The Ethics Blog

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

Category: In the research debate (Page 1 of 36)

Public perceptions of risk information about colorectal cancer

toilet
24 March, 2026 / / 1 Comment

The fourth most common form of cancer in Sweden is colorectal cancer. The disease can be linked to both heredity and environmental factors, and to individual lifestyle factors such as tobacco smoking, obesity, alcohol consumption, physical inactivity and eating habits (high intake of red and processed meat; low intake of fruit, vegetables, fibers and calcium). The link to lifestyle means that individuals can reduce their risk of colorectal cancer by changing their habits.

This opportunity to influence one’s own risk naturally requires that one is aware of the disease and informed about the lifestyle-related factors. But what does the public know about colorectal cancer? How do they prefer that risk information about lifestyle-related factors be communicated? And what can motivate them to change their habits? Well-designed risk communication requires knowledge of these issues.

An interview study investigated the general public’s knowledge of colorectal cancer and views on risk communication about the disease. They also examined what the participants thought would motivate them to change their lifestyle. The lead author is Erica Sundell, who, together with four co-authors, describes the study’s design and results in an article in BMC Public Health. They found that the participants generally knew very little about colorectal cancer and that most had never encountered information about specific risk factors. The knowledge gap was instead filled by stereotypes about who is at risk of developing colorectal cancer, and by guesses about how healthy habits can outweigh less healthy ones. Such intuitions can lead to incorrect assessments of one’s own risk and how it is best managed. Colorectal cancer therefore needs to be made more visible, but how?

Something that emerged from the interviews was that specific risk factors for colorectal cancer did not necessarily motivate the participants to change their habits. The risk of colorectal cancer was only one of several factors that they balanced, and they were prepared to take certain risks in order to live a good life here and now. It also turned out that although some believed that a reduced risk of colorectal cancer could motivate them to change their habits, others said that what could motivate them to live healthier was a reduced risk of cardiovascular disease, better health in general, and greater well-being.

Another interview result was that the participants wanted information that explained how lifestyle-related factors can increase the risk of colorectal cancer. Several found it strange that smoking can affect the risk of cancer in the colon and rectum and not just in the lungs. Other risk factors also seemed intuitively unlikely. The interviewees therefore wanted information that not only listed risk factors but also provided a deeper understanding of the mechanisms, at least when the risk factors were spontaneously perceived as unlikely. At the same time, the messages need to be simple and not overloaded with information. Furthermore, the participants believed that positive information that emphasizes what you gain from changing your habits is more effective than negative information that spreads fear and guilt by focusing primarily on risks associated with your lifestyle.

The study yielded many interesting results, for example about where and when people are most receptive to risk information, and how responsibility can be shared between the individual and society. You can find the article here: Colorectal cancer risk: stereotypical assumptions and competing values ​​– a qualitative study with the general public.

In their conclusion, the authors emphasize that colorectal cancer needs to be made visible in order to counteract preconceived notions about the disease. There is a clear need to make it understandable how certain lifestyle habits can affect the risk of colorectal cancer, as the connections can sometimes seem unlikely. It should also be borne in mind that people may have different motives for living healthier, and that they may make different trade-offs between quality of life and reduced risk. Finally, the authors emphasize that risk communication about colorectal cancer should be nuanced and non-judgmental, especially considering that the recommendations do not guarantee protection against cancer.

Pär Segerdahl

Written by…

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

Sundell, E., Hedström, M., Fahlquist, J.N. et al. Colorectal cancer risk: stereotypical assumptions and competing values – a qualitative study with the general public. BMC Public Health 26, 706 (2026). https://doi.org/10.1186/s12889-026-26737-2

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We care about communication

How is ethical review perceived by researchers in the social sciences and humanities?

3 March, 2026 / / 0 Comments

Research involving humans requires ethical review. Ethical review is important to protect the rights and interests of research participants, and to maintain public trust in research. Ethical review was originally developed for biomedical research where it is common to recruit patients as test subjects, for example in clinical drug trials. In Sweden, a central authority is responsible for ethical review, the Ethical Review Authority. In order to conduct research involving humans and sensitive personal data, researchers must first apply for permission from the authority. Researchers who violate the Act on Ethical Review of Research involving Humans can be prosecuted and sentenced to a fine or imprisonment.

Social sciences and humanities are also covered by the Act on Ethical Review. However, it has been questioned whether the requirement for ethical review is relevant for these academic disciplines where humans are not normally recruited as test subjects. However, even here, empirical research involving humans occurs, and the methods used can affect and harm the people in the studies. Furthermore, sensitive personal data is often used in the research. If such aspects justify ethical review of biomedical research, they should also justify ethical review of research in the social sciences and humanities.

At the same time, it should be remembered that research is conducted differently in different scientific fields. For example, research in the social sciences and humanities is usually conducted in a more exploratory and inductive manner than in biomedicine. Aims, questions and methods can be modified during the course of the research work, as data is collected and analyzed. It can therefore be difficult for researchers in these disciplines to provide sufficiently specific information about aims, questions and methods in their ethics review applications. Furthermore, in the social sciences and humanities, researchers often work with publicly available personal data: they may have appeared in newspapers. Do researchers have to apply for ethical permission to conduct research on sensitive personal data that anyone can access, such as opinions expressed in debates in the media?

The requirement for ethical review in the social sciences and humanities has been debated and questioned by representatives of these disciplines. It is therefore valuable to empirically examine researchers’ perceptions of ethical review. Do the critical opinions in the debate have broader support among researchers? Together with three co-authors, William Bülow reports on an interview study with 18 Swedish researchers in business, language, history, political science, sociology, gender studies, religious studies and other disciplines within the academic domain. The article is published in the Journal of Academic Ethics. Questions that were sought to be answered were how researchers believe the ethical review system works within their academic disciplines, what advantages and disadvantages researchers experience with the system, and how they believe it can be adapted for research in the social sciences and humanities.

The interviews revealed a broad spectrum of experiences and perceptions. Some considered it an advantage that research projects are ethically reviewed by an external authority that has the necessary expertise, infrastructure and independence. Others saw it as a disadvantage that researchers, faculties and universities were deprived of their personal and collegial ethical responsibility. Does one not take deeper ethical responsibility by continuously discussing one’s research with colleagues, for example at the research seminar? Many of those interviewed described the difficulties that researchers in the social sciences and humanities may experience when they have to specify the research in advance in the application form, since aims, questions and methods can be modified during the work. Some described how they had to find a balance between providing the specific information required in an ethics review application and leaving room for the changes in the design that the research itself may require.

A recurring theme in the interviews was that the application form was too focused on biomedical research with human test subjects. Many of the questions in the form were perceived as irrelevant and almost unanswerable. For example, forms were requested that were better adapted for document studies. Many also experienced a lack of guidance and support from the Ethical Review Authority when filling in the form. Others, however, considered that such criticism of the form and the support from the authority was exaggerated.

The system of ethical review also gave rise to emotions. For example, fear of making mistakes in the ethics application that lead to losing important research time, or concerns about whether researchers are allowed to use publicly available personal data without applying for ethical permission. Some stated that colleagues could opt out of empirical research to avoid these uncertainties that the system could create. Some considered it unreasonable that they, as researchers, could be sentenced to fines or imprisonment for not following the Act on Ethical Review. An important theme in the interviews was that the system of ethical review can influence researchers’ choice of questions, materials and methods in order to avoid perceived uncertainties about ethical review.

In their discussion, the authors argue that the interview results speak against some of the objections that representatives of the social sciences and humanities have directed at the Swedish system of ethical review. For example, it has been argued that regulation can lead to de-professionalization, where researchers no longer take ongoing responsibility for ethical problems that arise in their research work. Although such concerns were expressed in the interviews, others emphasized that, on the contrary, there were very lively discussions about research ethics at their institutions and that the legal requirement for ethical review has increased awareness of research-ethical issues.

A particularly problematic interview result, according to the authors, is that fear and uncertainty about the requirement for ethical review, reinforced by the risk of legal action such as fines and imprisonment, can influence researchers’ choice of questions and methods. There is a risk that questions that one is genuinely curious about are investigated to a lesser extent, or with less empirical depth, in order to avoid the requirement for ethical review. In short, important research risks not being carried out if researchers choose more theoretical approaches or limit their material and questions to avoid perceived uncertainties about ethical review.

Overall, the interview results do not speak against the Swedish ethical review system, according to the authors. However, the results indicate that certain aspects of the system may need to be improved and adapted to the social sciences and humanities. The Ethical Review Authority probably needs to make the application process and form more flexible to suit different scientific fields. The authority probably also needs to consider better support for researchers who are unsure about the application process or the ethical requirements that apply to research in the social sciences and humanities.

For more results and the authors’ discussion, read the article here: Experiences of Ethical Review: Perspectives of Swedish Researchers in Social Science and Humanities.

Pär Segerdahl

Written by…

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

Bülow, W., Johansson, M., Persson, V. et al. Experiences of Ethical Review: Perspectives of Swedish Researchers in Social Science and Humanities. Journal of Academic Ethics 24, 35 (2026). https://doi.org/10.1007/s10805-025-09702-3

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Taking the science of consciousness to the clinic is a collective endeavor

24 February, 2026 / / 1 Comment

“Consciousness” is an ambiguous concept that arouses the interest of people with different expertise, including the general public. This situation naturally creates several related ambiguities, for example about how consciousness should be understood scientifically and how we can explain it. Not least, it creates uncertainties about how we can translate the scientific knowledge we have about consciousness to the clinics.

How do we best develop our understanding of consciousness and how do we make current knowledge in the field practically useful? In an article recently published in Neuroscience & Biobehavioral Reviews, we propose a model that combines theoretical reflection, empirical research, ethical analysis, and clinical translation. Our article, Advancing the science of consciousness: from ethics to clinical care, starts from the fundamental question of how to translate significant advances in the neurobiological study of consciousness into clinical settings. A first step towards answering this question is to identify the obstacles that need to be overcome. We focus on two main obstacles: the lack of a generally agreed-upon working definition of consciousness, and the lack of consensus on how to identify reliable markers that indicate the presence of consciousness.

The article is the result of a multi-year collaboration between experts from various fields, including philosophy, ethics, medicine, clinical, cognitive, and computational neuroscience, as well as representatives of patient associations. The research described in the article focuses on disorders of consciousness (DoCs), that is, the impaired mental condition of patients with traumatic or non-traumatic brain injuries. The prevalence of this severe medical condition is quite high, the rate of misdiagnosis is fairly alarming, and treatment options are still limited.

Following a traumatic or non-traumatic brain injury, the patient may enter into a state of coma where they are completely unresponsive and lack the two main clinical dimensions of consciousness: wakefulness (related to the level of consciousness) and awareness (related to the content of consciousness). In the article, we leave aside the big controversy about the definition of consciousness and propose that a clinically useful choice is to treat consciousness as a combination of wakefulness and awareness. This pragmatic choice will allow us to improve the clinical treatment of patients with DoCs and, consequently, their well-being.

We further describe behavioral, physiological, and computational markers and measures that recent research indicates are very promising for formulating more precise and reliable diagnoses of various disorders of consciousness. Such a combination of approaches is recommended in the international guidelines on DoCs to reduce the still too high rate of misdiagnoses. Yet, there are still concerns about whether the available measures are effective and whether they cover the full spectrum of consciousness. Therefore, researchers are striving to identify additional approaches and indicators. In the article, we propose that patients’ ability to perceive illusions and respond accordingly can be used to assess their capacity for conscious experience. We also propose that virtual reality can be used to detect residual consciousness and improve interaction with patients affected by DoCs.

Technological advances alone cannot improve the current state of consciousness science. To identify the most effective strategies for translating scientific findings into better healthcare, technological advances must be combined with ethical reflection. The ethical issues related to DoCs are numerous. In the article, we focus on some of them to illustrate the need for continued dialogue between different disciplines and stakeholders, including researchers, clinicians, and patient representatives. We analyze, among other things, misdiagnosis, as well as the risk that by using “healthy” consciousness as the norm for what consciousness is, we may neglect the possibility that patients with DoCs retain forms of consciousness that do not conform to the norm. We also analyze uncertainties about how these patients are classified, as well as the need for better involvement of family members, for example through improved communication and information exchange about the patients’ condition that can help clinicians make the most appropriate decisions. Furthermore, we analyze the promise of neurorehabilitation and neuropalliative care for these patients. Since the inspiration of our ethical reflection in the article is pragmatic and action-oriented, we conclude by proposing an actionable model that clearly identifies and assigns specific responsibilities to different actors (such as institutions, researchers, clinicians, and family members).

While we cannot claim to resolve all relevant issues, the collaboration behind this article can serve as a model for how to approach the challenges. A multidisciplinary, multi-perspective approach involving different disciplines and stakeholders is needed to improve the prognosis and quality of life for patients with disorders of consciousness. It is needed also to empower family members with the knowledge and capacity they need to participate in the clinical care of their loved ones.

Finally, our article is defined as a “live paper,” because the reader can access a number of interactive tools online on the research platform Ebrains, including datasets, computational models, and figures.

Written by…

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

Michele Farisco, Kathinka Evers, Jitka Annen, et al. Advancing the science of consciousness: from ethics to clinical care, Neuroscience & Biobehavioral Reviews, Volume 180, 2026, https://doi.org/10.1016/j.neubiorev.2025.106497

We transcend disciplinary borders

Management control through guidelines creates complex challenges for general practitioners

Stethoscope
10 February, 2026 / / 3 Comments

A vital tool for ensuring and improving quality in healthcare is clinical guidelines. Guidelines are used to support the clinicians’ memory and evidence-based decision-making, as well as to guide the choice of investigations and treatments toward the most cost-efficient alternatives. Increased control over healthcare costs is also given higher priority as a larger proportion of public health spending is directed toward private actors operating within publicly funded care. To ensure proper outcome monitoring, strong emphasis is placed on measurable indicators, which are defined by clinical guidelines.

Together with medical advances, the ambition to improve quality through prioritizing measurable results has increased both the number and complexity of clinical guidelines guiding the work of healthcare professionals. Guidelines have evolved from being simple decision-support tools for individual patient situations to being designed more often as comprehensive care processes for different medical conditions, encompassing multiple healthcare professionals, various healthcare settings, and extended periods of time. An illustrative example is the standardized care processes being developed within the Swedish system for knowledge-based management, led by the Swedish Association of Local Authorities and Regions.

The development towards increased management control and a stronger focus on measurable outcomes in public organizations has caused considerable debate, where both the advantages and disadvantages of micromanagement have been widely discussed. The focus of the media debate has, among other things, revolved around the organizational and governance model New Public Management (NPM) and its consequences for employees in the public sector.

However, management control through guidelines affects different professions in different ways and also varies across countries. Thus, there is insufficient empirical research examining the concrete consequences that management control through guidelines has for physicians in Swedish primary care and for their work. Therefore, in the article General practitioners and management control through guidelines: a qualitative study of its effects on their practice, which my co-authors and I have recently had published, we examine the consequences for Swedish general practitioners (GPs).

We interviewed 11 GPs across Sweden about how they concretely experience that management control through guidelines affects their work and what consequences they perceive it has for healthcare. We found that management control through guidelines creates complex challenges for GPs, challenges that could be divided into three distinct fields of tension.

In the first field of tension, there is a tension between the high ambitions that underlie management control through guidelines, and the negative side-effects that these ambitions cause. All GPs expressed a deep-rooted sympathy for the ambitions of using guidelines to ensure quality, improve efficiency, and increase equality among patients. Guidelines were seen as an indispensable support in the complex clinical everyday practice for achieving these objectives. At the same time, the guidelines lead to an increased overall workload, as new guidelines more often add tasks than remove existing ones, including more extensive investigations and treatments for various conditions. The increased workload negatively affects physicians’ ability to make well-considered medical decisions and worsens their working environment. The downside of overly extensive investigations is also that healthy patients undergo medical examinations unnecessarily, healthcare costs increase, and patients who are truly ill have to wait longer for investigation and care. Another aspect that emerged was that guidelines in the form of care agreements that define the responsibilities of each healthcare setting were considered to reduce flexibility and impair collaboration between doctors.

The second field of tension is the tension between the measurable knowledge that guidelines most often emphasize and the unmeasurable knowledge that is considerably more difficult to capture in guidelines. Examples of unmeasurable knowledge that GPs use daily in their encounters with patients include clinical intuition and, by using a holistic perspective, taking the patient’s entire life situation into account in the assessment. Other examples include supporting behavioral changes and fostering patient acceptance to improve their quality of life. Unmeasurable practical knowledge is also needed to manage complex situations where knowledge from guidelines is difficult to apply, such as patients with diffuse symptoms or patients with multimorbidity. An excessive focus on measurable knowledge risks displacing unmeasurable knowledge and hindering its development.

The third field of tension is the tension between the high value that GPs place on their own professional autonomy in relation to the guidelines, and factors encouraging them to relinquish this autonomy even if in the specific situation it may not be in the patient’s best interest. Such factors include the perception that following guidelines is a duty, as well as the expectation that adherence will result in less demanding work and a reduced personal responsibility. The interviews provided examples of how uncritical adherence to guidelines can worsen patient care. At the same time, an important purpose of clinical guidelines is to protect patients from incompetent physicians and bad practice, which was also emphasized in the interviews and highlights the complexity of this field of tension.

In summary, management control through guidelines creates various fields of tension that pose challenges in the daily work of GPs. Since the trend toward more numerous and complex guidelines is natural in a healthcare system that focuses strongly on measurable outcomes, it is important for healthcare decision-makers and guideline developers to acknowledge its potential side effects and to address its ethical dimensions. The normative question of the extent to which GPs should be allowed to exercise their professional autonomy in relation to guidelines is also important to consider.

Written by…

Jens Lundegård, PhD student at the Centre for Research Ethics & Bioethics and specialist in family medicine.

Lundegård, J., Grauman, Å., Juth, N. et al. General practitioners and management control through guidelines: a qualitative study of its effects on their practice. BMC Primary Care (2026). https://doi.org/10.1186/s12875-025-03171-8

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Do physicians have sufficient knowledge about genomic medicine?

DNA chain link. Photo: Warren Umoh, Unsplash.
27 January, 2026 / / 1 Comment

As patients, we are used to providing samples so that the physician can make a diagnosis and prognosis and choose treatment. But it is becoming more common for physicians to also order genomic tests in order to make the diagnosis, prognosis and treatment even more individualized. Even common diseases such as cardiovascular disease, diabetes and depression can become subject to this approach, where information about the patient’s DNA is obtained together with other samples.

As genomic medicine becomes more common, physicians in a variety of specialties need to know more about genetics and genomics. Do physicians who are not specialists in clinical genetics have sufficient knowledge to be able to order relevant tests, interpret test results and talk to patients? How do they prefer to work with genomic medicine? What support do they need and how do they want to learn more? These and other questions were investigated in a survey study aimed at Swedish specialist physicians in, among others, oncology, gynaecology and obstetrics, and general paediatrics; clinical geneticists were excluded.

The study suggests that Swedish physicians want to learn more about genomic medicine, that they are currently learning more, but that the level of knowledge may be low. The physicians in the study expressed a great need for support in matters related to genomic medicine. Although some physicians preferred to refer patients who could be considered for genomic medicine to regional genetics services, a majority preferred to manage the patients themselves, provided that they received good support. What they mainly wanted help with was choosing suitable tests and interpreting test results. The majority of the physicians reported that better knowledge of genomic medicine would change the way they work as physicians. They seemed to prefer to learn more about genomic medicine not through university courses, but through continuous education of various kinds.

In their discussion, the authors (including Joar Björk and Charlotta Ingvoldstad Malmgren) emphasize that physicians’ uncertainty about choosing suitable tests and interpreting test results is probably hampering the mainstreaming of genomic medicine today. Support and training should therefore focus particularly on these tasks. They also note that the physicians mainly requested support of a more technical nature and were less interested in learning more about ethics and communication with patients and families. They may believe that they can rely on their general competence as physicians in these areas, but genomic medicine presents physicians with particularly difficult ethical and communicative challenges, the authors point out. Genetic counselors may therefore have important functions in genomic medicine.

More specific results and the authors’ discussion can be found here: Self-assessed knowledge of genomic medicine among non-genetics physicians – results from a nationwide Swedish survey.

The authors conclude that Swedish physicians have already taken important steps towards making genomic medicine common, but that mainstreaming requires continuous educational efforts, support from regional genetics services and improved guidelines for how to collaborate.

Pär Segerdahl

Written by…

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

Björk, J., Friedman, M., Nisselle, A. et al. Self-assessed knowledge of genomic medicine among non-genetics physicians – results from a nationwide Swedish survey. Journal of Community Genetics 16, 669–677 (2025). https://doi.org/10.1007/s12687-025-00818-y

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We have a clinical perspective

Need for evidence on nursing in childhood cancer care?

20 January, 2026 / / 1 Comment

Caring for children with cancer involves more than just medical cancer treatment. Nurses are responsible for a wide range of nursing tasks. They discuss the disease and treatment with children and parents, monitor children’s nutritional needs, give pain treatment, insert catheters, care for wounds and much more.

These nursing tasks are associated with varying degrees of uncertainty about how they are best performed and there may therefore be a need for more evidence. In a recent study, health care professionals at six childhood cancer centers in Sweden were asked about knowledge gaps that they perceived created uncertainty in their work. What questions does future nursing research need to investigate more closely?

The study identified approximately fifteen aspects of nursing that the staff considered required research efforts. They expressed uncertainty about aspects such as how best to talk to adolescents about fertility and sexuality, the benefits and disadvantages of tube feeding, how best to support children’s and families’ participation in care, or how pain assessment methods can be integrated more efficiently to ensure good pain relief. They also expressed uncertainty about children’s and adolescents’ body image and how it is affected by treatment effects on appearance, and uncertainty about the best diet in connection with cancer treatment.

Identifying areas where more research is needed is important. However, in the discussion of the results, the authors emphasize that evidence for many of the areas identified already exists. Of course, even more evidence may be needed. But it may also be that the research has not been effectively disseminated to nursing practice. The authors therefore emphasize the need to actually implement evidence in the form of guidelines and treatment protocols. They also emphasize that one way to increase awareness of existing evidence is to increase nurses’ involvement in research.

Read the article here: Research gaps in nursing status and interventions – A deductive qualitative analysis of healthcare professionals’ perspectives from Swedish childhood cancer care.

Pär Segerdahl

Written by…

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

Cecilia Bartholdson, Anna Pilström, Pernilla Pergert, Johanna Granhagen Jungner, Maria Olsson, “Research gaps in nursing status and interventions – A deductive qualitative analysis of healthcare professionals’ perspectives from Swedish childhood cancer care,” European Journal of Oncology Nursing, Volume 78, 2025, https://doi.org/10.1016/j.ejon.2025.102972

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When we ourselves contribute to the problem: a retrospective view of resignation syndrome

Child sleeping on bed. Photo by Annie Spratt, Unsplash
13 January, 2026 / / 1 Comment

Humans are good at solving problems. But solutions also cause unforeseen problems. The latter problems can be more difficult to understand because they are so close to us: we do not see how we ourselves create them through our solutions. A person who feels that no one smiles at her may be unaware of how she herself never smiles but observes her surroundings with a demonstratively stern look, as if that could help: “Why should I smile when my so-called fellow human beings never do? They are the problem, not me!” In retrospect, we can more easily see and admit how we ourselves contributed to the problem by our way of solving it. But try to overview similar patterns while being part of them and actively considering everything from your perspective!

So-called resignation syndrome in refugee children, which affected more than 1,000 children during more than two decades, is now history. In a new article, Karl Sallin looks back at the rise and fall of the illness, which manifested itself as loss of physical and mental functions. The children who were affected could neither move nor communicate, but were bedridden and needed tube feeding. The prevailing problem analysis was that the condition was caused by trauma and stress, not least the stress of living under the threat of not getting a residency permit, and that the children’s defeatism took on these physical and mental expressions. In the search for an effective treatment, it was therefore assumed that the children needed security in order to recover: security in the form of closeness to the family and a residence permit. Therefore, the care of the children was handed over to the parents and residence permits began to be used as part of the treatment. The syndrome, which showed no signs of subsiding but, on the contrary, continued to engage and be discussed in the media, however, exhibited a strange pattern. The illness only affected refugee children in Sweden, and moreover children mainly from states in the former Yugoslavia and states in the former Soviet Union. If the problem analysis was correct, then refugee children in countries other than Sweden should also exhibit the symptoms, since they have experienced similar forms of trauma and stress. Nor should refugee children from states in the former Yugoslavia and Soviet Union be overrepresented.

Karl Sallin describes how the treatment of resignation syndrome changed over time. The change was partly related to the syndrome’s nation-bound pattern, partly to the discovery of some cases of child abuse and simulation. Although trauma and stress contributed to the symptoms, it became clearer over time that the syndrome was probably also related to other and more decisive factors. The asylum process was separated from treatment and a child protection focus meant that the child was often separated from the family. This proved effective, and what Karl Sallin calls a culture-bound endemic soon ebbed away.

In retrospect, the pattern of the syndrome can be more easily seen. It becomes clearer how a link between symptoms and residence permit, as well as colorful media stories about the disease, could not only encourage simulation, but also create strong disease expectations in refugee children and their families that actually caused life-threatening conditions. Think of the placebo and nocebo effects, where deep expectations cause recovery or disease. Karl Sallin therefore argues that even if cases of simulation were discovered, refugee children really became life-threateningly ill because of the way resignation syndrome was diagnosed, debated and treated in Sweden. Human expectations are not to be trifled with, but both the treatment of the syndrome and the media stories about it seem to have done so. Is the general pattern familiar?

Karl Sallin suggests that resignation syndrome requires a constructivist perspective on illness in order to be understandable, and that the label, diagnosis and treatment probably caused harm. To avoid similar events in the future, greater awareness is needed of how our ways of labeling, diagnosing, treating and narrating illness can also contribute to illness, he writes. Given medicine’s duty not to harm, such awareness is essential.

The article concludes with the suggestion that it would be reasonable to withdraw the resignation syndrome diagnosis now that it is no longer serves its purposes. Read the article here: Looking back at resignation syndrome: the rise and fall of a culture-bound endemic.

Pär Segerdahl

Written by…

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

Sallin, K. Looking back at resignation syndrome: the rise and fall of a culture-bound endemic. Philosophy Ethics and Humanities in Medicine 20, 41 (2025). https://doi.org/10.1186/s13010-025-00209-8

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When nurses become researchers: ethical challenges in doctoral supervision

Nurse turned PhD student at Seminar, Photo by RU Recovery Ministries on Unsplash
25 November, 2025 / / 2 Comments

Nurses who choose to pursue a doctorate and conduct research in the nursing and health sciences contribute greatly to the development of healthcare: the dissertation projects are often collaborations with healthcare. However, doctoral education in the field contains challenges for both doctoral students and their supervisors. One challenge is that many combine research with part-time work in healthcare. It is difficult to combine two such important and demanding professions, especially if both the doctoral student and the supervisor do so.

To get a clearer picture of the challenges and possible strategies for dealing with them, a systematic literature review of English-language studies of challenges and strategies in nursing doctoral supervision was conducted. The literature review is authored by, among others, Tove Godskesen and Stefan Eriksson, and hopefully it can contribute to improved supervision of nurses who choose to become researchers.

One challenge described in the literature has to do with the transition from a professional life with clear tasks to research that is conducted to a greater extent independently. Doctoral students may be concerned about unclear and difficult-to-reach supervision; at the same time, supervisors may think that doctoral students have their own responsibility to seek support and feedback from them when necessary. Another challenge has already been indicated: supervisors working part-time in healthcare may have difficulty maintaining a consistent meeting schedule with their doctoral students to provide feedback. In addition, difficulties were reported when the proportion of doctoral students is high in relation to the number of potential supervisors. Another challenge has to do with the fact that doctoral students are not always prepared for academic tasks such as writing scientific texts and applying for grants. The doctoral students’ first study can therefore be particularly time-consuming to write and supervise.

Strategies for dealing with these challenges include, among other things, clear agreements from the beginning about what the doctoral student and supervisor can expect from each other. Perhaps in the form of written agreements and checklists. Education of doctoral students for various academic tasks and roles was also mentioned, such as training in grant writing, academic publishing and research methodology. However, supervisors also need education and training to function well in their roles towards their doctoral students. Another strategy reported in the literature was mentoring to initiate doctoral students into an academic environment.

In their discussion, the authors suggest, among other things, that the principles of bioethics (autonomy, beneficence, non-maleficence, justice) can be used as a framework for dealing with ethical challenges when supervising doctoral students in the nursing and health sciences. Ethically well-thought-out supervision is a foundation for successful doctoral education in the field, they write in their conclusion. Read the article here: Ethical Challenges and Strategies in Nursing Doctoral Supervision: A Systematic Mixed-Method Review.

The research seminar does not seem to be mentioned in the literature, I personally note. Regularly participating in a research seminar is an important part of doctoral education and effectively initiates the doctoral student into an academic culture. The seminar enables, not least, feedback from other doctoral students and from senior researchers other than the supervisors. The fact that the group of doctoral students is large can actually be an advantage for the seminar. My experience is that the seminar becomes livelier with a larger proportion of doctoral students, who find it easier to make themselves heard.

Pär Segerdahl

Written by…

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

Godskesen, T., M. Grandahl, A. N. Hagen, and S. Eriksson. 2025. “Ethical Challenges and Strategies in Nursing Doctoral Supervision: A Systematic Mixed-Method Review.” Journal of Advanced Nursing 1–18. https://doi.org/10.1111/jan.70298

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Conditions for studies of medicine safety during breastfeeding

Breastfeeding mother and baby, photo by Monica Turlui
18 November, 2025 / / 0 Comments

Reliable information on medicine safety during breastfeeding is lacking for many medications. In order to avoid the risk of harming the baby, mothers taking medication for various diseases may be advised by their doctor to discontinue the medication during breastfeeding (or the woman herself may choose to discontinue). Alternatively, the woman may be advised to continue the medication but refrain from breastfeeding. Both options are unfortunate. The mother needs the prescribed medication and breastfeeding has benefits for both the baby and the mother.

Why is there a lack of reliable information on medicine safety during breastfeeding? This is because breastfeeding mothers are usually excluded from clinical studies. Therefore, there is limited knowledge of the extent to which different drugs are transferred to the baby via breast milk. The lack of reliable safety information applies to both already approved and new drugs. However, since many mothers take medications while breastfeeding, it should be possible to establish lactation studies that systematically provide scientific evidence for better safety information. Which drugs can be used during breastfeeding?

A new article with Mats G. Hansson as lead author and Erica Sundell as one of the co-authors describes how, within the framework of current regulatory requirements, two breastfeeding studies have been started that can help solve the dilemma that breastfeeding mothers and their doctors often face. One study concerns a drug for diabetes, the other a drug for inflammation and rheumatic disorders. The studies are part of the European project ConcePTION, which will produce evidence on drug safety during pregnancy and breastfeeding. Breast milk samples from the mother and blood samples (plasma) from the mother and child are analyzed to measure how much of the drugs are transferred to the child during breastfeeding. The samples are stored in a biobank for future research, and the studies thus contribute to creating an infrastructure for lactation studies of medicine safety.

Recruitment of research participants and sample collection started in the spring of 2024 and will end at the turn of the year 2025/2026. The purpose of the article is to use the experiences from setting up the two studies as a template for initiating clinical lactation studies. What should be considered? What are the conditions for this type of research? The article concisely describes relevant conditions and procedures for informed consent, sampling, transport and storage of samples, and laboratory analysis. The article also discusses the different conditions for studies of already approved drugs and for new drugs.

The article is important reading for researchers and others who can in one way or another contribute to initiating studies for better information on medicine safety during breastfeeding. Because it so concisely describes the conditions for new studies, the article is also interesting as a concrete example of how problems can be solved by starting new research.

Read the article here: Setting up mother–infant pair lactation studies with biobanking for research according to regulatory requirements.

Pär Segerdahl

Written by…

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

Hansson M, Björkgren I, Svedenkrans J, et al. Setting up mother–infant pair lactation studies with biobanking for research according to regulatory requirements. British Journal of Clinical Pharmacology. 2025; 1-6. https://doi.org/10.1002/bcp.70201

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Can counseling be unphilosophical?

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28 October, 2025 / / 1 Comment

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

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