The Ethics Blog

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

Month: June 2025

What do MS patients consider to be the most important features of treatment?

Nervous Tissue: Spinal Cord Motor Neuron. Photo by Bioscience Image Library by Fayette Reynolds.
17 June, 2025 / / 0 Comments

Multiple sclerosis (MS) is a chronic inflammatory disease that affects the nerves of the brain and spinal cord. Symptoms can vary between individuals and the progression of the disease is difficult to predict. Medications can slow the progression of the disease and relieve symptoms, but they do not cure the disease. Symptoms tend to come and go and need to be monitored so that the patient always receives appropriate treatment.

Because MS is a lifelong disease with symptoms that come and go, and that change throughout life, it is important to know which features of treatment are perceived by patients as particularly important. Such knowledge can help healthcare professionals, in consultation with patients, to better tailor treatment to the individual’s wishes and needs. Patient-centred care is probably particularly important for lifelong diseases such as MS, with unpredictable progression and changing symptoms.

So how can we know which features of treatment are considered most important by patients? Preference studies can be conducted. The approaches in such studies vary. Patients can be interviewed or they can complete surveys. Surveys can ask questions in different ways, for example, the task may be to rank alternatives. Sometimes preference studies resemble experiments in which participants are presented with a series of choice situations that are systematically varied.

A Swedish-Italian collaboration investigated what patients perceive as important features of the treatment by giving them a ranking task. MS patients at an Italian university hospital were asked to rank alternatives for five different features of the treatment, including treatment effect and intervention method. The treatment effect that was ranked highest was preserved cognitive function, and the intervention method that was valued highest was disease-modifying drugs. The patients were also asked to justify their answers.

The research team then evaluated the results of the ranking task. The options that the patients ranked highest were now identified as important features of the treatment. Here is the final list of important features of the treatment:

Physical activity

Cognitive training

Disease-modifying drugs

Emotional support

Treatment effects

Each feature has 3–4 alternatives: different types of physical activity, different types of cognitive training, and so on. This ranking study is a preliminary study for a future, more experimental-like preference study that will be based on the features in the list. The advantage of such a step-by-step work process is that you can ensure that you ask the right questions and include the relevant features when designing the experimental study.

The final results therefore remain to be seen, but the above features can be considered an important step along the way. You can read the article here: What matters to patients with multiple sclerosis? Identifying patient-relevant attributes using a ranking exercise with open-ended answers from an online survey in Italy.

Pär Segerdahl

Written by…

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

Bywall KS, Kihlbom U, Johansson JV, et al. What matters to patients with multiple sclerosis? Identifying patient-relevant attributes using a ranking exercise with open-ended answers from an online survey in Italy. BMJ Open 2025;15:e095552. doi: 10.1136/bmjopen-2024-095552

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Exploring preferences

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Are you a blissfully unaware author of an article you never wrote?

Question marks on paper. Photo: Lee Loo The First, Pexels.
3 June, 2025 / / 3 Comments

Every day, researchers receive a motley of offers from dubious journals to publish in them – for a fee. The fact that researchers do not accept these offers does not prevent them from one day discovering that they have become authors of an article that they never wrote.

This recently happened to four surprised colleagues of mine. Suddenly, they began to receive inquiries from other colleagues about a new article that they were supposed to have written. When they investigated the matter, they discovered that an article actually existed in published form, in their names, even though they had neither written it nor even dreamed of the study described in it. Since they had never submitted a manuscript, they were of course not in communication with the journal’s editorial staff: they received neither peer reviews nor proofs to read. Although the article they read with increasing astonishment seemed to report a study on children with cancer, a vulnerable group, the study lacked both ethical approval and funding, and the location of the study was not disclosed. When my puzzled and concerned colleagues contacted the journal about these oddities, they naturally received no response.

One may wonder how such publicist virgin births can occur. If we rule out the possibility that a deity has begun to communicate with humanity via new electronic forms of publishing, in the name of established researchers, perhaps we should focus on the question of who can profit from the miracles. Could it be a cheating researcher trying to improve their credentials by publishing a fraudulent study? Hardly, the cheater’s name is not included in the list of authors, so the publication would not be of any use in the CV. Or could it be the owners of the journal who are trying to make the journal look more legitimate by borrowing the names of established and credible researchers, so that more researchers will be tempted to accept the offers to publish in the journal – for a fee? With the help of AI, an article can easily be generated that reports research that no real researcher would even dream of. Such as a study on children with cancer without ethics approval and funding, conducted in an unknown location and published without the slightest contact with the journal.

To alert scientific journals to this new challenge, one of my colleagues chose to publish a description of the group’s experience of becoming authors of an article they never wrote. You will find the description here – the author’s name is authentic and not just a generated “probable name”: Fraudulent Research Falsely Attributed to Credible Researchers—An Emerging Challenge for Journals?

Pär Segerdahl

Written by…

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

Godskesen, T. (2025), Fraudulent Research Falsely Attributed to Credible Researchers—An Emerging Challenge for Journals? Learned Publishing, 38: e2009. https://doi.org/10.1002/leap.2009

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