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.
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.
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.
“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)
I am in general a great admirer of the work of Savulescu and Harris, not because I think their conclusions are often right but because they state these conclusions and their arguments very clearly. In their joint paper “The Creation Lottery,” they do, nevertheless, tendentiously overstate their case both with regard to the conclusions that flow from identifying natural reproduction as a creation lottery and in seeing their exchange as an example of good method in bioethics. In the following short (...) comment I want to point to some of the problematic areas in S&H's arguments. (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)
Philosophy should and can contribute to bioethics Content Type Journal Article DOI 10.1007/s11016-010-9476-2 Authors Vicki Langendyk, School of Medicine, University of Western Sydney, Locked Bag 1797, Penrith South DC, NSW 1797, Australia Journal Metascience Online ISSN 1467-9981 Print ISSN 0815-0796.
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.
This new study provides a thorough analysis of the ethical reasoning of doctors and nurses. Based on extensive interviews, Soren Holm's work demonstrates how qualitative research methods can be used to study ethical reasoning, and that the results of such studies are important for normative ethics, that is, the analysis of how health care professionals ought to act.
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 the physician’s role in the patients’ formation of and acting on personal preferences and values, the bias and opacity problem of AI systems, and rational concerns about the future societal effects of introducing AI systems in the health care sector.
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.
This paper develops a general approach to how society should compensate for losses that individuals incur due to public health interventions aimed at controlling the spread of infectious diseases. The paper falls in three parts. The first part provides an initial introduction to the issues and briefly outlines five different kinds of public health interventions that will be used as test cases. They are all directed at individuals and aimed at controlling the spread of infectious diseases isolation, quarantine, recommended voluntary (...) social distancing, changes in health care provision for asymptomatic carriers of multi-resistant microorganisms, and vaccination. The interventions will be briefly described including the various risks, burdens and harms individuals who are subject to these interventions may incur. The second part briefly surveys current compensation mechanisms as far as any exist and argue that even where they exist they are clearly insufficient and do not provide adequate compensation. The third part will then develop a general framework for compensation for losses incurred due to public health interventions in the infectious disease context. This is the major analytical and constructive part of the paper. It first analyses pragmatic and ethical arguments supporting the existence of an obligation on the part of the state to compensate for such losses, and then considers whether this obligation can be defeated by resource considerations, or issues relating to personal responsibility. (shrink)
In this response to Neil Manson’s latest intervention in our debate about the best consent model for biobank research we show, contra Manson that the ‘expiry problem’ that affects broad consent models because of changes over time in methods, purposes, types of data used and governance structures is a real and significant problem. We further show that our preferred implementation of meta consent as a national consent platform solves this problem and is not subject to the cost and burden objections (...) that Manson raises. (shrink)
Frailty is a state of increased vulnerability to poor resolution of homeostasis after a stressor event. Frailty is most frequently assessed in the old using the Clinical Frailty Scale (CSF) which ranks frailty from 1 to 9. This assessment typically takes less than one minute and is not validated in patients with learning difficulties or those under 65 years old. The National Institute for Health and Care Excellence (NICE) developed guidelines that use “frailty” as one of the priority-setting criteria for (...) how scarce, but potentially lifesaving, health care resources should be allocated during the COVID-19 pandemic. Similar guidelines have been developed elsewhere. This paper discusses the ethical implications of such rationing and argues that this is an unproven and ethically problematic form of health care rationing. It specifically discusses: (1) how the frailty ascription becomes a self-fulfilling prophecy, (2) the problematic use of “frailty” in COVID-19 “triage,” (3) the circularity of the link between age and frailty, (4) indirect discrimination because of the use of a seemingly neutral criterion in health care rationing, and (5) the difficult link between comorbidities and frailty. It is found that there was no research into the use of global frailty scores as a criterion for access to acute treatment before January 2020 and so it is concerning how readily frailty scoring has been adopted to ration access to potentially lifesaving treatments. Existing gerontological frailty scoring systems have not been developed for this purpose, and repurposing them creates significant ethical issues. (shrink)
This paper argues that a precautionary approach to scientific progress of the sort advocated by Walter Glannon with respect to life-extending therapies involves both incoherence and irresolvable paradox. This paper demonstrates the incoherence of the precautionary approach in many circumstances and argues that with respect to life-extending therapies we have at present no persuasive reasons for a moratorium on such research.
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)
Cardiff Law School, Museum Avenue, Cardiff CF10 3AX, UK. Tel: +44(0)2920875447, Fax: +44(0)2920874097; Email: Holms{at}cardiff.ac.uk ' + u + '@' + d + ' '//--> Abstract The paper presents a brief overview of current knowledge about (i) the link between parental behaviour and lifestyle and childhood obesity, (ii) the many other factors influencing overweight and obesity rates in children and (iii) the effectiveness of interventions in children who are already overweight and obese. On the basis of this, it is analysed (...) to what extent it is meaningful to attribute causal and moral responsibility to parents in theory and in practice. It is argued that although there is a sense in which many parents are causally and morally responsible for the obesity of their children, most parents are not blameworthy and the attribution of parental responsibility in most cases does not justify intervention in the family context by society on behalf of the children. In the analysis of the possible justification of more general interventions, parallels are drawn to the distinction between hard and soft forms of paternalism. Train up a child in the way he should go; and when he is old, he will not depart from it. (Proverbs 22: 6) For I have told him that I will judge his house for ever for the iniquity which he knoweth; because his sons made themselves vile, and he restrained them not. 1. (Samuel 3: 13) CiteULike Connotea Del.icio.us What's this? (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)
Norman Daniels' and James Sabin's theory of “accountability for reasonableness” is a much discussed account of due process for decision-making on health care priority setting. Central to the theory is the acceptance that people may justifiably disagree on what reasons it is relevant to consider when priorities are made, but that there is a core set of reasons, that all centre on fairness, on which there will be no disagreement. A4R is designed as an institutional decision process which will ensure (...) that only those reasons which everybody will agree are relevant and appropriate form part of decision-making. The argument which we will put forward in this paper questions whether it is a simple matter to delineate the core set of reasons and claims that it is a potential problem in A4R that it does not provide an indication of the exact content of this process.The paper first briefly outlines the content of A4R. It is argued that disagreement on what services should be high priorities cannot be resolved solely with a reference to “due process.” In order to retain consistency over time, decision-makers are required to agree and articulate what reasons qualify as relevant and how conflicting reasons are to be balanced in the course of the process.The second and main part of the paper then considers how the reason of “solidarity” can be handled within the A4R framework, and it is shown that deciding whether solidarity should be admitted to the core set of allowable reasons is not a simple matter. (shrink)
This paper considers the relation between medical ethics (ME) and common morality (CM), professional norms, and moral philosophy. It proceeds by analyzing two recent book-length critical analyses of this relationship by Bob Baker in “The Structure of Moral Revolutions—Studies of Changes in the Morality of Abortion, Death, and the Bioethics Revolution” and Rosamond Rhodes in “The Trusted Doctor—Medical Ethics and Professionalism.” It argues that despite the strengths of these critical arguments, there is nevertheless a relationship between ME, understood as the (...) professional ethics of the healthcare professions, and both CM and moral philosophy. It also argues that ME cannot and should not be understood purely as the internally developed professional norms of the medical or healthcare professions. (shrink)
In her paper ‘Why Not Common Morality?’, Rosamond Rhodes argues that medical ethics cannot and should not be derived from common morality and that medical ethics should instead be conceptualised as professional ethics and the content left to the medical profession to develop and decide.1 I have considerable sympathy with the first claim and have myself argued along somewhat similar lines.2 I am, however, very sceptical about elements of the second claim and will briefly explain why. The first part of (...) Rhodes’s constructive argument is to show that practising medicine is not only a role, it is something more. Medicine is a profession and as such its members have to internalise and personally endorse a specific ethics. Rhodes is careful to state that more work is needed to complete the justification for this claim, but the arguments she does provide are strangely ahistorical. First, it is not that long ago that what we now conceive of as one profession was actually two very strictly separated professions, that is, university educated physicians and apprenticed surgeons. Can we really be certain that medicine is now one, unified profession1? Second the way butchers, bakers and candlestick makers are traduced is also oddly ahistorical. It is only fairly recently in many countries that anyone can butcher meat, bake bread or make candlesticks and legally sell the product to the public. Historically these trades have in Europe not been mere roles, but …. (shrink)
One of the ways in which public health officials control outbreaks of epidemic disease is by attempting to control the situations in which the infectious agent can spread. This may include isolation of infected persons, quarantine of persons who may be infected and detention of persons who are present in or have entered premises where infected persons are being treated. Most who have analysed such measures think that the restrictions in liberty they entail and the detriments in welfare they impose (...) can be justified and this paper proceeds from the assumption that detention measures are justifiable in some circumstances. Such measures are often implemented without any compensation being given to the persons who are detained. This raises the question: What do we owe to those whose liberty is justifiably restricted (e.g. through isolation, quarantine or detention) as a public health measure during a public health emergency? More specifically, do we owe them compensation for any losses they experience? The paper falls in four main sections. The first section provides examples of the current regulatory state of affairs from the US, Canada and WHO. The second section lays out the liberal, welfarist and pragmatic arguments for providing compensation. The third section discusses the arguments against compensation and the fourth and final section provides the conclusion. It is argued that the arguments for providing compensation clearly outweigh the counterarguments and that the default public policy therefore should be that compensation is provided. (shrink)
Background There has been debate on whether a global or unified field of bioethics exists. If bioethics is a unified global field, or at the very least a closely shared way of thinking, then we should expect bioethicists to behave the same way in their academic activities anywhere in the world. This paper investigates whether there is a 'global bioethics' in the sense of a unified academic community. Methods To address this question, we study the web-linking patterns of bioethics institutions, (...) the citation patterns of bioethics papers and the buying patterns of bioethics books. Results All three analyses indicate that there are geographical and institutional differences in the academic behavior of bioethicists and bioethics institutions. Conclusion These exploratory studies support the position that there is no unified global field of bioethics. This is a problem if the only reason is parochialism. But these regional differences are probably of less concern if one notices that bioethics comes in many not always mutually understandable dialects. (shrink)
This comment responds to Kevin Warwick’s article on predictability and responsibility with respect to brain-machine interfaces in action. It compares conventional responsibility for device use with the potential consequences of phenomenological human-machine integration which obscures the causal chain of an act. It explores two senses of “responsibility”: 1) when it is attributed to a person, suggesting the morally important way in which the person is a causal agent, and 2) when a person is accountable and, on the basis of fairness (...) about rewards and sanctions, has a duty to act responsibly and accept liability. The comment suggests that, in the absence of absolute knowledge and predictability, we continue to engage in practical forms of reasoning about the responsibility for BMI-use in ways which are inclusive of uncertainties about the liability of persons versus devices and those who create them. (shrink)
The Future of Human Reproduction brings together new work, by an international group of contributors from various fields and perspectives, on ethical, social, and legal issues raised by recent advances in reproductive technology. These advances have put us in a position to choose what kindsof children and parents there should be; the aim of the essays is to illuminate how we should deal with these possibilities for choice. Topics discussed include gender and race selection, genetic engineering, fertility treatment, ovarian tissue (...) transfer, and post-menopausal pregnancy. The centralfocus of the volume is the interface between reproductive choice and public regulation. (shrink)
When children are too young to make their ownautonomous decisions, decisions have to be madefor them. In certain contexts we allow parentsand others to make these decisions, and do notinterfere unless the decision clearly violatesthe best interest of the child. In othercontexts we put a priori limits on whatkind of decisions parents can make, and/or whatkinds of considerations they have to take intoaccount. Consent to medical research currentlyfalls into the second group mentioned here. Wewant to consider and ultimately reject one (...) ofthe arguments put forward for putting medicalresearch into the second category. We willargue that some objections to children'sparticipation in research are either based onan implausibly restrictive conception of whatis in fact in the child's best interests orthat there is an implicit and false premisehidden in this argument; i.e., the premise thatour children have so deeply fallen into moralturpitude that we must assume that they wouldnot want to fulfill their moral obligations,or, that they will grow up to be morallydeficient and will then wish not to have actedwell while a child. (shrink)
In their intriguing and closely argued paper Nielsen Busch and Mjaaland argue that the “Dead Donor Rule” (DDR) has been consistently misinterpreted and that it should properly be understood as a ru...
In discussions about the legalisation of active, voluntary euthanasia it is sometimes claimed that what should happen in a liberal society is that the two sides in the debate “agree to disagree”. This paper explores what is entailed by agreeing to disagree and shows that this is considerably more complicated than what is usually believed to be the case. Agreeing to disagree is philosophically problematic and will often lead to an unstable compromise.
On one conception of "best interest" there can only be one course of action in a given situation that is in a person's best interest. In this paper we will first consider what theories of "best interest" and rational decision-making that can lead to this conclusion and explore some of the less commonly appreciated implications of these theories. We will then move on to consider what ethical theories that are compatible with such a view and explore their implications. In the (...) second part of the paper we will explore a range of possible criticisms of these views. And in the third part we will criticise the view that a court is always or even often in a good position to decide what the patient's best interest is. In the fourth and final part we will put forward a reconstructive proposal aimed at saving whatever is sound in the "best interest" conception. (shrink)
In this issue of the Hastings Center Report, Moti Gorin, Steven Joffe, Neal Dickert, and Scott Halpern offer a comprehensive defense of the use of nudging techniques in the clinical context, with the aim of promoting the best interests of patients. Their argument is built on three important claims: Nudging is ubiquitous and inescapable in clinical choice situations, and there is no neutral way of informing patients about their treatment choices; many patients do not have authentic preferences concerning their treatment (...) choices, and those that do can easily resist nudging; and, finally, since many people lack authentic preferences and those that do can still act on their preferences, nudging in the patients’ best interest is justified. I agree with the authors that if these three claims stand up to scrutiny, then they will provide a justification for many types of clinical nudging. I am, however, skeptical as to whether the claims can be sustained, despite the valiant efforts of Gorin and colleagues. (shrink)
The increased use of information technology in every day health care creates vast amounts of stored health data that can be used for research. The secondary research use of routinely collected data raises questions about appropriate consent mechanisms for such use. One option is meta consent where individuals state their own consent preferences in relation to future use of their data, e.g. whether they want the data to be accessible to researchers under conditions of specific consent, broad consent, blanket consent (...) or not at all. This study investigates whether meta consent preferences can be successfully elicited by a smartphone application in the adult Danish population. A smartphone app was developed for the elicitation of meta consent preferences. An invitation to use the app was distributed to a stratified, representative sample of the Danish adult population. The meta consent choices, the use of the app, user experience data, and demographic data were logged and analysed statistically using IBM SPSS version 20. Of 1000 potential respondents 221 used the app. One hundred eighty-eight of the respondents were female and 103 male. The age range was 19 to 79 years with an average of 51 years. Most users indicate 1) that they find the choices they are asked to make easy to understand, 2) that the application is easy to use, and 3) that this kind of choice should be offered to people. It is possible to collect meta consent preferences in the general, adult population using a smartphone app. (shrink)
This paper considers the argument that if the ban on doping in sports was abolished it would be possible to have doping under medical control, i.e. open doping, prescribed by doctors with collection of reliable information about effects and side-effects. A game-theoretic argument is developed showing that this positive scenario is very unlikely to be instantiated given reasonable assumptions about the motivation of sportspersons and sports doctors. It is furthermore shown that the standard arguments against the current ban on doping (...) also entail that if doping was made legal any requirements that it should be open doping could not be justified. (shrink)
The paper by Lynch et al. argues that payments to research participants in biomedical research can be divided into three different categories, reimbursement, compensation, and incentive and...
In the paper ‘Genetic information, insurance, and a pluralistic approach to justice’, Jonathan Pugh1 develops an argument from unresolved pluralism in our theories of justice, via the pluralism this occasions in relation to the specific question of the use of genetic test results in insurance underwriting, to the conclusion that the UK regulatory approach in relation to the use of GTRs in insurance is broadly correct.1 Pugh’s argument is wide-ranging and I cannot provide a complete critique of it in this (...) short comment, but I will gesture towards some strands of the argument that are potentially problematic. The first potential problem in the argument is that Pugh bases his argument on a very extensive range of accounts of justice, including pure maximising consequentialism, strict egalitarianism and libertarianism, among many others. If these are all accounts of justice, it is not strange that there is pluralism of conclusions in relation to a specific question of justice or discrimination, such as the use of GTRs in the underwriting of specific kinds of insurance contracts. Pugh’s range, for instance, includes accounts of justice that deny the direct importance of distributive concerns as well as accounts that see distributive concerns as crucial. These accounts disagree not only about the answer to Pugh’s question but also about …. (shrink)
A number of papers have appeared recently arguing for the conclusion that it is ethically acceptable to infect healthy volunteers with severe acute respiratory syndrome coronavirus 2 as part of research projects aimed at developing COVID-19 vaccines or treatments. This position has also been endorsed in a statement by a working group for the WHO. The papers generally argue that controlled human infection is ethically acceptable if the risks to participants are low and therefore acceptable, the scientific quality of the (...) research is high, the research has high social value, participants give full informed consent, and there is fair selection of participants. All five conditions are necessary premises in the overall argument that such research is ethically acceptable. The arguments concerning risk and informed consent have already been critically discussed in the literature. This paper therefore looks specifically at the arguments relating to condition 3 ‘high social value’ and condition 5 ‘fair selection of participants’ and shows that whereas they may be valid, they are not sound. It is highly unlikely that the conditions that are necessary for ethical CHI trials to take place will be fulfilled. Most, if not all, CHI trials will thus be well intentioned but unethical. (shrink)