notably, the OR for “university or graduate school” was more than twice  that for “junior or senior high school”. Furthermore, those who had a history of outpatient visits had a statistically significant tendency to be in the high-BLS group: the values for “outpatient visit within the past year”  and “currently receiving outpatient care at a hospital”  were higher than those for “no history of outpatient visits”.Gender, age group, annual household income, education level, occupation, marital status, and history of outpatient visits were significantly associated with a tendency to be in the high-BLS group Table . For insAlthough we considered five types of PHR data, including app and wearable device data, we present the results for medical record data, genomic testing data, and medical check-up data. In Japan, medical records sometimes contain medical test data, but medical check-ups do not. The respondents’ WTSD differed based on which organization used their data. In addition, their WTSD differed according to whether they were in the high- or low-BLS group. Figure When RRPs were awarded, an increase in the percentage of WTSD was observed for all types of data in both BLS groups. The supplementary material includes the results without differentiating between high and low BLS; it shows that regardless of the data type, the number of respondents who were WTSD increased with awarded RRPs, but the increase only reached 8.7%, whereas in the low-BLS group, the highest increase was observed at 9.1% when there were RRPs, which was the case for sharing genomic testing data with a research institute. In the high-BLS group, the largest increase was 10.2% for the use of medical record data by the acquiring institution; however, in other cases, the increase was less than 8.5%.Overall, in both the high- and low-BLS groups, the WTSD with private companies was lower than in cases where data were shared with acquiring institutions or research institutes, regardless of whether RRPs were awarded.Finally, the number of respondents who answered “I don’t know” regarding whether they would share data with organizations for research without honoraria was higher in the low-BLS group, especially in the case of medical record data, which was at approximately 40%, regardless of the organization. However, in the high-BLS group, the maximum percentage was 20.9%.Although the use of BLSs was a pilot method for digital health basic literacy assessment, it helped in understanding the attitudes of the general Japanese public. The BLSs identified a high level of recognition of certain terms, including genome and the cloud, but these terms were not well understood. Therefore, researchers need to be careful about the usage of technical terms when seeking informed consent or creating opt-out forms because even highly recognized terms may not be actually understood. These results also suggest that some support is needed to improve the general public’s digital health literacy, especially for those with low BLSs, in Japan.However, the public’s perceptions of the advantages and challenges of the cloud indicated that those with a high mean BLS were both aware of the advantages of the cloud and simultaneously more concerned about it than others were. This shows that improving BLSs or knowledge does not necessarily alleviate concerns.The survey results also highlighted that the primary concerns about using PHRs for health care research were leakage, unauthorized data use, and unrecognized use of data. The participants might have been more concerned about breaches of confidentiality or the potential abuse or exploitation of their data. Therefore, it is important to build trust among all stakeholders, to provide opportunities for research participants and the public to learn about digital health and data-intensive health care research and be empowered. This is particularly pertinent to Japan’s data health reforms.28. Therefore, despite the substantial benefits for researchers in regard to using the cloud, the benefits are less evident to those research participants who only provide data.The issues of data leakage, unauthorized data use, and unrecognized data use overlapped with cloud-related issues. For the research participants, the concerning factors with data sharing for medical research and data deposition in the cloud may be the difficulty or inability of controlling PHR data once it is shared. This can be more prominent in regard to the secondary use of data for future health care research. Additionally, researchers’ collaborations with for-profit companies could raise concerns regarding the ambiguity of the companies’ roles, the commercialization of research, and the use of data beyond the terms of the partnerships30. This may also be the case for incentives and WTSD in data-intensive health care research. Our research has indicated that there could be a correlation between high and low BLS and WTSD, but further research is necessary.Concerning the relationship between incentives and WTSD, we found that WTSD varied significantly according to the BLS. The high-BLS group was more positive about providing data for health care research than the low-BLS group. Interestingly, regardless of the BLS group, the respondents who were interested in DTC genetic test services tended to be more positive about sharing their genomic testing data than other types of data for health care research. Conversely, incentive-induced changes in WTSD were mostly less than 10%, implying that simply announcing incentives would most likely not lead to a significant increase in the number of registrants. Some previous studies have shown that financial incentives have a low likelihood of inducing research participants to enroll in clinical trialsAdditionally, we would like to emphasize that in cloud-based genomic research, research participants are even more vulnerable stakeholders than cloud users, even though Murphy and Rocchi identify the latter as the most vulnerable. Under Japanese regulations, genome data may constitute personal information even if identifiers are removed. Therefore, certain genome data pertaining to research participants will be stored by researchers as research participants’ personal information in the cloud. In this case, research participants lose a substantial amount of control over their data because they do not have any means of directly controlling it; they must rely on researchers and cloud vendors.It must be noted that both cloud vendors and researchers, as data stewards, are responsible for keeping activity logs and personal information regarding the use of data obtained from research participants. In this sense, there is an existing structure in cloud-based research that requires the researcher to provide data to the cloud vendor. In other words, a two-tiered structural vulnerability arises in certain types of genomic research using the cloud with respect to the two parties whose personal information is registered in the cloud, and both researchers and research participants are vulnerable consequences from the data platform industry, which has more power than any one nation in the data business.15. A prosumer is a consumer and producer simultaneously, as posited by Alvin Toffler; however, some scholars have defined the term prosumer in different ways32. For instance, Prahalad and Ramaswamy proposed “cocreation” activities that include dialog, access, risk/benefits, and transparency as the basis for interaction33. We agree that “cocreation” would be a fitting key value in health care research because data subjects are subjects, not objects. Although the data stewardship of researchers is often espoused in health care research, it has been pointed out that the role of stewardship can be ambiguous for patients and the general public due to the complexity of cloud utilization in health research28. Therefore, we argue that it is vital to consider patients and the public as “value cocreators” in data-intensive health care research. In this context, patient and public involvement/engagement would help build trust among cloud providers, researchers, and the public, thus overcoming this vulnerability.One of the key factors for successful genomic research using the cloud may be overcoming this vulnerability to diminish public concern and help build trust in research. Some scholars, including the European Data Protection Supervisor, have introduced the notion of the “prosumer” as one of the pillars of new digital ethics to overcome concerns about new technologies such as the cloud and empower users of such technologiesThe present study has several limitations. The survey did not directly ask about attitudes regarding the use of cloud computing in the context of health care research. Additionally, we did not set a specific number of redeemable points. Thus, each participant may have perceived “points” differently. Moreover, because this survey was conducted with Japanese participants, further research is needed to determine whether the same conclusions can be drawn for non-Japanese participants. Finally, a separate ethical discussion is needed regarding exchanging private data for rewards.Supplement