This article explores the issue of girls’ concerns about sexual activity in a liberal Nordic context. Drawing on ethnographic fieldwork among young people in Denmark, the article identifies three types of concerns girls can have about sexual activity: social expectations, relational expectations and dignity. Whilst contemporary research has tended to focus on the influence different sexual morality discourses have in shaping different expectations and concerns about these, little attention seems to be paid to girls’ normative concerns about sex related to (...) well-being. This article sheds light on how these normative concerns are related to girls’ sense of dignity based on Andrew Sayer’s work on dignity and moral sentiments. Finally, the article argues that tension between sexual morality discourses and moral sentiments may be the source of resistance that girls practise with a new ‘fuckboy’ discourse. (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.

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)

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)

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.

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 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.

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)

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)

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 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)

Artificial intelligence systems advising healthcare professionals will be widely introduced into healthcare settings within the next 5–10 years. This paper considers how this will sit with tort/negligence based legal approaches to compensation for medical error. It argues that the introduction of AI systems will provide an additional argument pointing towards no-fault compensation as the better legal solution to compensation for medical error in modern health care systems. The paper falls into four parts. The first part rehearses the main arguments for (...) and against no-fault compensation. The second explains why it is likely that AI systems will be widely introduced. The third part analyses why it is difficult to fit AI systems into fault-based compensation systems while the final part suggests how no-fault compensation could provide a possible solution to such challenges. (shrink)

OBJECTIVES: To study the ethical reasoning of nurses and physicians, and to assess whether or not modified focus groups are a valuable tool for this purpose. DESIGN: Discussion of cases in modified focus groups, each consisting of three physicians and three nurses. The discussion was taped and analysed by content analysis. SETTING: Five departments of internal medicine at Danish hospitals. SAMPLE: Seven discussion groups. MAIN MEASUREMENTS: Ethical content of statements, style of statements, time used by each participant. RESULTS: Danish physicians (...) and nurses do not differ in the kind of ethical reasoning they use, but physicians use more of the discussion time than nurses, they use a more assertive style of argumentation, and the solutions chosen are usually first put forward by physicians. CONCLUSION: The results and informal comparisons with similar data from long qualitative interviews indicate that groups of this kind are a useful tool for gathering data on ethical reasoning. (shrink)

This chapter analyzes the ethical issues that arise in the context of the use of physical enhancement techniques, i.e.techniques that aim at enhancing one or more physical functions of human beings. First, it discusses the different types of physical enhancement and points doping in sports is only a minor part of the whole enhancement field. Considerable attention is devoted to enhancement in sports, primarily because of the extensive extant literature. Then, the chapter moves on to problematize the concept of enhancement. (...) It shows that deciding whether something should count as an enhancement is not a matter for pure personal decision. The chapter engages with the ethical arguments put forward in the enhancement debate, showing that the validity of both the pro‐ and the anti‐enhancement arguments is context‐dependent and the growth hormone treatment can only be justifiably claimed if it aims at giving someone a height in the normal range. (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)

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 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)

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)

The Principles of Biomedical Ethics by Beauchamp and Childress is a classic in the field of medical ethics. The first edition was published in 1979 and “unleashed” the four principles of respect for autonomy, non-maleficence, beneficence, and justice on the newly emerging field. These principles were argued to be mid-level principles mediating between high-level moral theory and low-level common morality, and they immediately became very popular in writings about medical ethics. Over the years Beauchamp and Childress have developed this approach (...) and vigorously defended it against the various criticisms that have been raised. The 5th edition of this book is, as all the …. (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)

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)

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)

This article considers naturalistic analyses of the concepts of health and disease in light of the possibility of constructing novel living systems. The article begins by introducing the vision of synthetic biology as the application of engineering principles to the construction of biological systems, the main analyses of the concepts of health and disease, and the standard theories of function in artefacts and organisms. The article then suggests that reflection on the possibility of artefactual organisms amounts to a challenge to (...) the functional theories of health and disease proposed by Wakefield and Boorse. More specifically, Wakefield and Boorse's theories are reconstructed as responses to a dilemma concerning how to allow for the ascription of health and disease to artefactual organisms without at the same time opening up the possibility of diseased nonliving artefacts such as cars and computers. It is argued that neither response will enable us to ascribe health and disease to artefactual organisms, because both theories, in order to rule out the possibility of ascribing health and disease to nonliving artefacts, make such ascriptions conditional on having a natural-selection history or being part of a species which has been designed by evolution. (shrink)

Whenever embryo experimentation is discussed the question of whether it is preferable to use spare or specifically produced (‘research’) embryos for destructive embryo experimentation always enters the debate at some stage. This question is analysed, and it is suggested that the distinction is morally uninteresting, but rhetorically useful for both sides in the debate. It is further suggested that part of the force of this distinction is caused by the fact that it is parasitic on a real moral distinction based (...) on the degree to which the gametes used in the experiment are obtained by explicit or implicit coercion. (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)

We propose the FoodSmart City framework as a transdisciplinary avenue to promote sustainable seafood consumption. We argue that a change in human seafood consumption towards eating at lower trophic levels may be helped by discovering forgotten cultural practices and tapping into locally-sourced marine resources. We set out a framework of knowledge exchange and production between academia, businesses, and civil society to promote and assist healthy and ecologically sustainable living using digital tools and intangible cultural heritage while engaging with innovative chefs (...) and educationalists. The framework targets Dublin City, Ireland, but may potentially be replicated in other contexts. (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)

The use of algorithms to support prediction-based decision-making is becoming commonplace in a range of domains including health, criminal justice, education, social services, lending, and hiring. An assumption governing such decisions is that there is a property Y such that individual a should be allocated resource R by decision-maker D if a is Y. When there is uncertainty about whether a is Y, algorithms may provide valuable decision support by accurately predicting whether a is Y on the basis of known (...) features of a. Based on recent work on statistical evidence in epistemology this article presents an argument against relying exclusively on algorithmic predictions to allocate resources when they provide purely statistical evidence that a is Y. The article then responds to the objection that any evidence that will increase the proportion of correct decisions should be accepted as the basis for allocations regardless of its epistemic deficiency. Finally, some important practical aspects of the conclusion are considered. (shrink)

The question that this paper tries to answer is Q: “Can good academic bioethics be done without commitment to moral theory?” It is argued that the answer to Q is an unequivocal “Yes” for most of what we could call “critical bioethics,” that is, the kind of bioethics work that primarily criticizes positions or arguments already in the literature or put forward by policymakers. The answer is also “Yes” for much of empirical bioethics. The second part of the paper then (...) provides an analysis of Q in relation to “constructive bioethics,” that is, bioethics work aimed at providing an argument for a particular position. In this part, it is argued that a number of the approaches or methods used that initially look like they involve no commitment to moral theory, nevertheless, involve such a commitment. This is shown to be the case for reflective equilibrium, mid-level theory, the use of theory fragments, and argument by analogy. (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)

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)

“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)

This article discusses the classical problem of zero probability of universal generalizations in Rudolf Carnap’s inductive logic. A correction rule for updating the inductive method on the basis of evidence will be presented. It will be shown that this rule has the effect that infinite streams of uniform evidence assume a non-zero limit probability. Since Carnap’s inductive logic is based on finite domains of individuals, the probability of the corresponding universal quantification changes accordingly. This implies that universal generalizations can receive (...) positive prior and posterior probabilities, even for (countably) infinite domains. (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)

Dieser Aufsatz geht dem Verhältnis von Hoffnung und Melancholie in der praktischen Philosophie Kants nach. Methodischer Ausgangspunkt ist dabei Kants Rede von der ,,Revolution der Denkungsart“ als Voraussetzung des neuen Menschen, der nach dem Gesetz des moralischen Ichs zu leben versucht. Die Existenz des neuen Menschen kann, so die erkenntnisleitende These, geradezu als ein Leben im Spannungsfeld von Hoffnung und Melancholie beschrieben werden. Hierbei wird sich zeigen, dass diese Konzeption in der Kritik der reinen Vernunft eine religionsphilosophische Tiefendimension erhält, in (...) der Kant das Verhältnis von Idealität und Realität thematisiert. Desweiteren wird in der Kritik der Urteilskraft die Kunst als symbolische Darstellung der Vollkommenheit, die der moralische Mensch erstrebt, verstanden. (shrink)

Philosophical Perspectives on the Engineering Approach in Biology provides a philosophical examination of what has been called the most powerful metaphor in biology: The machine metaphor. The chapters collected in this volume discuss the idea that living systems can be understood through the lens of engineering methods and machine metaphors from both historical, theoretical, and practical perspectives. In their contributions the authors examine questions about scientific explanation and methodology, the interrelationship between science and engineering, and the impact that the use (...) of engineering metaphors in science may have for bioethics and science communication, such as the worry that its wide application reinforces public misconceptions of the nature of new biotechnology and biological life. The book also contains an introduction that describes the rise of the machine analogy and the many ways in which it plays a central role in fundamental debates about e.g. design, adaptation and reductionism in the philosophy of biology. The book will be useful as a core reading to professionals as well as graduate and undergraduate students in courses of philosophy of science and for life scientists taking courses in philosophy of science and bioethics. (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 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)