The Ethics Blog

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

Category: In the research debate (Page 1 of 37)

Autonomy consultants in healthcare?

stethoscope
19 May, 2026 / / 1 Comment

Patient autonomy is a fundamental principle in healthcare and medical ethics. Patients have the right to be informed about what it means to undergo a proposed treatment (as well as what it means to refrain from it) and then say yes or no to the treatment. They also have the right to decide for themselves whether they want to be informed about, for example, the risk of future illness.

There is broad agreement on patient autonomy as an ideal, but what does it look like in practice? Are we living up to the ideal? In an article in JME Practical Bioethics, Joar Björk and Anna Hirsch argue that there is a troubling gap between the ideal and its realization in healthcare. The healthcare professionals who have the main responsibility for upholding the ideal often lack both the time and the competence to truly take patients’ autonomy seriously.

Realizing the ideal requires genuine conversations with patients about their preferences for health and care in general and in the current medical situation in particular. Patients are often unclear about what they prefer, so preferences must be given the opportunity to form during the conversation. Conducting such open, exploratory conversations requires both patience and skill. Patients may also be in a condition that prevents them from giving consent, and then relatives must be asked what they can be expected to want. This detective work is not easy, as relatives may be unsure of the patient’s preferences and may have conflicting views. Again, time and skills are required. Another challenge is assessing patients’ decision-making capacity and, if necessary, supporting this capacity. This too takes time and requires expertise.

If healthcare professionals often lack both the time and expertise to take patient autonomy seriously enough in practice, what can we do to better realize the ideal? Joar Björk and Anna Hirsch argue for a new professional role in healthcare: autonomy consultants. They could perform the specific tasks that the realization of the ideal requires. In addition to the tasks indicated above, autonomy consultants could, for example, advise patients on their rights. They could also conduct conversations with patients about how and to what extent they want to be involved in decision-making, or help them draw up so-called living wills in which they express their preferences for future care near the end of life.

Joar Björk and Anna Hirsch emphasize that the purpose behind the proposal for this new professional role is not to relieve healthcare professionals from their obligation to respect patients’ autonomy. On the contrary, they want to draw attention to all the skills and time-consuming tasks that are required to support patients in realizing their right to autonomy within the healthcare system. If we are to bridge the gap between ideal and reality, healthcare professionals may need the support of autonomy consultants, they argue.

One can of course discuss the name of the proposed professional role and how and to what extent the professional group can best assist the healthcare staff. One can also reflect on the plausibility of thinking in terms of a dichotomy between ideal and reality and a professional task of bringing them together. But through their proposal, Joar Björk and Anna Hirsch succeed in raising the issue of further efforts to strengthen patient autonomy in healthcare.

Read the article here: Autonomy ought-is gap and its potential solution: a call for ‘autonomy consultants’ in modern healthcare.

Pär Segerdahl

Written by…

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

Björk J, Hirsch A. Autonomy ought-is gap and its potential solution: a call for ‘autonomy consultants’ in modern healthcare. JME Practical Bioethics. 2026;2:e000117. https://doi.org/10.1136/jmepb-2026-000117

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In dialogue with patients

Health information when knowledge gaps are already filled

Packed storage unit, loads of boxes
12 May, 2026 / / 1 Comment

There is something misleading about the image of knowledge gaps. We imagine the gaps as voids that could easily be filled with knowledge. The challenge is often, on the contrary, to deal with the stubborn beliefs and attitudes that the knowledge gaps are already filled with. If our knowledge gaps were as empty as those of the philosopher Socrates – who never thought that he knew what he did not know – then our knowledge gaps would not be such a challenge.

When I read my colleagues’ studies on risk communication, I am forced to admit that my own knowledge gaps are not empty but overflowing with old beliefs and attitudes. I thought I knew that the risk of breast cancer is not significantly affected by lifestyle factors. Therefore, I thought I knew that women cannot reduce their risk by, for example, exercising more or drinking less alcohol. Now I am beginning to understand that I probably do not know what I thought I knew. But because my knowledge gaps are already filled with these old beliefs – I have no idea how they got there! – knowledge has a hard time getting in. Can it really be true that lifestyle changes can reduce the risk, I ask myself, even though I do not really know a thing about the matter and therefore should not ask myself.

To design effective health information that can help people reduce their own risk of disease, we do not just need to identify knowledge gaps. We also need to identify the content that already fills the gaps and where they get this content from. Interview studies are a source of valuable knowledge here. A study in BMC Public Health, with Åsa Grauman as one of the authors, explores the content of the knowledge gaps about breast cancer. The researchers interviewed 16 Swedish women aged 24–68 about their perceptions of breast cancer, attitudes towards preventive measures, and need for risk information.

Of course, many of the women were well-informed and kept up to date with new research, for example through newsletters from a national cancer society. However, the interviewees’ perceptions of breast cancer were shaped not least by personal stories about acquaintances who had developed the disease, gripping stories in women’s magazines, and televised fundraising events. Campaigns had informed the women that early detection is important, but not that lifestyle factors affect the risk of breast cancer. Their image was that breast cancer is an unpredictable disease that can possibly be influenced by early detection but not significantly by changing lifestyle habits. Specific habits were not linked to breast cancer, and good habits were considered to help against disease in general. Changing certain habits to reduce one’s risk of breast cancer could only be considered if the lifestyle change had a clearly demonstrated effect on the risk of breast cancer.

The women’s assessments of their own risk of breast cancer could be both emotional and logical. A woman who had a relative who died of breast cancer in her 30s felt that her own risk decreased the longer she lived after that age. Even though she did not intellectually believe that the risk decreased with age, she experienced it that way.

Information about lifestyle factors can create new stereotypes and attitudes, women said in the interviews. If alcohol consumption is emphasized as a risk factor, this can blame patients and create beliefs that the patient’s cancer was caused by alcohol consumption. So even when knowledge gaps are filled with accurate information about lifestyle factors, it is important not to overemphasize personal responsibility. Informing about modifiable risk factors without at the same time informing about non-modifiable factors can create new knowledge gaps where breast cancer is perceived as a disease linked to certain lifestyles, it was pointed out in the interviews.

How can knowledge gaps be filled with information that actually helps women reduce their risk of breast cancer? The interviewees emphasized that it is not enough to simply be told that exercise is good and that drinking alcohol is bad. In order to change their habits, the interviewees required detailed scientific evidence. Why does a certain habit increase the risk of breast cancer? What happens in the body and exactly how much does changing the risk factor reduce the risk?

I have only reproduced a small selection of the results from the study here. If you want to know more, you can find the article here: Women’s perceptions of breast cancer risk and prevention: insights into knowledge gaps and lifestyle attitudes.

Finally, if I may return to my personal confession above, I understand that the interviewees required detailed evidence about modifiable risk factors in order to consider changing their habits. Human knowledge gaps are usually filled, only a Socrates keeps them empty. Therefore, we cannot expect new health information to be accepted without resistance – as when an airstream fills a void. The information must communicate sensitively with the beliefs that already fill the knowledge gaps. That is why interview studies are so important.

Pär Segerdahl

Written by…

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

Jonsson, H., Hedström, M. & Grauman, Å. Women’s perceptions of breast cancer risk and prevention: insights into knowledge gaps and lifestyle attitudes. BMC Public Health 26, 1238 (2026). https://doi.org/10.1186/s12889-026-27291-7

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Challenges to academic diversity

Mosaic, photo: Anastasiia Klimova, Unsplash
28 April, 2026 / / 0 Comments

Academic work is conducted in many ways and has many functions and values. Researchers in law and astrophysics, in philosophy and oceanography, work every day with completely different tasks and methods, and the value of their contributions can hardly be compared. At the same time, academic diversity is challenged by another diversity: the many needs to systematically map, review and evaluate academic work. When these two diversities do not meet, when the criteria used for assessments do not reflect academic diversity, this can challenge the conditions for academic work.

A few weeks ago, I blogged about an example of how academic work can be challenged by legitimate and important needs to review research: the Swedish system for ethical review of research. Representatives of the social sciences and humanities have criticized the system for being so focused on medical research that a researcher in the social sciences or humanities who neither conducts drug trials with human subjects nor tests hypotheses may have difficulty filling out the application form. Ethical review creates friction here and there because the system is not fully adapted to the diversity of academic work.

Another challenge to academic diversity is highlighted in an opinion piece by Tove Godskesen in the journal Learned Publishing. The challenge here is that academics themselves may unknowingly risk doing each other injustice when they publish so-called scoping reviews of research areas. Scoping reviews do not aim to assess the quality of the research conducted in the field. They only describe what has been written, which themes have been in focus, and identify knowledge gaps. Scoping reviews can have great value, for example when academics are planning new research. So how can such reviews challenge academic diversity?

Of course, they do not, if they are carried out correctly. The challenge that Tove Godskesen highlights is related to a proposal to use in scoping reviews a tool commonly used to assess the quality of evidence in empirical studies. The motive behind the proposal is to create transparency through a common standard for scoping reviews. The assessment tool also provides a measure of the quality of evidence in empirical studies. All of this sounds good, on the surface.

The problem is that scoping reviews do not aim to rate the quality of evidence in empirical studies. They map very broadly what has been written about different themes: not only in empirical studies but also in theoretical, conceptual and other forms of work. The literature described in scoping reviews is also varied: not only scientific publications can be the subject of scoping reviews, but also reports and policy documents.

Systematically using an evaluation tool that rates empirical evidence when conducting scoping reviews can thus challenge academic diversity and the conditions for academic work. How? A low score for a solid academic work that is not empirical but conceptual can be misunderstood as low academic quality. This can affect how readers, reviewers and editors perceive different disciplines and the value of different academic approaches, Tove Godskesen argues. What looks like systematic quality assessment inadvertently creates hierarchies within academia. Conceptually ill-considered empirical studies can end up higher in the hierarchy than insightful criticism of the central conceptual assumptions of the research area.

Read the opinion piece here: Scoping Reviews Should Describe – Not Score.

Tove Godskesen emphasizes that greater transparency in scoping reviews is important. However, introducing a standard tool that systematically rates empirical evidence risks challenging academic diversity and limiting the value of scoping reviews.

Pär Segerdahl

Written by…

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

Godskesen, T. 2026. “Scoping Reviews Should Describe – Not Score.” Learned Publishing 39, no. 2: e2057. https://doi.org/10.1002/leap.2057

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Losing a family member in an intensive care unit

roses
14 April, 2026 / / 1 Comment

An intensive care unit is a place where life is maintained with the help of advanced medical equipment. But it is also a place where life sometimes ends. In cases where it becomes clear that life-sustaining care is no longer meaningful, but should be changed into end-of-life care, the healthcare staff has a particularly great responsibility to support the patient’s family and make the situation understandable to them.

The physical environment of an intensive care unit can feel cold and alien. The emotional contact with the intensive care nurses therefore becomes all the more important for the family members’ experiences and ability to cope with the situation – both in the unit and afterwards. In a recently published study, 22 family members were interviewed about their experiences of losing a loved one in an intensive care unit in Sweden.

The interviews revealed that family members needed more than just information. Arrival at the unit was characterized by fear, uncertainty and confusion. What they found particularly important was that the healthcare staff understood their emotional state and showed their understanding through compassionate ways of meeting and talking to them. The fact that the staff put chairs around the bed and explained the visit to the patient created a sense of shared humanity.

Although several of the interviewees appreciated that the staff tried to inform them about the patient’s condition, they had difficulty understanding the meaning of what was said. The medical information did not meet their emotional needs. Sometimes the information could not be absorbed at all, or they got fixated on some medical detail in the information. The most difficult thing to understand was, of course, that the relative was now very close to death and might not even survive the night. While some had difficulty giving up hope, others could perceive any attempts to give hope as clearly empty. What the family members mainly emphasized as important was how the nurses’ compassion and emotional support helped them understand the reality of the loss. Understanding life and death cannot be equated with being informed.

One thing that particularly worried family members was whether the loved one suffered in their final moments of life. Even though they knew that the nurses had given pain relief and sedatives, they were concerned (both before and after the patient’s death) whether the doses had been high enough to completely relieve pain, fear and anxiety. Some had also (perhaps much earlier) promised their loved ones to ensure that their death would be peaceful, which could reinforce fear and give rise to feelings of guilt. Others, who felt that the staff had done everything that could be done for the patient, could still worry about invisible forms of anxiety that the sedatives did not fully relieve. Or worry that the medication itself could cause nightmares. Addressing family members’ concerns about their loved one’s suffering requires more than just information: emotionally clear communication rooted in understanding their concerns.

Finally, the interviews highlighted the importance of being able to say goodbye to the loved one, whether it took place before, after, or at the moment of death. Again, the healthcare staff played an important role in enabling a farewell that the relatives felt was in line with their relationship. Regardless of whether the farewell is improvised or ritual, a meaningful farewell can have long-term significance for the grieving process.

Read the article here: Losing a close person to death in ICU: A thematic analysis of bereaved family members’ experiences of end-of-life care.

The authors emphasize four things to consider in particular to further improve a family-centered approach in an intensive care unit. First, family members need to feel seen and heard in a situation of emotional chaos. Second, they need to understand the implications of withdrawing treatment. Third, they need to trust that their loved one is not suffering, or did not need to suffer. Finally, family members need the opportunity for a meaningful farewell.

All of this requires that intensive care nurses can prioritize support for family members.

Pär Segerdahl

Written by…

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

Lena Palmryd, Anette Alvariza, Åsa Rejnö, Tove Godskesen, Losing a close person to death in ICU: A thematic analysis of bereaved family members’ experiences of end-of-life care, Intensive and Critical Care Nursing, Vol. 94, 2026, https://doi.org/10.1016/j.iccn.2026.104359

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When youth participation becomes symbolic: voices and influence in global health governance

world map
7 April, 2026 / / 1 Comment

Global health discussions have, in recent years, made a point of involving young people. Conferences feature youth panels, international organisations hold youth consultations, and most major health strategies now list youth engagement as a priority. All in all, it seems only fair, given that the challenges being debated today (for instance, pandemic preparedness and management, antimicrobial resistance, and climate change) will shape the lives of younger generations for decades. Yes, they should have some say in how those problems are addressed. But what kind of say, exactly?

Being invited to a conference is not the same as influencing what gets discussed or decided there. Young participants can be present at consultations and advisory boards, while the structures where policy is actually made remain largely unchanged. Youth involvement signals openness without necessarily altering how priorities are set or resources distributed. Participation, in other words, can be real without being meaningful.

This difference between symbolic and meaningful participation matters most in fields with long time horizons. Antimicrobial resistance (AMR) is a good example. Because its consequences will unfold over decades, younger generations are routinely described as key stakeholders in the global response. International efforts to address AMR, including the Quadripartite collaboration between WHO, FAO, UNEP and WOAH, increasingly emphasise the importance of engaging a broad range of societal actors, including young people. A 2025 commentary in Nature Communications described young people as potential “change-makers” in AMR efforts, and a study in PLOS Global Public Health the same year argued that youth, particularly in regions heavily affected by infectious diseases, remain underrepresented in decision-making despite their potential contributions. These discussions reflect a broader body of literature that is emerging and examines how youth participation is incorporated into global health governance.

And yet, as a study I recently co-authored shows, being named a stakeholder and being given real influence are quite different things. In our study, Beyond symbolic participation: youth-led organisations’ voices and actions against antimicrobial resistance in Africa south of the Sahara, conducted in collaboration with the Roll Back Antimicrobial Resistance (RBA) Initiative, we examined how youth organisations across sub-Saharan Africa engage with AMR through awareness campaigns, community education, and advocacy. We found that these organisations are far from passive. Many are doing creative, committed work under significant resource constraints – yet the very organisations expected to mobilise communities against antimicrobial resistance often lack stable funding, institutional recognition, or access to the policy spaces where decisions are made.

A pattern emerges. Youth organisations are frequently invited to meetings and international events related to AMR, but this involvement rarely translates into meaningful influence over decisions. Participation often serves as a signal of inclusiveness rather than a mechanism for change. The term for this is tokenism: when representation serves mainly to legitimise a process rather than to reshape it. This is not just a practical problem; it is an ethical one. If younger generations are expected to live with the long-term consequences of today’s health policies, participation that remains purely symbolic is difficult to justify.

That said, influence is not only exercised through formal seats at decision-making tables. Youth-led organisations often operate entirely outside traditional governance structures, shaping debates through grassroots mobilisation and public engagement in ways that institutional frameworks often fail to capture. These contributions matter, even when they are harder to measure.

The question facing global health governance today is not really whether young people should be involved (that case has already been made). It is how their involvement should be structured so that it amounts to something. In a field like antimicrobial resistance, where the decisions being made now will have consequences for generations, ensuring that participation is meaningful rather than symbolic is a matter of intergenerational justice.

Mirko Ancillotti is associate professor of bioethics at the Centre for Research Ethics & Bioethics.

Samwel, E. V., Biasiotto, R., Mosha, M., & Ancillotti, M. (2025). Beyond symbolic participation: youth-led organisations’ voices and actions against antimicrobial resistance in Africa South of the Sahara. Global Health Action, 18(1). https://doi.org/10.1080/16549716.2025.2601409

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Approaching future issues

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

3 March, 2026 / / 1 Comment

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

This post in Swedish

We have a clinical perspective

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

This post in Swedish

We have a clinical perspective

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