The Ethics Blog

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

Category: In the research debate (Page 2 of 35)

Ethics as an integral part of standard care

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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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Conceivability and feasibility of artificial consciousness

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11 February, 2025 / / 0 Comments

Can artificial consciousness be engineered, is the endeavor even conceivable?  In a number of previous posts, I have explored the possibility of developing AI consciousness from different perspectives, including ethical analysis, a comparative analysis of artificial and biological consciousness, and a reflection about the fundamental motivation behind the development of AI consciousness.

Together with Kathinka Evers from CRB, and with other colleagues from the CAVAA project, I recently published a new paper which aims to clarify the first preparatory steps that would need to be taken on the path to AI consciousness: Preliminaries to artificial consciousness: A multidimensional heuristic approach. These first requirements are above all logical and conceptual. We must understand and clarify the concepts that motivate the endeavor. In fact, the growing discussion about AI consciousness often lacks consistency and clarity, which risks creating confusion about what is logically possible, conceptually plausible, and technically feasible.

As a possible remedy to these risks, we propose an examination of the different meanings attributed to the term “consciousness,” as the concept has many meanings and is potentially ambiguous. For instance, we propose a basic distinction between the cognitive and the experiential dimensions of consciousness: awareness can be understood as the ability to process information, store it in memory, and possibly retrieve it if relevant to the execution of specific tasks, while phenomenal consciousness can be understood as subjective experience (“what it is like to be” in a particular state, such as being in pain).

This distinction between cognitive and experiential dimensions is just one illustration of how the multidimensional nature of consciousness is clarified in our model, and how the model can support a more balanced and realistic discussion of the replication of consciousness in AI systems. In our multidisciplinary article, we try to elaborate a model that serves both as a theoretical tool for clarifying key concepts and as an empirical guide for developing testable hypotheses. Developing concepts and models that can be tested empirically is crucial for bridging philosophy and science, eventually making philosophy more informed by empirical data and improving the conceptual architecture of science.

In the article we also illustrate how our multidimensional model of consciousness can be tested empirically. We focus on awareness as a case study. As we see it, awareness has two fundamental capacities: the capacity to select relevant information from the environment, and the capacity to intentionally use this information to achieve specific goals. Basically, in order to be considered aware, the information processing should be more sophisticated than a simple input-output processing. For example, the processing needs to evaluate the relevance of information on the basis of subjective priors, such as needs and expectations. Furthermore, in order to be considered aware, information processing should be combined with a capacity to model or virtualize the world, in order to predict more distant future states. To truly be markers of awareness, these capacities for modelling and virtualization should be combined with an ability to intentionally use them for goal-directed behavior.

There are already some technical applications that exhibit capacities like these. For instance, researchers from the CAVAA project have developed a robot system which is able to adapt and correct its functioning and to learn “on the fly.” These capacities make the system able to dynamically and autonomously adapt its behavior to external circumstances to achieve its goals. This illustrates how awareness as a dimension of consciousness can already be engineered and reproduced.

Is this sufficient to conclude that AI consciousness is a fact? Yes and no. The full spectrum of consciousness has not yet been engineered and perhaps its complete reproduction is not conceivable or feasible. In fact, the phenomenal dimension of consciousness appears as a stumbling block against “full” AI consciousness. Among other things, because subjective experience arises from the capacity of biological subjects to evaluate the world, that is, to assign specific values to it on the basis of subjective needs. These needs are not just cognitive needs, as in the case of awareness, but emotionally charged and with a more comprehensive impact on the subjective state. Nevertheless, we cannot rule out this possibility a priori, and the fundamental question whether there can be a “ghost in the machine” remains open for further investigation.

Written by…

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

K. Evers, M. Farisco, R. Chatila, B.D. Earp, I.T. Freire, F. Hamker, E. Nemeth, P.F.M.J. Verschure, M. Khamassi, Preliminaries to artificial consciousness: A multidimensional heuristic approach, Physics of Life Reviews, Volume 52, 2025, Pages 180-193, ISSN 1571-0645, https://doi.org/10.1016/j.plrev.2025.01.002

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The need for self-critical expertise in public policy making

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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?

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

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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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World Health Organization outlines guidelines for the use of genomic data

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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

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

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Approaching future issues

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Citizen scientists as co-authors

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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

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Nurses’ experiences of tube feeding under restraint for anorexia

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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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Psychological distress: an overlooked issue in immigrants

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29 October, 2024 / / 1 Comment

Psychological distress that ethnic minorities experience is an often overlooked problem. In France, the mental well-being of ethnic minorities, particularly those with North African immigrant backgrounds is an important issue to study. Both first- and second-generation immigrants face unique challenges that may make them more vulnerable to more general mental health issues, and psychological disorders. A fresh report from the European Fundamental Rights Association on being a Muslim in the EU (published on October 24, 2024) sheds some light on issues related to health and racial harassment and violence. The report did not study psychological issues specifically, but it is worth noting that race-related violence has psychological impact for 55 percent of the respondents (p. 21).

Vulnerability is frequently linked to ethnic minority status, leading to recurring experiences of discrimination and difficulties in reconciling cultural identity with a society that often prioritizes assimilation. In this context, assimilation tends to erase or disregard the original cultural heritage in favor of integration into the dominant culture. Such dynamics can lead to feelings of isolation, invalidation, and psychological distress among affected individuals.

Research on the mental health of French populations of North African descent remains largely neglected. In other regions, for example North America, mental health and immigration is much better studied. While the topic of discrimination has been explored in some areas, few studies have focused on the psychological effects of these experiences and the coping strategies adopted by these populations in France. Some research does indicate a rise in discrimination, but lack of comprehensive studies on this issue creates both a scientific and social void, keeping these topics largely invisible.

In other southern European countries such as Italy and Spain, the mental health problems of ethnic minorities are recognized, but do not yet receive the same attention as in North America. In Italy, studies on the mental health of minorities are mainly focused on recent migrants and refugees, not least because of the importance of migratory flows in the Mediterranean. Researchers are mainly interested in the traumas associated with exile and the precarious conditions of migrants, but issues of discrimination or systemic racism are less well explored.

In Spain, there is also research on the mental health of migrants, particularly from Latin America and North Africa. However, the framework remains focused on social integration and economic issues, and less on the dynamics of discrimination and ethnicity. Both countries are beginning to recognize the importance of these issues, but in-depth studies on the impact of racial discrimination on the mental health of ethnic minorities, as in all parts of Europe, are still limited.

One psychological phenomenon that is still underexplored in this context is “racial battle fatigue.” Introduced in the early 2000s by William A. Smith, this concept refers to the emotional and psychological stress accumulated by individuals who repeatedly face racism. It represents the emotional burden that ethnic minorities carry as a result of racial discrimination and societal expectations. This burden can drive individuals to minimize or suppress their own suffering to avoid being perceived as “weak” or “complaining.” These coping mechanisms can exacerbate psychological issues, creating a vicious cycle of untreated distress.

In academic and professional settings, there is often reluctance to openly discuss these challenges. Some individuals may regard these topics as taboo or controversial, limiting the opportunities for open dialogue and scientific advancement. This reflects a broader trend in the mental health field, where the specific needs of ethnic minorities, particularly in terms of tailored psychological care, are not adequately addressed.

If we are going to be able to provide concrete answers to these questions, we need to study this phenomenon and shed some light on the mechanisms underlying the psychological suffering of ethnic minorities. Research on the psychological distress experienced by ethnic minorities could also help develop therapeutic interventions better suited to these populations. A recent French pilot study can lead the way: in Rania Driouach’s sample of people with North African descent, 226 out of a total of 387 participants indicated heightened psychological distress on a transgenerational level. Her study is the first step towards a scientific framework that acknowledges the specific needs of these groups while promoting an inclusive and rigorous therapeutic approach. Perhaps such a framework can help pave the way for a better understanding of the effects of migration on psychological distress across generations, and provide better tools for the (mental) health care providers that provide both first and second line care.

This post is written by Rania Driouach (Paris Nanterre University) and:

Sylvia Martin

Sylvia Martin, Clinical Psychologist and Senior Researcher at the Centre for Research Ethics & Bioethics (CRB).

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Digitization of healthcare requires a national strategy to increase individuals’ ability to handle information digitally

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22 October, 2024 / / 1 Comment

There is consensus that the digitization of healthcare can make it easier to keep in touch with healthcare and get information that supports individual decision-making about one’s own health. However, the ability to understand and use health information digitally varies. The promising digitization therefore risks creating unequal care and health.

In this context, one usually speaks of digital health literacy. The term refers to the ability to retrieve, understand and use health information digitally to maintain or improve one’s health. This ability varies not only between individuals, but also within the same individual. Illness can, for example, reduce the ability to use a computer or a smartphone to maintain contact with healthcare and to understand and manage health information digitally. Your digital health literacy is dependent on your health.

How do Swedish policy makers think about the need for strategies to increase digital health literacy in Sweden? An article with Karin Schölin Bywall as the main author examines the question. Material was collected during three recorded focus group discussions (or workshops) with a total of 10 participants. The study is part of a European project to increase digital health literacy in Europe. What did Swedish decision-makers think of the need for a national strategy?

The participants in the study said that the issue of digital health literacy was not as much on the agenda in Sweden as in many other countries in Europe and that governmental agencies have limited knowledge of the problem. Digital services in healthcare also usually require that you identify yourself digitally, but a large group of adults in Sweden lack e-identification. The need for a national strategy is therefore great.

Participants further discussed how digital health literacy manifests itself in individuals’ ability to find the right website and reliable information on the internet. People with lower digital health literacy may not be able to identify appropriate keywords or may have difficulty assessing the credibility of the information source. The problem is not lessened by the fact that algorithms control where we end up when we search for information. Often the algorithms make companies more visible than government organizations.

The policy makers in the study also identified specific groups that are at risk of digital exclusion (digital divide) and that need different types of support. Among others, they mentioned people with intellectual disabilities and young people who do not sufficiently master source criticism (even though they are skilled users of the internet and various apps). Specific measures to counteract the digital divide in healthcare were discussed, such as regular mailings with information about good websites, adaptation of website content for people with special needs, and teaching in source criticism. It was also emphasized that individuals may have different combinations of conditions that affect the ability to manage health information digitally in different ways, and that a strategy to increase digital health literacy must therefore be nuanced.

In summary, the study emphasizes that the need for a national strategy for increased digital health literacy is great. While digital technologies have huge potential to improve public health, they also risk reinforcing already existing inequalities, the authors conclude. Read the study here: Calling for allied efforts to strengthen digital health literacy in Sweden: perspectives of policy makers.

Something that struck me was that the policy makers in the study, as far as I could see, did not emphasize the growing group of elderly people in the population. Elderly people may have a particularly broad combination of conditions that affect digital health literacy in many different ways. In addition, the elderly’s ability to handle information digitally not only varies from day to day, but the ability can be expected to have an increasingly steady tendency to deteriorate. Probably at the same rate as the need to use the ability increases.

Pär Segerdahl

Written by…

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

Bywall, K.S., Norgren, T., Avagnina, B. et al. Calling for allied efforts to strengthen digital health literacy in Sweden: perspectives of policy makers. BMC Public Health 24, 2666 (2024). https://doi.org/10.1186/s12889-024-20174-9

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