The Ethics Blog

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

Author: Pär Segerdahl (Page 2 of 42)

Existential conversations in palliative care

Sick man in bed. Photo by Kampus Production on Pexels.
25 March, 2025 / / 2 Comments

In palliative care of seriously ill and dying patients, healthcare professionals deal not only with medical needs, but also with the existential needs of patients and their families. Although the palliative healthcare teams can receive support from professions that focus on existential conversations, it is the physicians and not least the nurses, care assistants, physiotherapists and occupational therapists who more continuously talk with patients about life, dying and death. Sometimes the conversations are planned in advance, but often they arise spontaneously in connection with the care interventions.

A Swedish interview study investigated experiences of spontaneous existential conversations with patients and their families within the healthcare professions that meet them daily: nurses, care assistants, physiotherapists and occupational therapists. They were asked questions about when existential conversations could arise and what influenced the quality of the conversations. They were also asked about how they talked to patients about their thoughts about death, how they reacted to patients’ existential questions, and how they reacted when relatives had difficulty accepting the situation.

The aim of the study was to create a structured overview of the experiences of the healthcare professionals, a model of what was considered important for existential conversations to arise and function well. Strategies used by the palliative teams were identified, as well as obstacles to meaningful existential conversations.

The main concern for the healthcare professionals was to establish a trusting relationship with patients and next of kin. Without such a relationship, no meaningful conversations about life, dying and death could arise. A core category that emerged from the interview material was to maintain presence: to be like a stable rock under all circumstances. In the meeting with patients and relatives, they stayed physically close and were calmly present during quiet moments. This low-key presence could spark conversations about the end of life, about memories, about support for quality of life, even in situations where patients and relatives were afraid or upset. By maintaining a calm presence, it was perceived that one became receptive to existential conversations.

The palliative teams tried to initiate conversations about death early. As soon as patients entered the ward, open-ended questions were asked about how they were feeling. The patients’ thoughts about the future, their hopes and fears were carefully probed. Here, the main thing is to listen attentively. Another strategy was to capture wishes and needs by talking about memories or informing about the diagnosis and how symptoms can be alleviated. The healthcare professionals must also guide relatives, who may be anxious, angry and frustrated. Here, it is important not to take any criticism and threats personally, to calmly acknowledge their concerns and inform about possible future scenarios. Relatives may also need information on how they can help care for the patient, as well as support to say goodbye peacefully when the patient has died. Something that also emerged in the interviews was the importance of maintaining one’s professional role in the team. For example, a physiotherapist must maintain focus on the task of getting patients, who may lack motivation, to get up and exercise. A strategy for dealing with similar difficulties was to seek support from others in the care team, to talk about challenges that one otherwise felt alone with.

Something that could hinder existential conversations was the fear of making mistakes: then one dares neither to ask nor to listen. Another obstacle could be anxious relatives: if relatives are frustrated and disagreeing, this can hinder existential conversations that help them say goodbye and let the patient die peacefully. A third obstacle was lack of time and feeling strained: sometimes the health care professionals have other work tasks and do not have time to stop and talk. And if relatives do not accept that the patient is dying, but demand that the patient be moved to receive effective hospital care, the tension can hinder existential conversations. Finally, lack of continuous training and education in conducting existential conversations was perceived as an obstacle, as was lack of support from colleagues and from the healthcare organization.

Hopefully, the article can motivate educational efforts within palliative care for those professions that manage the existential needs of patients and relatives on a daily basis. You can find the article here: Interdisciplinary strategies for establishing a trusting relation as a pre-requisite for existential conversations in palliative care: a grounded theory study.

Pär Segerdahl

Written by…

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

Lagerin, A., Melin-Johansson, C., Holmberg, B. et al. Interdisciplinary strategies for establishing a trusting relation as a pre-requisite for existential conversations in palliative care: a grounded theory study. BMC Palliative Care 24, 47 (2025). https://doi.org/10.1186/s12904-025-01681-x

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We recommend readings

Why does science ask the question of artificial consciousness?

Two little girls facing each other. One of them is smiling and dancing, the other one has an old TV screen on her head. Photo: Ryunosuke Kikuno, from Unsplash.
4 March, 2025 / / 1 Comment

The possibility of conscious AI is increasingly perceived as a legitimate and important scientific question. This interest has arisen after a long history of scientific doubts about the possibility of consciousness not only in other animals, but sometimes even in humans. The very concept of consciousness was for a period considered scientifically suspect. But now the question of conscious AI is being raised within science.

For anyone interested in how such a mind-boggling question can be answered philosophically and scientifically, I would like to recommend an interesting AI-philosophical exchange of views in the French journal Intellectica. The exchange (which is in English) revolves around an article by two philosophers, Jonathan Birch and Kristin Andrews, who for several years have discussed consciousness not only among mammals, but also among birds, fish, cephalopods, crustaceans, reptiles, amphibians and insects. The two philosophers carefully distinguish between psychological questions about what might make us emotionally attracted to believe that an AI system is conscious, and logical questions about what philosophically and scientifically can count as evidence for conscious AI. It is to this logical perspective that they want to contribute. How can we determine whether an artificial system is truly conscious; not just be seduced into believing it because the system emotionally convincingly mirrors the behavior of subjectively experiencing humans? Their basic idea is that we should first study consciousness in a wide range of animal species beyond mammals. Partly because the human brain is too different from (today’s) artificial systems to serve as a suitable reference point, but above all because such a broad comparison can help us identify the essential features of consciousness: features that could be used as markers for consciousness in artificial systems. The two philosophers’ proposal is thus that by starting from different forms of animal consciousness, we can better understand how we should philosophically and scientifically seek evidence for or against conscious AI.

One of my colleagues at CRB, Kathinka Evers, also a philosopher, comments on the article. She appreciates Birch and Andrews’ discussion as philosophically clarifying and sees the proposal to approach the question of conscious AI by studying forms of consciousness in a wide range of animal species as well argued. However, she believes that a number of issues require more attention. Among other things, she asks whether the transition from carbon- to silicon-based substrates does not require more attention than Birch and Andrews give it.

Birch and Andrews propose a thought experiment in which a robot rat behaves exactly like a real rat. It passes the same cognitive and behavioral tests. They further assume that the rat brain is accurately depicted in the robot, neuron for neuron. In such a case, they argue, it would be inconsistent not to accept the same pain markers that apply to the rat for the robot as well. The cases are similar, they argue, the transition from carbon to silicon does not provide sufficient reason to doubt that the robot rat can feel pain when it exhibits the same features that mark pain in the real rat. But the cases are not similar, Kathinka Evers points out, because the real rat, unlike the robot, is alive. If life is essential for consciousness, then it is not inconsistent to doubt that the robot can feel pain even in this thought experiment. Someone could of course associate life with consciousness and argue that a robot rat that exhibits the essential features of consciousness must also be considered alive. But if the purpose is to identify what can logically serve as evidence for conscious AI, the problem remains, says Kathinka Evers, because we then need to clarify how the relationship between life and consciousness should be investigated and how the concepts should be defined.

Kathinka Evers thus suggests several questions of relevance to what can logically be considered evidence for conscious AI. But she also asks a more fundamental question, which can be sensed throughout her commentary. She asks why the question of artificial consciousness is even being raised in science today. As mentioned, one of Birch and Andrews’ aims was to avoid the answer being influenced by psychological tendencies to interpret an AI that convincingly reflects human emotions as if it were conscious. But Kathinka Evers asks, as I read her, whether this logical purpose may not come too late. Is not the question already a temptation? AI is trained on human-generated data to reflect human behavior, she points out. Are we perhaps seeking philosophical and scientific evidence regarding a question that seems significant simply because we have a psychological tendency to identify with our digital mirror images? For a question to be considered scientific and worth funding, some kind of initial empirical support is usually required, but there is no evidence whatsoever for the possibility of consciousness in non-living entities such as AI systems. The question of whether an AI can be conscious has no more empirical support than the question of whether volcanoes can experience their eruptions, Kathinka Evers points out. There is a great risk that we will scientifically try to answer a question that lacks scientific basis. No matter how carefully we seek the longed-for answer, the question itself seems imprudent.

I am reminded of the myth of Narcissus. After a long history of rejecting the love of others (the consciousness of others), he finally fell in love with his own (digital) reflection, tried hopelessly to hug it, and was then tormented by an eternal longing for the image. Are you there? Will the reflection respond? An AI will certainly generate a response that speaks to our human emotions.

Pär Segerdahl

Written by…

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

Birch Jonathan, Andrews Kristin (2024/2). To Understand AI Sentience, First Understand it in Animals. In Gefen Alexandre & Huneman Philippe (Eds), Philosophies of AI: thinking and writing with LLMs, Intellectica, 81, pp. 213-226.

Evers Kathinka (2024/2). To understand sentience in AI first understand it in animals. Commentary to Jonathan Birch and Kristin Andrews. In Gefen Alexandre & Huneman Philippe (Eds), Philosophies of AI: thinking and writing with LLMs, Intellectica, 81, pp. 229-232.

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We challenge habits of thought

Ethics as an integral part of standard care

Four people sitting at a table, and a women in a black shirt sitting in front of a laptop. Photo: Cottonbro, from Pexels.
25 February, 2025 / / 1 Comment

Healthcare professionals experience ethical dilemmas and ethically challenging situations on a daily basis. A child receiving important treatment may have difficulty sitting still. How should one think about physically restraining children in such situations? In order to provide good care, healthcare professionals may regularly need time and support to reflect on ethical dilemmas that may arise in their work.

Experiences from an attempt to introduce regular reflection on ethics cases are reported in an article with Pernilla Pergert as the main author. Staff in pediatric cancer care received training in conducting so-called ethics rounds, where healthcare professionals meet to discuss relevant ethics cases. The course participants were assigned to arrange ethics rounds at their respective workplaces both during and after the training. They were then interviewed about their experiences. Hopefully, the results can help others who are planning to introduce ethics rounds.

The experiences revolved around the challenge of positioning ethics in the workplace. How do you find time and space for regular ethical reflection in healthcare? Positioning ethics was not least about the status of ethics in a healthcare organization that prioritizes direct patient care. From such a perspective, ethics rounds may be seen as a luxury that does not really belong to the care work itself, even though ethical reflection is necessary for good care.

The interviewees also spoke about different strategies for positioning ethics. For example, it was considered important that several interested parties form alliances where they collaborate and share responsibility for introducing ethics rounds. This also helps ensure that several different professional groups can be included in the ethics rounds, such as physicians, nurses, social workers and psychologists. It was also considered important to talk about the ethics rounds and their benefits at staff meetings, as well as to identify relevant patient cases with ethical dilemmas that may create concern, uncertainty and conflicts in the care work. These ethical dilemmas do not have to be big and difficult, also more frequently occurring everyday ethical challenges need to be discussed. Finally, the importance of scheduling the ethics rounds at fixed times was emphasized.

The authors conclude that their study highlights the need to position ethics in healthcare so that staff can practice ethics as part of their care work. The study also exemplifies strategies for achieving this. A major challenge, the authors emphasize, is the polarization between care and ethics, as if ethics were somehow outside the actual care work. But if ethical dilemmas are part of everyday healthcare, then ethics should be seen as an integral part of standard care, the authors argue.

Read the article here: Positioning Ethics When Direct Patient Care is Prioritized: Experiences from Implementing Ethics Case Reflection Rounds in Childhood Cancer Care.

Pär Segerdahl

Written by…

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

Pergert, P., Molewijk, B. & Bartholdson, C. Positioning Ethics When Direct Patient Care is Prioritized: Experiences from Implementing Ethics Case Reflection Rounds in Childhood Cancer Care. HEC Forum (2024). https://doi.org/10.1007/s10730-024-09541-6

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We like real-life ethics

The need for self-critical expertise in public policy making

Tired nurse. Photo by Cedric Fauntleroy on Pexels
28 January, 2025 / / 1 Comment

Academics are often recruited as experts in committees tasked with developing guidelines for public services, such as healthcare. It is of course important that policy documents for public services are based on knowledge and understanding of the problems. At the same time, the role of an expert is far from self-evident, because the problems that need to be addressed are not purely academic and cannot be defined in the same way that researchers define their research questions. A competent academic who accepts the assignment as an expert therefore has reason to feel both confident and uncertain. It would be unfortunate otherwise. This also affects the expectations of those around them, not least the authority that commissions the experts to develop the guidelines. The expert should be given the opportunity to point out any ambiguities in the committee’s assignment and also to be uncertain about his or her role as an expert. Again, it would be unfortunate otherwise. But if the expert role is contradictory, if it contains both certainty and uncertainty, both knowledge and self-criticism, how are we to understand it?

A realistic starting point for discussing this question is an article in Politics & Policy, written by Erica Falkenström and Rebecca Selberg. They conducted an empirical case study of ethical problems related to the development of Swedish guidelines for intensive care during the COVID-19 pandemic: “National principles for prioritization in intensive care under extraordinary circumstances.” The expert group consisted of 11 men, all physicians or philosophers. The lack of diversity is obviously problematic. The professional group that most directly comes into contact with the organizational challenges in healthcare, nurses, mostly women, was not represented in the expert group. Nor did the expert group include any social scientists, who could have contributed knowledge about structural problems in Swedish healthcare even before the pandemic broke out, such as problems related to the fact that elderly care in Sweden is administered separately by the municipalities. Patients in municipal nursing homes were among the most severely affected groups during the pandemic. They were presented in the policy document as a frail group that should preferably be kept away from hospitals (where the most advanced medical care is provided), and instead be cared for on site in the nursing homes. A problematic aspect of this was that the group of elderly patients in municipal care did not have access to competent medical assessment of their individual ability to cope with intensive care, which could possibly be seen as discriminatory. This reduction in the number of patients requiring intensive care may in turn have given the regional authorities responsible for intensive care reason to claim that they had sufficient resources. Moreover, if one of the purposes of the guidelines was to reduce stress among healthcare staff, one might wonder what impact the guidelines had on the stress level of municipal employees in nursing homes.

The authors identify ethical issues concerning three aspects of the work to develop the national guidelines: regarding the starting points, regarding the content of the document, and regarding the implementation of the guidelines. They also discuss an alternative political-philosophical way of approaching the role of being an expert, which could counteract the problems described in the case study. This alternative philosophical approach, “engaged political philosophy,” is contrasted with a more conventional philosophical expert role, which according to the alternative view overemphasizes the role of philosophy. Among other things, by letting philosophical theory define the problem without paying sufficient attention to the context. Instead, more open questions should be asked. Why did the problem become a public issue right now? What are the positions and what drives people apart? By starting from such open-ended questions about the context, the politically engaged philosopher can identify values ​​at stake, the facts of the current situation and its historical background, and possible contemporary alternatives. As well as including several different forms of relevant expertise. A broader understanding of the circumstances that created the problem can also help authorities and experts to understand when it would be better not to propose a new policy, the authors point out.

I personally think that the risk of experts overemphasizing the importance of their own forms of knowledge is possibly widespread and not unique to philosophy. An alternative approach to the role of being an expert probably requires openness to its basic contradiction: the expert both knows and does not know. No academic discipline can make exclusive claim to such self-critical awareness, although self-examination can be described as philosophical in a broad sense that takes us beyond academic boundaries.

I recommend the article in Politics & Policy as a fruitful case study for further research and reflection on challenges in the role of being an expert: Ethical Problems and the Role of Expertise in Health Policy: A Case Study of Public Policy Making in Sweden During COVID-19.

Pär Segerdahl

Written by…

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

Falkenström, E. and Selberg, R. (2025), Ethical Problems and the Role of Expertise in Health Policy: A Case Study of Public Policy Making in Sweden During COVID-19. Politics & Policy, 53: e12646. https://doi.org/10.1111/polp.12646

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Do the goals of care reflect the elderly patient’s personal preferences?

Elderly person with a golden ring on their finger.
14 January, 2025 / / 1 Comment

Person-centered care is not only an ethical approach that values ​​the patient’s personal preferences and decision-making. It is also a concrete way to improve care and the patient’s quality of life. This is especially important when caring for elderly patients, who may have multiple chronic conditions and various functional limitations. This requires sensitivity to the patient’s description of their situation and joint planning to adapt care to the patient’s individual needs and wishes. The care plan should be documented in the patient’s medical record in the form of evaluable goals.

A new Swedish study investigated the presence of person-centered, evaluable goals in the care plans for patients at a geriatric psychiatric outpatient clinic. It was found that the goals documented in the patients’ medical records had a biomedical focus on the disease: on recovery or on reduced symptoms. Although the analysis of the medical records revealed that the patients themselves also expressed other needs, such as existential needs and the need for support in carrying out everyday activities they perceived were important for a better quality of life, these personal wishes were not reflected in the care plans in the form of evaluable goals.

A biomedical focus on disease treatment could also manifest itself in the form of decisions to reduce the prescription of addictive drugs, without the care plan indicating alternative measures or mentioning the effects that this medical goal could have on the patient.

The authors point out that the fact that the medical records nevertheless documented the patients’ personal wishes indicates that there was a certain degree of person-centered interaction with the patients. However, since the conversations did not result in documented goals of care, the person-centered process seems to have stopped halfway, the authors argue in their discussion of the results. The patients’ stories were included, but were not incorporated into the medical decision-making process and the planning of care.

An aim of the study was also to examine psychiatric care plans at the end of life. Although the proximity to death and the possibility of palliative care could be mentioned in the medical records, the goals were rarely changed from curative to palliative care. Moreover, neither the healthcare professionals nor the patients seemed to view psychiatric care as part of palliative care. On the contrary, they seemed to view palliative care as a reason to end psychiatric care. None of the few decisions to change the focus of care led in practice to any straightforward palliative approach.

The absence of the concept of palliative care, despite the fact that the patients were close to death when the studied goals of care were established, is surprising, according to the authors. Conversations about goals and hopes at the end of life should be self-evident in geriatric psychiatry, and in their discussion, the authors suggest concrete tools that are already available to support such conversations. Given the complex combination of conditions and the proximity to death, there are strong reasons to formulate care plans with an increased focus on improved quality of life and not just on restored mental health, the authors argue.

In their conclusion, the authors point out the need for more research on how person-centered care interacts with the planning of evaluable goals. They also point out the importance of a palliative approach in geriatric psychiatric care, where patients may suffer from multiple concurrent conditions as well as more or less severe and long-term mental disorders.

Read the article here: Psychiatric Goals of Care at the End of Life: A Qualitative Analysis of Medical Records at a Geriatric Psychiatric Outpatient Clinic.

Pär Segerdahl

Written by…

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

Kullenberg, Helena, Helgesson, Gert, Juth, Niklas, Lindblad, Anna, Psychiatric Goals of Care at the End of Life: A Qualitative Analysis of Medical Records at a Geriatric Psychiatric Outpatient Clinic, Journal of Aging Research, 2024, 2104985, 10 pages, 2024. https://doi.org/10.1155/jare/2104985

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Ethics needs empirical input

Columbo in Athens

A man standing in front of ancient greek ruins. Photo: AI-generated in Microsoft Designer by Ashkan Atry.
17 December, 2024 / / 3 Comments

One of the most timeless TV crime series is probably Columbo. Peter Falk plays an inquisitive police lieutenant who sometimes seems so far beyond ordinary time reckoning that he can make Los Angeles resemble ancient Athens, where an equally inquisitive philosopher cared just as little about his appearance.

I hope you have seen a few Columbo episodes. I also take the liberty of opening this post by revealing why I want to write about him. Because he not only exposes the murderers but at the same time frees them from living entangled in their own brilliant plans. You might remember the unusual disposition of the episodes, that we immediately learn who the perpetrator is. The murderers in the series are distinguished not only by their high social and economic status, but also by their high intelligence (and their overconfidence in it). Before the murder takes place, we get to follow how ingeniously the killer plans the deed. The purpose is to give the appearance of having a watertight alibi, to avoid leaving unintended clues at the murder scene, and to leave those clues that clearly point to someone else. Everything is perfectly thought out: BANG! In the next act, Columbo enters the scene of the murder in his worn coat and with a cigar that has usually gone out. In one episode he arrives with a boiled egg in his pocket which he cracks against the murder weapon when he has not had time to eat breakfast.

The murder was just the prelude. Now the episode begins for real, the interaction between the absent-minded Columbo and the shrewd murderer who planned everything in detail and now feels invincible. Especially considering that the police lieutenant leading the investigation is clearly just a confused poor thing constantly fumbling for his notepad and pencil and asking irrelevant questions. I have soon dealt with this fellow, the killer thinks.

Columbo often immediately knows who the murderer is. He can reveal this in a final conversation with the murderer where both can unexpectedly find each other and speak openly, almost like old friends. Soon even the murderer begins to understand that Columbo knows, even though the lieutenant’s absent-minded demeanor at first made this unlikely. Usually, however, the murderer’s confidence is not shaken by knowing that Columbo knows, for everything is perfectly thought out: Columbo “knows” without being able to prove anything! Columbo spends many sleepless nights wondering about the murderer’s alibi and motive, or about seemingly irrelevant details at the murder scene: the “loose ends” that Columbo often talks about, without the murderer understanding why. They seem too trivial to touch the ingenious plan! The murderer almost seems to enjoy watching Columbo rack his brain with immaterial details that cannot possibly prove what both already “know.” Little does the killer know that Columbo’s uncertainty will soon bear fruit.

Finally, Columbo manages to tie up the loose ends that the murderer did not see the point of (they looked so plain compared to the elegant plan). When Columbo reveals how the alibi was only apparent, how the all-too-obvious clues were deliberately placed at the murder scene, and the murderer’s cheap selfish motive, the murderer expects to be arrested by Columbo. “No, others will come and arrest you later,” says Columbo, who suddenly seems uninterested in the whole matter. Columbo seems to have only wanted to expose the illusory reality the killer created to mislead everyone. The murderer is the one who walks into the trap first. To make everything look real, the murderer must live strictly according to the insidious plan from the very first act. Maybe that is why the murderer often seems to breathe a sigh of relief in the final act. Columbo not only exposes the criminal, but also frees the criminal mind from constantly living trapped in its own calculations.

In the conversation at the end, the otherwise active killer seems numbed by Columbo, calm and without a winning smile. Even the murderer is for the first time happily absent-minded.

How does Columbo manage to uncover the insidious plan? We like to think that Columbo succeeds in exposing the murderer because Columbo is even smarter. If Columbo switched sides and planned crimes, no one could expose him! He would be a super-intelligence that could satisfy every wish, like the genie in the lamp. Sometimes even the murderer seems to think along these lines and offers Columbo employment and a brilliant career. With Columbo as accomplice, the murderer would be invincible. But Columbo does not seem to care more about his future than about his appearance: “No, never, I couldn’t do that.” He loves his work, he explains, but hardly gives the impression of being a police lieutenant, but is sometimes mistaken for a vagrant who is kindly asked to remove himself from the scene of the murder. Nuns can offer him food and clothes. Is Columbo the one actually creating the false appearance? Is he the one with the most cunning plan? Is his absent-mindedness just a form of ironic pretense to lure the murderer into the trap?

Columbo probably benefits from his disarming simplicity and absent-minded demeanor. But although we sometimes see him setting traps for the killer, we never see him disguise himself as a vagrant. When his wife has given him a nicer coat, he seems genuinely bothered by it, as if he were dressed up. Is Columbo’s confusion sincere after all? Is it the confusion he loves about his work? Is it perhaps the confusion that eventually reveals the murderer’s watertight plan?

Columbo’s colleagues are not confused. They follow the rules of the game and soon have exactly the conviction the murderer planned for them according to the manual: the murderer has no motive, has a watertight alibi, and cannot be tied to the scene of the murder. Technical evidence, on the contrary, clearly points in a different direction. If the colleagues were leading the investigation, the murderer would have already been removed from the list of suspects. This is how a colleague complains when he feels that Columbo is slowing down the investigation by not following the plan of the criminal mastermind:

Sergeant Hoffman: Now what do you think Lieutenant, do you really think that Deschler didn’t shoot Galesko in the leg?

Columbo: I’ll tell you something, Sergeant, I don’t know what to think.

The injured Galesko is in fact the murderer. He shot himself in the leg after killing Deschler, to make the killing look like self-defense against “his wife’s kidnapper.” Galseko has already murdered his wife, having staged the kidnapping and planted the clues that point to Deschler. Why did Galesko murder his wife? Because he felt she was obscuring his bright future. The murderers in the TV series not only plan their deeds, but also their lives. Without ideas of bright futures, they would lack motive to plan murder.

Neither the killer nor the colleague suffers from uncertainty, they both sleep well. Only Columbo is awake: “I don’t know what to think.” Therefore, he tries to tie up loose ends. Like the philosopher Socrates in ancient Athens, Columbo knows that he does not know. Therefore, he torments the murderer (and the colleagues) with vexing questions that do not belong to the game, but rather revolve around it. Now you probably want to direct Columbo’s most famous line at me: “Oh, just one more thing!” For did I not say that Columbo immediately knows who the murderer is? Yes, I did. Columbo already “knows” who the murderer is. How? Does he know it through his superior intelligence that reveals the whole case in a flash? No, but because the murderer does not react like someone who does not know. When informed of the murder, the killer reacts strangely: like someone who already knows. Lack of confusion is the hallmark of the murderer.

When Columbo reveals the tangle of thoughts that already in the first act ensnared the murderer, the perpetrator goes to prison without complaint. Handcuffs are redundant when the self-made ones are finally unlocked. Columbo has calmed the criminal mind. The culprit is free from the murder plan that would secure the future plan. Suddenly everything is real, just real.

Just one more thing: Merry Christmas and do not plan too much!

Pär Segerdahl

Written by…

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

The dialogue between Hoffman and Columbo is from the episode Negative Reaction (1974). Columbo’s response to the career offer is from The Bye-Bye Sky-High I.Q. Murder Case (1977).

The image is AI-generated in Microsoft Designer by Ashkan Atry.

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Thinking about thinking

Were many clinical trials during the COVID-19 pandemic unethical?

Two caregivers and a digital tablet. Photo: Nappy, from Unsplash.
10 December, 2024 / / 1 Comment

It is understandable if the COVID-19 pandemic spurred many researchers to conduct their own studies on patients with the disease. They wanted to help in a difficult situation by doing what they were competent to do, namely research. The question is whether the good will sometimes had problematic consequences in terms of research ethics.

For a clinical trial to have scientific and social value, a large number of participants is required. This is in order to be able to compare groups that are treated differently and with a sufficiently high probability demonstrate real connections between treatment and outcome. 20 years ago, small so-called underpowered trials were common, but the pandemic made them flourish again. Some COVID-19 studies had fewer than 50 participants.

Is it then not good that researchers do what they can in a difficult situation, even if it means that they do research on the smaller patient groups that they manage to recruit? The problem is that underpowered clinical trials do not provide valid scientific knowledge. Thus, they have hardly any value for society and it becomes doubtful whether the researchers are really doing what they feel they are doing, namely helping in a difficult situation.

You can read about this in a commentary in the Journal of the Royal Society of Medicine, written by Rafael Dal-Ré, Stefan Eriksson and Stephen Latham. They point out that researchers sometimes defend underpowered clinical trials with the argument that smaller studies are easier to complete and that data from small trials around the world can be pooled to achieve the required statistical power. This is correct if the studies used sufficiently similar research methods to make the data comparable, the authors comment. This is often not the case, but requires that researchers plan from the outset to pool data from their respective studies. Another problem is that underpowered clinical trials more often have negative results and that such studies are less often published. Pooled data from underpowered studies published in journals are therefore not representative. Data from such studies would therefore need to be posted on freely accessible platforms, the authors argue.

Exposing patients to the risks and inconveniences involved in participating in a clinical trial is unethical if the study cannot be judged to provide scientifically valid knowledge with social value. The authors’ conclusion is therefore that research ethics committees that review planned research must very carefully assess that the studies have a sufficiently large number of participants to achieve valid and useful knowledge. If underpowered studies are nevertheless planned, participants must be informed that the results may not be scientifically valid in themselves, but that they will be pooled with results from similar studies in order to achieve statistical power. If there is no agreement with other researchers to pool results, underpowered studies should not be approved by research ethics committees, the three authors conclude. Not even during a pandemic.

Read the commentary here: Underpowered trials at trial start and informed consent: action is needed beyond the COVID-19 pandemic.

Pär Segerdahl

Written by…

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

Dal-Ré R, Eriksson S, Latham SR. Underpowered trials at trial start and informed consent: action is needed beyond the COVID-19 pandemic. Journal of the Royal Society of Medicine. 2024;0(0). doi:10.1177/01410768241290075

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We want solid foundations

World Health Organization outlines guidelines for the use of genomic data

DNA chain link. Photo: Warren Umoh, Unsplash.
26 November, 2024 / / 1 Comment

Human genomics has potential to improve the health of individuals and populations for generations to come. It also requires the collection, use and sharing of data from people all over the world. There is therefore an accompanying need for a globally fair distribution of genomic technology, data and results. As the databases and infrastructures will be in operation for a long time, ethical, legal, social and cultural issues need to be taken into account from the outset, considering the entire life cycle of the data.

To promote such an ethical, equitable and responsible use of genomic data, the World Health Organization (WHO) recently issued globally applicable guidelines for human genome data collection, access, use and sharing. The guidelines are formulated as 8 principles with associated practical recommendations. The principles were developed step by step, first through review of existing documents and virtual consultation with experts from different parts of the world, then through a workshop in Geneva where experts met on site. Finally, the draft was discussed through public consultations.

The purpose of the WHO document is to create globally applicable principles that can complement local legislation. This is to promote, among other things, social and cultural inclusiveness as well as justice in the use of human genome data.

Read the important document here: Guidance for human genome data collection, access, use and sharing.

Pär Segerdahl

Written by…

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

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Approaching future issues

Citizen scientists as co-authors

Woman looking into a pair of binoculars in the woods. Photo: Kayla Farmer, Unsplash.
19 November, 2024 / / 1 Comment

A recurring theme on this blog is the question of who can be counted as an author of a research article. You might be thinking: how difficult can it be to determine if someone is the author of an article? But the criteria for academic authorship are challenged on several fronts and therefore need to be discussed. I recently blogged about a debate about two of these challenges: huge research projects where a large number of researchers and experts in different fields contribute to the studies, and the use of AI in research and academic writing (for example ChatGPT).

Today I want to recommend an article on publication ethics that discusses a third challenge to the authorship criteria. The challenge is called citizen science. Similar to the big research collaborations I mentioned above, a very large number of individuals often contribute to citizen science. The difference is that the professional researchers here collaborate with voluntary participants from the general public and not just with other researchers or experts. It may involve ordinary citizens reporting their observations of plant and animal life, helping astronomers categorize large amounts of photographed astronomical objects, contributing to solutions to mathematical problems or perhaps even discussing the design of research projects. Citizen science is important, for example, when data collection requires the efforts of so many observers in so many places, that the observations would otherwise be too expensive or time-consuming. Citizen science is also important because it gives citizens insight into research, increases trust in science and creates contacts between research and society.

The so-called Vancouver rules for authorship have been criticized for allegedly excluding citizen scientists from authorship, even though the voluntary contributions are sometimes so significant that they could merit such recognition. The rules state (slightly simplified) that to count as an author you must have made significant contributions to the research study (e.g., design, data collection, analysis, interpretation). But you must also have participated in the writing process, approved the final version of the article, and accepted responsibility for the research being carried out correctly.

An important point in the article that I recommend is that it is not necessarily the Vancouver rules that exclude citizen scientists from authorship. On the contrary, it may be that the researchers leading the projects do not follow the rules. In addition to the four criteria above, the Vancouver rules say that individuals who meet the first criterion should be given the opportunity to meet the other three as well. Citizen scientists who have made significant contributions to the study should therefore be given the opportunity to write or revise relevant sections of the text, approve the final version and accept responsibility for the accuracy of at least their own contribution to the study. In citizen science, it is also often the case that a small number of “superusers” account for the bulk of the work effort. It should be possible to treat these individuals in the same way as one treats professional researchers who have made significant contributions, that is, give them the opportunity to qualify for authorship.

A more difficult issue discussed in the article is group authorship. In citizen science, the collective contribution of the whole group is often significant, while the individual contributions are not. Would it be possible to give the group collective credit in the form of group authorship? Not doing so could give a false impression that the professional researchers made a greater effort in the study than they actually did, the four publication ethicists argue in the article. It can also be unfair. If individual researchers who fulfill the first criterion should be given the opportunity to fulfill all criteria, then groups should also be given this opportunity. In such cases, the group should (in some way) be given the opportunity to participate in the critical revision of the article and to approve the final version. But can a group of 2,000 volunteer bird watchers take responsibility for a research study being carried out properly? Perhaps the group can at least answer for the accuracy of its own observation efforts. Being credited for one’s contribution to a study through authorship and taking responsibility for the contribution are two sides of the same coin, according to the publication ethicists. That citizen scientists must accept responsibility in order to be counted as co-authors is perhaps also an opportunity to convey something about the nature of science, one could add.

The article concludes by proposing seven heuristic rules regarding who can be included as an author. For example, one should, as far as possible, respect existing guidelines (such as the Vancouver rules), apply a wide conception of contributions, and be open to new forms of authorship. Perhaps a group can sometimes be credited through authorship? The seventh and final heuristic rule is to be generous to citizen scientists in unclear cases by including rather than excluding.

Read the article on citizen scientists as authors here: Authorship and Citizen Science: Seven Heuristic Rules.

Pär Segerdahl

Written by…

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

Sandin, P., Baard, P., Bülow, W., Helgesson, G. Authorship and Citizen Science: Seven Heuristic Rules. Science and Engineering Ethics 30, 53 (2024). https://doi.org/10.1007/s11948-024-00516-x

This post in Swedish

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Nurses’ experiences of tube feeding under restraint for anorexia

Zoomed in picture of person in blue scrubs holding a chart, in front of a blue background. Photo: Cottonbro.
12 November, 2024 / / 1 Comment

The eating disorder anorexia (anorexia nervosa) is a mental disorder that can be life-threatening if it is not treated. It is characterized by fear of gaining weight: you starve yourself to lose weight and do not understand that being underweight is dangerous. Even if most recover, the disease is associated with increased mortality and the most severely ill may need to be hospitalized.

Hospital care can involve both psychotherapy and drug treatment, but not everyone wants or is able to participate in the treatment, which of course also involves eating. They may lack motivation to change or refuse to see that they need treatment. If the malnutrition becomes life-threatening, it may be necessary to decide on tube feeding as a compulsory measure. Liquid nutrition is then given via a thin tube that is inserted through one nostril and down into the stomach.

Tube-feeding an adult who does not want to eat is reasonably a challenge for the nurses who have to perform the procedure. What are their experiences of the measure like? One study investigated the issue by interviewing nurses at a Norwegian inpatient ward where adult patients with severe anorexia were cared for. What did the nurses have to say?

An important theme was that one strove to provide good care even during the coercive measure. It must be so good that the patient voluntarily wants to stay in the ward after tube feeding. For example, the measure is never taken until one has gradually tried to encourage the patient to eat, asked the patient about the situation and discussed whether to use the tube instead. If tube feeding becomes necessary, one still tries to give the patient options, one tries to respect the patient’s autonomy as much as possible, even if it is a coercive measure. The nurses also described difficulties in balancing kindness and firmness during the procedure, difficulties in combining the role of being a helper and being a controller.

Another theme was ethical concerns when the doctor decided on tube feeding even though the patient’s BMI was not so low that the condition was life-threatening. One nurse stated that she sometimes found such situations so problematic that she refused to take part in the procedure.

The third theme was concerns about calling in staff from another ward to help restrain the patient while the nurse performed the tube feeding. Some nurses were concerned about how this might be experienced by patients with a history of abuse. Others saw the tube feeding as a life-saving measure and experienced no ethical concerns. However, participants in the study emphasized that tube feeding affects the relationship with the patient and that restraint can disrupt the relationship. A nurse told how she once performed tube feeding on a patient she had never met before, and with whom she had therefore not established a relationship, and how this then prevented a good relationship with that patient.

If you want to read for yourself what the nurses said and how the authors discussed their findings, read the study here: Nurses’ experience of nasogastric tube feeding under restraint for Anorexia Nervosa in a psychiatric hospital.

Interview studies that capture human experience through the participants’ own stories often yield unexpectedly meaningful insights. Subtle details of human life that you would not otherwise have thought of appear in the interview material. One such insight from this study was how the nurses made great efforts so that tube feeding could be perceived as good care with respect for the patient’s autonomy and dignity, despite the fact that it is a coercive measure. It also became clear that there were tensions in the situation that the nurses had difficulty dealing with, such as first performing the coercive measure and then comforting the patient and re-establishing the relationship that had been disrupted. One of the conclusions in the article is therefore that even the nurses who perform tube feeding are vulnerable.

Pär Segerdahl

Written by…

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

Brinchmann, B.S., Ludvigsen, M.S. & Godskesen, T. Nurses’ experience of nasogastric tube feeding under restraint for Anorexia Nervosa in a psychiatric hospital. BMC Medical Ethics 25, 111 (2024). https://doi.org/10.1186/s12910-024-01108-x

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Ethics needs empirical input

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