Sjur Holm

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

New UK consensus statement on core curriculum in medical ethics and lawThe most important paper in this month’s JME is not a standard paper but the new UK consensus statement on the core curriculum in medical ethics and law for medical students. The first consensus statement was published in the JME in 1998 and has been instrumental in ensuring the embedding of a common standard of teaching in these subjects across UK medical schools. 1 However, even the most hard core moral realist has to accept that, even if the fundamental principles of ethics do not change, the best way to teach it might evolve and the problems of most interest may change as the healthcare system changes. The core curriculum can therefore not be cast in stone and must be revised and updated from time to time. The current revision is the result of an extensive process involving reviews of the way …

Quality improvement (QI) is fundamental to maintaining high standards of health care. Significant debate exists concerning the necessity for an ethical approval system for those QI projects that push the boundaries, appearing more similar to research than QI. The authors discuss this issue identifying the core ethical issues in family medicine (FM), drawing upon the fundamental principles of medical ethics, including principles of autonomy, utility, justice and non-maleficence. Recent debate concerning the application of QI ethics boards is discussed with relevance to primary care and issues such as general practitioner (GP) intentions, the impact of QI on patients and the use of confidential patient data and the impact of dissemination. The authors conclude that a system of QI ethical approval leaves many issues unresolved and potentially creates several barriers to implementing QI. To ensure ethical QI work is generated within FM it is essential for GPs to learn about and engage in more ethical reflection so that they can better judge and resolve these issues

This book examines the role of philosophy and philosophers in bioethics. Academics often see bioethical studies as too practical while decision makers tend to see them as too theoretical. The purpose of this collection of new essays by an international group of distinguished scholars is to explore the troubled relationship between theory and practice in the ethical assessment of medicine, health care, and new medical and genetic technologies. The book is divided into six parts. In the first part, philosophers consider the definition of bioethics, the nature of applied ethics more generally, and the possibility of combining utilitarian and liberal strands of thinking in moral and political studies. In the second part, authors discuss the place and justification of principles in bioethics and the significance of medical and nursing experience in moral decision making. The third part addresses the complementary principles of dignity, autonomy, precaution, and solidarity, and their use in theoretical and practical settings. In the fourth part, public health measures and experimental research are defended against traditional moral concerns. Part five scrutinizes parental responsibilities in bearing and rearing children, especially the reasons for and against human reproduction in individual cases. In part six, enhancements to human nature by various means are analyzed. Following in the footsteps of four previous collections in the Values in Bioethics special series by the same editorial team—Scratching the Surface of Bioethics, Bioethics and Social Reality, Ethics in Biomedical Research, and Arguments and Analysis in Bioethics—this book, compiled in honor of Professor Matti Häyry’s 50th birthday, drills into the core of the discipline to show the philosophical depths that lie under the polished surface of policy-driven everyday bioethics.

It is now 10 years ago that human embryonic stem cell research appeared as a major topic of societal concern following significant scientific breakthroughs.1 2 During these 10 years it has become obvious that stem cell research is embedded in a narrative characterised by hope and hype and that it has created heated moral and political debate. Although it would be tempting to try to deconstruct the importance attributed to hope in this story or to unmask the different instigators active in promoting hype,3–5 the main aim of this editorial is to briefly review the controversies underlying the debate and propose some possible answers to a set of inter-related questions: What are the main disagreements in the stem cell debate? Is there any hope that we can resolve these main disagreements? Has the debate been a fruitful model for future debates about ethically contentious issues in biomedicine, or has it been characterised more by rhetoric than by argument? What kind of ethical debates are most efficient as models for future debates?The two authors agree with regard to the importance of asking these questions, but they disagree about at least some of the answers. Let us start with the questions about the debate and its use as a model for future debates.WHAT KIND OF ETHICAL DEBATE IS MOST EFFICIENT AS A MODEL FOR FUTURE DEBATES?Could it be the case that ethical debates that are characterised by overselling of the potential of the technology are more efficient as models for future debates about ethically contentious issues in biomedicine than more sober and “neutral” debates? The narratives of stem cell research are full of examples of overselling and underselling, and we will suggest that it is precisely for this reason that there is a lot to learn morally from reviewing the narratives. The two main forms of overselling are therapeutic …

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 …

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 …

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, …

Organ transplantation and donation has been a perennial topic of discussion in medical ethics since transplantation first became possible. In this issue there are two articles discussing ways in which the number of organ donations could be increased in an ethically acceptable way. De Wispelaere and Stirton identify the de facto ‘family veto’ as one major problem in cadaveric organ donation . They suggest that one way of overcoming this problem would be through a specific advance commitment device which can increase the chance that a person's prior commitment to donate is actually acted upon when the person has died. Their concrete suggestion is that potential donors who register with organ donor registries should not only register their intention to donate but should also appoint a designated second consenter . The DSC would be a person that was committed to upholding the donor's decision after the death of the donor. The …

Is research fraud deliberate? Is research fraud / serious misconduct in medicine deliberate or inadvertent? This is clearly an important question and one that is subject to a lot of controversy. Many researchers seem to believe that fraud is always either the result of some kind of psychiatric condition, or just at one extreme of a spectrum of inadvertent error. How do we find out? We could ask fraudulent researchers, but would probably not get honest answers. The ingenious study by Steen published in this issue points towards fraud often being deliberate. Steen's sample are all papers retracted from the PubMed database between 2000 and 2010. He divides these up in papers retracted due to error and papers retracted due to fraud and hypothesises that if fraud is deliberate then we can expect that “… fraudulent authors target journals with a high impact factor, have other fraudulent publications, diffuse responsibility across many co-authors, delay retracting fraudulent papers …

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

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 …

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 … "

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

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 …

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 …

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 …

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 …

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 …

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 …