Smajdor argues that “recognition” is the solution to the “reifying attitude” that results from “the urge to protect ‘vulnerable’ people through exclusion from research”. Drawing on theories of reification, we argue that it is the concepts of autonomy and vulnerability themselves that have been reified, resulting in the impoverishment of approaches to autonomy at law and in research ethics. Overcoming such reification demands a deeper consideration of the grounds on which vulnerable individuals are owed recognition and thereby the forms such (...) recognition should take. Smajdor argues for a recognition that appeals to autonomy and that manifests in providing vulnerable individuals with the opportunity to assent. The problem is that this kind of recognition is dependent on a more fundamental kind. It is this second form of recognition that would need to do the heavy lifting for assent-based frameworks to avoid the same problems we find with consent. (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)
In an analysis of recent work on nudging we distinguish three positions on the relationship between nudging founded in libertarian paternalism and the protection of personal autonomy through informed consent. We argue that all three positions fail to provide adequate protection of personal autonomy in the clinical context. Acknowledging that nudging may be beneficial, we suggest a fourth position according to which nudging and informed consent are valuable in different domains of interaction.
In an analysis of artificially intelligent systems for medical diagnostics and treatment planning we argue that patients should be able to exercise a right to withdraw from AI diagnostics and treatment planning for reasons related to (1) the physician’s role in the patients’ formation of and acting on personal preferences and values, (2) the bias and opacity problem of AI systems, and (3) rational concerns about the future societal effects of introducing AI systems in the health care sector.
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.
With the increasing use of algorithms in high-stakes areas such as criminal justice and health has come a significant concern about the fairness of prediction-based decision procedures. In this article I argue that a prominent class of mathematically incompatible performance parity criteria can all be understood as applications of John Broome’s account of fairness as the proportional satisfaction of claims. On this interpretation these criteria do not disagree on what it means for an algorithm to be _fair_. Rather they express (...) different understandings of what grounds a claim to a good being allocated by an algorithmic decision procedure. I then argue that an important implication of the Broomean interpretation is that it strengthens the case for outcome-based criteria. Finally, I consider how a version of the levelling-down objection to performance parity criteria arises within the Broomean account. (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 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 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)
The Principles of Biomedical Ethics by Tom L Beauchamp and James F Childress which is now in its fourth edition has had a great influence on the development of bioethics through its exposition of a theory based on the four principles: respect for autonomy; non-maleficence; beneficence, and justice (1). The theory is developed as a common-morality theory, and the present paper attempts to show how this approach, starting from American common-morality, leads to an underdevelopment of beneficence and justice, and that (...) the methods offered for specification and balancing of principles are inadequate. (shrink)
What does it mean for algorithmic classifications to be fair to different socially salient groups? According to classification parity criteria, what is required is equality across groups with respect to some performance measure such as error rates. Critics of classification parity object that classification parity entails that achieving fairness may require us to choose an algorithm that makes no group better off and some groups worse off than an alternative. In this article, I interpret the problem of algorithmic fairness as (...) a case concerning the ethics of the distribution of algorithmic classifications across groups (as opposed to, e.g., the fairness of data collection). I begin with a short introduction of algorithmic fairness as a problem discussed in machine learning. I then show how the criticism raised against classification parity is a form of leveling down objection, and I interpret the egalitarianism of classification parity as deontic egalitarianism. I then discuss a challenge to this interpretation and suggest a revision. Finally, I examine how my interpretation provides proponents of classification parity with a response to the leveling down criticism and how it relates to a recent suggestion to evaluate fairness for automated decision-making systems based on risk and welfare considerations from behind a veil of ignorance. (shrink)
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 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)
In a recent article in the Journal 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 Manson’s considerations on the costs of a meta-consent model are incomplete and therefore misleading; 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 a model of meta-consent is more in tune with the nature of biobank research and enables autonomous choice. (shrink)
Increasingly, commissioners and providers of services for people with intellectual disabilities are turning to assistive technology and telecare as a potential solution to the problem of the increased demand for services, brought about by an expanding population of people with intellectual disabilities in the context of relatively static or diminishing resources. While there are numerous potential benefits of assistive technology and telecare, both for service providers and service users, there are also a number of ethical issues. The aim of this (...) paper is to raise these issues and to set them within the ethical framework proposed by Beauchamp and Childress. There is a need for a wider debate as a first step in the development of strategies to address the issues raised in the paper. (shrink)
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)
BackgroundThe areas of Research Ethics (RE) and Research Integrity (RI) are rapidly evolving. Cases of research misconduct, other transgressions related to RE and RI, and forms of ethically questionable behaviors have been frequently published. The objective of this scoping review was to collect RE and RI cases, analyze their main characteristics, and discuss how these cases are represented in the scientific literature.MethodsThe search included cases involving a violation of, or misbehavior, poor judgment, or detrimental research practice in relation to a (...) normative framework. A search was conducted in PubMed, Web of Science, SCOPUS, JSTOR, Ovid, and Science Direct in March 2018, without language or date restriction. Data relating to the articles and the cases were extracted from case descriptions.ResultsA total of 14,719 records were identified, and 388 items were included in the qualitative synthesis. The papers contained 500 case descriptions. After applying the eligibility criteria, 238 cases were included in the analysis. In the case analysis, fabrication and falsification were the most frequently tagged violations (44.9%). The non-adherence to pertinent laws and regulations, such as lack of informed consent and REC approval, was the second most frequently tagged violation (15.7%), followed by patient safety issues (11.1%) and plagiarism (6.9%). 80.8% of cases were from the Medical and Health Sciences, 11.5% from the Natural Sciences, 4.3% from Social Sciences, 2.1% from Engineering and Technology, and 1.3% from Humanities. Paper retraction was the most prevalent sanction (45.4%), followed by exclusion from funding applications (35.5%).ConclusionsCase descriptions found in academic journals are dominated by discussions regarding prominent cases and are mainly published in the news section of journals. Our results show that there is an overrepresentation of biomedical research cases over other scientific fields compared to its proportion in scientific publications. The cases mostly involve fabrication, falsification, and patient safety issues. This finding could have a significant impact on the academic representation of misbehaviors. The predominance of fabrication and falsification cases might diverge the attention of the academic community from relevant but less visible violations, and from recently emerging forms of misbehaviors. (shrink)
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 (1) isolation, (2) quarantine, (...) (3) recommended voluntary social distancing, (4) changes in health care provision for asymptomatic carriers of multi-resistant microorganisms, and (5) 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 (1) resource considerations, or (2) issues relating to personal responsibility. (shrink)
Background: The knowledge of scientific dishonesty is scarce and heterogeneous. Therefore this study investigates the experiences with and the attitudes towards various forms of scientific dishonesty among PhD-students at the medical faculties of all Norwegian universities.MethodAnonymous questionnaire distributed to all post graduate students attending introductory PhD-courses at all medical faculties in Norway in 2010/2011. Descriptive statistics. Results: 189 of 262 questionnaires were returned (72.1%). 65% of the respondents had not, during the last year, heard or read about researchers who committed (...) scientific dishonesty. One respondent had experienced pressure to fabricate and to falsify data, and one had experienced pressure to plagiarize data. On average 60% of the respondents were uncertain whether their department had a written policy concerning scientific conduct. About 11% of the respondents had experienced unethical pressure concerning the order of authors during the last 12 months. 10% did not find it inappropriate to report experimental data without having conducted the experiment and 38% did not find it inappropriate to try a variety of different methods of analysis to find a statistically significant result. 13% agreed that it is acceptable to selectively omit contradictory results to expedite publication and 10% found it acceptable to falsify or fabricate data to expedite publication, if they were confident of their findings. 79% agreed that they would be willing to report misconduct to a responsible official. Conclusion: Although there is less scientific dishonesty reported in Norway than in other countries, dishonesty is not unknown to doctoral students. Some forms of scientific misconduct are considered to be acceptable by a significant minority. There was little awareness of relevant policies for scientific conduct, but a high level of willingness to report misconduct. (shrink)
When is it justified to use opaque artificial intelligence (AI) output in medical decision-making? Consideration of this question is of central importance for the responsible use of opaque machine learning (ML) models, which have been shown to produce accurate and reliable diagnoses, prognoses, and treatment suggestions in medicine. In this article, I discuss the merits of two answers to the question. According to the Explanation View, clinicians must have access to an explanation of why an output was produced. According to (...) the Validation View, it is sufficient that the AI system has been validated using established standards for safety and reliability. I defend the Explanation View against two lines of criticism, and I argue that within the framework of evidence-based medicine mere validation seems insufficient for the use of AI output. I end by characterizing the epistemic responsibility of clinicians and point out how a mere AI output cannot in itself ground a practical conclusion about what to do. (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.
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.
The Covid-19 pandemic creates an unprecedented threatening situation worldwide with an urgent need for critical reflection and new knowledge production, but also a need for imminent action despite prevailing knowledge gaps and multilevel uncertainty. With regard to the role of research ethics in these pandemic times some argue in favor of exceptionalism, others, including the authors of this paper, emphasize the urgent need to remain committed to core ethical principles and fundamental human rights obligations all reflected in research regulations and (...) guidelines carefully crafted over time. In this paper we disentangle some of the arguments put forward in the ongoing debate about Covid-19 human challenge studies and the concomitant role of health-related research ethics in pandemic times. We suggest it might be helpful to think through a lens differentiating between risk, strict uncertainty and ignorance. We provide some examples of lessons learned by harm done in the name of research in the past and discuss the relevance of this legacy in the current situation. (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)
In this paper I examine the connection between accounts of biological teleology and the biocentrist claim that all living beings have a good of their own. I first present the background for biocentrists’ appeal to biological teleology. Then I raise a problem of scope for teleology-based biocentrism and, drawing in part on recent work by Basl and Sandler, I discuss Taylor and Varner’s responses to this problem. I then challenge Basl and Sandler’s own response to the scope problem for its (...) reliance on a selectionist account of organismic teleology. Finally I examine the prospects for a biocentrist response to the problem of scope based on an alternative organisational account of internal teleology. I conclude by assessing the prospects for teleology-based biocentrism. (shrink)
Several authors have argued that contractualism faces a dilemma when it comes to justifying risks generated by socially valuable activities. At the heart of the matter is the question of whether contractualists should adopt an ex post or an ex ante perspective when assessing whether an action or policy is justifiable to each person. In this paper I argue for the modest conclusion that ex post contractualism is a live option notwithstanding recent criticisms raised by proponents of the ex ante (...) perspective. I then consider how an ex post contractualist can best respond to the problem that it seems to prohibit a range of intuitively permissible and socially valuable activities. (shrink)
“Bodily autonomy” has received significant attention in bioethics, medical ethics, and medical law in terms of the general inviolability of a patient’s bodily sovereignty and the rights of patients to make choices (e.g., reproductive choices) that concern their own body. However, the role of the body in terms of how it can or does contribute to a patient’s capacity for, or exercises of their autonomy in clinical decision-making situations has not been explicitly addressed. The approach to autonomy in this paper (...) is aligned with traditional theories that conceive autonomy in terms of an individual’s capacities for, and exercises of rational reflection. However, at the same time, this paper extends these accounts by arguing that autonomy is, in part, embodied. Specifically, by drawing on phenomenological conceptions of the experience of autonomy, we argue that, in principle, the body is a necessary component of the capacity for autonomy. Secondly, through the presentation of two different cases, we highlight ways in which a patient’s body can contribute to the autonomy of treatment choices. Ultimately, we hope to encourage others to explore additional conditions under which a concept of embodied autonomy should be employed in medical decision making, how its underlying principles might be operationalised in clinical situations, and its consequences for approaches to patient autonomy in healthcare practice, policy, and law. (shrink)
Norman Daniels' and James Sabin's theory of “accountability for reasonableness” (A4R) 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)
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)
The ongoing legal and bioethics debates on consent requirements for collecting, storing, and utilizing human biological material for purposes of basic and applied research—that is, genomic research biobanking—have already managed to pass through three ostensibly dissimilar stages.
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)
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)
The purpose of this paper is to describe the scientific background to the current ethical and legislative debates about the generation and use of human stem cells, and to give an overview of the ethical issues underlying these debates. The ethical issues discussed are 1) stem cells and the status of the embryo, 2) women as the sources of ova for stem cell production, 3) the use of ova from other species, 4) slippery slopes towards reproductive cloning, 5) the public (...) presentation of stem cell research and 6) the evaluation of scientific uncertainty and its implications for public policy. (shrink)
In this paper, I discuss the aetiological account of biological interests, developed by Varner, in the context of artefactual organisms envisioned by current research in synthetic biology. In “Sections 2–5”, I present Varner's theory and criticise it for being incapable of ascribing non-derivative interests to artefactual organisms due to their lack of a history of natural selection. In “Sections 6–7”, I develop a new alternative to Varner's account, building on the organisational theory of biological teleology and function. I argue that (...) the organisational account of biological interest is superior to Varner's aetiological account because it can accommodate both artefactual and naturally evolved organisms, provides a non-arbitrary and practical way of determining biological interests, supports the claim that organisms have interests in a sense in which artefacts do not, and avoids the possibility of there being a conflict between what an organismic part is supposed to do and what is in the interest of the organism. (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)
Two protechnology arguments, the “hopeful principle” and the “automatic escalator”, often used in bioethics, are identified and critically analysed in this paper. It is shown that the hopeful principle is closely related to the problematic precautionary principle, and the automatic escalator argument has close affinities to the often criticised empirical slippery slope argument. The hopeful principle is shown to be really hopeless as an argument, and automatic escalator arguments often lead nowhere when critically analysed. These arguments should therefore only be (...) used with great caution. (shrink)
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)
Abortion remains a highly controversial issue in many countries and subject to intense public debate. The aim of this chapter is to summarize the most prominent assumptions and arguments concerning the moral and legal dimensions of abortion on which this debate rests. Where the moral justifiability of abortion is concerned, this chapter focuses on arguments relating to the moral status of the fetus or embryo, the notion of personhood, the biological development of the embryo or fetus, and the moral relevance (...) of specific points in the developmental process. In terms of the legal aspects, we consider concepts and principles invoked at law, principally, the rights of pregnant women and the medical concept of viability. For each moral and legal position in the abortion debate, we provide an overview of the principal assumptions and arguments and acknowledge the main criticisms. (shrink)
This paper discusses a recent solution to the problem of artifact phantom functions by Beth Preston. A phantom function is a function associated with a kind of artifact that it is structurally incapable of performing. Preston proposes a criterion of artifact proper function according to which phantom functions can be proper functions. This paper argues that Preston’s criterion cannot ground the teleological and normative aspects definitive of proper functions and that the proposed criterion is not consistent with Preston’s account of (...) how copies of novel prototypes acquire proper functions. The paper defends an understanding of phantom functions suggested in earlier work by Preston. (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)
New medical technologies provide us with new possibilities in health care and health care research. Depending on their degree of novelty, they may as well present us with a whole range of unforeseen normative challenges. Partly, this is due to a lack of appropriate norms to perceive and handle new technologies. This article investigates our ways of establishing such norms. We argue that in this respect analogies have at least two normative functions: they inform both our understanding and our conduct. (...) Furthermore, as these functions are intertwined and can blur moral debates, a functional investigation of analogies can be a fruitful part of ethical analysis. We argue that although analogies can be conservative; because they bring old concepts to bear upon new ones, there are at least three ways in which they can be creative. First, understandings of new technologies are quite different from the analogies that established them, and come to be analogies themselves. That is, the concepts may turn out to be quite different from the analogies that established them. Second, analogies transpose similarities from one area into another, where they previously had no bearing. Third, analogies tend to have a figurative function, bringing in something new and different from the content of the analogies. We use research-biobanking as a practical example in our investigations. (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.
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)