The concepts of disease, illness and sickness capture fundamentally different aspects of phenomena related to human ailments and healthcare. The philosophy and theory of medicine are making manifold efforts to capture the essence and normative implications of these concepts. In parallel, socio-empirical studies on patients’ understanding of their situation have yielded a comprehensive body of knowledge regarding subjective perspectives on health-related statuses. Although both scientific fields provide varied valuable insights, they have not been strongly linked to each other. Therefore, the (...) article aims to scrutinise the normative-ethical implications of patient perspectives in building a bridge to the empirical ethics debates. Three potential fields of tension between the illness and the disease perspective are presented. Consequently, findings from empirical research examining patient perspectives on illness are displayed and the practical implications and associated ethical issues which arise are discussed. This leads to the conclusion that an explicit and elaborate empirical-ethical methodology is needed to deal appropriately with the complex interaction between patients’ views and the medico-professional view of disease. Kon’s four-stage model of normative-empirical collaboration is then applied against the background of empirical data on patient perceptions. Starting from this exemplary approach, the article suggests employing empirical-ethical frameworks for further research on the conceptual and normative issues, as they help to integrate perspectives from the philosophy of medicine with socio-empirical research. The combination of theoretical and empirical perspectives suggested contributes to a more nuanced discussion of the normative impact of patients’ actual understanding of illness. Further empirical research in this area would profit from explicitly considering potential ethical issues to avoid naturalistic fallacies or crypto-normative conclusions that may compromise healthcare practice. Vice versa, medico-theoretical debates could be enriched by integrating subjective views of those people who are immediately affected. (shrink)

Many healthcare practices expose people to risks of harmful outcomes. However, the major theories of moral philosophy struggle to assess whether, when and why it is ethically justifiable to expose individuals to risks, as opposed to actually harming them. Sven Ove Hansson has proposed an approach to the ethical assessment of risk imposition that encourages attention to factors including questions of justice in the distribution of advantage and risk, people’s acceptance or otherwise of risks, and the scope individuals have to (...) influence the practices that generate risk. This paper investigates the ethical justifiability of preventive healthcare practices that expose people to risks including overdiagnosis. We applied Hansson’s framework to three such practices: an ‘ideal’ breast screening service, a commercial personal genome testing service, and a guideline that lowers the diagnostic threshold for hypertension. The framework was challenging to apply, not least because healthcare has unclear boundaries and involves highly complex practices. Nonetheless, the framework encouraged attention to issues that would be widely recognised as morally pertinent. Our assessment supports the view that at least some preventive healthcare practices that impose risks including that of overdiagnosis are not ethically justifiable. Further work is however needed to develop and/or test refined assessment criteria and guidance for applying them. (shrink)

Breast cancer screening aims to help women by early identification and treatment of cancers that might otherwise be life-threatening. However, breast cancer screening also leads to the detection of some cancers that, if left undetected and untreated, would not have damaged the health of the women concerned. At the time of diagnosis, harmless cancers cannot be identified as non-threatening, therefore women are offered invasive breast cancer treatment. This phenomenon of identifying non-harmful cancers is called overdiagnosis. Overdiagnosis is morally problematic as (...) it leads to overall patient harm rather than benefit. Further, breast cancer screening is offered in a context that exaggerates cancer risk and screening benefit, minimises risk of harm and impedes informed choice. These factors combine to create pathogenic vulnerability. That is, breast cancer screening exacerbates rather than reduces women’s vulnerability and undermines women’s agency. This paper provides an original way of conceptualising agency-supporting responses to the harms of breast cancer overdiagnosis through application of the concept of pathogenic vulnerability. (shrink)

‘Disease interception’ describes the treatment of a disease in its clinically inapparent phase and is increasingly used in medical literature. However, no precise definition, much less an ethical evaluation, has been developed yet. This article starts with a definition of ‘disease interception’ by distinguishing it from other preventions. It then analyses the ethical and social implications of the concept in light of the four principles of medical ethics by Beauchamp and Childress. The term ‘disease interception’ refers to a form of (...) secondary prevention applied in a short interception window intended to prevent a preclinical disease from developing further. We propose the definition ‘early and targeted secondary prevention by treatment’. The ethical evaluation of the concept shows that while it promises to be beneficial, it raises a number of ethical and social challenges regarding patient autonomy and justice. In order to ensure decision-making that respects patient autonomy, commercially motivated metaphors such as ‘disease interception’ should make way for precise definitions. Future research should not only focus on how to detect clinically inapparent diseases but also on the ethical question, when this is justifiable and what consequences it has for the individual and society as a whole. (shrink)

Overdiagnosis and disease are related concepts. Widened conceptions of disease increase overdiagnosis and vice versa. This is partly because there is a close and complex relationship between disease and overdiagnosis. In order to address the problems with overdiagnosis, we may benefit from a closer understanding this relationship. Accordingly, the objective of this article is to elucidate the relationship between disease and overdiagnosis. To do so, the article starts with scrutinizing how overdiagnosis can explain the expansion of the concept of disease. (...) Then it investigates how definitions of disease address various challenges of overdiagnosis. The article specifically investigates recent attempts to clarify the relationship between the concepts of disease and overdiagnosis. Several shortcomings are identified and lead to a closer analysis of overdiagnosis in the diagnostic process. Contrary to recent contributions to the field, it is argued that cases of overdiagnosis are not cases of disease. They are non-verified labelling of disease. It is revealed how overdiagnosis establishes an unwarranted link between indicative phenomena, such as polyps or cell changes, and harm, and thereby generates a link to disease. One implication of this study is that we should stop attributing disease language to indicative phenomena. That is, we should stop calling it “cancer screening” when we are actually searching for polyps. Another implications is that we should strive for scientific progress in differentiating phenomena that are of negative value to us from those that are not. In overdiagnosis we diagnose something that is not disease: it is over-diagnosis. (shrink)

Science and technology have vastly expanded the realm of medicine. The numbers of and knowledge about diseases has greatly increased, and we can help more people in many more ways than ever before. At the same time, the extensive expansion has also augmented harms, professional responsibility, and ethical concerns. While these challenges have been studied from a wide range of perspectives, the problems prevail. This article adds value to previous analyses by identifying how the moral imperative of medicine has expanded (...) in three ways: (1) from targeting experienced phenomena, such as pain and suffering, to non-experienced phenomena (paraclinical signs and indicators); (2) from addressing present pain to potential future suffering; and (3) from reducing negative wellbeing (pain and suffering) to promoting positive wellbeing. These expansions create and aggravate problems in medicine: medicalization, overdiagnosis, overtreatment, risk aversion, stigmatization, and healthism. Moreover, they threaten to infringe ethical principles, to distract attention and responsibility from other competent agents and institutions, to enhance the power and responsibility of professionals, and to change the professional-beneficiary relationship. In order to find ways to manage the moral expansion of medicine, four traditional ways of setting limits are analyzed and dismissed. However, basic asymmetries in ethics suggest that it is more justified to address people’s negative wellbeing (pain and suffering) than their positive wellbeing. Moreover, differences in epistemology, indicate that it is less uncertain to address present pain and suffering than future wellbeing and happiness. Based on these insights the article concludes that the moral imperative of medicine has a gradient from pain and suffering to wellbeing and happiness, and from the present to the future. Hence, in general present pain and suffering have normative priority over future positive wellbeing. (shrink)

Successful public health interventions have, in recent decades, improved the health of the working classes in significant ways across much of the western world. Nevertheless, here, I argue that populist electoral breakthroughs over the last decade may be considered side-effects of ‘successful’ public health policies: crucially, the claim is that those political side-effects resulted because of—rather than despite—the health-measured success of those public health interventions.

I argue that greater attention to human agency and normativity in both researching and practicing service improvement may be one strategy for enhancing improvement science, illustrating with examples from cancer screening. Improvement science tends to deliberately avoid explicit normativity, for paradigmatically coherent reasons. But there are good reasons to consider including explicit normativity in thinking about improvement. Values and moral judgements are central to social life, so an adequate account of social life must include these elements. And improvement itself is (...) unavoidably normative: it assumes that things could and should be better than they are. I seek to show that normativity will always be implicated in the creation of evidence, the design of programs, the practice of healthcare, and in citizens’ judgements about that care, and to make a case that engaging with this normativity is worthwhile. (shrink)

Overdiagnosis is an emerging problem in health policy and practice: we address its definition and ethical implications. We argue that the definition of overdiagnosis should be expressed at the level of populations. Consider a condition prevalent in a population, customarily labelled with diagnosis A. We propose that overdiagnosis is occurring in respect of that condition in that population when the condition is being identified and labelled with diagnosis A in that population ; this identification and labelling would be accepted as (...) correct in a relevant professional community; but the resulting label and/or intervention carries an unfavourable balance between benefits and harms. We identify challenges in determining and weighting relevant harms, then propose three central ethical considerations in overdiagnosis: the extent of harm done, whether harm is avoidable and whether the primary goal of the actor/s concerned is to benefit themselves or the patient, citizen or society. This distinguishes predatory, misdirected and tragic overdiagnosis; the degree of harm moderates the justifiability of each type. We end with four normative challenges: methods for adjudicating between professional standards and identifying relevant harms and benefits should be procedurally just; individuals, organisations and states are differently responsible for addressing overdiagnosis; overdiagnosis is a matter for distributive justice: the burdens of both overdiagnosis and its prevention could fall on the least-well-off; and communicating about overdiagnosis risks harming those unaware that they may have been overdiagnosed. These challenges will need to be addressed as the field develops. (shrink)