Journal of Medical Ethics

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Making concepts work

Mon, 2019-09-09 16:25

The articles in this issue direct our attention to the role of concepts in medical ethics. The issue includes research that defines a concept,1 research that applies concepts to illuminate the moral aspects of various elements of medicine,2 3 and research investigating the appropriate set of concepts to teach medical students.4

In their in-depth exploration of the concept of disease in this issue, Powell and Scarffe argue that our understanding of a concept should be ‘tailored to the role that the concept plays in the institutional settings in which it is deployed’.1 Their methodology takes seriously the institutional context in which a concept operates. This approach to thinking about concepts is potentially applicable very broadly in medical ethics. What is the institutional role that a concept plays? What is the work that we need the concept to do?

The...

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Junior doctors and moral exploitation

Mon, 2019-09-09 16:25

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.

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Ethics of limb disposal: dignity and the medical waste stockpiling scandal

Mon, 2019-09-09 16:25

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.

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'Rethinking "Disease": a fresh diagnosis and a new philosophical treatment

Mon, 2019-09-09 16:25

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-ethical desiderata of 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.

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Resourcefulness of an empirically informed and thickly normative account of disease

Mon, 2019-09-09 16:25

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...

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We should eliminate the concept of disease from mental health

Mon, 2019-09-09 16:25

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...

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Whose values? Whose reasons? A commentary on 'Rethinking disease: a fresh diagnosis and a new philosophical treatment by Powell and Scarffe

Mon, 2019-09-09 16:25

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.

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Does the harm component of the harmful dysfunction analysis need rethinking?: Reply to Powell and Scarffe

Mon, 2019-09-09 16:25

In ‘Rethinking Disease’, Powell and Scarffe1 propose what in effect is a modification of Jerome Wakefield’s2 3 harmful dysfunction analysis (HDA) of medical (including mental) disorder. The HDA maintains that ‘disorder’ (or ‘disease’ in Powell and Scarffe’s terminology) is a hybrid factual and value concept requiring that a biological dysfunction, understood as a failure of some feature to perform a naturally selected function, causes harm to the individual as evaluated by social values. Powell and Scarffe accept both the HDA’s evolutionary biological function component and its incorporation of a value component. Their proposed ‘new twist’ is to revise the value component: ‘Our proposed definition of disease is as follows: a biomedical state is a disease only if it implicates a biological dysfunction that is, or would be, properly disvalued’. So, they propose that a disorder is a ‘properly disvalued dysfunction’ rather than a ‘harmful dysfunction’,...

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Response to commentaries on Powell/Scarffe feature article

Mon, 2019-09-09 16:25

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...

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Is UNESCOs Undergraduate Bioethics Integrated Curriculum (Medical) fit for purpose?

Mon, 2019-09-09 16:25

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.

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Protecting privacy to protect mental health: the new ethical imperative

Mon, 2019-09-09 16:25

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’.

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Important outcomes of moral case deliberation: a Euro-MCD field survey of healthcare professionals priorities

Mon, 2019-09-09 16:25
Background

There 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.

Methods

A 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.

Results

All 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.

Conclusions

The 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 as moral reflexivity and moral attitude 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.

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Meeting the needs of underserved populations: setting the agenda for more inclusive citizen science of medicine

Mon, 2019-09-09 16:25

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.

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Moral ambivalence towards the Cancer Drugs Fund

Mon, 2019-09-09 16:25

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.

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We need to talk about imperatives

Tue, 2019-08-27 11:38

The feature article in this edition outlines and then critically examines the Nuffield Council of Bioethics’ Report, ‘Genome Editing and Human Reproduction: Social and Ethical issues’. While Christopher Gyngell, Hilary Bowman-Smart & Julian Savulescu, ‘support the approach taken by the Nuffield Council’,1 their findings are stronger than those in the Report, arguing that - beyond being permissible - many instances of heritable genome editing will be moral imperatives. A collection of engaging responses to this feature article are provided by Rachel Horton & Anneke M Luccason, Pete Mills, and Sarah Chan. As a short-sighed introvert, I am going to leave aside my concerns about Gyngell’s and colleagues’ account of the weak and unhappy gene pool in which I swim, and instead focus on their talk of moral imperatives.

Gyngell and colleagues construct their moral imperative argument by way of analogy. The most straightforward, and perhaps most compelling,...

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Why it is unethical to charge migrant women for pregnancy care in the National Health Service

Tue, 2019-08-27 11:38

Pregnancy care is chargeable for migrants who do not have indefinite leave to remain in the UK. Women who are not ‘ordinarily resident’, including prospective asylum applicants, some refused asylum-seekers, unidentified victims of trafficking and undocumented people are required to pay substantial charges in order to access antenatal, intrapartum and postnatal services as well as abortion care within the National Health Service. In this paper, we consider the ethical issues generated by the exclusion of pregnancy care from the raft of services which are free to all. We argue that charging for pregnancy care amounts to sex discrimination, since without pregnancy care, sex may pose a barrier to good health. We also argue that charging for pregnancy care violates bodily autonomy, entrenches the sex asymmetry of sexual responsibility, centres the male body and produces health risks for women and neonates. We explore some of the ideological motivations for making maternity care chargeable, and suggest that its exclusion responds to xenophobic populism. We recommend that pregnancy care always be free regardless of citizenship or residence status, and briefly explore how these arguments bear on the broader moral case against chargeable healthcare for migrants.

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'Inglan is a bitch: hostile NHS charging regulations contravene the ethical principles of the medical profession

Tue, 2019-08-27 11:38

Following the recent condemnation of the National Health Service charging regulations by medical colleges and the UK Faculty of Public Health, we demonstrate that through enactment of this policy, the medical profession is betraying its core ethical principles. Through dissection of the policy using Beauchamp and Childress’ framework, a disrespect for autonomy becomes evident in the operationalisation of the charging regulations, just as a disregard for confidentiality was apparent in the data sharing Memorandum of Understanding. Negative consequences of the regulations are documented to highlight their importance for clinical decision makers under the principles of beneficence and non-maleficence. Exploration of the principle of justice illuminates the core differentiation between the border-bound duties of the State and borderless duties of the clinician, exposing a fundamental tension.

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Familial genetic risks: how can we better navigate patient confidentiality and appropriate risk disclosure to relatives?

Tue, 2019-08-27 11:38

This article investigates a high-profile and ongoing dilemma for healthcare professionals (HCPs), namely whether the existence of a (legal) duty of care to genetic relatives of a patient is a help or a hindrance in deciding what to do in cases where a patient’s genetic information may have relevance to the health of the patient’s family members. The English case ABC v St George’s Healthcare NHS Trust and others considered if a duty of confidentiality owed to the patient and a putative duty of care to the patient’s close relatives could coexist in this context. This article examines whether embracing the concept of coexisting duties could enable HCPs to respect duties in line with their clinical judgement, thereby providing legal support and clarity to professionals to allow them to provide the best possible genetics service to both the patient and their family. We argue that these dual duties, framed as a novel, composite duty to consider the interests of genetic relatives, could allow HCPs to exercise and act on their professional judgements about the relative value of information to family members, without fears of liability for negligence or breach of confidence.

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The 'serious factor in germline modification

Tue, 2019-08-27 11:38

Current advances in assisted reproductive technologies aim to promote the health and well-being of future children. They offer the possibility to select embryos with the greatest potential of being born healthy (eg, preimplantation genetic testing) and may someday correct faulty genes responsible for heritable diseases in the embryo (eg, human germline genome modification (HGGM)). Most laws and policy statements surrounding HGGM refer to the notion of ‘serious’ as a core criterion in determining what genetic diseases should be targeted by these technologies. Yet, this notion remains vague and poorly defined, rendering its application challenging and decision making subjective and arbitrary. By way of background, we begin by briefly presenting two conceptual approaches to ‘health’ and ‘disease’: objectivism (ie, based on biological facts) and constructivism (ie, based on human values). The basic challenge under both is sorting out whether and to what extent social and environmental factors have a role in helping to define what qualifies as a ‘serious’ disease beyond the medical criteria. We then focus on how a human rights framework (eg, right to science and right to the highest attainable health) could integrate the concepts of objectivism and constructivism so as to provide guidance for a more actionable consideration of ‘serious’. Ultimately, it could be argued that a human rights framework, by way of its legally binding nature and its globally accepted norms and values, provides a more universal foundation for discussions of the ethical, legal and social implications of emerging or disruptive technologies.

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Moral reasons to edit the human genome: picking up from the Nuffield report

Tue, 2019-08-27 11:38

In July 2018, the Nuffield Council of Bioethics released its long-awaited report on heritable genome editing (HGE). The Nuffield report was notable for finding that HGE could be morally permissible, even in cases of human enhancement. In this paper, we summarise the findings of the Nuffield Council report, critically examine the guiding principles they endorse and suggest ways in which the guiding principles could be strengthened. While we support the approach taken by the Nuffield Council, we argue that detailed consideration of the moral implications of genome editing yields much stronger conclusions than they draw. Rather than being merely ‘morally permissible’, many instances of genome editing will be moral imperatives.

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