We are grateful for the thoughtful attention the commentators and editors have given our paper. They raise many substantive points that warrant a response, but for reasons of journal space our reply must be brief. In our paper, we argue for an amended hybrid account of ‘disease’ in human medicine that takes normative ethics seriously, guards against pernicious classifications of disease and reconnects the concept with the goals of healthcare institutions in which disease diagnosis is embedded. Carel and Tekin, in (...) their respective pieces, raise issues about the objectivity and effective operationalisation of our account, Agar makes an ‘evolutionary’ case for disease concept eliminativism in mental health, and Wakefield and Conrad contend that our proposed modification to the harmful dysfunction account is unnecessary and undesirable. We will respond to each in turn. The rational moral justification component of our account raises difficult moral epistemological questions regarding which reasons are the weightiest ones and who should be allowed to participate in the rational justification process (though so too, we would note, does much bioethical inquiry). Carel suggests that inevitable disagreement on this point undermines the alleged objectivity of our proposal. We agree with Tekin, however, that this is a feature of our account rather than a bug. What constitutes a good reason in moral deliberation is a question that goes to the very philosophical foundation of ethics (see1 for a recent discussion); but disagreement over which reasons are the weightiest ones does not prevent ethicists and policy makers from objectively assessing the strength of moral arguments by evaluating their empirical adequacy and logical structure, and this can take us a long way toward adjudication. The fact that rational justification has been used to support immoral practices and institutions does not warrant abandoning a reason-based approach to ethics any more than …. (shrink)

Russell Powell and Eric Scarffe1 are pluralists about disease. They offer their thickly normative account to meet the needs of doctors, but they allow that a different concept of disease might work better for zoologists. In this commentary, I grant that Powell and Scarffe’s thickly normative evaluation of biological dysfunction works well in many medicinal contexts. Powell and Scarffe respond effectively to eliminativists—we should retain the concept of disease. But the paper’s pluralism and focus on the specific needs of institutions (...) should permit us to eliminate the notion of disease from domains for which the historical grounding of their selected effects account of function are contrary to therapeutic goals. One such domain is mental health. I found Powell and Scarffe’s rejection of Boorse’s dispositional account of biological function persuasive—the selected effects account of function is a superior fit for biologists’ use of the term. But the historical nature of this concept is, at best, a distraction from the task of morally evaluating the many ways in which …. (shrink)

Educators who start a philosophy of medicine or medical ethics class with a philosophical discussion on the definition of basic concepts in medicine, such as health and disease, might relate to this anecdotal account. Students initially find the topic engaging because of the ubiquity of the concept of disease regulating not only their direct encounter with health-related contexts, for example, when veterans returning to school receive accommodations after being diagnosed with Post Traumatic Stress Disorder (PTSD), but also their social world, (...) say, when they get in an argument with their classmates about whether vaccines cause or prevent diseases, or when they join the campus gym to improve their health. Yet their enthusiasm wanes when they read the seminal naturalist and normative accounts of disease. This happens not because such conceptual work does not have any philosophical sophistication and value but because the discussion seldom makes direct contact with the common uses of the disease concept in the medical, social, moral and institutional contexts in which the students are heavily embedded. As the authors of ‘Rethinking ‘Disease’: A Fresh Diagnosis and a New Philosophical Treatment’ argue, the notion of disease central to the naturalist and normativist positions is conceptually insulated from its applications in various institutional settings in healthcare and also from its personal, social and economic contexts. This insularity largely stems from the fact that traditional conceptual analysis in philosophy assumes a lot more than it can show, including the assumption that concepts, such as disease, have necessary and sufficient conditions that exist independently of the world as we encounter it and are accessed through our intuitions. This is a problem, because the concept of disease plays a crucial role in medical epistemology, scientific research, and ethical and policy-related issues; a philosophical account of disease that does not directly engage …. (shrink)

Despite several decades of debate, the concept of disease remains hotly contested. The debate is typically cast as one between naturalism and normativism, with a hybrid view that combines elements of each staked out in between. In light of a number of widely discussed problems with existing accounts, some theorists argue that the concept of disease is beyond repair and thus recommend eliminating it in a wide range of practical medical contexts. Any attempt to reframe the ‘disease’ discussion should answer (...) the more basic sceptical challenge, and should include a meta-methodological critique guided by our pragmatic expectations of what the disease concept ought to do given that medical diagnosis is woven into a complex network of healthcare institutions. In this paper, we attempt such a reframing, arguing that while prevailing accounts do not suffer from the particular defects that prominent critics have identified, they do suffer from other deficits—and this leads us to propose an amended hybrid view that places objectivist approaches to disease on stronger theoretical footing, and satisfies the institutional-ethicaldesiderataof a concept of disease in human medicine. Nevertheless, we do not advocate a procrustean approach to ‘disease’. Instead, we recommend disease concept pluralism between medical and biological sciences to allow the concept to serve the different epistemic and institutional goals of these respective disciplines. (shrink)

We draw on the concept of dignity to consider the ethics of the disposal of amputated limbs. The ethics of the management and disposal of human tissue has been subject to greater scrutiny and discussion in recent years, although the disposal of the limbs often remains absent from such discourses. In light of the recent UK controversy regarding failures in the medical waste disposal and the stockpiling of waste (including body parts), the appropriate handling of human tissue has been subject (...) to further scrutiny. Although this scandal has evoked concern regarding procurement and supply chain issues, as well as possible health and safety risks from such a ‘stockpile’, the dignity of those patients’ implicated in this controversy has been less widely discussed. Drawing at Foster’s (2014) work, we argue that a dignity framework provides a useful lens to frame consideration of the disposal of limbs after amputation. Such a framework may be difficult to reconcile with the logic of business and the ‘biovalue’ of the medical waste, but would we argue afford more patient-centred approaches towards disposal. It may also facilitate better practices to help mitigate future stockpiling incidences. (shrink)

In this paper I argue that junior doctors are morally exploited. Moral exploitation occurs where an individual’s vulnerability is used to compel them to take on additional moral burdens. These might include additional moral responsibility, making weighty moral decisions and shouldering the consequent emotions. Key to the concept of exploitation is vulnerability and here I build on Rosalind McDougall’s work on the key roles of junior doctors to show how these leave them open to moral exploitation by restricting their reasonable (...) options. I argue that there are a number of ways junior doctors are morally exploited. First, their seniors can leverage their position to force a junior to take on some discreet decision. More common is the second type of moral exploitation where rota gaps and staffing issues means junior doctors take on more than their fair share of the moral burdens of practice. Third, I discuss structural moral exploitation where the system offloads moral burdens onto healthcare professionals. Not every instance of exploitation is wrongful and so I conclude by exploring the ways that moral exploitation wrongs junior doctors. (shrink)

Confidentiality is a central bioethical principle governing the provider–patient relationship. Dating back to Hippocrates, new laws have interpreted it for the age of precision medicine and electronic medical records. This is where the discussion of privacy and technology often ends in the scientific health literature when Internet-related technologies have made privacy a much more complex challenge with broad psychological and clinical implications. Beyond the recognised moral duty to protect patients’ health information, clinicians should now advocate a basic right to privacy (...) as a means to safeguard psychological health. The article reviews empirical research into the functions of privacy, the implications for psychological development and the resigned sentiment taking hold regarding the ability to control personal data. The article concludes with a call for legislative, educational and research steps to readjust the equilibrium between the individual and ‘Big Data’. (shrink)

In this short commentary, I reflect on the new definition of disease proposed by Powell and Scarffe. I suggest that the method they appeal to as objective, namely, rational justification, is open to several criticisms, which I outline and discuss.

BackgroundThere is a lack of empirical research regarding the outcomes of such clinical ethics support methods as moral case deliberation (MCD). Empirical research in how healthcare professionals perceive potential outcomes is needed in order to evaluate the value and effectiveness of ethics support; and help to design future outcomes research. The aim was to use the European Moral Case Deliberation Outcome Instrument (Euro-MCD) instrument to examine the importance of various MCD outcomes, according to healthcare professionals, prior to participation.MethodsA North European (...) field survey among healthcare professionals drawn from 73 workplaces in a variety of healthcare settings in the Netherlands, Norway and Sweden. The Euro-MCD instrument was used.ResultsAll outcomes regarding the domains of moral reflexivity, moral attitude, emotional support, collaboration, impact at organisational level and concrete results, were perceived as very or quite important by 76%–97% of the 703 respondents. Outcomes regarding collaboration and concrete results were perceived as most important. Outcomes assessed as least important were mostly about moral attitude. ‘Better interactions with patient/family’ emerged as a new domain from the qualitative analysis. Dutch respondents perceived most of the outcomes as significantly less important than the Scandinavians, especially regarding emotional support. Furthermore, men, those who were younger, and physician-respondents scored most of the outcomes as statistically significantly less important compared with the other respondents.ConclusionsThe findings indicate a need for a broad instrument such as the Euro-MCD. Outcomes related to better interactions between professionals and patients must also be included in the future. The empirical findings raise the normative question of whether outcomes that were perceived as less important, such asmoralreflexivity andmoralattitude outcomes, should still be included. In the future, a combination of empirical findings (practice) and normative reflection (theories) will contribute to the revision of the instrument. (shrink)

In its expansion to genomic, epidemiological and biomedical research, citizen science has been promoted as contributing to the democratisation of medical research and healthcare. At the same time, it has been criticised for reinforcing patterns of exclusion in health and biomedicine, and sometimes even creating new ones. Although citizen science has the potential to make biomedical research more inclusive, the benefits of current citizen science initiatives are not equally accessible for all people—in particular those who are resource-poor, located outside of (...) traditional networks of healthcare services, or members of minorities and marginalised groups. In view of growing public investments in participatory research endeavours, we argue that it should be considered more explicitly if, and how, citizen science could help make research more inclusive, contribute to the public good, and possibly even lead to better and more equitable healthcare. Reflecting on emerging ethical concerns for scientific conduct and best medical practice, we propose a set of relevant considerations for researchers, practitioners, bioethicists, funders and participants who seek to advance ethical practices of citizen-led health initiatives, and address profound differences in position, privilege and power in research. (shrink)

In 2017, UNESCO introduced an Undergraduate Bioethics Integrated Curriculum to be taught in Indian medical schools, with an implied suggestion that it could subsequently be rolled out to medical schools in UNESCO’s other member states. Its stated aim is to create ethical awareness from an early stage of a doctor’s training by infusing ethics instructions throughout the entire undergraduate medical syllabus. There are advantages to a standardised integrated curriculum where none existed. However, the curriculum as presently drafted risks failing to (...) achieve its laudable aims. There are important lessons to be drawn from UNESCO’s First Syllabus for Youth Bioethics Education (2018), which is aimed at schoolchildren and teenagers, and represents a creative, effective and culturally sensitive way to teach bioethics. (shrink)

The UK’s Cancer Drugs Fund (CDF) was introduced in 2010 following the Conservative Party’s promise to address the fact that numerous efficacious cancer drugs were not available because of their cost ineffectiveness, as deduced by the National Institute of Health and Care Excellence. While, at face value, this policy appears only to promote the UK’s public welfare, a deeper analysis reveals the ethically unjustifiable inconsistencies that the CDF introduces; where is the analogous fund for other equally severe diseases? Have the (...) patients without cancer been neglected simply due to the fear-inducing advertising and particularly ferocious speech which surrounds cancer? The CDF is unjustifiable when challenged by such questions. However, it is troubling to think that the CDF might be repealed in order to abolish these ethical concerns. Intuitively, one feels uncomfortable stripping the cancer patient of their benefits just so that they might be on an equally pessimistic footing with others. In the present essay, I argue that, although there are no ethically justifiable grounds for the CDF’s introduction, its removal would be inappropriate. Following this realisation, I investigate whether the procedural steps of the CDF itself—theoretically removed from the context of resource distribution for all disease types—represent an ethically justifiable system. I believe that the answer is yes, given the CDF’s conformity to accountability for reasonableness, a robust framework of procedural justice, which continuously improves the ethical and epistemological standards of the policies to which it is applied. (shrink)