1. |
- Akner, Gunnar, 1953-
(author)
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The ethics of ignorance
- 1995
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In: Journal of Medical Ethics. - : BMJ. - 0306-6800 .- 1473-4257. ; 21:1, s. 56-56
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Journal article (peer-reviewed)
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2. |
- Algander, Per, 1981-
(author)
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Comment on Brown and Savulescu
- 2019
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In: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257. ; 45:10, s. 645-645
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Journal article (other academic/artistic)
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3. |
- Barra, Mathias, et al.
(author)
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Do not despair about severity—yet
- 2020
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In: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257. ; 46:8, s. 557-558
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Journal article (other academic/artistic)abstract
- In a recent extended essay, philosopher Daniel Hausman goes a long way towards dismissing severity as a morally relevant attribute in the context of priority setting in healthcare. In this response, we argue that although Hausman certainly points to real problems with how severity is often interpreted and operationalised within the priority setting context, the conclusion that severity does not contain plausible ethical content is too hasty. Rather than abandonment, our proposal is to take severity seriously by carefully mapping the possibly multiple underlying accounts to well-established ethical theories, in a way that is both morally defensible and aligned with the term’s colloquial uses.
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4. |
- Bernstein, Michael H, et al.
(author)
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How do US orthopaedic surgeons view placebo-controlled surgical trials? : A pilot online survey study
- 2022
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In: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257.
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Journal article (peer-reviewed)abstract
- Randomised placebo-controlled trials (RPCTs) are the gold standard for evaluating novel treatments. However, this design is rarely used in the context of orthopaedic interventions where participants are assigned to a real or placebo surgery. The present study examines attitudes towards RPCTs for orthopaedic surgery among 687 orthopaedic surgeons across the USA. When presented with a vignette describing an RPCT for orthopaedic surgery, 52.3% of participants viewed it as 'completely' or 'mostly' unethical. Participants were also asked to rank-order the value of five different types of evidence supporting the efficacy of a surgery, ranging from RPCT to an anecdotal report. Responses regarding RPCTs were polarised with 26.4% viewing it as the least valuable (even less valuable than an anecdote) and 35.7 .% viewing it as the most valuable. Where equipoise exists, if we want to subject orthopaedic surgeries to the highest standard of evidence (RPCTs) before they are implemented in clinical practice, it will be necessary to educate physicians on the value and ethics of placebo surgery control conditions. Otherwise, invasive procedures may be performed without any benefits beyond possible placebo effects.
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5. |
- Björkman, Barbro, et al.
(author)
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Bodily Rights and Property Rights
- 2006
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In: Journal of Medical Ethics. - : BMJ. - 0306-6800 .- 1473-4257. ; 32:4, s. 209-214
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Journal article (peer-reviewed)abstract
- Whereas previous discussions on ownership of biological material have been much informed by the natural rights tradition, insufficient attention has been paid to the strand in liberal political theory represented by Felix Cohen, Tony Honore, and others, which treats property relations as socially constructed bundles of rights. In accordance with that tradition, we propose that the primary normative issue is what combination of rights a person should have to a particular item of biological material. Whether that bundle qualifies to be called `` property'' or `` ownership'' is a secondary, terminological issue. We suggest five principles of bodily rights and show how they can be applied to the construction of ethically appropriate bundles of rights to biological material.
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8. |
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9. |
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10. |
- Blease, Charlotte
(author)
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Open AI meets open notes : surveillance capitalism, patient privacy and online record access
- 2024
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In: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257. ; 50:2, s. 84-89
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Journal article (peer-reviewed)abstract
- Patient online record access (ORA) is spreading worldwide, and in some countries, including Sweden, and the USA, access is advanced with patients obtaining rapid access to their full records. In the UK context, from 31 October 2023 as part of the new NHS England general practitioner (GP) contract it will be mandatory for GPs to offer ORA to patients aged 16 and older. Patients report many benefits from reading their clinical records including feeling more empowered, better understanding and remembering their treatment plan, and greater awareness about medications including possible adverse effects. However, a variety of indirect evidence suggests these benefits are unlikely to accrue without supplementation from internet-based resources. Using such routes to augment interpretation of the data and notes housed in electronic health records, however, comes with trade-offs in terms of exposing sensitive patient information to internet corporations. Furthermore, increased work burdens on clinicians, including the unique demands of ORA, combined with the easy availability and capability of a new generation of large language model (LLM)-powered chatbots, create a perfect collision course for exposing sensitive patient information to private tech companies. This paper surveys how ORA intersects with internet associated privacy risks and offers a variety of multilevel suggestions for how these risks might be better mitigated.
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11. |
- Blease, Charlotte, et al.
(author)
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Open notes in patient care : confining deceptive placebos to the past?
- 2022
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In: Journal of Medical Ethics. - : Institute of Medical Ethics. - 0306-6800 .- 1473-4257. ; 48:8, s. 572-574
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Journal article (peer-reviewed)abstract
- Increasing numbers of health organisations are offering some or all of their patients access to the visit notes housed in their electronic health records (so-called ‘open notes’). In some countries, including Sweden and the USA, this innovation is advanced with patients using online portals to access their clinical records including the visit summaries written by clinicians. In many countries, patients can legally request copies of their records; however, open notes are different because this innovation offers patients rapid, real-time access via electronic devices. In this brief report, we explore what open notes might mean for placebo use in clinical care. Survey research into patient access to their clinical notes shows that increased transparency enhances patients’ understanding about their medications and augments engagement with their care. We reflect on the consequences of access for placebo prescribing, particularly for the common practice of deceptive placebo use, in which patients are not aware they are being offered a placebo. In addition, we explore how open notes might facilitate placebo and nocebo effects among patients. Bridging placebo studies with medical ethics, we identify a range of empirical research gaps that now warrant further study.
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12. |
- Blease, Charlotte, et al.
(author)
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Patients, clinicians and open notes : information blocking as a case of epistemic injustice
- 2022
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In: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257. ; 48:10, s. 785-793
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Journal article (peer-reviewed)abstract
- In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians (’open notes’). However, even in countries that have implemented the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety.
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13. |
- Blease, Charlotte
(author)
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Psychotherapy is still failing patients : revisiting informed consent - a response to Garson Leder
- 2021
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In: Journal of Medical Ethics. - : Institute of Medical Ethics. - 0306-6800 .- 1473-4257. ; 47:7, s. 448-449
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Journal article (peer-reviewed)abstract
- Compared with mainstream medicine and complementary and alternative therapies, the practice of psychotherapy has enjoyed a relative pass when it comes to ethical evaluation. Therefore, contributions to the, although slowly growing, body of literature on psychotherapy ethics are to be welcomed. In his paper ‘Psychotherapy, placebos, and informed consent’, Garson Leder takes issue with what he calls the ‘go open’ project in psychotherapy ethics—the idea that the so-called ‘common factors’ in therapy should be disclosed to prospective patients. Although Leder does not give a detailed list, the common factors include therapist characteristics (empathy, positive regard, positive expectations that therapy will succeed), patient characteristics (expectations about therapy including its plausibility, confidence in the therapist), and the working alliance (how well both therapist and patient work well together during sessions). He argues that the project advocating disclosure of these factors is flawed on two grounds: (1) that information about common factors is not necessary for informed consent; and (2) clarity about specific mechanisms of change in therapy is consistent with ‘many theory-specific forms of psychotherapy’. There are multiple serious problems with Leder’s critique of the recent literature, including how he represents the contours of the debate, which I list, and address in this response.
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15. |
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16. |
- Blease, Charlotte, et al.
(author)
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Replication crisis and placebo studies: rebooting the bioethical debate
- 2023
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In: Journal of Medical Ethics. - : BMJ. - 0306-6800 .- 1473-4257. ; , s. jme-2022
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Journal article (peer-reviewed)abstract
- A growing body of cross-cultural survey research shows high percentages of clinicians report using placebos in clinical settings. One motivation for clinicians using placebos is to help patients by capitalising on the placebo effect’s reported health benefits. This is not surprising, given that placebo studies are burgeoning, with increasing calls by researchers to ethically harness placebo effects among patients. These calls propose placebos/placebo effects offer clinically significant benefits to patients. In this paper, we argue many findings in this highly cited and ‘hot’ field have not been independently replicated. Evaluating the ethicality of placebo use in clinical practice involves first understanding whether placebos are efficacious clinically. Therefore, it is crucial to consider placebo research in the context of the replication crisis and what can be learnt to advance evidence-based knowledge of placebos/placebo effects and their clinical relevance (or lack thereof). In doing so, our goal in this paper is to motivate both increased awareness of replication issues and to help pave the way for advances in scientific research in the field of placebo studies to better inform ethical evidence-based practice. We argue that, only by developing a rigorous evidence base can we better understand how, if at all, placebos/placebo effects can be harnessed ethically in clinical settings.
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17. |
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18. |
- Blease, Charlotte
(author)
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Sharing online clinical notes with patients : implications for nocebo effects and health equity
- 2022
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In: Journal of Medical Ethics. - : Institute of Medical Ethics. - 0306-6800 .- 1473-4257.
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Journal article (peer-reviewed)abstract
- Patients in around 20 countries worldwide are now offered online access to at least some of their medical records. Access includes test results, medication lists, referral information, and/or the very words written by clinicians (so-called ‘open notes’). In this paper, I discuss the possibility of one unintended negative consequence of patient access to their clinical notes—the potential to increase ‘nocebo effects’. A growing body of research shows that nocebo effects arise by engaging perceptual and cognitive processes that influence negative expectancies, and as a consequence, adverse health effects. Studies show that increased awareness about the side effects of medications, the framing of information and the socioemotional context of care can increase the risk of nocebo effects. Connecting research into the nocebo effect with open notes provides preliminary support for the hypothesis that patient access to clinical notes might be a forum for facilitating unwanted nocebo effects. Furthermore, current findings indicate that we might expect to see systematic differences in how nocebo effects are experienced among different patient populations. The ethical implications of the tension between transparency and the potential for harm are discussed, with an emphasis on what open notes might mean for justice and equity in clinical care for a range of already marginalised patient populations. I argue that to resolve these challenges does not thereby justify ‘closed notes’, and conclude with suggestions for how health systems and clinicians might adapt to this innovation to reduce the risk of potential nocebo effects arising via this novel route.
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20. |
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21. |
- Bognar, Greg, 1975-
(author)
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Is disability mere difference?
- 2016
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In: Journal of Medical Ethics. - : BMJ. - 0306-6800 .- 1473-4257. ; 42:1, s. 46-49
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Journal article (peer-reviewed)
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22. |
- Bülow, William, et al.
(author)
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Why unethical papers should be retracted
- 2021
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In: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257. ; 47:12
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Journal article (peer-reviewed)abstract
- The purpose of retracting published papers is to maintain the integrity of academic research. Recent work in research ethics has devoted important attention to how to improve the system of paper retraction. In this context, the focus has primarily been on how to handle fraudulent or flawed research papers, and how to encourage the retraction of papers based on honest mistakes. Less attention has been paid to whether papers that report unethical research – for example, research performed without appropriate concern for the moral rights and interests of the research participants – should be retracted. The aim of this paper is to examine to what extent retraction policies of academic journals and publishers address retractions of unethical research and to discuss critically various policy options and the reasons for accepting them. This paper starts by reviewing retraction policies of academic publishers. The results show that many journals do not have explicit policies for how to handle unethical research. Against this background, we discuss four normative arguments for why unethical research should be retracted. In conclusion, we suggest a retraction policy in light of our empirical and normative investigations.
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23. |
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24. |
- Cohen, J., et al.
(author)
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Influence of physicians' life stances on attitudes to end-of-life decisions and actual end-of-life decision-making in six countries
- 2008
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In: Journal of Medical Ethics. - : BMJ. - 0306-6800 .- 1473-4257. ; 34:4, s. 247-253
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Journal article (peer-reviewed)abstract
- Aim: To examine how physicians' life stances affect their attitudes to end-of-life decisions and their actual end-of-life decision-making. Methods: Practising physicians from various specialties involved in the care of dying patients in Belgium, Denmark, The Netherlands, Sweden, Switzerland and Australia received structured questionnaires on end-of-life care, which included questions about their life stance. Response rates ranged from 53% in Australia to 68% in Denmark. General attitudes, intended behaviour with respect to two hypothetical patients, and actual behaviour were compared between all large life-stance groups in each country. Results: Only small differences in life stance were found in all countries in general attitudes and intended and actual behaviour with regard to various end-of-life decisions. However, with regard to the administration of drugs explicitly intended to hasten the patient's death (PAD), physicians with specific religious affiliations had significantly less accepting attitudes, and less willingness to perform it, than non-religious physicians. They had also actually performed PAD less often. However, in most countries, both Catholics (up to 15.7% in The Netherlands) and Protestants (up to 20.4% in The Netherlands) reported ever having made such a decision. Discussion: The results suggest that religious teachings influence to some extent end-of-life decision-making, but are certainly not blankly accepted by physicians, especially when dealing with real patients and circumstances. Physicians seem to embrace religious belief in a non-imperative way, allowing adaptation to particular situations.
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25. |
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26. |
- Cutas, Daniela, et al.
(author)
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Is it a boy or a girl? : Who should (not) know children’s sex and why?
- 2012
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In: Journal of Medical Ethics. - : BMJ Publishing. - 0306-6800 .- 1473-4257.
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Journal article (peer-reviewed)abstract
- In this paper, we present the case of a couple who refused to disclose the sex of their child to others, and some of the responses that this case prompted in the international media. We outline the ethical issues that this case raises, and we place it into the more general context of parental preferences regarding the gender (development) of their children and of the impact on children of parental choices in the matter. Based on current knowledge of gender identity development, we identify some of the potential pitfalls of such a course of action and we briefly present some alternative strategies that could be implemented in order to ensure more freedom of gender formation in children.
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27. |
- Cutas, Daniela
(author)
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Life extension, overpopulation and the right to life : against lethal ethics
- 2008
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In: Journal of Medical Ethics. - : BMJ. - 0306-6800 .- 1473-4257. ; 34:9
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Journal article (peer-reviewed)abstract
- Some of the objections to life-extension stem from a concern with overpopulation. I will show that whether or not the overpopulation threat is realistic, arguments from overpopulation cannot ethically demand halting the quest for, nor access to, life-extension. The reason for this is that we have a right to life, which entitles us not to have meaningful life denied to us against our will and which does not allow discrimination solely on the grounds of age. If the threat of overpopulation creates a rights conflict between the right to come into existence, the right to reproduce, the right to more opportunities and space (if, indeed, these rights can be successfully defended), and the right to life, the latter ought to be given precedence.
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28. |
- Cutas, Daniela, 1978
(author)
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On triparenting. Is having three committed parents better than having only two?
- 2011
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In: Journal of Medical Ethics. - : BMJ. - 1473-4257 .- 0306-6800. ; 37:12, s. 735-738
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Journal article (peer-reviewed)abstract
- Although research indicates that single parenting is not by itself worse for children than their being brought up by both their parents, there are reasons why it is better for children to have more than one committed parent. If having two committed parents is better, everything else being equal, than having just one, I argue that it might be even better for children to have three committed parents. There might, in addition, be further reasons why allowing triparenting would benefit children and adults, at least in some cases. Whether or not triparenting is on the whole preferable to bi- or monoparenting, it does have certain advantages (as well as shortcomings) which, at the very least, warrant its inclusion in debates over the sorts of family structures we should allow in our societies, and how many people should be accepted in them. This paper has the modest aim of scratching the surface of this wider topic by challenging the necessity of the max-two-parents framework.
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29. |
- Dahlquist, M, et al.
(author)
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Public justification and expert disagreement over non-pharmaceutical interventions for the COVID-19 pandemic
- 2023
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In: Journal of medical ethics. - : BMJ. - 1473-4257 .- 0306-6800. ; 49:1, s. 9-13
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Journal article (peer-reviewed)abstract
- A wide range of non-pharmaceutical interventions (NPIs) have been introduced to stop or slow down the COVID-19 pandemic. Examples include school closures, environmental cleaning and disinfection, mask mandates, restrictions on freedom of assembly and lockdowns. These NPIs depend on coercion for their effectiveness, either directly or indirectly. A widely held view is that coercive policies need to be publicly justified—justified to each citizen—to be legitimate. Standardly, this is thought to entail that there is a scientific consensus on the factual propositions that are used to support the policies. In this paper, we argue that such a consensus has been lacking on the factual propositions justifying most NPIs. Consequently, they would on the standard view be illegitimate. This is regrettable since there are good reasons for granting the state the legitimate authority to enact NPIs under conditions of uncertainty. The upshot of our argument is that it is impossible to have both the standard interpretation of the permissibility of empirical claims in public justification and an effective pandemic response. We provide an alternative view that allows the state sufficient room for action while precluding the possibility of it acting without empirical support.
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30. |
- D'Angelo, Carlos, et al.
(author)
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Addict to win? : A different approach to doping
- 2010
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In: Journal of Medical Ethics. - : BMJ. - 0306-6800 .- 1473-4257. ; 36:11, s. 700-707
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Journal article (peer-reviewed)abstract
- Traditionally the doping debate has been dominated by those who want to see doping forbidden (the prohibitionist view) and those who want to see it permitted (the ban abolitionist view). In this article, the authors analyse a third position starting from the assertion that doping use is a symptom of the paradigm of highly competitive elite sports, in the same way as addictions reflect current social paradigms in wider society. Based upon a conceptual distinction between occasional use, habitual use and addiction, and focusing on the physical and/or mental dependency caused by the addictive use of a certain drug, we argue that marihuana, stimulants and anabolic steroid abuse-the most frequently detected substances in doping tests-satisfies at least one, often both, of these conditions. A conclusion to be drawn from the authors' arguments is that the prohibitionist view is inappropriate for dealing with doping, as the severe sanctions attached to it will cut the doper off her/his social and professional environment, thereby risking reinforcing her/his addictive conduct. But the ban abolitionist view seems inappropriate as well. At first sight, it seems neither rational nor humane not to intervene when confronted with conduct which is highly harmful for the individual and upon which she has reduced or no control whatsoever. Instead the authors' proposal will be to contextualise dopers' conduct within sport healthcare and see it strictly in relation to each athlete's personal background. Developing preventive programmes-implemented through person-tailored counselling and eventually treatment, rather than severe sanctions or the mere lifting of the ban-seems to be a more reasonable, and probably more efficient, way of conducting 'the war against doping'.
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31. |
- De Vries, Bouke
(author)
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Should higher-income countries pay their citizens to move to foreign care homes?
- 2021
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In: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257. ; 47:10, s. 684-688
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Journal article (peer-reviewed)abstract
- Faced with relatively old and ageing populations, a growing number of higher-income countries are struggling to provide affordable and decent care to their older citizens. This contribution proposes a new policy for dealing with this challenge. Under certain conditions, I argue that states should pay their citizens to move to foreign care homes in order to ease the pressure on domestic care institutions. This is the case if—but not necessarily only if—(1) a significant proportion of resident citizens do not currently have access to adequate aged and nursing care; (2) the care in the foreign care homes is not worse than the one that is available in domestic care homes; (3) sending states conduct regular checks to ascertain that the level of care abroad is not worse or delegate this task to reliable local monitoring bodies; (4) appropriate measures have been taken to ensure that this type of migration does not harm local residents; and (5) the public money spent on the payments is not better spent on other ways of easing the pressure on domestic care institutions. I end by defending the proposed payments against the objection that they create morally problematic inequalities by exerting greater pressure on members of lower socioeconomic classes to migrate than on their more affluent compatriots.
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32. |
- Dunberger, Gail, et al.
(author)
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Cancer survivors' perception of participation in a long-term follow-up study.
- 2013
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In: Journal of medical ethics. - : BMJ. - 1473-4257 .- 0306-6800. ; 39:1, s. 41-5
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Journal article (peer-reviewed)abstract
- Every year medical researchers make contact with a large number of cancer survivors with the aim of evaluating cancer treatment. For this reason we decided to investigate how Swedish cancer survivors perceived their participation in research studies focusing on the long-term consequences of being a survivor of gynaecological or urinary bladder cancer. Data were collected by means of two study-specific postal questionnaires, both consisting of questions covering physical symptoms, well-being and the experience of being a cancer survivor. Both questionnaires also included questions evaluating the participants' experience of being research subjects. The questionnaires were developed in close co-operation with cancer survivors. The study population consisted of 1068 cancer survivors. Of these, 95% (n=1003) reported that they thought the study was valuable and 54% (n=559) that they had been positively affected by participating. Four per cent (n=39) expressed that they had been negatively affected by their participation in the study. The vast majority of the cancer survivors thought that participating in their particular study was valuable.
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33. |
- Eijkholt, M, et al.
(author)
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Three pitfalls of accountable healthcare rationing
- 2021
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In: Journal of medical ethics. - : BMJ. - 1473-4257 .- 0306-6800. ; 47:12
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Journal article (peer-reviewed)abstract
- A pandemic may cause a sudden imbalance between available medical resources and medical needs where fundamental care to a patient cannot be delivered. Inability to fulfil a professional commitment to deliver care as needed can lead to distress among caregivers and patients. This distress is sometimes alleviated through mechanisms that hide the facts that care is rationed and not all medical needs are met. We have identified three mechanisms that jeopardise accountable and optimal allocation of resources: (1) hidden value judgements that allow rationing under the disguise of triage or prioritisation, (2) disguised conflict of interest between societal and individual patient’s needs and (3) concealed biases in the application of medical tools. Under these three pitfalls decisions of resource allocation and who gets treated are handled as medical decisions: normative decisions are concealed and perceived as falling with the realm of medical judgement. Value judgements and moral agency are hidden to offer a ‘false sense of medical judgement’, while in fact there are several ethical judgements and biases at stake. The three pitfalls entail hidden normative deliberation and are inappropriate for sustainable healthcare delivery and resource allocation. We believe it is necessary to maintain transparency in decision making under conditions of insufficient resources to maintain trust in professional care givers and secure fair treatment allocation. Recognition of the pitfalls, by applying our recommendations, may help to ensure transparent and accountable distribution of care and contribute to public acceptance of the ethics behind rationing.
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34. |
- Ekendahl, Karl
(author)
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Abortion and the Epicurean Challenge
- 2020
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In: Journal of Medical Ethics. - : BMJ. - 0306-6800 .- 1473-4257. ; 46:4, s. 275-276
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Journal article (peer-reviewed)abstract
- In a recent article in this journal, Anna Christensen raises an 'Epicurean challenge' to Don Marquis' much-discussed argument for the immorality of abortion. According to Marquis' argument, abortion is pro tanto morally wrong because it deprives the fetus of 'a future like ours'. Drawing on the Epicurean idea that death cannot harm its victim because there is no subject to be harmed, Christensen argues that neither fetuses nor anyone else can be deprived of a future like ours by dying. Thus, Christensen suggests, the moral wrongness of abortion (and other killings) cannot be grounded in the relevant individual's being deprived of a future like ours. In this reply, I argue that on no interpretation of Christensen's Epicurean challenge does it succeed.
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35. |
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36. |
- Eriksson, Stefan, 1963-, et al.
(author)
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Keep people informed or leave them alone? : A suggested tool for identifying those research participants who rightly want only limited information
- 2005
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In: Journal of Medical Ethics. - : BMJ. - 0306-6800 .- 1473-4257. ; 31:11, s. 674-678
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Journal article (peer-reviewed)abstract
- People taking part in research vary in the extent to which they understand information concerning their participation. Since they may choose to limit the time and effort spent on such information, lack of understanding is not necessarily an ethical problem. Researchers who notice a lack of understanding are in the quandary of not knowing whether this is due to flaws in the information process or to participants’ deliberate choices. We argue that the two explanations call for different responses.A tool for identifying those research participants who want limited information is presented. This consists of a restricted number of questions about trust in and appraisal of research, priority of time and privacy, and perception of a duty to participate. It is argued that an important group of participants who purposely lack understanding of the study can be identified with this tool. Some limitations to this approach are also discussed.
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37. |
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38. |
- Forssén, Annika, et al.
(author)
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Rethinking scientific responsibility
- 2011
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In: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257. ; 37:5, s. 299-302
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Journal article (peer-reviewed)abstract
- Researchers should be made co-responsible for the wider consequences of their research focus and the application of their findings. This paper describes a meta-reflection procedure that can be used as a tool to enhance scientific responsibility and reflective practice. The point of departure is that scientific practice is situated in power relations, has direction and, consequently, power implications. The contextual preconditions and implications of research should be stated and discussed openly. The reflection method aims at revealing both upstream elements, such as for instance preconceptions, and downstream elements, for example, public consequences of research. The validity of research might improve from such discussions. Validity should preferably be understood as a broader concept than the methodological concerns in science.
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39. |
- Friberg-Fernros, Henrik, 1972
(author)
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Responding to Simkulet's objections to the two tragedies argument
- 2019
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In: Journal of Medical Ethics. - : BMJ. - 0306-6800 .- 1473-4257. ; 46:3
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Journal article (peer-reviewed)abstract
- The two tragedies argument (2TA) has been raised as a response to the argument against abortion from spontaneous abortion (or miscarriages). According to this argument against the antiabortion position (AAP), miscarriages should be of great concern for proponents of this position since they result in a greater amount of deaths of human beings than induced abortions do. According to critics of AAP, this fact undermines its plausibility, since proponents of the AAP either must try to prevent miscarriages to the same extent as they try to prevent abortions or abandon their opposition to at least some abortions - which are not acceptable options for proponents of APP. The claim of 2TA is that one can differentiate between induced abortion and miscarriages due to the fact that the former involves the act of killing of another human being. This fact adds a tragedy to the tragedy that both abortions and miscarriages result in - the death of a human being - and contributes to justifying the choice of proponents of AAP to prioritise the prevention of abortions rather than miscarriages. In this response, I defend 2TA against criticism that claims that this argument is: (1) inconsistent with the AAP and (2) trivialises the death of the fetus. My claim is that the first line of criticism rests on a misunderstanding of the premises of 2TA while the second line of criticism rests on a disanalogous thought experiment. I therefore conclude that these objections fail. © Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.
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40. |
- Friberg-Fernros, Henrik, 1972
(author)
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Within the limits of the defensible: A response to Simkulet's argument against the pro-life view on the basis of spontaneous abortion
- 2018
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In: Journal of Medical Ethics. - : BMJ. - 0306-6800 .- 1473-4257. ; 44:11, s. 743-745
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Journal article (peer-reviewed)abstract
- In a recent article, William Simkulet has argued against the anti-abortion view by invoking the fact that many human fetuses die from spontaneous abortion. He argues that this fact poses a dilemma for proponents of the anti-abortion view: either they must abandon their anti-abortion view or they must engage in preventing spontaneous abortion significantly more than at present—either to the extent that they try to prevent induced abortion or at least significantly more than they do today. In this reply, I acknowledge that, if the latter would follow, the anti-abortionist view would imply implausibly strong obligations. My aim with this reply is to demonstrate that anti-abortionists can hold on to their view without having implausibly strong obligations to prevent spontaneous abortion. My conclusion is that Simkulet clearly overstates his position by not sufficiently considering the differences between the act of killing versus death by natural causes and between positive and negative rights.
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41. |
- Friesen, Phoebe, et al.
(author)
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Placebo effects and racial and ethnic health disparities : an unjust and underexplored connection
- 2018
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In: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257. ; 44:11, s. 774-781
-
Journal article (peer-reviewed)abstract
- While a significant body of bioethical literature considers how the placebo effect might introduce a conflict between autonomy and beneficence, the link between justice and the placebo effect has been neglected. Here, we bring together disparate evidence from the field of placebo studies and research on health inequalities related to race and ethnicity, and argue that, collectively, this evidence may provide the basis for an unacknowledged route by which health disparities are exacerbated. This route is constituted by an uneven distribution of placebo effects, resulting from differences in expressions of physician warmth and empathy, as well as support and patient engagement, across racial and ethnic lines. In a discussion of the ethical implications of this connection, we argue that this contribution to health disparities is a source of injustice, consider ways in which these disparities might be ameliorated and suggest that this conclusion is likely to extend to other realms of inequality as well.
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42. |
- Gefenas, E., et al.
(author)
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Non-equivalent stringency of ethical review in the Baltic States: a sign of a systematic problem in Europe?
- 2010
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In: Journal of Medical Ethics. - : BMJ. - 1473-4257 .- 0306-6800. ; 36:7, s. 435-439
-
Journal article (peer-reviewed)abstract
- We analyse the system of ethical review of human research in the Baltic States by introducing the principle of equivalent stringency of ethical review, that is, research projects imposing equal risks and inconveniences on research participants should be subjected to equally stringent review procedures. We examine several examples of non-equivalence or asymmetry in the system of ethical review of human research: (1) the asymmetry between rather strict regulations of clinical drug trials and relatively weaker regulations of other types of clinical biomedical research and (2) gaps in ethical review in the area of non-biomedical human research where some sensitive research projects are not reviewed by research ethics committees at all. We conclude that non-equivalent stringency of ethical review is at least partly linked to the differences in scope and binding character of various international legal instruments that have been shaping the system of ethical review in the Baltic States. Therefore, the Baltic example could also serve as an object lesson to other European countries which might be experiencing similar problems.
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43. |
- Grill, Kalle, 1976-, et al.
(author)
-
Epistemic Paternalism in Public Health
- 2005
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In: Journal of Medical Ethics. - London : BMJ. - 0306-6800 .- 1473-4257. ; 31:11, s. 648-653
-
Journal article (peer-reviewed)abstract
- Receiving information about threats to one’s health can contribute to anxiety and depression. In contemporary medical ethics there is considerable consensus that patient autonomy, or the patient’s right to know, in most cases outweighs these negative effects of information. Worry about the detrimental effects of information has, however, been voiced in relation to public health more generally. In particular, information about uncertain threats to public health, from—for example, chemicals—are said to entail social costs that have not been given due consideration. This criticism implies a consequentialist argument for withholding such information from the public in their own best interest. In evaluating the argument for this kind of epistemic paternalism, the consequences of making information available must be compared to the consequences of withholding it. Consequences that should be considered include epistemic effects, psychological effects, effects on private decisions, and effects on political decisions. After giving due consideration to the possible uses of uncertain information and rebutting the claims that uncertainties imply small risks and that they are especially prone to entail misunderstandings and anxiety, it is concluded that there is a strong case against withholding of information about uncertain threats to public health.
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44. |
- Grill, Kalle, 1976-, et al.
(author)
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Healthcare professionals' responsibility for informing relatives at risk of hereditary disease
- 2021
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In: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257. ; 47:12
-
Journal article (peer-reviewed)abstract
- Advances in genetic diagnostics lead to more patients being diagnosed with hereditary conditions. These findings are often relevant to patients' relatives. For example, the success of targeted cancer prevention is dependent on effective disclosure to relatives at risk. Without clear information, individuals cannot take advantage of predictive testing and preventive measures. Against this background, we argue that healthcare professionals have a duty to make actionable genetic information available to their patients' at-risk relatives. We do not try to settle the difficult question of how this duty should be balanced against other duties, such as the duty of confidentiality and a possible duty not to know one's genetic predisposition. Instead, we argue for the importance of recognising a general responsibility towards at-risk relatives, to be discharged as well as possible within the limits set by conflicting duties and practical considerations. According to a traditional and still dominant perspective, it is the patient's duty to inform his or her relatives, while healthcare professionals are only obliged to support their patients in discharging this duty. We argue that this perspective is a mistake and an anomaly. Healthcare professionals do not have a duty to ensure that their patients promote the health of third parties. It is often effective and desirable to engage patients in disseminating information to their relatives. However, healthcare professionals should not thereby deflect their own moral responsibility.
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45. |
- Grill, Kalle, 1976-
(author)
-
Incentives, equity and the able chooser problem
- 2017
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In: Journal of Medical Ethics. - London : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257. ; 43:3, s. 157-161
-
Journal article (peer-reviewed)abstract
- Health incentive schemes aim to produce healthier behaviors in target populations. They may do so both by making incentivized options more salient and by making them less costly. Changes in costs only result in healthier behavior if the individual rationally assesses the cost change and acts accordingly. Not all people do this well. Those that fail to respond rationally to incentives will typically include those who are least able to make prudent choices more generally. This group will typically include the least advantaged more generally, since disadvantage inhibits one's effective ability to choose well and since poor choices tend to cause or aggravate disadvantage. Therefore, within the target population, health benefits to the better off may come at the cost of aggravated inequity. This is one instance of a problem I name the Able Chooser Problem, previously emphasized by Richard Arneson in relation to coercive paternalism. I describe and discuss this problem by distinguishing between policy options and their effects on the choice situation of individuals. Both positive and negative incentives, as well as mandates that are less than perfectly effective, require some sort of rational deliberation and action and so face the Able Chooser Problem. In contrast, effective restriction of what options are physically available, as well as choice context design that makes some options more salient or appealing, do not demand rational agency. These considerations provide an equity-based argument for preferring smart design of our choice and living environment to incentives and mandates.
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46. |
- Grill, Kalle, 1976-, et al.
(author)
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The case for banning cigarettes
- 2016
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In: Journal of Medical Ethics. - : BMJ Group. - 0306-6800 .- 1473-4257. ; 42:5, s. 293-301
-
Journal article (peer-reviewed)abstract
- Lifelong smokers lose on average a decade of life vis-à-vis non-smokers. Globally, tobacco causes about 5–6 million deaths annually. One billion tobacco-related deaths are predicted for the 21st century, with about half occurring before the age of 70. In this paper, we consider a complete ban on the sale of cigarettes and find that such a ban, if effective, would be justified. As with many policy decisions, the argument for such a ban requires a weighing of the pros and cons and how they impact on different individuals, both current and future. The weightiest factor supporting a ban, we argue, is the often substantial well-being losses many individuals suffer because of smoking. These harms, moreover, disproportionally affect the disadvantaged. The potential gains in well-being and equality, we argue, outweigh the limits a ban places on individuals’ freedom, its failure to respect some individuals’ autonomous choice and the likelihood that it may, in individual cases, reduce well-being.
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47. |
- Guenna Holmgren, Amina, et al.
(author)
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Restraint in somatic healthcare : how should it be regulated?
- 2023
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In: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257.
-
Journal article (peer-reviewed)abstract
- Restraint is regularly used in somatic healthcare settings, and countries have chosen different paths to regulate restraint in somatic healthcare. One overarching problem when regulating restraint is to ensure that patients with reduced decision-making capacity receive the care they need and at the same time ensure that patients with a sufficient degree of decision-making capacity are not forced into care that they do not want. Here, arguments of justice, trust in the healthcare system, minimising harm and respecting autonomy are contrasted with different national regulations. We conclude that a regulation that incorporates an assessment of patients’ decision-making capacity and considers the patient’s best interests is preferable, in contrast to regulations based on psychiatric diagnoses or regulations where there are no legal possibilities to exercise restraint at all in somatic care.
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48. |
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49. |
- Gustavsson, Erik, 1982-, et al.
(author)
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Justification of principles for healthcare priority setting: the relevance and roles of empirical studies exploring public values
- 2023
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In: Journal of Medical Ethics. - : BMJ PUBLISHING GROUP. - 0306-6800 .- 1473-4257.
-
Journal article (peer-reviewed)abstract
- How should scarce healthcare resources be distributed? This is a contentious issue that became especially pressing during the pandemic. It is often emphasised that studies exploring public views about this question provide valuable input to the issue of healthcare priority setting. While there has been a vast number of such studies it is rarely articulated, more specifically, what the results from these studies would mean for the justification of principles for priority setting. On the one hand, it seems unreasonable that public values would straightforwardly decide the ethical question of how resources should be distributed. On the other hand, in a democratic society, it seems equally unreasonable that they would be considered irrelevant for this question. In this paper we draw on the notion of reflective equilibrium and discuss the relevance and roles that empirical studies may plausibly have for justification in priority setting ethics. We develop a framework for analysing how different kinds of empirical results may have different kinds of implications for justification.
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50. |
- Gustavsson, Erik, et al.
(author)
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Novel drug candidates targeting Alzheimers disease : ethical challenges with identifying the relevant patient population
- 2021
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In: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257. ; 47:9, s. 608-614
-
Journal article (peer-reviewed)abstract
- Intensive research is carried out to develop a disease-modifying drug for Alzheimers disease (AD). The development of drug candidates that reduce Ass or tau in the brain seems particularly promising. However, these drugs target people at risk for AD, who must be identified before they have any, or only moderate, symptoms associated with the disease. There are different strategies that may be used to identify these individuals (eg, population screening, cascade screening, etc). Each of these strategies raises different ethical challenges. In this paper, we analyse these challenges in relation to the risk stratification for AD necessary for using these drugs. We conclude that the new drugs must generate large health benefits for people at risk of developing AD to justify the ethical costs associated with current risk stratification methods, benefits much larger than current drug candidates have. This conclusion raises a new set of ethical questions that should be further discussed.
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