Increasingly, commissioners and providers of services for people with intellectual disabilities are turning to assistive technology and telecare as a potential solution to the problem of the increased demand for services, brought about by an expanding population of people with intellectual disabilities in the context of relatively static or diminishing resources. While there are numerous potential benefits of assistive technology and telecare, both for service providers and service users, there are also a number of ethical issues. The aim of this (...) paper is to raise these issues and to set them within the ethical framework proposed by Beauchamp and Childress. There is a need for a wider debate as a first step in the development of strategies to address the issues raised in the paper. (shrink)

The inner ache: an experiential perspective on IonelinessThis paper examines the various theoretical approaches that have informed both the conceptualizations and the research approaches to investigations of loneliness. A focus on phenomenological and existential perspectives of loneliness can assist in an understanding of what is essentially a subjective distressing experience. The elderly, particularly those residing in nursing homes, are vulnerable to feelings of existential loneliness because following busy lives, often they are left without meaningful roles. Concomitant to this sense of (...) loss of meaning is an alteration in the perception of lived time. It is the purpose of this paper to stimulate research into what is a common but profoundly distressing experience. (shrink)

This chapter analyzes the ethical issues that arise in the context of the use of physical enhancement techniques, i.e.techniques that aim at enhancing one or more physical functions of human beings. First, it discusses the different types of physical enhancement and points doping in sports is only a minor part of the whole enhancement field. Considerable attention is devoted to enhancement in sports, primarily because of the extensive extant literature. Then, the chapter moves on to problematize the concept of enhancement. (...) It shows that deciding whether something should count as an enhancement is not a matter for pure personal decision. The chapter engages with the ethical arguments put forward in the enhancement debate, showing that the validity of both the pro‐ and the anti‐enhancement arguments is context‐dependent and the growth hormone treatment can only be justifiably claimed if it aims at giving someone a height in the normal range. (shrink)

The question that this paper tries to answer is Q: “Can good academic bioethics be done without commitment to moral theory?” It is argued that the answer to Q is an unequivocal “Yes” for most of what we could call “critical bioethics,” that is, the kind of bioethics work that primarily criticizes positions or arguments already in the literature or put forward by policymakers. The answer is also “Yes” for much of empirical bioethics. The second part of the paper then (...) provides an analysis of Q in relation to “constructive bioethics,” that is, bioethics work aimed at providing an argument for a particular position. In this part, it is argued that a number of the approaches or methods used that initially look like they involve no commitment to moral theory, nevertheless, involve such a commitment. This is shown to be the case for reflective equilibrium, mid-level theory, the use of theory fragments, and argument by analogy. (shrink)

Two protechnology arguments, the “hopeful principle” and the “automatic escalator”, often used in bioethics, are identified and critically analysed in this paper. It is shown that the hopeful principle is closely related to the problematic precautionary principle, and the automatic escalator argument has close affinities to the often criticised empirical slippery slope argument. The hopeful principle is shown to be really hopeless as an argument, and automatic escalator arguments often lead nowhere when critically analysed. These arguments should therefore only be (...) used with great caution. (shrink)

One of the arguments that is often put forward in the discussion of human cloning is that it is in itself wrong to create a copy of a human being.

This paper analyses the British Human Fertilisation and Embryology Authority's 2002 public consultation on sex selection, a consultation that was mainly concerned with sex selection for non-medical reasons. Based on a close reading of the consultation document and questionnaire it is argued that the consultation is biased towards certain outcomes and can most plausibly be construed as an attempt not to investigate but to influence public opinion.

Tom Shakespeare’s book Disability rights and wrongs is very rich and interesting and ought to be compulsory reading for anyone interested in the relation between disability and medical ethics.1In my short contribution to this symposium on the book, I will focus on a particular aspect of his discussion of prenatal diagnosis and termination of pregnancy.In chapter 6 of Disability rights and wrongs, a chapter entitled Questioning prenatal diagnosis, the author discusses a wide range of issues concerning the relation between disability (...) and prenatal diagnosis. One of the arguments he discusses is the so-called “expressivist objection” to prenatal diagnosis—that is, the claim that prenatal diagnosis expresses a discriminatory or negative attitude towards people with disability. After having analysed the expressivist objection, Shakespeare, in line with a range of other authors, concludes that the argument is not sound: Nor should we interpret a decision to have a test or a termination as expressing disrespect or discrimination towards disabled people.1Is it thus time now to lay the expressivist objection to rest? In the following, I will suggest that it may be too early to completely dismiss the objection, partially because it is often misrepresented by its opponents, who argue against implausibly strong versions of the objection.THE OBJECTION UNFOLDEDWhat does the expressivist objection essentially claim? The core of the claim is, as described above, that prenatal diagnosis and termination of pregnancy expresses certain attitudes towards disabled people. What is taken to express these attitudes may be the social practice of prenatal diagnosis and termination of pregnancy either …. (shrink)

This paper analyses the question what other healthcare professions should learn from nursing ethics, e.g. what should medical ethics learn from nursing ethics. I first analyse and reject all strong versions of the claim that nursing ethics is unique, because nursing is a unique practice. I then move to the question of whether the link between nursing ethics and nursing theory can be a model for other areas of healthcare ethics. I provide an analysis of the possibility of creating a (...) theory of medicine and find that there cannot be a theory of medicine, and I argue briefly that this finding is also applicable to nursing. If there cannot be a theory of nursing, this entails that nursing ethics cannot be justifiably based on such a theory. In the final section, I then analyse the success of nursing ethics in resisting certain of the vices of Anglo‐American analytic ethics, in particular the reductionism and individualism that characterizes much of healthcare ethics. I conclude that other healthcare ethics could usefully learn from this aspect of nursing ethics. (shrink)

Psychiatry is rapidly adopting digital phenotyping and artificial intelligence/machine learning tools to study mental illness based on tracking participants’ locations, online activity, phone and text message usage, heart rate, sleep, physical activity, and more. Existing ethical frameworks for return of individual research results (IRRs) are inadequate to guide researchers for when, if, and how to return this unprecedented number of potentially sensitive results about each participant’s real-world behavior. To address this gap, we convened an interdisciplinary expert working group, supported by (...) a National Institute of Mental Health grant. Building on established guidelines and the emerging norm of returning results in participant-centered research, we present a novel framework specific to the ethical, legal, and social implications of returning IRRs in digital phenotyping research. Our framework offers researchers, clinicians, and Institutional Review Boards (IRBs) urgently needed guidance, and the principles developed here in the context of psychiatry will be readily adaptable to other therapeutic areas. (shrink)

The attitudes of women patients with cancer were explored when they were invited to participate in one of three randomised trials that included chemotherapy at two university centres and a satellite centre. Fourteen patients participating in and 15 patients declining trials were interviewed. Analysis was based on the constant comparative method. Most patients voiced positive attitudes towards clinical research, believing that trials are necessary for further medical development, and most spontaneously argued that participation is a moral obligation. Most trial decliners, (...) however, described a radical change in focus as they faced the actual personal choice. Almost no one got an impression of clinical equipoise between treatments in the trials, and most patients expressed discomfort with randomisation. A patient’s choice to participate was mainly determined by whether the primary focus was on treatment effect or on adverse effects. Both knowledge about and feelings towards trials originated mostly from the media, although paradoxically the media were largely seen as untrustworthy. Mistrust was shown towards the pharmaceutical industry, and although most patients originally trusted that doctors primarily pursued the interest of patients, they did not trust the adequacy of doctors or industry in maintaining self-regulation. Thus, public control measures were judged to be essential. (shrink)

The possibility of creating human embryonic stem cell lines from the inner cell mass of blastocysts has led to considerable debate about how these scientific developments should be regulated. Part of this debate has focused on the ethical analysis and part on how this analysis should influence policymaking.

The discovery of an alternative method of producing induced human stem cells will affect the ethical evaluation of human embryonic stem cell researchOn 20 November 2007 two groups of researchers announced that they had independently managed to produce induced Pluripotent Cells from human adult somatic cells.1 2 The two groups used slightly different procedures, but both approaches involved overexpression of a group of four genes known to be actively expressed in human embryonic stem cells . The cells produced are very (...) similar to human embryonic stem cells, they are pluripotent and they differentiate to specific cell types when treated according to protocols leading to that specific differentiation in hESC.WHAT ARE THE IMPLICATIONS OF THESE RESULTS FOR STEM CELL ETHICS?There seems to be at least two areas of debate and research where there are important implications and one area where there are none.Let us deal with the area where these results have absolutely no implications first: the contentious debate about the moral status of the embryo. Nothing in these research results will or can affect the position of those who believe that they have good arguments showing either that the embryo has no moral status at all, or that the embryo has such significant moral status that …. (shrink)

Some very bad old arguments need removing from NICE’s latest reportLet me begin this editorial by reassuring readers that the journal does not hold any deep seated grudge against the National Institute for Health and Clinical Excellence . However, because the pronouncements of NICE are of great importance to the future of health care in England, and to a lesser extent in the other nations of the United Kingdom, and because NICE is often held up as a model for other (...) countries to follow we feel that we have to comment when these pronouncements are less than ethically excellent. And in 2005 NICE just happened to have a particularly bad year with regard to the cogency of its ethical arguments, and this flow of bad argument extended right to the end of the year.In December 2005 NICE published a report with the title Social Value Judgments—Principles for the Development of NICE Guidance, which considered whether social background, age, or lifestyle choices should ever influence NICE guidance concerning the health care provided by the National Health Service .1 This report was endorsed by the NICE board and its guidelines are binding on all panels developing specific NICE guidance.Here I want to focus on three areas of this report: The relevance of self inflicted conditions The relevance of socioeconomic status The relevance of stigmaI will not comment on NICE’s methodology in coming to these conclusions, since that is the subject of a paper by John McMillan and colleagues, which is published in this issue of the journal.2With regard to self inflicted conditions NICE has now bound itself to the following principle:PRINCIPLE 10Principle 10 states that:"NICE and its advisory bodies should avoid denying care to patients with conditions that are, or may be, self … ". (shrink)

Philosophers should be wary of using the methods they use in philosophy when engaging in discussions about policy makingThe beginning of November last year was a busy time in the bioethics calendar with four conferences taking place in New Zealand and Australia. The Fifth International Conference on Priorities in Health Care took place in Wellington; the Fifth Feminist Approaches to Bioethics congress, the Seventh World Congress of Bioethics, and the meeting of the Australasian Bioethics Association were all in Sydney.One of (...) the interesting features of these meetings was a move to a deeper exploration of the relations between ethics and political theory and political philosophy. The factors that drive this exploration are manifold but the four most important seem to be: 1) that ethicists often comment on, or propose political action and regulation; 2) that there is a growing awareness that the basic national and international societal and legal structures profoundly influences ethical issues; 3) the growing interest in global and third world issues, and 4) the move in many countries toward greater public participation in decision making concerning ethically contentious issues. All of these developments move the focus from the traditional subject matter of medical ethics—that is, the individual ethically charged action, to the question of how ethics should influence political action and regulation.To …. (shrink)

Is the opposition to circumcision partly driven by cultural prejudices?In this issue of the Journal of Medical Ethics you can read a minisymposium on circumcision, mainly dealing with the circumcision of male children at an age where they cannot consent, but also touching upon issues of female genital mutilation.When reading the papers I found it strange, but of course not really surprising given its symbolic importance, that we are so worried about interventions on the male penis. Why are we not (...) equally worried about other irreversible bodily and mental interventions to which parents subject their children? I will not dwell on the irreversible mental imprinting, apart from mentioning that upon becoming a father I was amused to find that certain Danish lullabies and children’s rhymes had apparently been stored in my mind for the last 40 …. (shrink)

Response to: A rational cure for prereproductive stress syndrome.

Editors-in-Chief Søren Holm and John Harris announce exciting changes for the journalStarting with this issue, the Journal of Medical Ethics has a new editorial team. We inherit one of the best—we believe the best—journal concerned with medical ethics and bioethics in the world. Certainly it is the journal with the highest impact factor in bioethics, applied philosophy, and medical ethics. For this we have to thank not only Julian Savulescu from whom we take over but also the two previous (...) editors, Raanan Gillon and Alistair Campbell.Søren Holm and John Harris are the new Editors-in-Chief and the editorial team welcomes several new members: Richard Ashcroft and Nikola Biller-Andorno as …. (shrink)

“Dissecting Bioethics,” edited by Tuija Takala and Matti Häyry, welcomes contributions on the conceptual and theoretical dimensions of bioethics.The section is dedicated to the idea that words defined by bioethicists and others should not be allowed to imprison people's actual concerns, emotions, and thoughts. Papers that expose the many meanings of a concept, describe the different readings of a moral doctrine, or provide an alternative angle to seemingly self-evident issues are therefore particularly appreciated.The themes covered in the section so far (...) include dignity, naturalness, public interest, community, disability, autonomy, parity of reasoning, symbolic appeals, and toleration.All submitted papers are peer reviewed. To submit a paper or to discuss a suitable topic, contact Tuija Takala at [email protected]. (shrink)

The BMA’s recent discussion paper A rational way forward for the NHS in England, while wishing to free the English NHS from day-to-day politics, merely shifts the locus of the political conflict.In May this year, the British Medical Association published a discussion paper entitled “A rational way forward for the NHS in England”, outlining the association’s suggestions for reform of the English NHS.1The paper is worth reading for its insightful dissection and analysis of the current problems of the English NHS, (...) as well as for its interesting but not totally unexpected conflation of professional and clinical with medical in most of the report. Many of the recommendations are eminently sensible, but some of the suggestions for reconfiguration of the highest-level structures of the English NHS are problematic and unrealistic. What the BMA wants is to free the English NHS from the influence of day-to-day politics by the establishment of a constitution and an independent board of governors, while keeping it free at the point of delivery and paid by general taxation. This is expressed in the first five of the total of 24 recommendations that outline the BMA proposals …. (shrink)

Because the WMA’s new manual contains a partially partisan view of what constitutes medical ethics, if used for teaching it needs to be balanced by other materialsThe recent publication of the World Medical Association’s Medical Ethics Manual should be welcomed since it gives people all over the world, or at least those people who are on the internet and who have a reasonable printer, access to an introduction to medical ethics that can be used as the basis for an introductory (...) course in medical ethics or for self study.1 The manual covers a wide range of ethical issues in medicine, but much of the focus is on the interaction between the physician and other individual agents—for example, patients and other healthcare professionals.Although there is much that is uncontroversial in the manual, there are a number of places where it is either vague or straightforwardly tendentious. In my short review I will focus on some of these problematic sections.One problem in reviewing this publication is that it is not quite clear to what degree it reflects the views of the WMA. On page two we find the following disclaimer:"This Manual is a publication of the Ethics Unit of the World Medical Association. It was written by John R Williams, Director of Ethics, WMA. Its contents do not necessarily reflect the policies of the WMA, except where this is clearly and explicitly indicated ."In the foreword by the WMA Secretary General, however, we read that the manual is the result of:"… a process [that] was started to develop a basic teaching aid on medical ethics for all medical students and physicians that would be based on WMA policies, but not be a policy document itself ."I …. (shrink)

From reason to practice in bioethics brings together original contributions from some of the world's leading scholars in the field of bioethics. With a particular focus on, and critical engagement with, the influential work of Professor John Harris, the book provides a detailed exploration of some of the most interesting and challenging philosophical and practical questions raised in bioethics.

Regulation of stem cell research in Europe should not take place without public and scholarly inputThe European Union has, at present, no jurisdiction over research carried out in the member states, or concerning the “ethics” of member states. This does not, however, mean that decisions made by the European institutions cannot influence such matters greatly.There has recently been a lot of focus on the decision not to fund embryonic stem cell research during the first year of the 6th framework programme (...) , but behind the scenes a much more important and wide ranging set of regulations are being prepared.The European Commission has prepared a draft directive on setting standards of quality and safety for the donation, procurement, testing, processing, storage, and distribution of human tissues and cells.1 The purpose of this directive was originally to “ensure the quality and safety of human tissues and cells for clinical use” in the EU. This is clearly a laudable objective, fully in line with the EU’s jurisdiction in consumer protection and public health.During the intricate processes of political …. (shrink)

In January 2006, one of the major cases of scientific fraud in recent years broke in the media. It was discovered that the Norwegian researcher John Sudbø had falsified the complete set of data on which an article published in the Lancet in 2005 had been based.1 The article had 14 authors, and Professor Jan Helge Solbakk, Professor of Medical Ethics at the University of Oslo, was quoted in Norwegian media as saying that “… also the 13 other co-authors in (...) the research scandal have muck on their hands…” and: “That none of the 13 has discovered what took place shows clearly that they have not been close to fulfilling the criteria for being co-authors.”2One of the co-authors complained to the Norwegian Medical Association’s Council for Professional Ethics about these comments, …. (shrink)

Attempts to stifle debate in medical ethics must be strongly resistedOn 30 September and 1 October this year a conference on “Ethics, Science and Moral Philosophy of Assisted Human Reproduction” was held at the Royal Society in London. The conference was organised by the German philosopher Edgar Dahl and the eminent embryologist Robert Edwards, and the speakers included scientists, IVF practitioners, and philosophers from the UK, the USA, Europe, and Australia Because the programme included discussion of preimplantation genetic diagnosis and (...) reproductive choice the conference was targeted by an anonymous group calling itself “People Against Eugenics” that is hiding its real identity behind an email address.If this shadowy organisation had had …. (shrink)

In “A Paradox out of Context: Harris and Holm on the Precautionary Principle,” Sandin criticizes the earlier paper “Extending Human Lifespan and the Precautionary Paradox” wherein John Harris and I argued that the precautionary principle is incoherent. These criticisms offer me the possibility to briefly expand and clarify some of our previous arguments, and to show that the paradox of precaution is not dispelled by attention to context as Sandin maintains. Even when context is fully acknowledged, application of the (...) PP will still lead to paradox and paralysis. (shrink)

At the end of 1999 the Danish Council of Ethics published a report on organ and tissue donation from living donors. The report focused on kidney and bone marrow transplantations, as these are presently the most common transplantations from live donors. During the work on the report, it became clear to the Council that, apart from problems concerning coercion and commercialization that affected both adult and child donors, by far the largest ethical problems occurred in donations from children.

The everyday expressions of nursing practices are driven by their entanglement in complex flows of social, cultural, political and economic interests. Early expressions of trained nursing practice in the United States and Europe reflect claims of moral, spiritual and clinical exceptionalism. They were both imposed upon—and internalized by—nursing pioneers. These claims were associated with an endogenous narrative of discipline and its physical manifestation in early nursing schools and hospitals, which functioned as “total institutions.” By contrast, the external forces—diffuse yet pervasive—impacting (...) upon contemporary nursing more closely align with the power dynamics explored in Gilles Deleuze's concept of the Society of Control. The example of sensor technology and telemetric monitoring of nurses’ locations in the clinical setting exemplifies the intense presence of surveillance, performance metrics and the “rationalization” of nursing practice. It falls upon nurses to recognize, accept or challenge these dynamics in order to shape the future of nursing practice into a discipline which embodies our values and priorities. (shrink)

In this article we provide an in-depth description of a new model of informed consent called ‘meta consent’ and consider its practical implementation. We explore justifications for preferring meta consent over alternative models of consent as a solution to the problem of secondary use of health data for research. We finally argue that meta consent strikes an appropriate balance between enabling valuable research and protecting the individual.

In an analysis of recent work on nudging we distinguish three positions on the relationship between nudging founded in libertarian paternalism and the protection of personal autonomy through informed consent. We argue that all three positions fail to provide adequate protection of personal autonomy in the clinical context. Acknowledging that nudging may be beneficial, we suggest a fourth position according to which nudging and informed consent are valuable in different domains of interaction.

In an analysis of artificially intelligent systems for medical diagnostics and treatment planning we argue that patients should be able to exercise a right to withdraw from AI diagnostics and treatment planning for reasons related to (1) the physician’s role in the patients’ formation of and acting on personal preferences and values, (2) the bias and opacity problem of AI systems, and (3) rational concerns about the future societal effects of introducing AI systems in the health care sector.

The question of when we have justification for overriding ordinary, everyday decisions of persons with dementia is considered. It is argued that no single criterion for competent decision-making is able to distinguish reliably between decisions we can legitimately override and decisions we cannot legitimately override.

In the debates regarding the ethics of human organoid biobanking, the locus of donor autonomy has been identified in processes of consent. The problem is that, by focusing on consent, biobanking processes preclude adequate engagement with donor autonomy because they are unable to adequately recognise or respond to factors that determine authentic choice. This is particularly problematic in biobanking contexts associated with organoid research or the clinical application of organoids because, given the probability of unforeseen and varying purposes for which (...) a donor’s organoids could be employed and given the different ways in which a donor can relate to her biospecimens, a donor can value her organoids differently in different contexts and her reasons for autonomously permitting use of her cells and tissues in one case may not support an autonomous decision in another. In response, this paper has three aims: firstly, to make the case for why organoid biobanks ought to respect donor autonomy conceived as authentic choice; secondly, to explore the autonomy-respecting limits of established and widely prevalent models of biobank consent; and thirdly, to propose certain conditions that organoid biobanks ought to support or facilitate in order to respect donor autonomy. (shrink)

Phenomenology gives rise to certain ontological considerations that have far-reaching implications for standard conceptions of patient autonomy in medical ethics, and, as a result, the obligations of and to patients in clinical decision-making contexts. One such consideration is the phenomenological reduction in classical phenomenology, a core feature of which is the characterisation of our primary experiences as immediately and inherently meaningful. This paper builds on and extends the analyses of the phenomenological reduction in the works of Husserl, Heidegger, and Merleau-Ponty (...) in order to identify and explain its implications for our current understanding of the principle of respect for patient autonomy and the norms of clinical decision making. (shrink)