The use of covert video surveillance in the investigation of suspected life-threatening child abuse and Munchausen syndrome by proxy raises important ethical questions. That the recently reported provision of this facility in North Staffordshire was not presented to a Local Research Ethics Committee (LREC) for approval as a research exercise raises important questions about the ethical review of research and practice. The case made for avoiding such review is first set out and then examined. The three main premisses which form the basis of the view that LREC approval is not required are identified and tested in turn. The conclusion is that there is an undeniable element of research involved in the procedure and that the welfare of all those subjected to the surveillance would be best protected by the submission of the protocol to an independent committee for ethical assessment.
Munchausen syndrome by proxy is an especially malignant form of child abuse in which the carer (usually the mother) fabricates or exacerbates illness in the child to obtain medical attention. It can result in serious illness and even death of the child and it is difficult to detect. Some investigators have used video to monitor the carer's interaction with the child without obtaining consent--covert videoing. The technique presents several ethical problems, including exposure of the child to further abuse and a breach of trust between carer, child, and the professionals. Although covert videoing can be justified in restricted circumstances, new abuse procedures under the Children Act now seem to make its use unethical in most cases. Sufficient evidence should mostly be obtained from separation of the child and carer or videoing with consent to enable action to be taken to protect the child under an assessment order. If the new statutory instruments prove ineffective in Munchausen syndrome by proxy covert videoing may need to be re-evaluated.
This brief reply gives a few references and clarifies some points in order to emphasize that a number of Professor Seedhouse's assertions are debatable and that his criticism of slovenly scholarship and his unbridled ad hominem argumentation are out of place and easily refuted.
This is a response to Professor Fennell's paper on the recent influence and impact of the best interests test on the treatment of patients detained under the Mental Health Act 1983 (MHA) for mental disorder. I discuss two points of general ethical significance raised by Professor Fennell. Firstly, I consider his argument on the breadth of the best interests test, incorporating as it does factors considerably wider than those of medical justifications and the risk of harm. Secondly, I discuss his contention that the apparent permeability of the line between the interests of the patient and the interests of society is something to be concerned about in itself. Since the overarching theme of the paper is the proper place of social and cultural values, my reponse considers the implications of Fennell's arguments in the light of Charlotte Brontë's novel ‘Jane Eyre’, which, through the character of Bertha Mason (the infamous ‘mad woman in the attic’) provides a provocative study of the relationship between mental disorder and society.
Mental Health Act; Mental Capacity Act; Mental disorder; Best interests; Consent; Treatment
This short communication is about Munchausen's syndrome in a group of pediatric patients and co morbid Munchausen's syndrome by proxy. A 7-year-old girl presented with spontaneous bleeding from forehead, eyes and scalp. The girl was investigated thoroughly by pediatricians at a tertiary care hospital in western India for all possible bleeding disorders, but there was no conclusive diagnosis. After two days, cases with similar complaints were reported among children residing in the same locality and with similar socioeconomic background. All of them were investigated in detail for possible causes of bleeding but nothing came out. There was a media reporting of the cases as a mysterious bleeding disorder. At this point of time, an expert opinion from the psychiatrist was demanded. Covert video surveillance and series of interviews revealed Munchausen's syndrome and possible Munchausen's syndrome by proxy. An in-depth literature review with special reference to Munchausen's syndrome was carried out to come to a final conclusive diagnosis.
Munchausen's syndrome; Munchausen's syndrome by proxy; spontaneous bleeding disorder
In a recent article in this journal our unit was accused of a number of errors of judgment in applying covert video surveillance (CVS) to infants and children suspected of life-threatening abuse. The article implied, that on moving from the Royal Brompton Hospital in London to North Staffordshire Hospital, we failed to present our work to the Research Ethics Committee (REC). We did send our protocol to the REC though we did not consider that, after a total of 16 patients had been documented as being the subject of life-threatening abuse, this was research. The REC in Staffordshire agreed with us. We were also accused of undertaking work that should be pursued by the Police. We agree with this. However, unlike the Metropolitan Police the Staffordshire Police would not undertake CVS. We fail to agree that 'working together' with parents is necessarily practical or safe when trying to protect children from life-threatening abuse of this kind.
Presently, there is a movement in the UK research governance framework towards what is referred to as proportional ethical review. Proportional ethical review is the notion that the level of ethical review and scrutiny given to a research project ought to reflect the level of ethical risk represented by that project. Relatively innocuous research should receive relatively minimal review and relatively risky research should receive intense scrutiny. Although conceptually attractive, the notion of proportional review depends on the possibility of effectively identifying the risks and ethical issues posed by an application with some process other than a full review by a properly constituted research ethics committee. In this paper, it is argued that this cannot be achieved and that the only appropriate means of identifying risks and ethical issues is consideration by a full committee. This implies that the suggested changes to the National Health Service research ethics system presently being consulted on should be strenuously resisted.
One role of research ethics committees (RECs) is to assess the ethics of proposed health research. In some countries, RECs are also instructed to assess its legality. However, in other countries they are explicitly instructed not to do so. In this paper, I defend the claim that public policy should instruct RECs not to assess the legality of proposed research (“the Claim”). I initially defend a presumption in favour of the Claim, citing reasons for making research institutions solely responsible for assessing the legality of their own research. I then consider three arguments against the Claim which may over-ride this presumption–namely, that policy should instruct RECs to assess the legality of research because (1) doing so would minimise the costs of assessing the legality of research, (2) whether research is legal may partly determine whether it is ethical and (3) whether research is legal may constitute evidence for whether it is ethical. I reject the first two arguments and note that whether the third succeeds depends on the answer to a more fundamental question about the appropriate nature of REC ethical deliberation. I end with a brief discussion of this question, tentatively concluding that the third argument also fails.
One role of research ethics committees (RECs) is to assess the ethics of proposed health research. In some countries, RECs are also instructed to assess its legality. However, in other countries they are explicitly instructed not to do so. In this paper, I defend the claim that public policy should instruct RECs not to assess the legality of proposed research (“the Claim”). I initially defend a presumption in favour of the Claim, citing reasons for making research institutions solely responsible for assessing the legality of their own research. I then consider three arguments against the Claim which may over‐ride this presumption—namely, that policy should instruct RECs to assess the legality of research because (1) doing so would minimise the costs of assessing the legality of research, (2) whether research is legal may partly determine whether it is ethical and (3) whether research is legal may constitute evidence for whether it is ethical. I reject the first two arguments and note that whether the third succeeds depends on the answer to a more fundamental question about the appropriate nature of REC ethical deliberation. I end with a brief discussion of this question, tentatively concluding that the third argument also fails.
research ethics committees; ethical review; legislation & jurisprudence
McGregor and MacNamee recently, in this journal, offered several criticisms of an earlier article in which I attempted to refute a number of arguments for the claim that doping in sports is morally wrong. Their criticisms are numerous, but focus on four domains. First, they sketch a view on which the risk profiles of different sports may make doping permissible in some and impermissible in others. Second, they suggest that my criticisms of safety-based arguments assume that doping opponents are bent on harm elimination, rather than harm management. Finally, they offer two methodological criticisms, the first pertaining to my use of analogical arguments, and the second pertaining to the general difficulties of making revisionist arguments in ethics. I defend my criticisms of safety-based arguments by showing that these do not rest on the assumptions McGregor and MacNamee attribute to me and by noting that their own view about the variable relevance of safety considerations is underdeveloped. As for their methodological arguments, I endeavor to show that these are misplaced, in that they either rest on misinterpretations of my earlier article or on an excessively high standard for ethical argumentation.
Sports ethics; Doping; Moral methodology; Sports; Performance enhancement
In a recent paper published in the Journal of Medical Ethics, Le Morvan and Stock claim that the kantian ideal of treating people always as ends in themselves and never merely as a means is in direct and insurmountable conflict with the current medical practice of allowing practitioners at the bottom of their “learning curve” to “practise their skills” on patients. In this response, I take up the challenge they issue is and try to reconcile this conflict. The kantian ideal offered in the paper is an incomplete characterisation of Kant's moral philosophy, and the formula of humanity is considered in isolation without taking into account other salient kantian principles. I also suggest that their argument based on “necessary for the patient” assumes too narrow a reading of “necessary”. This reply is intended as an extension to, rather than a criticism of, their work.
The fair innings argument (FIA) is frequently put forward as a justification for denying elderly patients treatment when they are in competition with younger patients and resources are scarce. In this paper I will examine some arguments that are used to support the FIA. My conclusion will be that they do not stand up to scrutiny and therefore, the FIA should not be used to justify the denial of treatment to elderly patients, or to support rationing of health care by age.
There are six issues arising out of the FIA which are to be addressed. First, the implication that there is such a thing as a fair share of life. Second, whether it makes sense to talk of a fair share of resources in the context of health care and the FIA. Third, that 'fairness' is usually only mentioned with regard to the length of a person's life, and not to any other aspect of it. Fourth, if it is sensible to discuss the merits of the FIA without taking account of the 'all other things being equal' argument. Fifth, the difference between what is unfair and what is unfortunate. Finally, that it is tragic if a young person dies, but only unfortunate if an elderly person does.
In some young children brought by their parents for diagnosis of acute life-threatening events investigations suggested imposed apnoea as the cause rather than spontaneous occurrence. Covert video surveillance of the cot in which the baby was monitored allowed confirmation or rebuttal of this diagnosis. That parents were not informed of the video recording was essential for diagnosis and we assert ethically justifiable as the child was the patient to whom a predominant duty of care was owed. The procedure also avoids the risk of separation of child from parent on inadequate information.
An assessment of a protocol devised to guide practitioners thinking of using covert video surveillance. Such surveillance is particularly used to help identify cases of Munchausen's syndrome by proxy. The protocol in question has been written by staff at the Academic Department of Paediatrics, North Staffordshire Hospital, Stoke-on-Trent in association with their local Area Child Protection Committee and has been commended by the Department of Health to others wishing to implement covert video surveillance.
Ethics committees are the most important practical instrument of clinical ethics in Belgium and fulfil three tasks: the ethical review of experimental protocols, advising on the ethical aspects of healthcare practice, and ethics consultation. In this article the authors examine the current situation of ethics committees in Belgium from the perspective of clinical ethics. Firstly, the most important steps which thus far have been taken in Belgium are examined. Secondly, recent opinion by the Belgian Advisory Committee on Bioethics with regard to ethics committees is presented and the activities of Belgian ethics committees are discussed. Finally, the option to bring research ethics and clinical ethics under the roof of just one committee is criticised using a pragmatic and a methodological argument. Concomitantly, the authors build an argument in favour of the further development of ethics consultation.
Research ethics committees, while in many ways an excellent innovation, do have some drawbacks. This paper examines three of these. The first problem of such committees is that their approval of specific projects in their own institutions acquires intrinsic value.
The second problem relates to the possible devolution of responsibility from the investigator to the committee. The committee approves, the investigator feels relieved of some responsibility and things can be done to patients which neither the committee nor the investigator might countenance if they had sole responsibility.
The third problem arises directly from the bureaucratic nature of the committee itself. And one consequence of the resulting rigid guidelines is the insistence, by most committees, on the written consent of patients. Demanding this can, in some circumstances, mean giving the patient very disturbing information. The paper suggests that in patients with a fatal disease where trials compare two accepted therapies committees dispense with written consent.
There is a commentary on this paper by Dr D J Weatherall of the Nuffield Department of Clinical Medicine, University of Oxford.
Inevitably a policy-oriented report on issues as complex and as rapidly changing as the medical and scientific uses of human tissue can achieve neither philosophical purity nor regulatory completeness. The council's strategy has been to begin with robust ethical principles, for which sound philosophical arguments can be given, which will (it is hoped) command widespread support. The council went on to argue for guidelines of sufficient, but not vapid, generality which could be of practical use to the various medical intermediaries, professional and regulatory bodies and research ethics committees which will carry out the tasks of detailed regulation and of making decisions that affect uses of human tissue. The council's hope is that the recommendations of the report can be absorbed into regulatory and professional practice, and where needed into government policy. If they can, the increasing diversity of uses of human tissues need lead neither to overt nor to covert 'commercialisation of the human body', but will also not put unnecessary restrictions on advances in research and medical practice.
The function of local research ethics committees is to consider the ethics of research proposals using human participants. After approval has been given, there is no comprehensive system in place to monitor research and ensure that recommendations are carried out. Some suggest that research ethics committees are ideally placed to fulfil this function by carrying out random monitoring of research they have reviewed. The health service guideline creating local research ethics committees is under review.1 This paper suggests that increasing the monitoring role of ethics committees in the present climate would be inappropriate. This is due to the large workload of the committees, their voluntary nature and the change a monitoring role might cause to the relationship between researcher and ethics committee, which might herald an increasing recourse to judicial review. A radical overhaul of the system would be necessary in order for ethics committees adequately to fulfil a monitoring function.
Key Words: Research ethics committees • audit • monitoring • misconduct
Over the past three decades it has become increasingly recognized that systematic assessment of as high a proportion as possible of relevant research evidence is needed to protect the best interests of patients and the public. For example, this principle is manifested in clinical guidelines and, increasingly, in the design and monitoring of new research. For scientific and ethical reasons, those responsible for monitoring the progress of ongoing clinical trials may need to seek unpublished and interim data to protect the interests of actual or potential participants in research. The challenge facing data monitoring committees has received relatively little attention, however. In this paper we review some of the commentaries on the issue and the few accounts of actual data monitoring committee experiences. We then present details of our own recent experience as members of the data monitoring committee for the BOOST-II UK trial (ISRCTN:0084226), one of five concurrent trials assessing the level of arterial oxygen which should be targeted in the care of very premature neonates. We conclude that efficient protection both of the interests of actual or potential participants in research and of science requires that data monitoring committees have access to all relevant research, including unpublished and interim data.
The aim was to examine the use of computer and paper based systems in accident and emergency (A&E) departments in the management of patients who are frequent attenders. More than half of the A&E consultants in the Thames regions who were sent a questionnaire responded (44 of the 80). 82% of the respondents use such systems predominantly to monitor violent patients, those with Munchausen syndrome, and children on the "at risk" register. Systems currently in use fail to fulfil many of the functions that would be required of an ideal system. When using computers to store and communicate clinical data, several ethical problems were identified but these appeared to be outweighed by the practical need and were also present with paper based systems. Safeguards could also be built into computer based systems to reduce some of the ethical problems. Computer systems should be deliberately chosen and implemented in response to a specific management problem. The potential benefits should be weighed against possible damaging side effects, such as a breach of confidentiality.
A two year prospective study was performed to determine the epidemiology of Munchausen syndrome by proxy, non-accidental poisoning, and non-accidental suffocation in the UK and the Republic of Ireland. Cases were notified to the British Paediatric Association Surveillance Unit from September 1992 to August 1994 if a formal case conference had been held for the first time during that period to discuss any of the above conditions. A total of 128 cases were identified: 55 suffered Munchausen syndrome by proxy alone, 15 poisoning, and 15 suffocation; 43 suffered more than one type of abuse. The majority of children were aged under 5 years, the median age being 20 months. On 85% of occasions the perpetrator was the child's mother. In 42% of families with more than one child, a sibling had previously suffered some form of abuse. Eighty five per cent of notifying paediatricians considered the probability of their diagnosis as virtually certain before a case conference was convened. The commonest drugs used to poison were anticonvulsants; opiates were the second commonest. Sixty eight children suffered severe illness of whom eight died. The combined annual incidence of these conditions in children aged under 16 years is at least 0.5/100,000, and for children aged under 1, at least 2.8/100,000.
In 1921, Richard Bruynoghe and his student Joséph Maisin published on the first use of bacteriophages in a phage therapy context. At that time, Bruynoghe (a medical doctor) was affiliated as a professor at the KU Leuven (Belgium) for just over a decade, within the Bacteriological Institute which he founded and led. After a distinguished career (he was acting mayor of the city of Leuven-Belgium during the second World War), he received a special medical award in 1951 just before his retirement in 1952. In this perspective, he was asked to provide an overview of his research for a lay-audience within the local University magazine: Onze Alma Mater (Our alma mater). We, as current affiliates of the KU Leuven are honored to present some of his legacy, which to date has been largely overlooked in historical accounts.
bacteria; bacteriophages; historical overview; phage biology; phage therapy
In “Parental Virtues: A New Way of Thinking about the Morality of Reproductive Actions” Rosalind McDougall proposes a virtue-based framework to assess the morality of child selection. Applying the virtue-based account to the selection of children with impairments does not lead, according to McDougall, to an unequivocal answer to the morality of selecting impaired children. In “Impairment, Flourishing, and the Moral Nature of Parenthood,” she also applies the virtue-based account to the discussion of child selection, and claims that couples with an impairment are morally justified in selecting a child with the same impairment. This claim, she maintains, reveals that the flourishing of a child should be understood as requiring environment-specific characteristics. I argue that McDougall’s argument begs the question. More importantly, it does not do justice to virtue ethics. I also question to what extent a virtue ethics framework can be successfully applied to discussions about the moral permissibility of reproductive actions.
virtue ethics; child selection; disability; Rosalind McDougall