Denmark is a society that has already moved towards Big Data and a Learning Health Care System. Data from routine healthcare has been registered centrally for years, there is a nationwide tissue bank, and there are numerous other available registries about education, employment, housing, pollution, etcetera. This has allowed Danish researchers to study the link between exposures, genetics and diseases in a large population. This use of public registries for scientific research has been relatively uncontroversial and has been supported by (...) facilitative regulation that allows data to be used without the consent of data subjects. However, in the future much of the data will not be held by public authorities but by private companies. What are the implications of this shift for the governance of the research use of the data? This paper will argue that increased involvement of Research Ethics Committees and better training of researchers are necessary; and that some form of consent will have to be re-introduced. Four different consent models will be discussed: Opt-Out, Broad/Blanket consent, Dynamic consent, and Meta consent. It will be argued that a governance model including a possibility for citizens to make meta-choices strikes the best balance between individual and public interests. (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 the physician’s role in the patients’ formation of and acting on personal preferences and values, the bias and opacity problem of AI systems, and rational concerns about the future societal effects of introducing AI systems in the health care sector.
In 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 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.
The aim of this paper is to present and evaluate a specific critical discussion of Peter Singer's view on philanthropy. This critique of Singer's position takes several forms, and here we focus on only two of these. First of all, it is claimed that philanthropy (based upon the giving up of luxury goods) should be avoided, because it harms the poor. As we shall see this is a view defended by Andrew Kuper. However, philanthropy is also accused of harming the (...) poor by being sub-optimal and standing in the way of the more effective and lasting poverty relief brought about by changes in the political and economic system. This second complaint is defended by, among others, Paul Gomberg, Anthony Langlois and David Schweickart, as well as Kuper. To our knowledge, little systematic work has been done on the presentation and evaluation of theses objections to philanthropy. In what follows, the objections are dealt with in connection with private donations made by individuals, as this is the focus, and target, of the philosophers/scientists we wish to discuss. (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)
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)
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)
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)
The idea that it is acceptable to ‘nudge’ people to opt for the ‘healthy choice’ is gaining currency in health care policy circles. This article investigates whether researchers evaluating Abdominal Aortic Aneurysm Screening Programmes attempt to influence decision makers in ways that are similar to popular ‘nudging’ techniques. Comparing two papers on the health economics of AAASP both published in the BMJ within the last 3 years, it is shown that the values chosen for the health economics modelling are not (...) representative of the literature and consistently favour the conclusions of the articles. It is argued that this and other features of these articles may be justified within a Libertarian Paternalist framework as ‘nudging’ like ways of influencing decision makers, but also that these ways of influencing decision makers raise significant ethical issues in the context of democratic decision making. (shrink)
Background Denmark has implemented a comprehensive, nationwide pharmaceutical information system, and this system has been evaluated by the Danish Council of Ethics. The system can be seen as an exemplar of a comprehensive health information system for clinical use. Analysis The paper analyses 1) how informed consent can be implemented in the system and how different implementations create different impacts on autonomy and control of information, and 2) arguments directed towards justifying not seeking informed consent in this context. Results and (...) Conclusion Based on the analysis a heuristic is provided which enables a ranking and estimation of the impact on autonomy and control of information of different options for consent to entry of data into the system and use of data from the system. The danger of routinisation of consent is identified. The Danish pharmaceutical information system raises issues in relation to autonomy and control of information, issues that will also occur in relation to other similar comprehensive health information systems. Some of these issues are well understood and their impact can be judged using the heuristic which is provided. More research is, however needed in relation to routinisation of consent. (shrink)
The focus of this paper is an analysis and discussion of what kind of empirical evidence bodies that advise on or set public policy in the area of reproduction and reproductive technologies are looking for when developing new advice or policy, but the analysis has implications for other areas of ‘bioethics policy making’ as well. The paper outlines some important differences between policy making and philosophical analysis, provides an account of ‘policy relevance’ and discusses ways in which evidence may be (...) misused in policy making. The scope of the paper is, for the most part restricted to considerations of empirical evidence of a social scientific nature. (shrink)
The paper defends the so-called political conception of the scope of justice proposed by Thomas Nagel. The argument has three stages: (a) I argue that A. J. Julius’ influential criticism of the political conception can be answered. Pace Julius, actual and (relevant) hypothetical cases of state coercion do in fact involve a claim to the effect that people have a duty to obey, so the problem of justice does arise, according to Nagel’s criterion, in the critical cases scrutinised by (...) Julius. Hence the ‘perverseness’ objection lapses. (b) I argue, against other critics of Nagel’s view, that in central instances of international coercion such as immigration control people are not asked to accept the ongoing coercion. Consequently, the problem of justice does not, on Thomas Nagel’s view, arise internationally. Furthermore, to the extent that political authority is exercised internationally, it does not give rise to justificatory burdens involving principles of distributive justice.(c) I relate the notion of authority to other aspects of the political conception, including responsibility, and argue that together they constitute an attractive alternative to an influential allocative conception of justice. (shrink)
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