The Ethics Blog

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

Year: 2026

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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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

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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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We recommend readings

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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