Year: 2026 (Page 1 of 3)

Can new findings create an obligation to deviate from guidelines on antibiotic use?

20 October, 2026 / Pär Segerdahl / 1 Comment

It has previously been emphasized that courses of antibiotics must not be cut short, as this risks the survival of the most resistant bacteria. The prevailing view was that shortened courses contribute to increased antibiotic resistance – one of the greatest threats to global health today.

More recently, however, increasing importance has been placed on reducing unnecessary exposure to antibiotics through shorter courses. The current view is that prolonged use of antibiotics can favor resistant bacteria, including bacteria that do not cause the infection. Shorter treatment periods can therefore, in some cases, reduce this risk. Furthermore, shorter courses are considered to offer benefits beyond reduced resistance, such as fewer side effects and better preservation of the body’s natural bacterial flora.

A commentary in The American Journal of Bioethics addresses an interesting question raised by this new focus on shorter antibiotic courses. Three researchers from Uppsala University, including Mirko Ancillotti, discuss a proposal published in the same issue of the journal. The proposal has two parts. The first part is that physicians should generally avoid prescribing courses longer than guidelines recommend. The second part of the proposal is that if clinical studies show that a guideline recommends an unnecessarily long course – a shorter course is effective – then these new findings create a moral obligation for physicians to deviate from the guideline by prescribing a shorter treatment than recommended.

Mirko Ancillotti and his co-authors agree with the first part of the proposal: physicians should generally avoid prescribing courses longer than recommended by the guidelines. However, they view the second part of the proposal as less clear. When can new findings create a moral obligation to prescribe shorter courses of treatment than the guidelines recommend? It is difficult to isolate the effect of treatment duration in clinical studies where multiple factors vary, so the evidence is not always as strong as it might appear. Moreover, a shorter course – even if studies suggest it is effective – could still entail an increased risk of relapse at a later stage. Above all, the assessments physicians must make are more complex than simply evaluating the strength of the evidence. The physician must assess the relevance of the evidence to the specific treatment situation, and the risk of increased antibiotic resistance must be weighed against the risks that a shorter treatment might pose to the individual patient in the clinical context. Such assessments may well make it reasonable for a physician to choose to deviate from the guidelines. But can the evidence create an obligation to choose a shorter antibiotic course? Can it make it morally wrong to follow the guidelines?

Towards the end of the commentary, the authors propose a criterion for when a shorter course is not merely a reasonable option but a moral obligation. Their criterion is complex and encompasses more than just the strength of the evidence. The evidence must isolate the effect of treatment duration and be applicable to the clinical situation at hand. However, evidence alone cannot create a moral obligation, no matter how strong it is. A convincing argument is also required to demonstrate that the benefits of reduced antibiotic exposure in the specific case outweigh the remaining uncertainties regarding recovery and relapse. Slightly simplified, the authors argue that prescribing below the guideline becomes a moral obligation when following the guideline is no longer professionally defensible for the physician.

The authors indicate that it would be unfortunate if the previous generalization – “longer treatment duration is better” – were simply replaced by the opposite generalization: “shorter is better.” Their commentary points to the need for a more nuanced approach to antibiotic resistance. Read the commentary here: When Does Evidence Create a Moral Obligation to Depart from Antibiotic Guidelines?

Written by…

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

Ancillotti, M., Andersson, D. I., & Sandegren, L. (2026). When Does Evidence Create a Moral Obligation to Depart from Antibiotic Guidelines? The American Journal of Bioethics, 26(9), 109–111. https://doi.org/10.1080/15265161.2026.2709544

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Ethical and legal reflections on ex-vivo human brain research

13 October, 2026 / Árpád Karalyos / 0 Comments

When researchers at Yale University announced a few years ago that they had successfully restored circulation and certain cellular functions in pig brains hours after death, the tabloid press immediately seized on the story. The papers created a sensationalist narrative around the discovery, with headlines such as: “Scientists breathe life into dead pigs in bizarre Frankenstein experiment.” I recently had the opportunity to attend a medical law conference and listen to a lecture by Stephen R. Latham, Director of the Interdisciplinary Center for Bioethics at Yale University, on how science has progressed from those initial pig experiments to human ex-vivo brain research. This technological leap raises bioethical and legal questions that go far beyond the simplistic visions of the popular media.

The perfusion system developed by Yale researchers represents a paradigm shift in neuroscience. During the procedure, oxygen, glucose, and infection-controlling antibiotics are delivered to post-mortem brains (9-15, and occasionally 17 hours after death). Oxygen transport is facilitated using a molecule derived from Canadian earthworms. This perfusion can reverse ischemic damage, restoring cellular and metabolic functions, while the blood-brain barrier remains intact and observable throughout. An important technical detail is that while the energy provided by the perfusion fluid (perfusate) is sufficient to restart cellular metabolism, it is not enough to cause the neurons to fire. As a “belts and suspenders” measure, the system also circulates propofol, a strong anesthetic, which inherently prevents neuronal activity. This model is of inestimable value in translational medicine, particularly in Alzheimer’s and Parkinson’s disease research. Unlike animal experiments or artificially grown organoids, this model uses actual human brains, typically 60-80 years old, which occasionally exhibit pathological changes. As a result, the off-target effects of potential therapies can be observed immediately and accurately, eliminating biases stemming from the incompatibility of animal models.

The deepest bioethical dilemma centers around the potential reawakening of consciousness in the ex-vivo brain. To ensure thar this does not happen, researchers monitor the perfused human brains using EEG (initially all of them, now through representative sampling), and the measurements prove that no organized electrical activity is present in the cerebral cortex. Since contemporary theories suggest that consciousness cannot exist without electrical activity, we know that the donor’s brain does not “wake up” and does not undergo subjective experiences. The current ethical consensus implies a short-term ban on research that would permit the return of any form of consciousness in human brains. The reason for this is rational and irrefutable: it is impossible to obtain valid informed consent from a donor, as one cannot predict what subjective experiences a disembodied, perfused brain would undergo. However, this ban paves the way for valuable clinical research of the kind discussed above, in which consciousness does not arise.

The technology also challenges the very definition of death. Under US law, death is defined as the complete and irreversible cessation of cardiopulmonary or whole-brain functions. Ex-vivo perfusion and modern resuscitation techniques show that biological “irreversibility” is relative, because science can now restore circulation and certain cellular functions after death. For example, during some transplant procedures, doctors restart a deceased patient’s heart to keep organs fresh, while deliberately blocking blood flow to the head. Because of this, a growing number of people in bioethics are questioning the traditional “dead-donor rule,” considering the harvesting of organs from patients who technically do not meet the legal definition of death but will never regain consciousness and have expressed a desire to donate. An alternative approach would be to view irreversibility not merely as a biological reality, but as a matter of choice. If the patient (or their family) previously directed that they do not want their vital functions or brain metabolism restored, then the condition becomes irreversible by virtue of the patient’s will – and this marks the actual boundary of death.

One of the most sensitive aspects of the research is the ethical procurement of brains from donors. Currently, donors are individuals who registered as organ donors during their lifetimes, but whose organs were deemed ineligible for transplantation at the time of death (e.g., due to disease). Families authorize the removal and use of the whole brain for perfusion research through Organ Procurement Organizations. However, the future, more transparent approach is to obtain advance informed consent directly from the donors while they are still alive, in accordance with an Institutional Review Board (IRB) approved protocol.

There is practically a complete legal vacuum in this area. Although certain standards regulate tissue donors’ consent or data management, there is very little specific law governing preclinical research on human tissue. Paradoxically, it is the researchers themselves who are most actively soliciting regulation. A clear framework would reduce the risk of legal liability, reassure investors, and, most importantly, maintain public trust. While formal legislation is delayed, professional groups must proactively step up by developing self-regulatory standards and ethical codes (so-called soft law) that they can present as authoritative to funders and research partners.

I am grateful to Professor Stephen R. Latham for the interesting and thought-provoking conversation at the conference. One of the things I learned was that technological development has once again outpaced legislation, and that interdisciplinary dialogue is essential to ensure that science does not cross the ethical boundaries that protect human dignity.

Written by…

Árpád Karalyos, visiting scholar at the Centre for Research Ethics & Bioethics and fifth-year law student at the Pázmány Péter Catholic University in Budapest, Hungary.

Facts and figures lead the way: addressing gender (in)equality in academia

6 October, 2026 / josepinefernow / 1 Comment

According to EIGE’s gender equality index 2025, it will take more than 50 years to reach full equality in the European Union at the current pace of change. The research sector is included in this data and Elsevier’s report on gender and diversity in research sends a clear message: gender inequality in academia is a fact; not a feeling. If we want to address inequalities, pay gaps, uneven gender distribution in leadership positions and decision-making, actions need to rest on facts and figures.

One way to design and structure action is through gender equality plans, also known as “GEPs”. The Horizon 2020 MINDtheGEPs project collected qualitative and quantitative data from 7 different research organisations in Italy, Poland, Serbia, Spain and Ireland, and designed actions that have been formalized and sustained through such GEPs, which are now a formal requirement for receiving Horizon funding.

The efforts resulted in a book – Gender (in)equality in research and science – that offers a comparative analysis of gender inequalities in science and research across different organisational and European national contexts, based on this data. Together, the authors examine how organisational cultures and policies affect equality, and explore the logics that shape gendered careers, lived experiences and the way we do science. Inequality in the workplace is not just about advancing careers. There are organisational and professional structures, some specific to academia, encompassing cultures and traditions that can both help and hinder career development. Women are underrepresented in decision-making processes in research performing organisations.

Despite an increasing number of women entering research careers and earning PhD degrees, few of them end up in leadership roles or as full professors. MINDtheGEPs designed actions aiming to deconstruct the gendered bias that men make better leaders, and has worked to introduce gender equality targets in decision-making. Training initiatives have been designed to target these challenges, develop skills development and change organisational culture.

The book puts emphasis on data that in turn can drive the development of policy. It is divided into three parts. The first paints a quantitative portrait of the macro and meso contexts, and gendered policy perceptions in research organisations in Italy, Poland, Ireland, Spain and Serbia. The second part is based on qualitative data, focusing on the context where research careers are built. The book addresses the lived lived experiences of precarity, glass ceilings, the balance between work and raising a family, and how excellence is defined and experienced. The third part contextualises critical issues and trajectories, covering the experience of being a researcher, mentoring, and provides a proposal for gendering science and changing the system. This is where you can find my contribution – a chapter focusing on good practice for developing gender equality plans – which is written together with Claudia Colonnello and Federico Luigi Marta from the Rome-based social research institute Knowledge and Innovation (K&I), and Federica Turco from the Univeriity of Turin. The book is edited by MINDtheGEPs coordinator Cristina Solera and Manuela Naldini from the University of Turin’s Research Centre for Women’s and Gender Studies (Cirsde). They provide an introduction to how gender (in)equality can be studied in scientific and research contexts.

There is another important reason to strive for gender equality in science and research: it leads to better science. Research teams with a mix of genders produce more novel and higher-impact scientific ideas. Through a train-the-trainers approach, MINDtheGEPs has educated colleagues on how to view research results through a gender lens, understanding how gender can have an influence on individuals, society, and science. By embedding gender analysis in research (and publication), we can mitigate at least some aspects of bias and discrimination. In short, incorporating different perspectives can enrich scientific inquiry.

Want to read more? Here is a link to the MINDtheGEPs book: Gender (in)equality in research and science.

Written by…

Josepine Fernow, science communicator and coordinator of the Centre for Research Ethics & Bioethics, develops impact strategy for European research projects.

Solera, C., & Naldini, M. (Eds.). (2026). Gender (in)equality in research and science. Edward Elgar Publishing. DOI: 10.4337/9781035345717

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Health data infrastructures require more continuous governance

29 September, 2026 / Pär Segerdahl / 1 Comment

Health data holds great value for research and development, even long after it was originally collected. It can shed light on questions beyond those that initially motivated the collection. Therefore, data infrastructures are being established to store health data for long periods of time. Biobanks and registries keep samples and data available for researchers who apply to use them to investigate new questions. This long-term sharing of research participants’ health data places high demands on data security and oversight. Researchers applying for data access undergo rigorous review and must sign detailed agreements.

But what can happen to participants’ health data after a biobank or registry approves the researchers’ application and transfers the data to them? In the spring of 2026, it was discovered that health data from UK Biobank was being offered for sale on overseas commercial online platforms. The participants’ data had already been de-identified, and the sales offer was immediately removed from the platforms once discovered. While it is unlikely that anyone was harmed by the incident, it highlights a vulnerability in the system.

In an article, Yusuke Inoue (formerly a visiting researcher at CRB) and Jennifer Viberg Johansson discuss this incident as an illustration of the need for more long-term responsibility regarding participants’ health data. Carefully reviewing the researchers’ application prior to granting data access is not enough. The authors argue that responsibility for participants’ health data should encompass the data’s entire lifecycle: before, during, and after access.

Yusuke Inoue and Jennifer Viberg Johansson call this continuous governance of health data infrastructures – but what does that entail? It implies, among other things, that the committees deciding on data access have a responsibility that extends beyond the initial decision. There must be mechanisms to continuously ensure that data accessed by researchers is handled correctly throughout the period of use, and to intervene if problematic handling of the data is detected. The authors argue that these mechanisms should be proportionate to the risks involved, to ensure that continuous governance does not unnecessarily impede responsible research or routine, low-risk data usage.

Shared health-related data may cross numerous boundaries during its lifecycle and may also be utilized by commercial entities. Continuous governance therefore entails responsibility for how data is shared following the decision on access, and how it is handled by parties other than the institution originally granted access. The authors emphasize that commercial use of health data is not inherently problematic; on the contrary, it is a prerequisite for translating medical research into innovations that benefit patients. Yet, continuous governance involves a responsibility to ensure that unauthorized onward transfer of data does not occur and that data is used in accordance with the conditions and purposes expected by both participants and society at large.

Health data infrastructures are not merely technical systems, the authors write. They are public institutions that cease to function if people lose trust in them and are no longer willing to contribute their data. A crucial aspect of continuous governance is, therefore, ongoing public communication regarding how participants’ health data is transferred and used after access has been granted, as well as the risks that may arise at later stages of the health data lifecycle. It is also important to act quickly and openly when problematic data usage is discovered – which is precisely what was done when it was discovered that health data from UK Biobank was being offered for sale.

The aim of Yusuke Inoue and Jennifer Viberg Johansson’s proposal for continuous governance is not to make sharing health data more difficult, but to make it easier to do the right thing, ensuring that incidents like the one involving UK Biobank do not happen again.

Read their arguments for continuous governance here: Ethics of Health Data Infrastructures: Toward Continuous Governance and Public Trust.

Written by…

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

Inoue Y, Viberg Johansson J. Ethics of Health Data Infrastructures: Toward Continuous Governance and Public Trust. Journal of Medical Internet Research, 2026, doi: 10.2196/104402

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Approaching future issues

The demand for knowledge and the love of wisdom

15 September, 2026 / Pär Segerdahl / 0 Comments

When we talk about norms, we often overlook a higher norm in human interaction. I am thinking of the norm of having knowledge, the demand to know. Why do I say that knowledge is a higher norm? Because norms presuppose our knowledge of them. If we did not know which norms apply, they would lie by the wayside. They would lie in the ditch, and the wrong norms would guide us along the way. Being a good parent, for example, presupposes that we are acquainted with the norms of good parenting and understand what they require of us. We seem to live under this higher demand for knowledge of applicable norms. How ashamed we feel when we are ignorant of what applies and everyone else seems to know.

If the norm of knowledge permeates human interaction, it can also characterize our unconscious role play in the various situations of life. We do not notice how our gestures, tone of voice and behavior are often involuntarily governed by the superior demand to know what applies. The higher demand for knowledge, which should keep us on the right track, can paradoxically lead us into the labyrinths of lies. The fear and shame of not knowing is so intolerable that we instinctively flee from our ignorance by presenting a confident façade. Not least before ourselves. We imagine that we know what we do not know, and mere assumptions become firm convictions. The demand for knowledge thus gives rise to its opposite, it creates shadow worlds that we take for reality.

Philosophy is usually explained as the love of wisdom. Perhaps one could say that this love, ever since the days of Plato, has expressed itself in the fact that philosophers have always taken the norm of knowledge particularly seriously. In this post, I want to point out how this seriousness invites two possible philosophical tasks, which complement each other. An obvious task, which directly corresponds to the norm, is of course to critically examine how we live up to the norm of knowledge. False and unfounded claims to knowledge are identified and replaced by more well-considered ones. This philosophical task also includes developing a systematic knowledge-seeking approach that more rigorously takes us closer to the norm.

This philosophical task is not simple, however, because it is unclear how the norm of knowledge should be interpreted. What is knowledge? What does it mean to have knowledge about plant and animal life or about statesmanship and society? What does it mean to have knowledge about right and wrong or about beauty and ugliness? Ever since the days of Plato, philosophers have disagreed about what it means to live up to the norm of knowledge, and they have discussed which knowledge-seeking approach best ensures that we approach the norm rather than move away from it. Philosophical schools have criticized each other as ignorant of what knowledge is, and thus ignorant of how best to seek knowledge. So, while philosophers do indeed often identify false claims and provide good reasons for more well-considered positions, philosophy hardly functions as a higher court that authoritatively sorts out human disagreements about true and false, right and wrong. It often exhibits the same kind of human disagreements that it feels a responsibility to sort out in a systematic way. Philosophers have sometimes experienced their recurring disagreements as something of a scandal in philosophy and as a crisis for all of humanity. How is knowledge possible if even philosophy fails to live up to the superior norm that it takes so seriously?

But as I said, the norm of knowledge also invites another possible philosophical task, which complements the former. The second task is to confront the dark side of the norm of knowledge by examining how the demand for knowledge also generates shadow worlds. For like all norms, the higher norm of knowledge tends to generate its opposite. The expectation placed on us to know what applies triggers an increasingly rapid reflex to hide our uncertainty behind a confident façade. This unnoticed reflex becomes an unconscious habit. It feels so uncomfortable to stand there with empty knowledge gaps, that we routinely fill the gaps with perceptions about all sorts of things that we do not really know much about. The theme has been touched on in a previous post: Health information when knowledge gaps are already filled. The post was about the difficulty of reaching out with new health information when our knowledge gaps are paradoxically not empty but filled with perceptions that oppose the information.

The second task of philosophy – to draw attention to the dark side of the norm of knowledge – means that we open ourselves to our own uncertainty. We do not give in to the flight response that the knowledge norm activates when we feel the discomfort of uncertainty. We do not hide behind a façade but admit honestly and humbly: I don’t know. Instead of giving the appearance that we live up to the norm, we find ourselves at the absolute zero point of knowledge claims. Only from this lowest point can we freely examine how the higher norm generates shadow worlds in our ways of thinking, speaking, and living. This task is not easy either. Anyone who lives in a shadow world is unaware of the fact that it is only a shadow world, since the shadows have become the archetype of reality. The philosophical task of elucidating how these shadows arise and are assigned the lead role as the archetype of reality thus requires a certain freedom from the norm of knowledge. Merely tightening the requirements of the norm provides dubious protection against our resistance to facts, since the norm itself tends to generate the shadow pictures that it was intended to exclude. Therefore, the humbler task of philosophy is to illuminate how the knowledge norm generates shadow worlds within us.

In conclusion, I would like to say that philosophy – the love of wisdom – has two complementary tasks. If we do not pay attention to the dark side of the norm of knowledge, there is a risk that the emphasis on the bright side will lure us back into the shadows. The love of wisdom is greater than the demand for knowledge. Without condemning or shaming, the love of wisdom illuminates the dark side of the norm of knowledge – so that we can finally say, with Socrates: “when I don’t know things, I don’t think that I do either.”

Written by…

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

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Thinking about thinking

AI systems are only as good as the procurements that select them

1 September, 2026 / jennifervibergjohansson / 1 Comment

Just over two years ago, I experienced what a healthcare procurement process can mean in practice. At the time, I was working for a company in the field of orthotics and prosthetics, and when the procurement contract was lost, the conditions for our business changed from one day to the next. The experience led me to a realization: procurement is not only about law, processes, and economics. It also determines which products, which services, and ultimately which care patients gain access to.

Public procurement serves an important function. It should be legally secure, transparent, and give all suppliers the opportunity to compete on equal terms. However, if too much emphasis is placed on price alone, there is a risk that other values will be overshadowed. In healthcare, this can have consequences for the quality of the tools used in patient care. Procurement needs to balance different values against one another, including values that are not always easy to measure.

This was one of the starting points for a recent article that my research colleague Santa Slokenberga and I published. In the article, we examine how European legislation can contribute to more balanced healthcare procurements, procurements that do not risk overemphasising certain values, such as price, at the expense of other important considerations, such as quality and safety. The article focuses on the procurement of AI systems, but many of our conclusions are more broadly applicable.

We explore the interaction between three key European legal frameworks: the Artificial Intelligence Act (AIA), the Medical Device Regulation (MDR), and the Public Procurement Directive (PPD). Using Donabedian’s model of healthcare quality, we analyse how these legal frameworks contribute to quality in terms of healthcare structures, processes, and outcomes.

Our conclusion regarding AI systems is that the AIA and MDR contain important requirements related to areas such as safety, transparency, documentation, risk management, and post-market monitoring. However, legislation alone is not enough to ensure that AI actually contributes to better care for patients. These requirements only acquire real significance when they are translated into practice, and procurement can play an important role in this respect. We argue that procurement processes which take the requirements of the AIA and MDR into account can create favourable conditions for high-quality healthcare. Through procurement, healthcare providers can set requirements that go beyond CE marking and formal regulatory compliance. This may include requesting evidence of clinical benefit, requirements concerning diagnostic accuracy, follow-up of patient outcomes, transparency about how systems have been developed, and how they perform in the environment in which they are intended to be used. In other words, procurement that takes these two regulations into account can serve as a tool for translating legal requirements into actual quality of care.

An important message of the article is that procurement processes cannot be isolated from clinical reality. Procurement professionals need support from clinicians, patients, technical experts, and other relevant stakeholders to formulate meaningful quality requirements. If healthcare is to benefit from AI, those who meet patients must be involved in defining what quality actually means. AI should be implemented not simply because there are political, clinical, or public expectations that everything will improve with AI, but only when the procured AI system genuinely addresses clearly identified needs in accordance with relevant requirements.

Technology is developing rapidly and offers significant opportunities. But technology should not set the agenda. It is we, as humans, who must define the framework, establish the requirements, and determine which solutions deserve a place in healthcare. Only then can AI become a tool that strengthens, rather than steers, the future of healthcare.

If you would like to read more, you can find our article here: A Pathway from Law to Care: How the Artificial Intelligence Act, the Medical Device Regulation, and the Public Procurement Directive Can Contribute to Ensuring Quality in Healthcare.

Many of our conclusions regarding the procurement of AI systems can be generalised. Procurement that takes seriously the task of balancing different values against one another, in accordance with relevant legal requirements, can provide a concrete pathway to both cost-effective and high-quality healthcare.

Written by…

Jennifer Viberg Johansson, who is an Associate Professor in Medical Ethics at the Centre for Research Ethics & Bioethics.

Viberg Johansson, J., Slokenberga, S. A Pathway from Law to Care: How the Artificial Intelligence Act, the Medical Device Regulation, and the Public Procurement Directive Can Contribute to Ensuring Quality in Healthcare. Health Care Analysis (2026). https://doi.org/10.1007/s10728-026-00588-9

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Approaching future issues

Artificial consciousness – a look behind the hopeful facade

16 June, 2026 / Pär Segerdahl / 3 Comments

During the 20th century, it was often considered scientifically suspect to talk about consciousness or to use psychological concepts that were not defined in terms of observable behavior. For even longer periods, consciousness, or the soul, was attributed only to some humans who in turn guarded the concept very carefully so that it did not risk being transferred to “others” (at least not fully). Against this background, it is surprising to note how the possibility of conscious machines has suddenly begun to be considered an important scientific question. In some cases, artificial consciousness is even treated as a strategic goal to be realized through new research efforts. Where does this sudden hopefulness about conscious AI come from, when consciousness was previously surrounded by strict skepticism and border control?

In an article, Kathinka Evers takes us behind the hopeful facade. Where does this unexpected optimism come from? Have we become more open-minded lately? Perhaps partly, answers Kathinka Evers, but the optimism about machine consciousness may also be a new form of human self-aggrandizement. How so? If we humans (or some human group) could produce artificial consciousness, we (or that group) would resemble the creator god that humans have long believed made them in his image. We (or that group) would take over the top position that humans have submitted to for millennia.

The hopefulness probably also reflects notions that machine consciousness could give artificial systems even more powerful capabilities that humanity could benefit from, writes Kathinka Evers. Conscious AI could make complex decisions that consciously consider human values and moral norms. It could protect us better than we can protect ourselves. That certainly sounds hopeful. But given that we are already programming drones and missiles to harm and kill people – in accordance with human values and norms – we should probably examine ourselves more carefully before we place too much faith in our machine images. Could they possibly create even greater threats rather than protect us from them?

Humans are contradictory. We are as compassionate as we are insensitive. Our sympathies for each other are selective and have made human groups in most cultures and historical periods violent and destructive towards other ethnic groups, towards women, towards the poor, towards other species, writes Kathinka Evers. The border surveillance of the concept of consciousness (or the soul) to ensure exclusivity is just one of many examples of this tendency to unite by distinguishing. Human values and norms separate us from each other as much as they connect us. Wouldn’t artificial consciousness, created in our image, also multiply our human conflicts? Should we rather hope that conscious AI – if it were possible – is not aligned with human values and moral norms?

If you want to travel further behind the hopeful facade, read the article here: Artificial Consciousness: Science Fiction, Utopia, or Pandora’s Box? Kathinka Evers also discusses whether artificial consciousness can be considered a possibility, how such consciousness could be detected, and what research into artificial consciousness can actually teach us. Perhaps it is rather that through such research we would learn more about ourselves and return from the detour much wiser?

Written by…

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

Evers, K. (2026). Artificial Consciousness: Science Fiction, Utopia, or Pandora’s Box? In Proceedings of the Paris Institute for Advanced Study (Vol. 27). https://doi.org/10.5281/zenodo.20267984

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We like challenging questions

The importance of children’s assent to research

2 June, 2026 / Pär Segerdahl / 1 Comment

In the field of childhood cancer, care and research are closely linked. Children treated for cancer are often involved as participants in studies that can contribute to better future cancer care. It is the parents who are asked to give their consent to the child’s participation in research, but the child’s assent is also a requirement. Despite this, children are not always involved in decisions regarding their research participation, often out of concern for the children.

An article in Nursing Ethics with Kajsa Norberg Wieslander as lead author argues insightfully for the importance of genuinely asking for children’s assent to research, and for the importance of continuously involving children in decisions regarding their research participation. The starting point is a multidimensional concept of autonomy as not only a right to be respected. Especially when it comes to school-age children (7–14 years), autonomy should also be understood as a value to be supported and developed. This further means that children’s assent and decision-making is understood as a relational activity. Through dialogue, through explanations at the child’s level, and through sensitivity to the child’s emotional needs, the child is supported to make their own decisions that might not otherwise have been possible.

Kajsa Norberg Wieslander further emphasizes trust as a prerequisite for relational autonomy. Trust is at the same time a result of the child being allowed to participate in decisions about their own participation in research. Trust is also described in the article as an ethical challenge. If parents trust that the care team will always act in the child’s best interests and therefore hand over decisions about the child’s research participation to the healthcare professionals/researchers, this can lead to the child feeling overrun and unable to influence their situation, which damages the child’s trust.

The article emphasizes that children’s assent is important to avoid children being treated as means and not as ends in themselves, as persons. Children’s assent to research counteracts their being instrumentalized. Children’s assent must therefore not be treated as a mere formality. Such an attitude towards their assent could recreate the risk of them being treated as means and not as persons with their own abilities, perspectives and ambitions.

The article concludes with a discussion of paternalism – such as excluding children from decision-making in the child’s best interest or making decisions that go against what the child has said they prefer. Paternalism towards children may be justified in some situations, but if autonomy is understood as a value and as a relational activity, then there are strong ethical reasons to support children’s autonomy in this multidimensional sense by including them in decision-making and respecting what they say. Especially when it comes to research participation. Since the benefits to the child of participating in research are uncertain, paternalism is particularly questionable here and if the child objects to participation in research, this must be respected, emphasizes Kajsa Norberg Wieslander.

You can find the clear and concise article here: Why children’s research assent matters: Exploring three dimensions of autonomy.

If you want to read the entire dissertation in which the article is included, you can find it here: Toward best ethical practices for including children in childhood cancer research.

Written by…

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

Norberg Wieslander K, Godskesen T, Höglund AT, Frygner-Holm S, Juth N. Why children’s research assent matters: Exploring three dimensions of autonomy. Nursing Ethics. 2026;0(0). doi:10.1177/09697330261424347

Norberg Wieslander, K. 2026. Toward best ethical practices for including children in childhood cancer research. Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine 2222. 79 pp. Uppsala: Acta Universitatis Upsaliensis. ISBN 978-91-513-2701-3

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We recommend readings

Autonomy consultants in healthcare?

19 May, 2026 / Pär Segerdahl / 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.

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

This post in Swedish

In dialogue with patients

Health information when knowledge gaps are already filled

12 May, 2026 / Pär Segerdahl / 2 Comments

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.

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

This post in Swedish

We care about communication

Year: 2026 (Page 1 of 3)

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Health information when knowledge gaps are already filled

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