This paper highlights a feature common to many ethical guidelines—namely, the idea that the interests of the individual shall always prevail over the interests of science and society. The paper presents how some major ethical guidelines treat the balancing of research interests against those of research subjects and spells out the difficulties in interpreting the principle of the primacy of the individual in a way that can be action-guiding. It suggests various alternative interpretations of the primacy of the individual and (...) argues that they do not hold. Finally, the implications of this analysis for ethical guidelines are discussed. (shrink)

Empirical findings from a Swedish longitudinal screening study show that many of the research subjects had a limited understanding of the study. Nevertheless they were satisfied with the understanding they had and found it sufficient for informed continued participation. Were they wrong? In this paper, it is argued that the kind of understanding that is morally required depends partly on the kind of understanding on which the research subjects want to base their decisions, and partly on what kind of knowledge (...) they lack. Researchers must ensure that the information process is not flawed and that participants receive the information they want. To achieve this, new information efforts may be needed. Researchers must also ensure that research subjects have knowledge about aspects of importance to them. Lack of understanding may, however, be the result of conscious choices by research subjects to disregard some of the information because it is not important to them. Such choices should normally be respected. (shrink)

Data from the 5–6 year control questionnaire of the ABIS study, a Swedish prospective screening of children for Type 1 diabetes, indicates a genuine trust in the researchers—very few participating families expressed concern about their participation. Nevertheless, a majority do not want their research data to be used beyond the agreement of the original consent. They want to be asked for renewed consent in such cases. A vast majority also want potential high-risk information about their child to be communicated to (...) them. Most participating families want this regardless of whether any preventive treatment is available. Although potential benefits for their child is a motivation for participation for a majority of the respondents, they also claim to be motivated by altruistic reasons. These results are compared to results from two similar studies in the UK. (shrink)

Are fake diagnoses and false or misleading certificates permissible means of helping patients? This question is examined in relation to four examples from Swedish health care: the sterilisation case, the asylum case, the virginity case, and the adoption case.We argue that both consequentialist and deontological ethical theories, to be reasonable, need to balance values, principles, and interests such as wellbeing, truthfulness, autonomy, personal integrity, trust in the medical profession, and abidance by national legislation.We conclude that it can be justifiable for (...) physicians to fake diagnoses and write false or misleading certificates in order to help patients when not doing so has dire consequences. However, physicians must also consider the long-term effects of making exceptions to honest, non-deceitful behaviour based on the best empirical evidence available. Otherwise valuable social practices might erode and public confidence in physicians be threatened. (shrink)

Although stability is a central notion in several academic disciplines, the parallelsremain unexplored since previous discussions of the concept have been almostexclusively subject-specific. In the literature we have found three basic conceptsof stability, that we call constancy, robustness, and resilience. They are all foundin both the natural and the social sciences. To analyze the three concepts we introducea general formal framework in which stability relates to transitions between states. Itcan then be shown that robustness is a limiting case of resilience, (...) whereas neitherconstancy nor resilience can be defined in terms of the other. Hence, there are twobasic concepts of stability, both of which are used in both the social and the naturalsciences. This congruence in the concepts of stability is of particular interest forendeavours to construct models that represent both natural and social phenomena. (shrink)

Two questionnaires directed to Swedish physicians and a sample of the Swedish population investigated attitudes towards physician-assisted suicide (PAS). The aim of the present work was to analyse qualitative data from these questionnaires in order to explore how respondents reason about PAS. Data were analysed in two steps. First, we categorized different kinds of responses and identified pro and con arguments. Second, we identified general conclusions from the responses. The data reflect the differences in attitudes towards PAS among the public (...) and physicians, with the former mainly in favour of PAS and the latter mainly against. There was, however, considerable agreement about what requirements must be met before PAS could be considered ethical. Many arguments against PAS concerned the professional role of physicians, which indicates that it may not be assisted suicide as such that many PAS opponents disagree with, but rather that it is handled by physicians in the regular health-care system. (shrink)

Research ethics, once a platform for declaring intent, discussing moral issues and providing advice and guidance to researchers, has developed over time into an extra-legal regulatory system, complete with steering documents (ethics guidelines), overseeing bodies (research ethics committees) and formal procedures (informed consent). The process of institutionalizing distrust is usually motivated by reference to past atrocities committed in the name of research and the need to secure the trustworthiness of the research system. This article examines some limitations of this approach. (...) First, past atrocities cannot provide the necessary justification unless institutionalized distrust is a necessary or efficient means to prevent future ones – and there are several reasons to doubt this. Second, the efficacy of ethics review in safeguarding morally acceptable research depends on the moral competence and integrity of individual researchers – the very qualities that institutionalized distrust calls into question. Third, ethics guidelines cannot, as is sometimes assumed, educate or guide researchers in moral behaviour unless they already possess considerable capacity for moral judgment. Fourth, institutionalized distrust is a potential threat to the moral competence and integrity of researchers by encouraging a blinkered view of ethical issues, inducing moral heteronomy through incentives, and alienating them to research ethics. We conclude that the moral problem posed by inappropriate short-term behaviour on behalf of researchers is dwarfed by the potential long-term consequences if their moral competence is allowed to deteriorate. Measures must therefore be taken to ensure that researchers are equipped to take their individual responsibility and are not obstructed from so doing. (shrink)

There is an increased focus on, and evidence of, children's capability to both understand and make decisions about issues relating to participation in medical research. At the same time there are divergent ideas of when, how and to what extent children should be allowed to decide for themselves. Furthermore, little is known about parents' views on these matters, an important issue since they often provide the formal consent. In this questionnaire study of 2500 families in south-east Sweden (with and without (...) research experience) we explored parents' views on issues relating to information, consent and research data. We found that parents are generally positive about supplying their child with individual information (93.3%; median age 7) and assuring the child's consent/assent to participation (74.3%; median age 12). However, parents' views vary regarding the extent to which children should influence research data: as many as 47–61% of our sample were opposed to children's rights to decide about the use and storage of biological samples and natural history data. Parents who are opposed to child consent and a wider influence on their research participation argue that parental authority and research quality are two important factors opposing enhanced child influence. Drawing on this, we underline the need to discuss how to balance children's rights against parental autonomy and research interests before implementing any standardized protocols granting children the right to consent and revoke data in long-term research. (shrink)

The objective of the present paper is to explore parents' views on safety and confidentiality, information and consent, the importance of different kinds of research, and their responsibilities regarding children's participation. A questionnaire was distributed to 2500 families in south-east Sweden with children born during the years 1997–1999; 1302 responded. The sample was chosen to include views of families with and without earlier research experience. A clear majority of responding parents stated that parents have a moral responsibility to let their (...) children participate in research that is considered important, safe and moderately time-consuming. Respondents stressed the importance of thorough review and control of research involving children. Respondents also found it important that parents are guaranteed the right to decide about their children's participation and that they are thoroughly informed on central aspects of the study. (shrink)

Based on extensive questionnaire data, this paper focuses on parents’ views about children’s right to decide about participation in research. The data originates from 4000 families participating in a longitudinal prospective screening as 1997. Although current regulations and recommendations underline that children should have influence over their participation, many parents in this study disagree. Most (66%) were positive providing information to the child about relevant aspects of the study. However, responding parents were split about whether or not children should at (...) some point be allowed decisional authority when participating in research: 41.6% of the parents reported being against or unsure. Those who responded positively believed that children should be allowed to decide about blood-sampling procedures (70%), but to a less extent about participation (48.5%), analyses of samples (19.7%) and biological bank storage (15.4%). That as many as possible should remain in the study, and that children do not have the competence to understand the consequences for research was strongly stressed by respondents who do not think children should have a right to decide. When asked what interests they consider most important in paediatric research, child autonomy and decision-making was ranked lowest. We discuss the implications of these findings. (shrink)

Queen Christina of Sweden was unconventional in her time, leading to hypotheses on her gender and possible hermaphroditic nature. If genetic analysis can substantiate the latter claim, could this bring the queen into disrepute 300 years after her death? Joan C. Callahan has argued that if a reputation changes, this constitutes a change only in the group of people changing their views and not in the person whose reputation it is. Is this so? This paper analyses what constitutes change and (...) draws out the implications to the reputation of the dead. It is argued that a reputation is a relational property which can go through changes. The change is “real” for the group changing their views on Queen Christina and of a Cambridge kind for the long dead queen herself. Cambridge changes result in new properties being acquired, some of which can be of significance. (shrink)

In Sweden, most patients are recruited into biobank research by non-researcher doctors. Patients' trust in doctors may therefore be important to their willingness to participate. We suggest a model of trust that makes sense of such transitions of trust between domains and distinguishes adequate trust from mistaken trust. The unique position of doctors implies, we argue, a Kantian imperfect duty to compensate for patients' mistaken trust. There are at least three kinds of mistaken trust, each of which requires a different (...) set of countermeasures. First, trust is mistaken when necessary competence is lacking; the competence must be developed or the illusion dispelled. Second, trust is irrational whenever the patient is mistaken about his actual reasons for trusting. Care must therefore be taken to support the patient's reasoning and moral agency. Third, some patients inappropriately trust doctors to recommend only research that will benefit them directly. Such trust should be counteracted by nurturing a culture where patients expect to be asked occasionally to contribute to the common good. (shrink)

Based on extensive clinical questionnaire data, this paper explores the relation between research subjects’ self-assessed understanding and actual knowledge of a large-scale predictive screening study, and its implications for the proper handling of information and consent routines in longitudinal studies. The intitial data show that low self-assessed understanding among participants was correlated with limited knowledge, concern over participation and collected samples, less satisfaction with information, and feeling passive or negative towards the study. Among those reporting high understanding, a non-negligible number (...) displayed a lack of knowledge regarding central aspects of the study. Regarding high assessed understanding, the multivariate analysis identified the main predictor variables to be knowledge, having a positive attitude towards participation and the study itself, being satisfied with information, having a stable psychosocial background and feeling calm regarding the handling of samples. These findings indicate that to evaluate participants' understanding through self-assessment may not be reliable method. Self-assessed understanding may rather be a good indicator of general attitudes than a tool for analysing content. The data also show that actual understanding varies considerably among participants, suggesting that more effort needs to be put into adjusting the information to the needs of different subgroups. It is argued that when doing this, researchers in longitudinal studies must be careful not to exhaust participants with excessive information that they do not want and that may cause them to drop out. The ethical relevance of obtaining repeated consents in longitudinal research is discussed. (shrink)

The aim of this study was to investigate patients' experiences of not being treated well in medical health care in Stockholm County, Sweden. The study was conducted by implementing qualitative content analysis using categorization of empirical material for 2006 and 2007 provided by the Patients' Advisory Committee (Patientnämnden) in Stockholm. Complaints about not being treated well accounted for 13% of all complaints to the Patients' Advisory Committee. A sample of those who complained about their medical treatment shows that about 30% (...) of these complaints also involved experiences of being badly received. Categorization of the complaints about being badly treated resulted in the following 11 categories: (1) rude, aggressive or arrogant behaviour; (2) being ignored; (3) being denied examinations or treatments; (4) lack of empathy among personnel; (5) lack of respect for personal integrity; (6) lack of time/waiting time; (7) personnel not separating private issues from their professional role; (8) injustice and discrimination; (9) sexual harassment; (10) coercion and violence and (11) unspecified bad treatment. In relation to the total number of patients, women were over-represented in all categories. In conclusion, what patients react most strongly against is when health-care personnel treat them disrespectfully by not abiding by established social norms. The results indicate that the combination of failure in medical treatment and not receiving an apology often leads patients to complain to the Patients' Advisory Committee. (shrink)

There is an increased focus on, and evidence of, children's capability to both understand and make decisions about issues relating to participation in medical research. At the same time there are divergent ideas of when, how and to what extent children should be allowed to decide for themselves. Furthermore, little is known about parents' views on these matters, an important issue since they often provide the formal consent. In this questionnaire study of 2500 families in south-east Sweden we explored parents' (...) views on issues relating to information, consent and research data. We found that parents are generally positive about supplying their child with individual information and assuring the child's consent/assent to participation. However, parents' views vary regarding the extent to which children should influence research data: as many as 47–61% of our sample were opposed to children's rights to decide about the use and storage of biological samples and natural history data. Parents who are opposed to child consent and a wider influence on their research participation argue that parental authority and research quality are two important factors opposing enhanced child influence. Drawing on this, we underline the need to discuss how to balance children's rights against parental autonomy and research interests before implementing any standardized protocols granting children the right to consent and revoke data in long-term research. (shrink)

In spite of the growing interest in nursing ethics, few studies have focused on ethical dilemmas experienced by nurses working with clinical studies as ‘research nurses’. The aim of the present study was to describe and explore ethical dilemmas that Swedish research nurses experience in their day-to-day work. In a qualitative study a purposeful sample of six research nurses from five wards of differing disciplines in four Swedish hospitals was interviewed. The analysis displayed several examples of ethical dilemmas, primarily tensions (...) between the nurses’ obligations to the study and to the patients involved. A guiding moral principle for the nurses was patient-centeredness, where the interest of research must not override the interest of the patient. In situations where tensions between research and patient interests occurred, and doctors and nurses disagreed upon the judgement, the nurses sometimes chose to follow the doctors’ advice, and thus acted against their own moral judgment. Such situations seemed to create feelings of moral distress among the nurses. They described their profession as being ‘invisible’ and as lacking opportunities for ethical competence building. The conclusion is that research nurses frequently experience severe and difficult ethical dilemmas in their daily work. They need to be acknowledged as a particular profession in the health care organisation and encouraged to develop their specific ethical competence. (shrink)

There is a growing interest in ethical competence-building within nursing and health care practising. This tendency is accompanied by a remarkable growth of ethical guidelines. Ethical demands have also been laid down in laws. Present-day practitioners and researchers in health care are thereby left in a virtual cross-fire of various legislations, codes, and recommendations, all intended to guide behaviour. The aim of this paper was to investigate the role of ethical guidelines in the process of ethical competence-building within health care (...) practice and medical research. A conceptual and critical philosophical analysis of some paragraphs of the Helsinki Declaration and of relevant literature was performed. Three major problems related to ethical guidelines were identified, namely, the interpretation problem (there is always a gap between the rule and the practice, which implies that ethical competence is needed for those who are to implement the guidelines); the multiplicity problem (the great number of codes, declarations, and laws might pull in different directions, which may confuse the health care providers who are to follow them); and the legalisation problem (ethics concerns may take on a legal form, where ethical reflection is replaced by a procedure of legal interpretations). Virtue ethics might be an alternative to a rule based approach. This position, however, can turn ethics into a tacit knowledge, leading to poorly reflected and inconsistent ethical decisions. Ethical competence must consist of both being (virtues) and doing (rules and principles), but also of knowing (critical reflection), and therefore a communicative based model is suggested. (shrink)

In the long-running debate on the interest of the dead, Joan C. Callahan argues against such interests and although Søren Holm for practical reasons is prepared to consider posthumous interests, he does not see any moral basis to support such interests. He argues that the whole question is irresolvable, yet finds privacy interests where Tutankhamen is concerned. Callahan argues that there can be reasons to hold on to the fiction that there are posthumous interests, namely if it is comforting for (...) the living and instrumental for society. Thus, despite arguing against the position that the dead have any interests or for any moral basis for such interests, these “interests” are still taken into consideration in the end. This shows the unsatisfactory basis of their positions and indicates the tenacity of the moral intuition that the dead can have moral claims on the living. One example of a posthumous interest is the interest in one’s good name. Here we argue that it is an interest of moral significance. This implies that if individuals restrict use of their sample when they are still alive, those restrictions apply after their death. Further, it implies that one should be concerned with the reputation of historic persons. Research that defeats these interests calls for justification. We have suggested two lines of thinking along which such a discussion could go: investigating the truth-value of the good name and the relevance of bringing it into possible disrepute. (shrink)

Bioethicists have for quite some time discussed the right to know and the right not to know personal health information, such as genetic information acquired in health care and incidental health-related findings in research. Several international ethical guidelines explicitly defend these rights.My own interest in these matters stems from my participation in ethics-related research tied to a longitudinal screening study on Type I diabetes involving young children. A few of the participating parents did not want to be informed if the (...) study revealed their child had a high risk of developing diabetes. This response was troublesome, not least since the information would concern the child's and not the parents’ health. Our inclination was that there cannot be a right not to know that should be granted without qualifications. Furthermore, other contextual factors, e.g., that parents experienced pressure to participate and felt concern about some of the personal data handled in the study, gave reason to question whether autonomous decisions were made regarding participation. The autonomy of their expressed desire not to know was therefore questionable. (shrink)

Fetal alcohol spectrum disorders is an umbrella term covering several conditions for which alcohol consumption during pregnancy is taken to play a causal role. The benefit of individuals being identified with a condition within FASD remains controversial. The objective of the present study was to identify ethical aspects and consequences of diagnostics, interventions, and family support in relation to FASD. Ethical aspects relating to diagnostics, interventions, and family support regarding FASD were compiled and discussed, drawing on a series of discussions (...) with experts in the field, published literature, and medical ethicists. Several advantages and disadvantages in regards of obtaining a diagnosis or description of the condition were identified. For instance, it provides an explanation and potential preparedness for not yet encountered difficulties, which may play an essential role in acquiring much needed help and support from health care, school, and the social services. There are no interventions specifically evaluated for FASD conditions, but training programs and family support for conditions with symptoms overlapping with FASD, e.g. ADHD, autism, and intellectual disability, are likely to be relevant. Stigmatization, blame, and guilt are potential downsides. There might also be unfortunate prioritization if individuals with equal needs are treated differently depending on whether or not they meet the criteria for a specific condition. The value for the concerned individuals of obtaining a FASD-related description of their condition – for instance, in terms of wellbeing – is not established. Nor is it established that allocating resources based on whether individuals fulfil FASD-related criteria is justified, compared to allocations directed to the most prominent specific needs. (shrink)

Clinical decisions are expected to be based on factual evidence and official values derived from healthcare law and soft laws such as regulations and guidelines. But sometimes personal values instead influence clinical decisions. One way in which personal values may influence medical decision-making is by their affecting factual claims or assumptions made by healthcare providers. Such influence, which we call ‘value-impregnation,’ may be concealed to all concerned stakeholders. We suggest as a hypothesis that healthcare providers’ decision making is sometimes affected (...) by value-impregnated factual claims or assumptions. If such claims influence e.g. doctor–patient encounters, this will likely have a negative impact on the provision of correct information to patients and on patients’ influence on decision making regarding their own care. In this paper, we explore the idea that value-impregnated factual claims influence healthcare decisions through a series of medical examples. We suggest that more research is needed to further examine whether healthcare staff’s personal values influence clinical decision-making. (shrink)

The procedures for structuring clinical ethics case reflections in a childhood cancer care setting are presented, including an eight-step model. Four notable characteristics of the procedures are: members of the inter-professional health care team, not external experts, taking a leading role in the reflections; patients or relatives not being directly involved; the model explicitly addressing values and moral principles instead of focussing exclusively on the interests of involved parties; using a case-based rather than principle-based method. By discusing the advantages and (...) disadvantages of the proposed procedures, our paper aims to contribute to the literature on models and procedures for ethical analysis that can be used in clinical settings. It is suggested that our proposed procedures have some advantageous features when it comes to promoting health care staff’s learning to structure their thinking about ethical issues. (shrink)

Proper procedures for informed consent are widely recognized as an ethical requirement for biomedical research involving human beings, in particular as a means to respect the autonomy and personal integrity of potential and actual research participants.

This is a welcome reprint of a book that continues to grow in importance.

Plagiarism is a major problem for research. There are, however, divergent views on how to define plagiarism and on what makes plagiarism reprehensible. In this paper we explicate the concept of “plagiarism” and discuss plagiarism normatively in relation to research. We suggest that plagiarism should be understood as “someone using someone else’s intellectual product, thereby implying that it is their own” and argue that this is an adequate and fruitful definition. We discuss a number of circumstances that make plagiarism more (...) or less grave and the plagiariser more or less blameworthy. As a result of our normative analysis, we suggest that what makes plagiarism reprehensible as such is that it distorts scientific credit. In addition, intentional plagiarism involves dishonesty. There are, furthermore, a number of potentially negative consequences of plagiarism. (shrink)

Research integrity is a well-established term used to talk and write about ethical issues in research. Part of its success might be its broad applicability. In this paper, we suggest that this might also be its Achilles heel, since it has the potential to conceal important value conflicts. We identify three broad domains upon which research integrity is applied in the literature: (1) the researcher (or research group), (2) research, and (3) research-related institutions and systems. Integrity in relation to researchers (...) concerns character, although it remains to specify precisely what character traits are the desirable ones in this context and what values researchers should endorse. Integrity in relation to research concerns correct and sufficient description of the research process, data, results, and overall ‘research record’. Hence, it concerns the quality of research. However, whether or not this notion of research integrity covers all ethical aspects of research depends on whether one endorses a wider or a narrower interpretation of the ‘research process’. Integrity in relation to research-related institutions and systems leaves open whether they should be understood as agents in their own right or merely as means to research integrity. Besides the potential lack of clarity that our analysis reveals, we point to how this variety in uses might lead to concealment of value conflicts and propose an open discussion of central values. (shrink)

Background Several studies suggest that deviations from proper authorship practices are commonplace in medicine. The aim of this study was to explore experiences of and attitudes towards the handling of authorship in PhD theses at medical faculties in Denmark, Norway, and Sweden. Methods Those who defended their PhD thesis at a medical faculty in Scandinavia during the second half of 2020 were offered, by e-mail, to participate in an online survey. Survey questions dealt with experiences of violations of the first (...) three of the ICMJE authorship criteria and misuse of authorship order in the thesis articles, as well as respondents’ attitudes to these matters. Both questions with fixed response alternatives and questions with free-text responses were used. Quantitative data were analysed statistically using the Table functions in SPSS 25 and Chi-2 tests. Free-text responses were analysed qualitatively using manifest content analysis. Results 287 valid questionnaires were returned (response rate: 34.1%). Almost half (46.0%) of the respondents reported that the ICMJE authorship criteria were not fully respected in at least one of the papers in their thesis, while a vast majority (96.7%) found it important that authorship is handled according to the ICMJE authorship criteria. 24.4% reported inadequate handling of authorship order in at least one paper. The qualitative results provide a wide spectrum of examples of how the ICMJE authorship criteria are circumvented. Conclusion Despite increasing educational efforts to reduce deviations from good research practice at Scandinavian universities, the handling of authorship in medical papers remains problematic. (shrink)

Providing a compelling scholarly statement about the interrelation and pliability of values in the life sciences, medicine and health care, this volume aims to aid our understanding of the roles of power, knowledge production and economic action in the heavily scientised and economised areas of life science and medicine.

This article proposes an analytical approach to algorithms that stresses operations of folding. The aim of this approach is to broaden the common analytical focus on algorithms as biased and opaque black boxes, and to instead highlight the many relations that algorithms are interwoven with. Our proposed approach thus highlights how algorithms fold heterogeneous things: data, methods and objects with multiple ethical and political effects. We exemplify the utility of our approach by proposing three specific operations of folding—proximation, universalisation and (...) normalisation. The article develops these three operations through four empirical vignettes, drawn from different settings that deal with algorithms in relation to AIDS, Zika and stock markets. In proposing this analytical approach, we wish to highlight the many different attachments and relations that algorithms enfold. The approach thus aims to produce accounts that highlight how algorithms dynamically combine and reconfigure different social and material heterogeneities as well as the ethical, normative and political consequences of these reconfigurations. (shrink)

We have investigated attitudes towards the use of health data among the Swedish population by analyzing data from a survey answered by 1645 persons. Health data are potentially useful for a variety of purposes. Yet information about health remains sensitive. A balance therefore has to be struck between these opposing considerations in a number of contexts. The attitudes among those whose data is concerned will influence the perceived legitimacy of policies regulating health data use. We aimed to investigate what views (...) are held by the general public, and what aspects matter for the willingness to let one’s data be used not only for one’s own care but also for other purposes. We found that while there is a broad willingness to let one’s data be used, the possibility to influence that use is considered important. The study also indicated that when respondents are required to balance different interests, priority is typically given to compulsory schemes ensuring that data are available where needed, rather than voluntary participation and data protection. The policy implications to be drawn from this are not self-evident, however, since the fact that a majority has a certain attitude does not by itself determine the most adequate policy. (shrink)

This paper concerns the responsibility of co-authors in cases of scientific misconduct. Arguments in research integrity guidelines and in the bioethics literature concerning authorship responsibilities are discussed. It is argued that it is unreasonable to claim that for every case where a research paper is found to be fraudulent, each author is morally responsible for all aspects of that paper, or that one particular author has such a responsibility. It is further argued that it is more constructive to specify what (...) task responsibilities come with different roles in a project and describe what kinds of situations or events call for some kind of action, and what the appropriate actions might be. (shrink)

In science and technology studies today, there is a troubling tendency to portray actors in the biosciences as “cultural dopes” and technology as having monolithic qualities with predetermined outcomes. To remedy this analytical impasse, this article introduces the concept styles of valuation to analyze how actors struggle with valuing technology in practice. Empirically, this article examines how actors in a bioscientific laboratory struggle with valuing the properties and qualities of algorithms in a high-throughput setting and identifies the copresence of several (...) different styles. The question that the actors struggle with is what different configurations of algorithms, devices, and humans are “good bioscience,” that is, what do the actors perform as a good distribution of agency between algorithms and humans? A key finding is that algorithms, robots, and humans are valued in multiple ways in the same setting. For the actors, it is not apparent which configuration of agency and devices is more authoritative nor is it obvious which skills and functions should be redistributed to the algorithms. Thus, rather than tying algorithms to one set of values, such as “speed,” “precision,” or “automation,” this article demonstrates the broad utility of attending to the multivalence of algorithms and technology in practice. (shrink)

The main causes of suicide and how suicide could and should be prevented are ongoing controversies in the scientific literature as well as in public media. In the bill on public health from 2008, the Swedish Parliament adopted an overarching “Vision Zero for Suicide” and nine strategies for suicide prevention. However, how the VZ should be interpreted in healthcare is unclear. The VZ has been criticized both from a philosophical perspective and against the background of clinical experience and alleged empirical (...) claims regarding the consequences of regulating suicide prevention. This study is part of a larger research project in medical ethics with the overarching aim to explore whether the VZ is ethically justifiable. The aim is to enrich the normative discussion by investigating empirically how the VZ is perceived in healthcare. Interviews based on a semi-structured interview guide were performed with 12 Swedish psychiatrists. The interviews were analysed with descriptive qualitative content analysis aiming for identifying perceptions of the Vision Zero for Suicide as well as arguments for and against it. Though most of the participants mentioned at least some potential benefit of the Vision Zero for Suicide, the overall impression was a predominant skepticism. Some participants focused on why they consider the VZ to be unachievable, while others focused more on its potential consequences and normative implications. The VZ was perceived to be impossible to realize, nonconstructive or potentially counterproductive, and undesirable because of potential conflicts with other values and interests of patients as well as the general public. There were also important notions of the VZ having negative consequences for the working conditions of psychiatrists in Sweden, in increasing their work-related anxiety and thwarting the patient-physician relationship. (shrink)

This paper discusses the criminalization of scientific misconduct, as discussed and defended in the bioethics literature. In doing so it argues against the claim that fabrication, falsification and plagiarism (FFP) together identify the most serious forms of misconduct, which hence ought to be criminalized, whereas other forms of misconduct should not. Drawing the line strictly at FFP is problematic both in terms of what is included and what is excluded. It is also argued that the criminalization of scientific misconduct, despite (...) its anticipated benefits, is at risk of giving the false impression that dubious practices falling outside the legal regulation “do not count”. Some doubts are also raised concerning whether criminalization of the most serious forms of misconduct will lower the burdens for universities or successfully increase research integrity. Rather, with or without criminalization, other measures must be taken and are probably more important in order to foster a more healthy research environment. (shrink)

There are three lines of argument in defence of coercive treatment of patients with mental disorders: arguments regarding (1) societal interests to protect others, (2) the patients' own health interests, and (3) patient autonomy. In this paper, we analyse these arguments in relation to an idealized case, where a person with a mental disorder claims not to want medical treatment for religious reasons. We also discuss who should decide what in situations where patients with mental disorders deny treatment on seemingly (...) rational grounds.We conclude that, in principle, coercive treatment cannot be defended for the sake of protecting others. While coercive actions can be acceptable in order to protect close family and others, medical treatment is not justified for such reasons but should be given only in the interest of patients. Coercive treatment may be required in order to promote the patient's health interests, but health interests have to waive if they go against the autonomous interests of the patient. We argue that non-autonomous patients can have reasons, rooted in their deeply-set values, to renounce compulsory institutional treatment, and that such reasons should be respected unless it can be assumed that their new predicaments have caused them to change their views. (shrink)

Slippery-slope arguments typically question a course of action by estimating that it will end in misery once the first unfortunate step is taken. Previous studies indicate that estimations of the long-term consequences of certain debated actions, such as legalizing physician-assisted suicide, may be strongly influenced by tacit personal values. In this paper, we suggest that to the extent that slippery-slope arguments rest on estimations of future events, they may be mere rationalizations of personal values. This might explain why there are (...) proponents even for strikingly poor slippery-slope arguments. (shrink)

Ethical guidelines commonly state that research subjects should have a right to withdraw consent to participate. According to the guidelines we have studied, this right applies also to research on biological samples. However, research conducted on human subjects themselves differs in important respects from research on biological samples. It is therefore not obvious that the same rights should be granted research participants in the two cases. This paper investigates arguments for and against granting a right to withdraw consent to research (...) on biobank samples. We conclude that (1) there are no explicit arguments for such a right in the guidelines we have studied, (2) the arguments against such a right are inconclusive, (3) considerations of autonomy, privacy, personal integrity, and trust in medical research provide sufficient reasons for granting a right to withdraw consent to research on biobank samples, (4) in certain cases, research participants should be allowed to waive this right. (shrink)

It has been debated for quite some time among bioethicists and others whether or not the distinction between therapy and research in healthcare can and should be maintained. This paper tries to clarify what the disagreement is about, and argues that the distinction can be maintained in most, if not all, situations. However, even if it can be maintained, it does not necessarily follow that it should. It is argued here that there are good reasons to maintain the distinction both (...) for the sake of protecting research interests and the sake of patient safety. In addition, recognizing the distinction provides a barrier against unreasonable prioritization between patients. However, there may be situations, such as innovative last-resort treatment, in which regulatory requirements from both therapy and research should be considered. (shrink)

Informed consent is central to modern research ethics. Informed consent procedures have mainly been justified in terms of respect for autonomy, the core idea being that it should be every competent individual’s right to decide for herself whether or not to participate in scientific studies. A number of conditions are normally raised with regard to morally valid informed consent. These include that potential research subjects get adequate information, understand those aspects that are relevant to them, and, based on that information, (...) make a voluntary decision whether or not to participate. These conditions are meant to guarantee that participation is genuinely the individual’s own choice and is coherent with his or her authentic interests. (shrink)

This article discusses gift authorship, the practice where co-authorship is awarded to a person who has not contributed significantly to the study. From an ethical point of view, gift authorship raises concerns about desert, fairness, honesty and transparency, and its prevalence in research is rightly considered a serious ethical concern. We argue that even though misuse of authorship is always bad, there are instances where accepting requests of gift authorship may nevertheless be the right thing to do. More specifically, we (...) propose that researchers may find themselves in a situation much similar to the problem of dirty hands, which has been frequently discussed in political philosophy and applied ethics. The problem of dirty hands is relevant to what we call hostage authorship, where the researchers include undeserving authors unwillingly, and only because they find it unavoidable in order to accomplish a morally important research goal. (shrink)

This paper deals with ethical issues of particular relevance to longitudinal research involving children. First some general problems concerning information and lack of understanding are discussed. Thereafter focus is shifted to issues concerning information and consent procedures in studies that include young children growing up to become autonomous persons while the project still runs. Some of the questions raised are: When is it right to include children in longitudinal studies? Is an approval from the child needed? How should information to (...) children be handled? A general point stressed is that autonomy considerations underline the importance of adjusting the information given to meet demands. A “presumption of competence” may be needed in research involving children, in order to pay their views sufficient attention. (shrink)

This paper defends the right not to know personal health information, while it discards the right of research participants to receive individual research results. Disagreement regarding the right not to know stems from two different conceptions of autonomy, leading to opposing normative conclusions. Researchers occasionally have good reason to inform research participants about incidental findings in spite of the absence of a right to know such information. Such decisions have to be made by health care personnel and researchers on a (...) case by case basis, although external support for the decisions may be available. (shrink)

Luck egalitarianism, a theory of distributive justice, holds that inequalities which arise due to individuals’ imprudent choices must not, as a matter of justice, be neutralized. This article deals with the possible application of luck egalitarianism to the area of health care. It seeks to investigate whether the ethos of luck egalitarianism can be operationalized to the point of informing health care policy without straying from its own ideals. In the transition from theory to practise, luck egalitarianism encounters several difficulties. (...) We argue that the charge of moral arbitrariness can, at least in part, be countered by our provided definition of “imprudent actions” in the health area. We discuss the choice for luck egalitarianism in health care between ex ante and ex post policy approaches, and show how both approaches are flawed by luck egalitarianism’s own standards. We also examine the problem of threshold setting when luck egalitarianism is set to practise in health care. We argue that wherever policy thresholds are set, luck egalitarianism in health care risks pampering the imprudent, abandoning the prudent or, at worst, both. Furthermore, we claim that moves to mitigate these risks in turn diminish the normative importance of the ethos of luck egalitarianism to policy. All in all, our conclusion is that luck egalitarianism cannot be consistently applied as a convincing and relevant normative principle in health care policy. (shrink)

An update of the widely acknowledged recommendations on how to handle authorship in research, issued by the International Committee of Medical Journal Editors, was issued in August, 2013. While the revised recommendations contain several clarifications compared to earlier versions, one arguably important aspect is still not addressed: the relationship between authorship and intellectual involvement in research. In this paper, it is argued that the ICMJE authorship criteria are flawed in this respect: they do not explicitly require of authors of scientific (...) papers that they do research. It is further suggested that unless academic authorship clearly reflects to what extent individual researchers have been intellectually involved in the research and to what extent they have merely contributed with research-related work, they will, in many cases, be misleading about research merits. (shrink)

This paper describes and discusses the phenomenon ‘predatory publishing’, in relation to both academic journals and books, and suggests a list of characteristics by which to identify predatory journals. It also raises the question whether traditional publishing houses have accompanied rogue publishers upon this path. It is noted that bioethics as a discipline does not stand unaffected by this trend. Towards the end of the paper it is discussed what can and should be done to eliminate or reduce the effects (...) of this development. The paper concludes that predatory publishing is a growing phenomenon that has the potential to greatly affect both bioethics and science at large. Publishing papers and books for profit, without any genuine concern for content, but with the pretence of applying authentic academic procedures of critical scrutiny, brings about a worrying erosion of trust in scientific publishing. (shrink)

Sometimes participants in research collaboration die before the paper is accepted for publication. The question we raise in this paper is how authorship should be handled in such situations. First, the outcome of a literature survey is presented. Taking this as our starting point, we then go on to discuss authorship of the dead in relation to the requirements of the Vancouver rules. We argue that in principle the deceased can meet the requirements laid down in these authorship guidelines. However, (...) to include a deceased researcher as author requires a strong justification. The more the person has been involved in the research and writing process before he or she passes away, the stronger the justification for inclusion. (shrink)

In a previous paper in the Journal of Medical Ethics, the authors argued that the research ethical principle stating that the individual shall have priority over science, found in many guidelines, is utterly unclear and because of this should be explicated or otherwise deleted. In a recent commentary, Parker argued that this leaves us defending a position that would allow totalitarian regimes to pursue glory at the expense of its citizens. The present response addresses this and similar accusations.

This article investigates what notions of “just health care” are found at three Swedish hospitals among health care personnel and whether these notions are relevant to what priorities are actually made. Fieldwork at all three hospitals and 114 in-depth interviews were conducted. Data have been subject to conceptual and ethical analysis and categorisation. According to our findings, justice is an important idea to health care personnel at the studied hospitals. Two main notions of just health care were found. The main (...) idea was the notion of “equal treatment according to need”, the basic idea being that differences in treatment should be justified by differences in needs. The competing idea that merit should affect the treatment received is occasionally encountered, the idea here being that patients, by acting irresponsibly, may no longer deserve to be treated strictly according to needs. In practice, priorities are made on grounds that only partly comply with the basic idea of justice in health care, as it is understood by staff at the studied hospitals. Exceptions are made due to regional differences, considerations of cost-effectiveness, economic incentives, tradition, the daily patient flow, research, private alternatives, patient influence and favouritism of health care personnel. (shrink)

In a Swedish setting physicians are unlikely to give explicitly paternalistic reasons when asked about their attitudes towards patients’ involvement in decision-making. There is considerable risk that they will disguise their paternalism by giving ‘socially correct answers’. We suggest that disguised paternalism can be revealed with the help of indexes based on certain responses in postal questionnaires. The indexes were developed using material from a study examining attitudes of Swedish physicians to physician-assisted suicide (PAS). Apart from being asked about their (...) attitudes, they were asked to prioritise between different arguments for and against PAS. One argument for PAS was: “PAS should be permitted out of respect for patients’ autonomy”. One argument against PAS was: “PAS should not be permitted since the non-maleficence principle in this case takes precedence over respecting patients’ autonomy”. Responses to the latter argument formed the cornerstone of a disguised-paternalism index, while an autonomy index was based on answers to the former argument. Applying our indexes to data from the PAS survey, we found that female GPs, surgeons, and older male physicians were least paternalistic. Among female physicians one finds both the most autonomy-respecting groups (female surgeons and GPs) and the least autonomy-respecting groups (female oncologists and psychiatrists); together with older male physicians in general, female GPs are the group displaying least disguised paternalism. We suggest that questionnaires exploring paternalism might be improved by including case-specific questions or statements by which to explore disguised paternalism. Here our indexes might be useful tools. (shrink)