A research blog from the Centre for Resarch Ethics & Bioethics (CRB)

Category: In the research debate (Page 1 of 35)

Can counseling be unphilosophical?

A fascinating paper by Fredrik Andersen, Rani Lill Anjum, and Elena Rocca, “Philosophical bias is the one bias that science cannot avoid,” reminds us of something fundamental, but often forgotten, about the nature of scientific inquiry. Every scientist, whether they realize it or not, operates with fundamental assumptions about causality, determinism, reductionism, and the nature of reality itself. These “philosophical biases” are, they write, unavoidable foundations that shape how we see, interpret, and engage with the world.

The authors show us, for instance, how molecular biologists and ecologists approached GM crop safety with entirely different philosophical frameworks. Molecular biologists focused on structural equivalence between GM and conventional crops, operating from an entity-based ontology where understanding parts leads to understanding wholes. Ecologists emphasized unpredictable environmental effects, working from a process-based ontology where relationships and emergence matter more than individual components. Both approaches were scientifically rigorous. Both produced valuable insights. Yet neither could claim philosophical neutrality.

If science cannot escape philosophical presuppositions, what about counseling and psychotherapy? When a counselor sits with a client struggling with identity, purpose, or belonging, what is actually happening in that encounter? The moment guidance is offered, or even when certain questions are asked rather than others, something interesting occurs. But what exactly?

Consider five questions that might help us see what’s already present in counseling practice:

How do we understand what makes someone themselves? When a counselor helps a client explore their identity, are they working with a theory of personal continuity? When they encourage someone to “be true to yourself,” what assumptions about authenticity are at play? Even the counselor who focuses purely on behavioral techniques is making a statement about whether human flourishing can be addressed without engaging questions about what it means to exist as this particular person. Can we really separate therapeutic intervention from some implicit understanding of selfhood?

What are we assuming about the relationship between mind and body, symptom and meaning? A client arrives with anxiety. One practitioner might reach for cognitive restructuring techniques, another for somatic awareness practices, another for meaning-making conversations. Each choice reflects philosophical commitments about how mind and body relate, whether psychological and physical wellbeing can be separated, and what we’re actually addressing when we work with distress. But do these commitments disappear simply because they remain unspoken?

When we speak of human connection and belonging, what vision of relationship are we already inhabiting? Counselors regularly address questions of intimacy, community, and social bonds. In doing so, might they be operating with implicit theories about what constitutes genuine connection? When guiding someone toward “healthier relationships,” are we working with philosophical assumptions about autonomy and interdependence, about what humans fundamentally need from each other? Can therapeutic work with relationships remain neutral about what relationships fundamentally are?

What understanding of human possibility guides our sense of what can change? Every therapeutic approach carries assumptions about human agency and potential. When we help someone envision different futures, when we work with hope or despair, when we distinguish between realistic and unrealistic goals, aren’t we already operating with philosophical commitments about what enables or constrains human possibility? A therapist who insists that their work deals only with “what’s practicable” seems to be making a philosophical claim; that human existence can be adequately understood through purely pragmatic or practical categories.

How do questions of meaning, purpose, and value show up in therapeutic work, even when uninvited? A client asks not just “How can I feel less anxious?” but “Why do I feel my life lacks direction?” or “What makes any of this worthwhile?” These questions of meaning arise in therapeutic encounters even in approaches that don’t explicitly address them. When such questions surface, can a counselor respond without engaging philosophical dimensions? And if we attempt to redirect toward purely behavioral or emotional terrain, aren’t we implicitly suggesting that questions of meaning and purpose are separate from genuine wellbeing?

Just as scientists benefit from making their philosophical presuppositions explicit and debatable, might therapeutic practitioners benefit from acknowledging and refining the philosophical commitments that already shape their work?

Read the full paper: Philosophical bias is the one bias that science cannot avoid.

Written by…

Luis de Miranda, philosophical practitioner and associated researcher at the Center for Research Ethics and Bioethics at Uppsala University.

Andersen, F., Anjum, R. L., & Rocca, E. (2019). Philosophical bias is the one bias that science cannot avoid. eLife, 8, e44929. https://doi.org/10.7554/eLife.44929

We like challenging questions

How to tell if AI has feelings when it is designed to reflect human traits?

Debates about the possibility that artificial systems can develop the capacity for subjective experiences are becoming increasingly common. Indeed, the topic is fascinating and the discussion is gaining interest also from the public. Yet the risk of ideological and imaginative rather than scientific and rational reflections is quite high. Several factors make the idea of engineering subjective experience, such as developing sensitive robots, either very attractive or extremely frightening. How can we avoid getting stuck in either of these, in my opinion, equally unfortunate extremes? I believe we need a balanced and “pragmatic” analysis of both the logical conceivability and the technical feasibility of artificial consciousness. This is what we are trying to do at CRB within the framework of the CAVAA project.

In this post, I want to illustrate what I mean by a pragmatic analysis by summarizing an article I recently wrote together with Kathinka Evers. We review five strategies that researchers in the field have developed to address the issue whether artificial systems may have the capacity for subjective experiences, either positive experiences such as pleasure or negative ones such as pain. This issue is challenging when it comes to humans and other animals, but becomes even more difficult for systems whose nature, architecture, and functions are very different from our own. In fact, there is an additional challenge that may be particularly tricky when it comes to artificial systems: the gaming problem. The gaming problem has to do with the fact that artificial systems are trained with human-generated data to reflect human traits. Functional and behavioral markers of sentience are therefore unreliable and cannot be considered evidence of subjective experience.

We identify five strategies in the literature that may be used to face this challenge. A theory-based strategy starts from selected theories of consciousness to derive relevant indicators of sentience (structural or functional features that indicate conscious capacities), and then checks whether artificial systems exhibit them. A life-based strategy starts from the connection between consciousness and biological life; not to rule out that artificial systems can be conscious, but to argue that they must be alive in some sense in order to possibly be conscious. A brain-based strategy starts from the features of the human brain that we have identified as crucial for consciousness to then check whether artificial systems possess them or similar ones. A consciousness-based strategy searches for other forms of biological consciousness besides human consciousness, to identify what (if anything) is truly indispensable for consciousness and what is not. In this way, one aims to overcome the controversy between the many theories of consciousness and move towards identifying reliable evidence for artificial consciousness. An indicator-based strategy develops a list of indicators, features that we tend to agree characterize conscious experience, and which can be seen as indicative (probabilistic rather than definitive evidence) of the presence of consciousness in artificial systems.

In the article we describe the advantages and disadvantages of the five strategies above. For example, the theory-based strategy has the advantage of a broad base of empirically validated theories, but it is necessarily selective with respect to which theories individual proponents of the strategy draw upon. The life-based approach has the advantage of starting from the well-established fact that all known examples of conscious systems are biological, but it can be interpreted as ruling out, from the outset, the possibility of alternative forms of AI consciousness beyond the biological ones. The brain-based strategy has the advantage of being based on empirical evidence about the brain bases of consciousness. It avoids speculation about hypothetical alternative forms of consciousness, and it is pragmatic in the sense that it translates into specific approaches to testing machine consciousness. However, because the brain-based approach is limited to human-like forms of consciousness, it may lead to overlooking alternative forms of machine consciousness. The consciousness-based strategy has the advantage of avoiding anthropomorphic and anthropocentric temptations to assume that the human form of consciousness is the only possible one. One of the shortcomings of the consciousness-based approach is that it risks addressing a major challenge (identifying AI consciousness) by taking on a possibly even greater challenge (providing a comparative understanding of different forms of consciousness in nature). Finally, the indicator-based strategy has the advantage of relying on what we tend to agree characterizes conscious activity, and of remaining neutral in relation to specific theories of consciousness: it is compatible with different theoretical accounts. Yet it has the drawback that it is developed with reference to biological consciousness, so its relevance and applicability to AI consciousness may be limited.

How can we move forward towards a good strategy for addressing the gaming problem and reliably assess subjective experience in artificial systems? We suggest that the best approach is to combine the different strategies described above. We have two main reasons for this proposal. First, consciousness has different dimensions and levels: combining different strategies increases the chances of covering this complexity. Second, to address the gaming problem, it is crucial to look for as many indicators as possible, from structural to architectural, from functional to indicators related to social and environmental dimensions. 

The question of sentient AI is fascinating, but an important reason why the question engages more and more people is probably that the systems are trained to reflect human traits. It is so easy to imagine AI with feelings! Personally, I find it at least as fascinating to contribute to a scientific and rational approach to this question. If you are interested in reading more, you can find the preprint of our article here: Is it possible to identify phenomenal consciousness in artificial systems in the light of the gaming problem?

Written by…

Michele Farisco, Postdoc Researcher at Centre for Research Ethics & Bioethics, working in the EU Flagship Human Brain Project.

Farisco, M., & Evers, K. (2025). Is it possible to identify phenomenal consciousness in artificial systems in the light of the gaming problem? https://doi.org/10.5281/zenodo.17255877

We like challenging questions

Paediatric nurses’ experiences of not being able to provide the best possible care

Inadequate staffing, competing tasks and unexpected events can sometimes make it difficult to provide patients with the best possible care. This can be particularly stressful when caring for children with severe diseases. For a nurse, experiencing situations where you cannot provide children with cancer with the best possible care (which means more than just the best possible medical treatment) is an important cause of stress.

To provide a basis for better support for paediatric nurses, a research group interviewed 25 nurses at three Swedish paediatric oncology units. The aim of the interview study was to understand what the nurses experienced as particularly important in situations where they felt they had not been able to provide the best possible care, and how they handled the challenges.

The most important concern for the nurses was to uphold the children’s best interests. One thing that could make this difficult was lack of time, but also disagreements about the child’s best interests could interfere with how the nurses wanted to care for the children. The researchers analyze the paediatric nurses’ handling of challenging situations as a juggling of compassion and competing demands. How do you handle a situation where someone is crying and needs comfort, while a chemotherapy machine somewhere in the ward is beeping and no colleagues are available? What do you do when the most urgent thing is not perceived as the most important?

In the analysis of how the nurses juggled compassion and competing demands, the researchers identified five strategies. One strategy was to prioritize: for example, forego less urgent tasks, such as providing emotional support. Another strategy was to shift up a gear: multitasking, working faster, skipping lunch. A third strategy was to settle for good enough: when you can’t provide the best possible care, you strive to at least provide good enough care. A fourth strategy was acquiescing in situations with different perceptions of the patient’s best interests: for example, continuing to treat a patient because the physician has decided so, even though one believes that prolonged treatment is futile. Regarding this strategy, the nurses requested better dialogue with physicians about difficult patient cases, in order to understand the decisions and prevent acquiescing. The fifth and final strategy was pulling together: to support each other and work as a team with a common goal. Often, there was no need to ask for support; colleagues could spontaneously show solidarity by, for example, staying after their work shifts to help.

In their conclusion, the authors write that adequate staffing, collegial support and good interprofessional communication can help nurses deal with challenges in the care of children with cancer. Read the article here: Juggling Compassion and Competing Demands: A Grounded Theory Study of Pediatric Nurses’ Experiences.

While reading, it may be worth keeping in mind that the study focuses only on situations where it was felt that the best possible care could not be given. The authors point out that the interviews overflowed with descriptions of excellent care and good communication, as well as how rewarding and joyful the work of a paediatric nurse can be.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Ventovaara P, Af Sandeberg M, Blomgren K, Pergert P. Juggling Compassion and Competing Demands: A Grounded Theory Study of Pediatric Nurses’ Experiences. Journal of Pediatric Hematology/Oncology Nursing. 2025;42(3):76-84. doi:10.1177/27527530251342164

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Ethics needs empirical input

Interprofessional collaboration in hospital care of patients who self-harm

Patients who are treated in hospital for self-harm can sometimes arouse strong emotions in the staff. At the same time, the patients may be dissatisfied with their care, which sometimes involves restrictions and safety measures to prevent self-harm. In addition to such tensions between patients and staff, the healthcare staff is divided into different professions with their own roles and responsibilities. These professional groups may have different perspectives and thus conflicting opinions about what care individual patients should receive. In order for patients to receive good and cohesive care, good interprofessional collaboration is therefore required between, for example, nurses and psychiatrists.

A Swedish interview study examined how nurses and psychiatrists think about their responsibility and autonomy in relation to each other in different situations on the ward. In general, they considered themselves autonomous, they could take their professional responsibility without being influenced by other colleagues. Both groups agreed that psychiatrists had the ultimate responsibility for the patients’ care, and it emerged that the nurses saw themselves as the patients’ advocates. If decisions made by the psychiatrist went against the patient’s wishes, they saw it as their task to explain the patient’s views, even if they did not agree with them.

However, sometimes the scope for action could be affected by decisions made by colleagues. For example, one could experience that the scope for taking responsibility for a patient was reduced if colleagues had already isolated the patient. In other cases, one could experience that colleagues’ decisions increased one’s responsibility, for example if decisions based on ignorance about a patient risked leading to new self-harm that the nurses had to deal with.

An important theme in the interviews was how one could sometimes renunciate some of one’s professional autonomy in order to achieve interprofessional collaboration. The interviewees agreed that one ultimately had to stand united behind decisions and set aside one’s own agendas and opinions. Consensus was considered essential and was sought even if it meant reducing one’s own autonomy and power. Consensus was achieved through discussions in the team where participants humbly respected each other’s professional roles, knowledge and experiences.

In their conclusion, the authors emphasize that the study shows how nurses and psychiatrists are prepared to set aside hierarchies and their own autonomy in order to achieve collaboration and shared responsibility in the care of patients with self-harm. Since this has not been visible in previous studies, they suggest that attitudes and skills towards interprofessional collaboration may have improved. As this is essential for good cohesive care of patients, it is important to continue to support such attitudes and skills.

If you want to see all the results from the interview study and read the authors’ discussion about responsibility and autonomy in interprofessional collaboration, you can find the article here: Navigating consensus, interprofessional collaboration between nurses and psychiatrists in hospital care for patients with deliberate self-harm.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Löfström, E. et al. (2025) ‘Navigating consensus, interprofessional collaboration between nurses and psychiatrists in hospital care for patients with deliberate self-harm’, Journal of Interprofessional Care, 39(3), pp. 479–486. doi: 10.1080/13561820.2025.2482691

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We recommend readings

What is philosophical health and can it be mapped?

Philosophers such as Socrates and philosophical schools such as Stoicism have had a certain influence on psychology and psychotherapy, and thus also on human health. But if philosophy can support human health via psychology, can it not support health more directly, on its own? A growing trend today is to offer philosophical conversations as a form of philosophical practice that can support human health in existential dimensions. The trend to offer philosophical conversations is linked to a concept of health that is not only about physical and mental health, and which does not understand health as merely the absence of disease: philosophical health.

What does it mean to talk about philosophical health? Given all the health ideals that already affect self-esteem, should we now also be influenced by philosophical health ideals that make our lives feel hopelessly ill-conceived and pointless? No, on the contrary, the stress that human ideals and norms create can be an important topic to philosophize about, in peace and quiet. Instead of being burdened by more ideas about how we should live, instead of giving the appearance of fulfilling the ideals, we can freely examine this underlying stress: the daily feeling of being compelled to live the way we imagine we should. No wonder philosophical practice is a growing trend. Finally, we get time to think openly about what other trends usually make us hide: ourselves, when we do not identify with the trends, the norms and the ideals.

Philosophizing sounds heavy and demanding but can actually be the exact opposite. I have written an essay about how philosophical self-examination, in its best moments, can lighten the mind by unexpectedly illuminating our many tacit demands and expectations. Unfortunately, the essay is not published with open access, but here is the link: The Wisdom of Intellectual Asceticism.

A colleague at CRB, Luis de Miranda, has long worked with philosophical health both as a practitioner and researcher. He emphasizes that human health also includes existential dimensions such as harmony, meaning and purpose in life, and that in order to support wellbeing in these intimately universal dimensions, people also need opportunities to reflect on life. In a new article (written with six co-authors), he develops the concept in the form of a research tool that could map philosophical health: a philosophical health compass. The idea is that the compass will make it possible to study philosophical health in more quantitative ways, for example making comparisons between populations and assessing the effects of different forms of philosophical practice.

The compass consists of a questionnaire. Respondents are asked to consider statements about 6 existential dimensions of life, revolving around the body, the self, belonging, possibilities in life, purpose, and finally, their own philosophical reflection. Each dimension is explored through 8 statements. Respondents indicate on a 5-point scale how well the total of 48 statements apply to them.

I cannot judge how well the 48 statements are chosen, or how easy it is for people to take a position on them, but the statements are more concrete than you might think and it will be exciting to see what happens when the compass is put to the test. Will it be able to measure the wisdom of the crowd, can philosophically relevant differences and changes be mapped? If you want to take a closer look at the philosophical health compass, you can find the article here: The philosophical health compass: A new and comprehensive assessment tool for researching existential dimensions of wellbeing.

Luis de Miranda warns that the compass may risk not only supporting philosophical health, but also undermining it if the compass is interpreted as an ideal that determines the qualities that distinguish good philosophical health. Using the compass wisely requires great openness and sensitivity, he emphasizes. Yes, hopefully the compass will raise many philosophical questions about what philosophical health is, and how it can be studied. For what is the great openness and responsiveness that Luis de Miranda emphasizes, if not philosophical inquisitiveness itself?

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Pär Segerdahl; The Wisdom of Intellectual Asceticism. Common Knowledge 1 January 2025; 31 (1): 74–88. doi: https://doi.org/10.1215/0961754X-11580693

de Miranda, L., Ingvolstad Malmgren, C., Carroll, J. E., Gould, C. S., King, R., Funke, C., & Arslan, S. (2025). The philosophical health compass: A new and comprehensive assessment tool for researching existential dimensions of wellbeing. Methodological Innovations, 0(0). https://doi.org/10.1177/20597991251352420

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Thinking about thinking

What does precision medicine and AI mean for the relationship between doctor and patient?

In a sense, all care strives to be tailored to the individual patient. But the technical possibilities to obtain large amounts of biological data from individuals have increased so significantly that today one is talking about a paradigm shift and a new way of working with disease: precision medicine. Instead of giving all patients with a certain type of cancer the same standard treatment, for example, it is possible to map unique genetic changes in individual patients and determine which of several alternative treatments is likely to work best on the individual patient’s tumor. Other types of individual biological data can also be produced to identify the right treatment for the patient and avoid unnecessary side effects.

Of course, AI will play an increasingly important role in precision medicine. It can help identify relevant patterns in the large amount of biological data and provide support for precision medicine decisions about the treatment of individual patients. But what can all this mean for the relationship between doctor and patient?

The question is examined in a research article in BMC Medical Informatics and Decision Making, with Mirko Ancillotti as main author. The researchers interviewed ten physicians from six European countries. All physicians worked with patients with colorectal cancer. In the interviews, the physicians highlighted, among other things, that although it is possible to compile large amounts of individual biological data, it is still difficult to tailor treatments for colorectal cancer because there are only a few therapies available. The physicians also discussed the difficulties of distinguishing between experimental and conventional treatments when testing new ways to treat colorectal cancer in precision medicine.

Furthermore, the physicians generally viewed AI as a valuable future partner in the care of patients with colorectal cancer. AI can compile large amounts of data from different sources and provide new insights, make actionable recommendations and support less experienced physicians, they said in the interviews. At the same time, issues of trust were evident in the interviews. For example, the physicians wondered how they can best rely on AI results when they do not know how the AI ​​system arrived at them. They also discussed responsibility. Most said that even when AI is used, the physicians and the team are responsible for the care decisions. However, they said that sometimes responsibility can be shared with AI developers and with those who decide on the use of AI in healthcare.

Finally, the physicians described challenges in communicating with patients. How do you explain the difference between experimental and conventional treatment in precision medicine? How do you explain how AI works and how it helps to tailor the patient’s treatment? How do you avoid hype and overconfidence in “new” treatments and how do you explain that precision medicine can also mean that that a patient is not offered a certain treatment?

If you would like to see more results and the authors’ discussion, you can find the article here: Exploring doctors’ perspectives on precision medicine and AI in colorectal cancer: opportunities and challenges for the doctor-patient relationship.

Some of the study’s conclusions are that good integration of AI and precision medicine requires clearer regulation and ethical guidelines, and that physicians need support to meet the challenge of explaining how AI is used to tailor patient treatment. It is also important that AI remains an auxiliary tool and not an independent decision-maker. Otherwise, patients’ trust can be eroded, as can physicians’ autonomy, the authors argue.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Ancillotti, M., Grauman, Å., Veldwijk, J. et al. Exploring doctors’ perspectives on precision medicine and AI in colorectal cancer: opportunities and challenges for the doctor-patient relationship. BMC Med Inform Decis Mak 25, 283 (2025). https://doi.org/10.1186/s12911-025-03134-0

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We have a clinical perspective

Mind the gap between ethics in principle and ethics in practice

When ethical dilemmas are discussed using case descriptions or vignettes, we tend to imagine the cases as taken from reality. Of course, the vignettes are usually invented and the descriptions adapted to illustrate ethical principles, but when we discuss the cases, we tend to have the attitude that they are real. Or at least real possibilities: “What should we do if we encounter a case like this?”

Discussing ethical cases is an extremely good exercise in ethical reasoning and an important part of the education and training of healthcare professionals. But sometimes we may also need to keep in mind that these discussions are adapted exercises in the ethics gym, so to speak. Reality rarely delivers separate dilemmas that can be handled one by one. Often, life is rather a continuous flow of more or less clearly experienced challenges that change faster than we can describe them. We cannot always say what the problem situation actually looks like. Therefore, it may sometimes be wise not to decide or act immediately, but to wait for the situation to take a different and perhaps clearer form. And then the ethical problem may in practice have been partially resolved, or become more manageable, or become obsolete.

Does that sound irresponsible? Judging by two texts that I want to recommend today, responsible healthcare professionals may, on the contrary, experience a friction between ethics in principle and ethics in practice, and that it would be unethical not to take this seriously. The first text is an essay by Joar Björk (who is both an ethicist and a palliative care physician). In the journal Palliative Care and Social Practice, he discusses a fictional patient case. A man with disseminated prostate cancer is cared for by a palliative care team. In the vignette, the man has previously expressed that he wants complete knowledge of his situation and what his death might look like. But when the team has time to talk to him, he suddenly changes his mind and says that he does not want to know anything, and that the issue should not be raised again. How to act now?

According to Joar Björk, the principle-based ethical standard recommendation here would probably be the following. Respect for the patient’s autonomy requires that the team not try to carry out the conversation. Only if there is good reason to believe that a conversation can have great medical benefit can one consider trying to inform the patient in some way.

Note that the principle-based recommendation treats the situation that has arisen as a separate case: as a ready-made vignette that cannot be changed. But in practice, palliative teams care for their patients continuously for a long time: so much is constantly changing. Of course, they are aware that they cannot impose information on patients who state that they do not want it, as it violates the principle of autonomy. But in practice, the unexpected situation is an unclear ethical challenge for the care team. What really happened, why did he change his mind? Does the man suddenly refuse to accept his situation and the proximity of death? Maybe the team should cautiously try to talk more to him rather than less? How can the team plan the man’s care – maybe soon a hospital bed will be needed in his home – if they are not allowed to talk to him about his situation? As palliative care teams develop good listening and communication skills, the situation may very well soon look different. Everything changes!

Joar Björk’s reflections give the reader an idea of ​​how ethical challenges in practice take on different forms than in the vignettes that are so important in ethics teaching and training. How does he deal with the gap between ethics in principle and ethics in practice? As I understand him, Joar Björk does not advocate any definite view on how to proceed. But he is trying to formulate what he calls a palliative care ethos, which could provide better ethical guidance in cases such as the one just described. Several authors working in palliative care have attempted to formulate aspects of such a care ethos. In his essay, Joar Björk summarizes their efforts in 11 points. What previously sounded passive and irresponsible – to wait and see – appears in Joar Björk’s list in the form of words of wisdom such as “Everything changes” and “Adaptation and improvisation.”

Can healthcare professionals then find better ethical guidance in such practical attitudes than in well-established bioethical principles? Joar Björk tentatively discusses how the 11 points taken together could provide guidance that is more sensitive to the practical contexts of palliative care. I myself wonder, however – but I do not know – whether it would not be wise to allow the gap between ethics in principle and ethics in practice to be as wide as it is. The 11 points probably have their origin in an ethical care practice that already functions as the points describe it. The practice works that way without healthcare professionals using the points as some kind of soft guidance. Joar Björk thus describes a palliative care ethics in practice; a description that can help us think more clearly about the differences between the two forms of ethics. Reflecting on the 11 points can, for example, make healthcare professionals more aware of the specifics of their practice, so that they do not wrongly blame themselves if they do not always relate to situations that arise as if they were separate cases that illustrate ethical principles.

Perhaps it is impudent of me to suggest this possibility in a blog post that recommends reading, but Joar Björk’s reflections are so thought-provoking that I cannot help it. Read his essay here: Ethical reflection: The palliative care ethos and patients who refuse information.

You will certainly find Joar Björk’s reflections interesting. Therefore, I would like to mention a new book that also reflects on the gap between ethics in principle and ethics in practice. The book is written by Stephen Scher and Kaisa Kozlowska and is published with open access. You can find it here: Revitalizing Health Care Ethics. The Clinician’s Voice.

So, I think it is difficult to see clearly the difference between ethics in principle and ethics in practice. We tend to transfer characteristics from one to the other, and become dissatisfied when it does not work. The book by Scher and Kozlowska therefore uses the warning “Mind the gap” to draw attention to the difference. If we mind the gap between the platform and the train – if we do not imagine the train as an overly mobile platform, and the platform as an overly stationary train – then perhaps the two forms of ethics can accept and find better support in each other. More often than we think, we are dissatisfied for the simple reason that we fail to keep different things apart.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Björk J. Ethical reflection: The palliative care ethos and patients who refuse information. Palliative Care and Social Practice. 2025;19. doi:10.1177/26323524251355287

Stephen Scher, Kasia Kozlowska. 2025. Revitalizing Health Care Ethics. The Clinician’s Voice. Palgrave Macmillan Cham.

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We recommend readings

What do MS patients consider to be the most important features of treatment?

Multiple sclerosis (MS) is a chronic inflammatory disease that affects the nerves of the brain and spinal cord. Symptoms can vary between individuals and the progression of the disease is difficult to predict. Medications can slow the progression of the disease and relieve symptoms, but they do not cure the disease. Symptoms tend to come and go and need to be monitored so that the patient always receives appropriate treatment.

Because MS is a lifelong disease with symptoms that come and go, and that change throughout life, it is important to know which features of treatment are perceived by patients as particularly important. Such knowledge can help healthcare professionals, in consultation with patients, to better tailor treatment to the individual’s wishes and needs. Patient-centred care is probably particularly important for lifelong diseases such as MS, with unpredictable progression and changing symptoms.

So how can we know which features of treatment are considered most important by patients? Preference studies can be conducted. The approaches in such studies vary. Patients can be interviewed or they can complete surveys. Surveys can ask questions in different ways, for example, the task may be to rank alternatives. Sometimes preference studies resemble experiments in which participants are presented with a series of choice situations that are systematically varied.

A Swedish-Italian collaboration investigated what patients perceive as important features of the treatment by giving them a ranking task. MS patients at an Italian university hospital were asked to rank alternatives for five different features of the treatment, including treatment effect and intervention method. The treatment effect that was ranked highest was preserved cognitive function, and the intervention method that was valued highest was disease-modifying drugs. The patients were also asked to justify their answers.

The research team then evaluated the results of the ranking task. The options that the patients ranked highest were now identified as important features of the treatment. Here is the final list of important features of the treatment:

Physical activity

Cognitive training

Disease-modifying drugs

Emotional support

Treatment effects

Each feature has 3–4 alternatives: different types of physical activity, different types of cognitive training, and so on. This ranking study is a preliminary study for a future, more experimental-like preference study that will be based on the features in the list. The advantage of such a step-by-step work process is that you can ensure that you ask the right questions and include the relevant features when designing the experimental study.

The final results therefore remain to be seen, but the above features can be considered an important step along the way. You can read the article here: What matters to patients with multiple sclerosis? Identifying patient-relevant attributes using a ranking exercise with open-ended answers from an online survey in Italy.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Bywall KS, Kihlbom U, Johansson JV, et al. What matters to patients with multiple sclerosis? Identifying patient-relevant attributes using a ranking exercise with open-ended answers from an online survey in Italy. BMJ Open 2025;15:e095552. doi: 10.1136/bmjopen-2024-095552

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Exploring preferences

Are you a blissfully unaware author of an article you never wrote?

Every day, researchers receive a motley of offers from dubious journals to publish in them – for a fee. The fact that researchers do not accept these offers does not prevent them from one day discovering that they have become authors of an article that they never wrote.

This recently happened to four surprised colleagues of mine. Suddenly, they began to receive inquiries from other colleagues about a new article that they were supposed to have written. When they investigated the matter, they discovered that an article actually existed in published form, in their names, even though they had neither written it nor even dreamed of the study described in it. Since they had never submitted a manuscript, they were of course not in communication with the journal’s editorial staff: they received neither peer reviews nor proofs to read. Although the article they read with increasing astonishment seemed to report a study on children with cancer, a vulnerable group, the study lacked both ethical approval and funding, and the location of the study was not disclosed. When my puzzled and concerned colleagues contacted the journal about these oddities, they naturally received no response.

One may wonder how such publicist virgin births can occur. If we rule out the possibility that a deity has begun to communicate with humanity via new electronic forms of publishing, in the name of established researchers, perhaps we should focus on the question of who can profit from the miracles. Could it be a cheating researcher trying to improve their credentials by publishing a fraudulent study? Hardly, the cheater’s name is not included in the list of authors, so the publication would not be of any use in the CV. Or could it be the owners of the journal who are trying to make the journal look more legitimate by borrowing the names of established and credible researchers, so that more researchers will be tempted to accept the offers to publish in the journal – for a fee? With the help of AI, an article can easily be generated that reports research that no real researcher would even dream of. Such as a study on children with cancer without ethics approval and funding, conducted in an unknown location and published without the slightest contact with the journal.

To alert scientific journals to this new challenge, one of my colleagues chose to publish a description of the group’s experience of becoming authors of an article they never wrote. You will find the description here – the author’s name is authentic and not just a generated “probable name”: Fraudulent Research Falsely Attributed to Credible Researchers—An Emerging Challenge for Journals?

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Godskesen, T. (2025), Fraudulent Research Falsely Attributed to Credible Researchers—An Emerging Challenge for Journals? Learned Publishing, 38: e2009. https://doi.org/10.1002/leap.2009

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We like ethics

Overweight increases the risk of cancer – but what good does the information do?

Authorities and researchers have a responsibility to the public to disseminate information about risks identified through research. Dissemination of information and education are also an important part of public health efforts to influence norms about lifestyle habits and support individuals in making informed choices about their health.

Research has found links between overweight and at least 13 different types of cancer, including colorectal cancer and postmenopausal breast cancer. Preventing and treating obesity could therefore lead to fewer cancer cases in the future. The European Code Against Cancer presents 12 actions individuals can take to reduce their cancer risk. These include lifestyle changes, protection from certain chemicals, participation in vaccination and screening programs, and maintaining a healthy weight.

This type of information suggests that preventive measures can be controlled and influenced by the individual. It is the individual who is expected to act. However, perceptions that individuals have control over the causes of cancer can lead to stigmatization and blaming of cancer patients, as well as the belief that the disease is self-inflicted. Such harmful effects of health information have been observed in previous campaigns aimed at raising public awareness of the link between smoking and lung cancer. Overweight and obesity are already stigmatized conditions. People with overweight and obesity face discrimination in all sectors of society, including healthcare, which can have negative physical and psychological consequences. Therefore, when informing about overweight as a cancer risk factor, it is important to consider the risk of reinforcing the widespread stigmatization of people with overweight.

In a new interview study, I and three other researchers explore how people with overweight are affected by health information about the link between overweight and cancer. Participants highlighted several ethically important factors to consider when communicating this health risk, such as the risk of stigmatization, the distribution of responsibility for treatment and prevention, and the need for empathy. Participants perceived risk information about the link between overweight and cancer as personally important. It concerns their bodies and health. However, the information was burdensome to carry. It felt tough to be singled out as high-risk for cancer. This was partly because they found it difficult to act on the information, knowing how hard it is to lose weight: “No one is overweight by choice.” The information could therefore have counterproductive consequences such as anxiety and overeating. It could also reinforce feelings of failure and increase self-hatred. Many participants reported negative experiences from healthcare encounters where they felt judged and misunderstood. Moreover, adequate support for weight loss is often lacking. The information thus becomes meaningless, they argued, and was perceived as offensive and patronizing.

The study participants contributed several suggestions for improvement. They called for information that includes the complex causes of overweight and clear guidance on how to reduce cancer risk in various ways – not just through weight loss, but also through alternative methods. They also emphasized the importance of healthcare professionals showing empathy and offering person-centred care that considers the individual’s unique situation and needs. This includes concrete and feasible advice, as well as support for patients in their efforts to improve their health.

In our article, we emphasize that health communication often lacks both ethical considerations and clear objectives (beyond the obligation to be transparent). Public health interventions should, like clinical interventions, be based on ethical considerations and principles where the positive effects of the intervention are weighed against potential negative effects (or “side effects”). Sometimes, some harm may be acceptable if the benefit is sufficiently great. But currently, the benefit of information about the link between overweight and cancer appears minimal or non-existent, making negative consequences unacceptable. Our conclusion is that such risk information for people with overweight and obesity, if it is to promote health and avoid causing harm, should be empathetic, supportive, and based on an understanding of the complex causes of overweight. By acting responsibly and compassionately, healthcare professionals and researchers can help improve health outcomes for this target group.

If you want to read our interview study, you can find it here: Perceptions of cancer risk communication in individuals with overweight or obesity – a qualitative interview study.

Want to know more?

European Coalition for People living with Obesity

Different links between overweight and cancer risk – Uppsala University

Written by…

Åsa Grauman, researcher at the Centre for Research Ethics & Bioethics.

Grauman, Å., Sundell, E., Nihlén Fahlquist, J., Hedström, M. Perceptions of cancer risk communication in individuals with overweight or obesity – a qualitative interview study. BMC Public Health 25, 1900 (2025). https://doi.org/10.1186/s12889-025-23056-w

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