The Ethics Blog

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

Month: April 2026

Challenges to academic diversity

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

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

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

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

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

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

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

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

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

Pär Segerdahl

Written by…

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

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

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Losing a family member in an intensive care unit

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14 April, 2026 / / 1 Comment

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

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

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

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

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

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

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

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

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

Pär Segerdahl

Written by…

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

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

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

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7 April, 2026 / / 1 Comment

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

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

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

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

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

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

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

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

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

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Approaching future issues