In this paper I examine the prospects for a rights-based approach to the morality of pure risk-imposition. In particular, I discuss a practical challenge to proponents of the thesis that we have a right against being imposed a risk of harm. According to an influential criticism, a right against risk-imposition will rule out all ordinary activities. The paper examines two strategies that rights theorists may follow in response to this “Paralysis Problem”. The first strategy introduces a threshold for when a (...) risk-imposition is a rights violation. The second strategy drops the claim that rights are absolute and maintains that all rights infringements generate compensation duties. It is argued that both strategies face significant practical problems of their own and that the Paralysis Problem seems fatal for a right against risk-imposition in the absence of an adequate account of the morally relevant threshold risk. (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)

Non-compliance is a label often used about patients who do not follow therapeutic advice. This paper analyses the notion of compliance, and tries to show that this notion is inextricably bound to a paternalistic conception of the doctor-patient relationship. It is proposed that we should perhaps not talk so much about the non-compliant patient, but instead shift the focus towards the non-compliant doctor.

In a recent article in theJournal of Medical Ethics,Neil Manson sets out to show that the meta-consent model of informed consent is not the solution to perennial debate on the ethics of biobank participation. In this response, we shall argue that (i) Manson’s considerations on the costs of a meta-consent model are incomplete and therefore misleading; (ii) his view that a model of broad consent passes a threshold of moral acceptability rests on an analogy that misconstrues how biobank research is (...) actually conducted and (iii) a model of meta-consent is more in tune with the nature of biobank research and enables autonomous choice. (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)

It has been argued that organs should be treated as individual tradable property like other material possessions and assets, on the basis that this would promote individual freedom and increase efficiency in addressing the shortage of organs for transplantation. If organs are to be treated as property, should they be inheritable? This paper seeks to contribute to the idea of organs as inheritable property by providing a defence of a default of the family of a dead person as inheritors of (...) transplantable organs. In the course of discussion, various succession rules for organs and their justifications will be suggested. We then consider two objections to organs as inheritable property. Our intention here is to provoke further thought on whether ownership of one's body parts should be assimilated to property ownership. (shrink)

Theorists analyzing the concept of disease on the basis of the notion of dysfunction consider disease to be dysfunction requiring. More specifically, dysfunction-requiring theories of disease claim that for an individual to be diseased certain biological facts about it must be the case. Disease is not wholly a matter of evaluative attitudes. In this paper, I consider the dysfunction-requiring component of Wakefield’s hybrid account of disease in light of the artifactual organisms envisioned by current research in synthetic biology. In particular, (...) I argue that the possibility of artifactual organisms and the case of oncomice and other bred or genetically modified strains of organism constitute a significant objection to Wakefield’s etiological account of the dysfunction requirement. I then develop a new alternative understanding of the dysfunction requirement that builds on the organizational theory of function. I conclude that my suggestion is superior to Wakefield’s theory because it (a) can accommodate both artifactual and naturally evolved organisms, (b) avoids the possibility of there being a conflict between what an organismic part is supposed to do and the health of the organism, and (c) provides a nonarbitrary and practical way of determining whether dysfunction occurs. (shrink)

In this article I consider two pertinent questions that practitioners must consider when they deploy an algorithmic system as support in clinical shared decision‐making. The first question concerns how to interpret and assess the significance of different performance measures for clinical decision‐making. The second question concerns the professional obligations that practitioners have to communicate information about the quality of an algorithm's output to patients in light of the principles of autonomy, beneficence, and justice. In the article I review the four (...) standard performance measures used to evaluate and validate algorithms, outline their role in the discussion of algorithmic fairness, and discuss the professional responsibilities that practitioners face when communicating information about these measures to patients. (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 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.

Volume 19, Issue 5, May 2019, Page 60-61.

Non-therapeutic circumcision violates boys’ right to bodily integrity as well as to self-determination. There is neither any verifiable medical advantage connected with the intervention nor is it painless nor without significant risks. Possible negative consequences for the psychosexual development of circumcised boys (due to substantial loss of highly erogenous tissue) have not yet been sufficiently explored, but appear to ensue in a significant number of cases. According to standard legal criteria, these considerations would normally entail that the operation be deemed (...) an ‘impermissible risk’—neither justifiable on grounds of parental rights nor of religious liberty: as with any other freedom right, these end where another person's body begins. Nevertheless, after a resounding decision by a Cologne district court that non-therapeutic circumcision constitutes bodily assault, the German legislature responded by enacting a new statute expressly designed to permit male circumcision even outside of medical settings. We first criticise the normative foundations upon which such a legal concession seems to rest, and then analyse two major flaws in the new German law which we consider emblematic of the difficulty that any legal attempt to protect medically irrelevant genital cutting is bound to face. (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)

Research into personal health data holds great potential not only for improved treatment but also for economic growth. In these years many countries are developing policies aimed at facilitating such research often under the banner of ‘big data’. A central point of debate is whether the secondary use of health data requires informed consent if the data is anonymised. In 2013 the Danish Minister of Health established a new register collecting data about all ritual male childhood circumcisions in Denmark. The (...) main purpose of the register was to enable future research into the consequences of ritual circumcision. This article is a study into the case of the Danish Circumcision Registry. We show that such a registry may lead to various forms of harm such as 1) overreaching social pressure, 2) stigmatization, 3) medicalization of a religious practice, 4) discrimination, and 5) polarised research, and that a person may therefore have a strong and legitimate interest in deciding whether or not such data should be collected and/or used in research. This casts doubt on the claim that the requirement of informed consent could and should be waived for all types of secondary research into registries. We finally sketch a new model of informed consent – Meta consent – aimed at striking a balance between the interests in promoting research and at the same time protecting the individual. Research participants may have a strong and legitimate interest in deciding whether or not their data should be collected and used for registry-based research whether or not their data is anonymised. (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)

This article considers the claim that gender diverse minors and their families should not be able to consent to hormonal treatment for gender dysphoria. The claim refers particularly to hormonal treatment with so-called ‘blockers’, analogues that suspend temporarily pubertal development. We discuss particularly four reasons why consent may be deemed invalid in these cases: the decision is too complex; the decision-makers are too emotionally involved; the decision-makers are on a ‘conveyor belt’; the possibility of detransitioning. We examine each of these (...) reasons and we show that none of these stand up to scrutiny, and that some are based on a misunderstanding of the nature and purposes of this stage of treatment and of the circumstances in which it is usually prescribed. Moreover, accepting these claims at face value could have serious negative implications, not just for gender diverse youth, but for many other minors and families and in a much broader range of healthcare settings. (shrink)

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)

This paper considers the ethical issues raised by biobanking of material from children who are not mature enough to give ethically valid consent. The first part considers consent requirements for entry of such materials in the biobank, whereas the second part looks at the issues that arise when a competent child later wants to withdraw previously sored materials, and at the issues that arise when there is informational entanglement between information about a parent and information about a child. The paper (...) argues for three main conclusions:That it is in most cases acceptable for parents to give proxy consent to entry of material from their children ino biobanks, even though this is not strictly speaking in the best interest of the child;that a right to withdraw from the biobank is more important when material has been entered with proxy consent; andthat disputes about the withdrawal of entangled information, i.e. information that is both about a parent and a child, should be resolved in favour of the child. (shrink)

Moore and Donnelly argue in the paper ‘The job of “ethics committees”’ that research ethics committees should be renamed and that their job should be specified as “review of proposals for consistency with the duly established and applicable code” only.1 They raise a large number of issues, but in this comment I briefly want to suggest that two of their arguments are fundamentally flawed. The first flawed argument is the argument related to the separation of powers. Moore and Donnelly proceed (...) from the premise that it is pro tanto better to have an institutional arrangement that separates code-making powers and decisional powers, and then proceed to argue that this separation is not feasible for what they call ‘ethics consistency review’ because “no matter who established any prespecified review standards, the review decision maker must be empowered at review to revise those standards when this would make for an ethical improvement. This is because any understanding of ethics-consistency standards themselves and of their implications for any case is fallible and improvable in …. (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)

This article introduces the notion of ‘routinisation’ into discussions of informed consent. It is argued that the routinisation of informed consent poses a threat to the protection of the personal autonomy of a patient through the negotiation of informed consent. On the basis of a large survey, we provide evidence of the routinisation of informed consent in various types of interaction on the internet; among these, the routinisation of consent to the exchange of health related information. We also provide evidence (...) that the extent of the routinisation of informed consent is dependent on the character of the information exchanged, and we uncover a range of causes of routinisation. Finally, the article discusses possible ways of countering the problem of routinisation of informed consent. (shrink)

Many ICT services require that users explicitly consent to conditions of use and policies for the protection of personal information. This consent may become ‘routinised’. We define the concept of routinisation and investigate to what extent routinisation occurs as well as the factors influencing routinisation in a survey study of internet use. We show that routinisation is common and that it is influenced by factors including gender, age, educational level and average daily internet use. We further explore the reasons users (...) provide for not reading conditions and policies and show that they can be grouped in meaningful ways that may delineate different types of routinsation. (shrink)

The health care systems are fairly similar in theScandinavian countries. The exact details vary, but inall three countries the system is almost exclusivelypublicly funded through taxation, and most (or all)hospitals are also publicly owned and managed. Thecountries also have a fairly strong primary caresector (even though it varies between the countries),with family physicians to various degrees acting asgatekeepers to specialist services. In Denmark most ofthe GP services are free. For the patient in Norwayand Sweden there are out-of-pocket co-payments for GPconsultations, (...) with upper limits, but consultations forchildren are free. Hospital treatment is free inDenmark while the other countries use a system without-of-pocket co-payment. There is a very strongpublic commitment to access to high quality healthcare for all. Solidarity and equality form theideological basis for the Scandinavian welfare state.Means testing, for instance, has been widely rejectedin the Scandinavian countries on the grounds thatpublic services should not stigmatise any particulargroup. Solidarity also means devoting specialconsideration to the needs of those who have lesschance than others of making their voices heard orexercising their rights. Issues of limited access arenow, however, challenging the thinking about a healthcare system based on solidarity. (shrink)

Artificial Intelligence systems—and in particular various types of machine learning models—have significant potential for improving the performance and effectiveness of diagnostics and treatme...

In her highly thought-provoking article, “The End of Personhood,” Jennifer Blumenthal-Barby (2024) presents a number of reasons why bioethics should “… end talk about personhood.” Some of these rea...

Bioethics is, as is moral philosophy in general, a field spanning a range of different philosophical approaches, normative standpoints, methods and styles of analysis, metaphysics, and ontologies. In discussing bioethics, it is often seen as useful to introduce some kind of order on the field by categorizing individual philosophers or specific arguments into a relatively small number of categories. Such categorization or classification has several functions. It may help to show the relationship between basic assumptions and specific arguments or it (...) may be used argumentatively by arguing not against a single philosopher or her arguments but against the category to which she or they belong or are claimed to belong. In this way, whole lines of argument can be disposed of in one fell swoop and whole groups of philosophers dismissed by showing that they belong to some category that can, in some way, be discounted because it is fallacious. Or, conversely, lines of arguments and groups of philosophers can be celebrated and appropriated as support for yet new arguments. (shrink)

Functional foods are a challenge tofood health policies, since they questioncentral ideas in the way that food healthpolicies have been developed over the lastdecades. Driven by market actors instead ofpublic authorities and focusing on the role ofsingle foods and single constituents in foodsfor health, they contrast traditional wisdombehind nutrition policies that emphasize therole of the diet as a whole for health.Sociological literature about food in everydaylife shows that technical rationality co-existswith other food related rationalities, such aspractical and economic rationalities, socialand (...) relational rationalities, and symbolicrationalities that influence citizens' ordinaryeating habits. An examination of lay views onexpert knowledge about food and health showthat skepticism exists with respect to thebasis of and balance of expert advice. Critical points with respect to how functionalfoods may influence routines in the populationswith relevance for public health include thefact, that they promote a way of thinking offood and health that is in conflict withwell-established practical ways of ensuring abalanced diet. (shrink)

The question of if, and under what conditions transsexuals should be allowed to participate in sports in their acquired sex is becoming increasingly relevant partly because the number of transsexuals is increasing partly because many countries now provide mechanisms for achieving legal recognition as belonging to the new acquired sex. This paper develops (1) an analysis of the justification for maintaining sex segregation in some sports and (2) an account of the rights of transsexuals to be recognised in their new (...) sex. On the basis of these two analyses it critically evaluates two set of rules for the participation of transsexuals in elite sports: the UK guidelines issued in pursuance of the Gender Recognition Act 2004 and the International Olympic Committee's guidelines. It is argued that these guidelines are conflicting and that a modified set of criteria is more justifiable. (shrink)

Putting a specific value on human life is important in many contexts and forms part of the basis for many political, administrative, commercial, and personal decisions. Sometimes, the value is set explicitly, sometimes even in monetary terms, but much more often, it is set implicitly through a decision that allows us to calculate the valuation of a life implicit in a certain rule or a certain resource allocation. We also value lives in what looks like a completely different way when (...) we evaluate whether a particular life is being or has been lived well. Both of these ways of valuing are done from an outside or third-person perspective, but there is also a third way of valuing a life which is from the first-person perspective, and which essentially asks how much my life is worth to me. Is there any connection between these different ways of valuing life, and if so what is the connection between them? This paper provides an account of John Harris’ analysis of the value of life and discusses whether it can bridge the gap between first-person and third-person evaluations of the value of life, and whether it can do so in a way that still allows for resource allocation decisions to be made in health care and other sectors. (shrink)

In the 1970s, both Denmark and Norway passed abortion legislation that is still the basis for the regulation of abortion in these countries. The legislation was fairly liberal with abortion on demand until 12 weeks of gestation and a permission system for later abortions. This article provides a brief history of the developments leading up to these political compromises and an analysis of the reasons why they have proved remarkably stable. It ends by looking at some factors that may now (...) destabilize 50 years of stable compromise about abortion. (shrink)

This response to Edgar Dahl’s paper in this issue of Health Care Analysis clarifies my argument concerning sex selection and shows that our disagreement is less than he believes it is.

The Precautionary Principle is a highly influential feature of an extensive body of environmental law, and is also highly controversial and continues to generate scholarly debates along several dim...

The target article focuses on the predictive coding of and something happened and the and response to make. We extend that scope by addressing the aspect of perception and action. Successful interaction with the environment requires predictions of everything from millisecond-accurate motor timing to far future events. The hierarchical framework seems appropriate for timing.