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

Author: Pär Segerdahl (Page 3 of 40)

Living with rheumatoid arthritis: how do patients perceive their interaction with healthcare and a self-care app?

Not all diseases can be cured, but medication along with other measures can alleviate the symptoms. Rheumatoid arthritis is one such disease. Medicines for symptoms such as swellings and stiffness have become very effective. As a patient, you can find good ways to live with the disease, even if it can mean more or less regular contacts with healthcare (depending on how you are affected). Not only with the doctor who prescribes medication, but often with an entire healthcare team: doctor, nurse, physiotherapist, occupational therapist and counselor. There are aids that make everyday life easier, such as orthopedic shoes, splints and easier-to-grip faucets at home, and many hospitals also offer patients education about the disease and how you can live and function with it, at home as well as at work.

The symptoms vary, not only between individuals but also for the same individual over time. The need for care and support is thus individual and changing. Therefore, it is important that the interaction between patient and healthcare works efficiently and with sensitivity to the patient’s unique situation at the moment. Since patients to a great extent have to deal with their illness on their own, and over time become increasingly knowledgeable about their own disease, it is important to listen to the patient. Not only to improve the patient’s experience of healthcare, but also to ensure that individual patients receive the care and support they need at the right moment. The patient may not be part of the healthcare team, but is still one of the most important team players.

There are digital self-care applications for rheumatoid arthritis, where the patients who choose to use the tools can get advice and information about the disease, prepare for contacts with healthcare, and keep a digital logbook about their symptoms, experiences and lifestyle. Such digital self-care apps can be assumed to make patients even more knowledgeable about their own disease. The logbook contains relevant observations, which the patient can describe in the meetings with the healthcare provider. What an asset to the care team!

Given the importance of good continuous team play between patient and healthcare in diseases such as rheumatoid arthritis, it is important that researchers regularly examine how patients experience the interaction. Jennifer Viberg Johansson, Hanna Blyckert and Karin Schölin Bywall recently conducted an interview study with patients at various hospitals in Sweden. The aim was to investigate not only the patients’ experiences of the interaction with healthcare, but also their experiences of a digital self-care app, and how the app affected the communication between patient and doctor.

The patients’ perception of their interaction with healthcare varied greatly. About half felt prioritized and excellently supported by the healthcare team and half felt neglected, some even dehumanized. This may reflect how different hospitals have different resources and competencies for rheumatoid arthritis, but also unclear communication about what the patients can expect. Many patients found the self-care app both useful and fun to use, and a good support when preparing for healthcare visits. At the same time, these detailed preparations could lead to even greater disappointment when it was felt that the doctor was not listening and barely looking at the patient.

Collaborative teamwork and clear communication is identified in the study as important contributing factors to patients’ well-being and ability to manage their illness. The patients valued time for dialogue with the rheumatologist and appreciated when their personal observations of life with the disease were listened to. Because some of the interviewed patients had the negative experience that the doctor did not listen to the observations they had compiled in the app, the authors believe that the use of digital tools should be promoted by the healthcare system and there should be an agreement on how the tool should be used at meetings to plan care and support.

For more details about the patients’ experiences, read the article here: Experiences of individuals with rheumatoid arthritis interacting with health care and the use of a digital self-care application: a qualitative interview study.

The study emphasizes the importance of patient-centered care for individuals with rheumatoid arthritis, as well as the importance of considering patients’ psychological well-being alongside their physical health. An important point in the study could perhaps be summarized as follows: appreciate the patient as a skilled team player.

Pär Segerdahl

Written by…

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

Viberg Johansson J, Blyckert H, Schölin Bywall K. Experiences of individuals with rheumatoid arthritis interacting with health care and the use of a digital self-care application: a qualitative interview study. BMJ Open 2023;13:e072274. doi: 10.1136/bmjopen-2023-072274

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In dialogue with patients

Moral stress: what does the COVID-19 pandemic teach us about the concept?

Newly formed concepts can sometimes satisfy such urgent linguistic needs that they immediately seem completely self-evident. Moral stress is probably such a concept. It is not many decades old. Nevertheless, the concept probably appeared from the beginning as an all-too-familiar reality for many healthcare workers.

An interesting aspect of these immediately self-evident concepts is that they effortlessly find their own paths through language, despite our efforts to define the right path. They are simply too striking in living spoken language to be captured in the more rigid written language of definitions. However, the first definition of moral stress was fairly straightforward. This is how Andrew Jameton defined the concept:

“Moral distress arises when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action.”

Although the definition is not complicated in the written language, it still prevents the concept from speaking freely, as it wants to. For, do we not spontaneously want to talk about moral stress in other situations as well? For example, in situations where two different actions can be perceived as the right ones, but if we choose one action it excludes the other? Or in situations where something other than “institutional constraints” prevents the right course of action? Perhaps a sudden increase in the number of patients.

Here is a later definition of moral stress, which leaves more open (by Kälvemark, Höglund and Hansson):

“Traditional negative stress symptoms that occur due to situations that involve an ethical dimension where the health care provider feels he/she is not able to preserve all interests at stake.”

This definition allows the concept to speak more freely, in more situations than the first, although it is possibly slightly more complicated in the written language. That is of course no objection. A definition has other functions than the concept being defined, it does not have to be catchy like a song chorus. But if we compare the definitions, we can notice how both express the authors’ ideas about morality, and thus about moral stress. In the first definition, the author has the idea that morality is a matter of conscience and that moral stress occurs when institutional constraints of the profession prevent the practitioner from acting as conscience demands. Roughly. In the second definition, the authors have the idea that morality is rather a kind of balancing of different ethical values and interests and that moral stress arises in situations that prevent the trade-offs from being realized. Roughly.

Why do I dwell on the written and intellectual aspects of the definitions, even though it is hardly an objection to a definition? It has to do with the relationship between our words and our ideas about our words. Successful words find their own paths in language despite our ideas about the path. In other words: despite our definitions. Jameton both coined and defined moral (di)stress, but the concept almost immediately stood, and walked, on its own feet. I simply want to remind you that spoken-language spontaneity can have its own authority, its own grounding in reality, even when it comes to newly formed concepts introduced through definitions.

An important reason why the newly formed concept of moral stress caught on so immediately is probably that it put into words pressing problems for healthcare workers. Issues that needed to be noticed, discussed and dealt with. One way to develop the definition of moral stress can therefore be to listen to how healthcare workers spontaneously use the concept about situations they themselves have experienced.

A study in BMC Medical Ethics does just this. Together with three co-authors, Martina E. Gustavsson investigated how Swedish healthcare workers (assistants, nurses, doctors, etc.) described moral stress during the COVID-19 pandemic. After answering a number of questions, the participants were requested to describe, in a free text response, situations during the pandemic in which they experienced moral stress. These free text answers were conceptually analyzed with the aim of formulating a refined definition of moral stress.

An overarching theme in the free text responses turned out to be: being prevented from providing good care to needy patients. The healthcare workers spoke of a large number of obstacles. They perceived problems that needed to be solved, but felt that they were not taken seriously, that they were inadequate or forced to act outside their areas of expertise. What stood in the way of good care? The participants in the study spoke, among other things, about unusual conditions for decision-making during the pandemic, about tensions in the work team (such as colleagues who did not dare to go to work for fear of being infected), about substandard communication with the organizational management. All this created moral stress.

But they also talked about the pandemic itself as an obstacle. The prioritization of COVID-19 patients meant that other patients received worse care and were exposed to the risk of infection. The work was also hindered by a lack of resources, such as personal protective equipment, while the protective equipment prevented staff from comforting worried patients. The visiting restrictions also forced staff to act as guards against patients’ relatives and isolate infected patients from their children and partners. Finally, the pandemic prevented good end-of-life care. This too was morally stressful.

How can the healthcare workers’ free text responses justify a refined definition of moral stress? Martina E. Gustafsson and co-authors consider the definition above by Kälvemark, Höglund and Hansson as a good definition to start from. But one type of situation that the participants in the study described probably falls outside that definition, namely the situation of not being taken seriously, of feeling inadequate and powerless. The study therefore proposes the following definition, which includes these situations:

“Moral stress is the kind of stress that arises when confronted with a moral challenge, a situation in which it is difficult to resolve a moral problem and in which it is difficult to act, or feeling insufficient when you act, in accordance with your own moral values.”

Here, too, one can sense an idea of morality, and thus of moral stress. The authors think of morality as being about solving moral problems, and that moral stress arises when this endeavor encounters challenges, or when one feels inadequate in the attempts to solve the problems. The definition can be considered a refined idea of what moral stress is. It describes more precisely the relevant situations where healthcare workers spontaneously want to talk about moral stress.

Obviously, we can learn a lot about the concept of moral stress from the experience of the COVID-19 pandemic. Read the study here, which contains poignant descriptions of morally stressful situations during the pandemic: “Being prevented from providing good care: a conceptual analysis of moral stress among health care workers during the COVID-19 pandemic.”

Finally, I would like to mention two general lessons about language, which in my view the study highlights. The first is that we can learn a lot about our concepts through the difficulties of defining them. The study took this “definition resistance” seriously by listening to how healthcare workers spontaneously talk about moral stress. This created friction that helped refine the definition. The second lesson is that we often use words despite our ideas about what the words mean or should mean. Spoken language spontaneity has a natural weight and authority that we easily overlook, but from which we have much to learn – as in this empirical study.

Pär Segerdahl

Written by…

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

Gustavsson, M.E., von Schreeb, J., Arnberg, F.K. et al. “Being prevented from providing good care: a conceptual analysis of moral stress among health care workers during the COVID-19 pandemic”. BMC Med Ethics 24, 110 (2023). https://doi.org/10.1186/s12910-023-00993-y

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Minding our language

Research nurses on ethical challenges in recruiting participants for clinical research

In clinical research with participating patients, research nurses play a central role. On a daily basis, they balance the values of care and the needs of research. For these nurses, it is clear that patients’ informed consent for research participation is more than just a one-time event completed by signing the form. The written consent is the beginning of a long relationship with the patients. The process requires effective communication throughout the course of the study, from obtaining consent to subsequent interactions with patients related to their consent. The research nurses must continuously ensure that participating patients are well informed about how the study is progressing, that they understand any changes to the set-up or to the risks and benefits. If conditions change too much, a new consent may need to be obtained.

Despite research nurses being so deeply involved in the entire consent process, there is a lack of research on this professional group’s experiences of and views on informed consent. What problems and opportunities do they experience? In an interview study, Tove Godskesen, Joar Björk and Niklas Juth studied the issue. They interviewed 14 Swedish research nurses about ethical challenges related to the consent process and how the challenges were handled.

The challenges were mainly about factors that could threaten voluntariness. Informed consent must be given voluntarily, but several factors can threaten this ethically important requirement. The nurses mentioned a number of factors, such as rushed decision-making in stressful situations, excessively detailed information to patients, doctors’ influence over patients, and disagreement within the family. An elusive threat to voluntariness is patients’ own sometimes unrealistic hopes for therapeutic benefit from research participation. Why is this elusive? Because the hopes can make the patients themselves motivated to participate. However, if the hopes are unrealistic, voluntariness can be said to be undermined even if the patients want to participate.

How do the research nurses deal with the challenges? An important measure is to give patients time in a calm environment to thoughtfully consider their participation and discuss it. This also reduces the risk of participants dropping out of the study, reasoned the nurses. Time with the patients also helps the research nurses to understand the patients’ situation, so that the recruitment does not take place hastily and perhaps on the basis of unrealistic expectations, they emphasized. The interviewees also said that they have an important role as advocates for the patients. In this role, the nurses may need time to understand and more closely examine the patients’ perspectives and reasons for potentially withdrawing from the study, and to find suitable solutions. It can also happen that patients say no to participation even though they really want to, perhaps because they are overwhelmed by all the information that made participation sound complicated. Again, the research nurses may need to give themselves and the patients time for in-depth conversations, so that patients who want to participate have the opportunity to do so. Maybe it is not as complicated as it seemed?

Read the important interview study here: Challenges regarding informed consent in recruitment to clinical research: a qualitative study of clinical research nurses’ experiences.

The study also highlights another possible problem that the research nurses raised, namely the questionable exclusion of certain groups from research participation (such as people who have difficulty understanding Swedish or have reduced cognitive ability). Such exclusion can mean that patients who want to participate in research are not allowed to do so, that certain groups have less access to new treatments, and that the scientific quality of the studies is hampered.

Pär Segerdahl

Written by…

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

Godskesen, T., Björk, J. & Juth, N. Challenges regarding informed consent in recruitment to clinical research: a qualitative study of clinical research nurses’ experiences. Trials 24, 801 (2023). https://doi.org/10.1186/s13063-023-07844-6

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Ethics needs empirical input

Medical ethics conference in Uppsala, 10–11 June 2024

Since 2022, an annual conference in medical ethics is organized by Swedish universities. The first conference was organized by Lund University and the second by Karolinska Institutet. The next conference will be arranged on 10–11 June 2024 by us at the Centre for Research and Bioethics at Uppsala University. Conference names vary with the host university, our conference in June is thus named UMEC – Uppsala University Medical Ethics Conference.

We welcome researchers in medical ethics broadly conceived from Sweden as well as other countries, and oral presentations must be in English. If you would like to present your work at the conference, you are welcome to submit an abstract no later than March 31, 2024. We are interested in both normative approaches and empirical studies with normative relevance for issues in clinical ethics, public health ethics, research ethics and medical law.

We hope you want to attend the conference. You can find more information about the abstract and presentation as well as about the conference venue and travel options here: UMEC – Uppsala University Medical Ethics Conference.

Please note that the information is still incomplete and that more details will come as we get closer to the conference date.

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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We recommend conferences

How do we find out if drugs are safe for groups excluded from clinical trials?

Drug development requires that the drug is tested on patients in clinical trials. Not only the drug’s effectiveness is tested on the patients, but also its safety. Does the drug have serious side effects and what dosage is safe? Thanks to such clinical research, approved drugs can be provided with safety information, which enables doctors and patients to make informed decisions about drug treatment.

However, there are vulnerable groups that are often excluded from clinical studies, such as pregnant and breastfeeding women. But this protection of a vulnerable group can make the group extra vulnerable when deciding on drug treatment. If there is no evidence, it is not known whether the medicine the woman needs risks harming her, the fetus or the child being breastfed. It is also not known what dosage should be recommended. Perhaps the woman herself refrains from taking a medicine she needs, or receives advice from the doctor to refrain from it. Not because one knows that the medicine poses risks for the group, but because one does not know.

Are there other ways to obtain evidence on medicine safety for pregnant and breastfeeding women, besides clinical studies? Yes, there are, because pregnant and breastfeeding women must of course often use medication. Several registers already contain data from women who use medicines during pregnancy. In addition, pregnant and breastfeeding women using medicines may be engaged in additional data collection activities. Thus, there is already data as well as additional opportunities to collect data, without involving the group in clinical studies.

Josepine Fernow describes in Uppsala Reports such an attempt to compile existing data and expand the possibilities of collecting new data: the European project IMI ConcePTION. This project is developing several different paths towards better future safety information about drug treatment during pregnancy and breastfeeding. One challenge is to develop a technical infrastructure where data collected in different registers and in different formats are harmonized so that they can be collected and handled in standardized ways. Another challenge is to enable pregnant women to easily report relevant data about their medication use, for example via a mobile application. The project also tries to produce new data on breastfeeding and medicine use. For example, milk is collected and analyzed from breastfeeding women who use various medicines, in order to understand and predict how these medicines are transferred to the breast milk and in what concentration. Two of these breastfeeding studies are underway in Sweden. They are coordinated by CRB and we will write about them on this blog.

ConcePTION is also developing a knowledge bank that will be available online from the end of 2024, which will make the data and knowledge generated by the project useful. There are thus several avenues for research along which one can generate evidence for better safety information about various medicines for pregnant and breastfeeding women, without involving the group in clinical studies.

Read Josepine Fernow’s description of the project here: Making medicines safer for pregnant and breastfeeding women. There you will also find several links to the project and to the project’s publications.

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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Part of international collaborations

Neuroethics: don’t let the name fool you

Names easily give the impression that the named is something separate and autonomous: something to which you can attach a label. If you want to launch something and get attention – “here is something completely new to reckon with” – it is therefore a good idea to immediately create a new name that spreads the image of something very special.

Despite this, names usually lag behind what they designate. The named has already taken shape, without anyone noticing it as anything special. In the freedom from a distinctive designation, roots have had time to spread and branches to stretch far. Since everything that is given freedom to grow is not separate and autonomous, but rooted, interwoven and in exchange with its surroundings, humans eventually notice it as something interesting and therefore give it a special name. New names can thus give a misleading image of the named as newer and more separate and autonomous than it actually is. When the name arrives, almost everything is already prepared in the surroundings.

In an open peer commentary in the journal AJOB Neuroscience, Kathinka Evers, Manuel Guerrero and Michele Farisco develop a similar line of reasoning about neuroethics. They comment on an article published in the same issue that presents neuroethics as a new field only 15 years old. The authors of the article are concerned by the still unfinished and isolated nature of the field and therefore launch a vision of a “translational neuroethics,” which should resemble that tree that has had time to grow together with its surroundings. In the vision, the new version of neuroethics is thus described as integrated, inclusive and impactful.

In their commentary, Kathinka Evers and co-authors emphasize that it is only the label “neuroethics” that has existed for 15 years. The kind of questions that neuroethics works with were already dealt with in the 20th century in applied ethics and bioethics, and some of the conceptual problems have been discussed in philosophy since antiquity. Furthermore, ethics committees have dealt with neuroethical issues long before the label existed. Viewed in this way, neuroethics is not a new and separate field, but rather a long-integrated and cooperating sub-discipline to neuroscience, philosophy and bioethics – depending on which surroundings we choose to emphasize.

Secondly, the commentators point out, the three characteristics of a “translational neuroethics” – integration, inclusiveness and impact – are a prerequisite for something to be considered a scientific field. An isolated field that does not include knowledge and perspectives from surrounding sciences and areas of interest, and that lacks practical impact, is hardly what we see today as a research field. The three characteristics are therefore not entirely successful as a vision of a future development of neuroethics. If the field is to deserve its name at all, the characteristics must already permeate neuroethics. Do they do that?

Yes, say the commentators if I understand them correctly. But in order to see this we must not be deceived by the distinctive designation, which gives the image of something new, separate and autonomous. We must see that work on neuroethical issues has been going on for a long time in several different philosophical and scientific contexts. Already when the field got its distinctive name, it was integrated, inclusive and impactful, not least within the academically established discipline of bioethics. Some problematic tendencies toward isolation have indeed existed, but they were related to the distinctive label, as it was sometimes used by isolated groups to present their activities as something new and special to be reckoned with.

The open commentary is summarized by the remark that we should avoid the temptation to see neuroethics as a completely new, autonomous and separate discipline: the temptation that the name contributes to. Such an image makes us myopic, the commentators write, which paradoxically can make it more difficult to support the three objectives of the vision. It is both truer and more fruitful to consider neuroethics and bioethics as distinct but not separate fields. If this is true, we do not need to launch an even newer version of neuroethics under an even newer label.

Read the open commentary here: Neuroethics & bioethics: distinct but not separate. If you want to read the article that is commented on, you will find the reference at the bottom of this post.

Pär Segerdahl

Written by…

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

K. Evers, M. Guerrero & M. Farisco (2023) Neuroethics & Bioethics: Distinct but Not Separate, AJOB Neuroscience, 14:4, 414-416, DOI: 10.1080/21507740.2023.2257162

Anna Wexler & Laura Specker Sullivan (2023) Translational Neuroethics: A Vision for a More Integrated, Inclusive, and Impactful Field, AJOB Neuroscience, 14:4, 388-399, DOI: 10.1080/21507740.2021.2001078

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Minding our language

Two orientations of philosophical thought

There are many philosophical movements and several ways of dividing philosophy. I would like to draw attention to two orientations of philosophical thought that are never usually mentioned, but which I believe characterize philosophical thinking. Although unnamed, the two orientations are so different from each other that they can make philosophers roll their eyes when they run into each other: “What kind of nonsense is this?”

I am not referring to the division between analytic and continental philosophy, which is a known source of rolling eyes. I am referring to a division that rather applies to ourselves as thinking beings: our innermost philosophical disposition, so to speak.

So do not think of famous philosophers or of the philosophical movements they are considered to represent. Now it is just about ourselves. Think about what it is like to discuss a question that is felt to be urgent, for example: “Why has humanity failed to create a peaceful world?” How do we usually react to such questions? I dare say many of us wish we could answer them. This is the nature of a question. A question demands an answer, just as a greeting demands a greeting back. And since the answer to an important question should have the same urgency as the question, it feels very important to answer. This has the consequence that the discussion of the question soon turns into a discussion of several different answers, which compete with each other. Perhaps a few particularly committed participants argue among themselves for and against increasingly complicated answers at a speed that leaves the others behind. It feels humiliating to sit there and not be able to propose a single answer with accompanying arguments that it must be the right answer.

Many of us are probably also familiar with how afterwards, when we have time to think in peace and quiet, we can suddenly see possibilities that never occurred to us during the discussion: “So obvious! Why didn’t I see that?” When we are given time to think for ourselves, we are free from a limitation that governed the discussion. What limitation? The limitation that the question must be answered and the answer defended as the correct answer. Why were we so stimulated to find the answer to the question and defend it against the competitors? Was it a good question that gave rise to all these divergent answers, as if someone had thrown a match into a stockpile of fireworks? Already in its wording, the question blames humanity for not being able to resolve its conflicts. Is this not already a conflict? The question pits us against humanity, and when the answers and arguments start to hail, the debaters are also pitted against each other. The discussion becomes yet another example of our tendency to end up on different sides in conflicts.

If we notice how our noble philosophical discussion about world peace threatens to degenerate into the very strife we debate and we want to seek the answer in a more responsible way, then perhaps we decide to review the answers and arguments that have been piled up. We classify them as positions and schools of thought and practice identifying them to avoid well known fallacies, which are classified with equal philosophical rigor. In the future, this hard work will finally lead us to the definitively correct answer, we think. But the focus is still on the answers and the arguments, rather than on the question that ignited the entire discussion. The discussion continues to exemplify our tendency toward conflict, but now in terms of a rigorous philosophical classification of the various known positions on the issue.

The difference between the two orientations concerns where we place our emphasis: on the question or on the answer? Either we feel the question propels us, like a starting shot that makes us run for the answer at the finish line. The answer may be in terms of the human mind, the structure of society, our evolutionary history and much more. Or we feel the question paralyzes us, like an electric shock that numbs us so that we have to sit down at the starting line and examine the question. What already happened in the question? Am I not also humanity? Who am I to ask the question? Does not the question make a false distinction between me and humanity, similar to those made in all conflicts? Is that why I cannot discuss the question without becoming an example of the problem myself?

Consider the two philosophical orientations side by side. One of them experiences the question as a stimulating starting signal and runs for the answer. The other experiences the question as a numbing electric shock and remains seated at the starting line. It cannot surprise us that these two philosophical dispositions have difficulty understanding each other. If you emphasize the answer and run for it, stopping at the question seems not only irresponsible, but also unsportsmanlike and inhibiting. Is it forbidden to seek the right answer to urgent questions? If, on the other hand, you emphasize the question and stay seated at the starting line, it seems rash to run for the answer, even when the race follows a rigorously ordered pattern. Did not the starting shot go off too early so that the race should be declared invalid, even though it otherwise went according to the strict rules of the art?

When we consider the two orientations side by side, we can note another difference. Emphasizing the answer directs our attention to the subject of the question: “humanity throughout history.” Emphasizing the question directs our attention to the subject who asks it: to myself. Again, it can hardly surprise us that the two orientations have difficulty understanding each other. Both may seem to be avoiding the subject!

Here one might want to object that even this distinction between two philosophical orientations places people on different sides of a conflict. But maybe we can recognize ourselves in both tendencies, although we lean more in one direction? Is not philosophical thinking often a dialogue between these tendencies? Do we not become more peaceful when we see the two philosophical dispositions side by side? Perhaps we understand each other better when we see the possibility of emphasizing both the question and the answer. We suddenly realize why we sound so different when we philosophize, despite the fact that we are all thinking beings, and we no longer need to exclaim: “What kind of nonsense is this?”

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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Thinking about thinking

Ethics Council at Uppsala Region: Healthcare workers shouldn’t have to report undocumented patients

Last week, the Ethics Council in Region Uppsala sent a letter to the Ministry of Justice where the Council dissociates itself from a proposal in the Tidö Agreement, a political agreement between four parties in the Swedish Parliament. The part of the agreement that the Ethics Council dissociates itself from is a proposed obligation for healthcare professionals to report patients who are undocumented migrants to authorities.

The Ethics Council writes that such a duty would be in conflict with both international and national conventions and laws. It is also contrary to the ethics of all professions in healthcare and would entail a serious threat to patient safety. Healthcare workers have not signed up to enforce decisions on expulsion or refusal of entry. They are assigned to, and their expertise relates to, the assessment of patients’ needs and to provide the best available care with those needs as a starting point.

In a reflection on the Swedish healthcare legislation, the Ethics Council also writes that an obligation to report undocumented migrants is contrary to the principle of human dignity. The principle states that all human beings have equal value and the same right to care. This includes everyone, regardless of whether we have a right to stay in Sweden or not.

The Chair of the Ethics Council, Niklas Juth, today publishes a post in our Swedish language version of this blog which also contains the entire letter sent to the Ministry of Justice. If you read Swedish, you can find his blog post here: Etikrådet i Region Uppsala tar avstånd från förslaget om anmälningsplikt för vårdpersonal.

Pär Segerdahl

Written by…

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

We recommend readings

How clearly are ethical approval and informed consent reported in published articles?

In a scientific article, it is of course essential that the authors describe the aim, methods and results of the study. But all researchers also have a research ethical responsibility to reflect on ethical aspects of the work and to plan and carry out their studies in accordance with relevant laws and guidelines. The ethical approach in the study should also be described in the article. This description is not as extensive as the method description, but certain information about ethical approval and informed consent should be given with sufficient detail. If the study also entailed specific ethical challenges, perhaps because it involved vulnerable participants such as seriously ill or dying patients, then the article should report how the challenges were handled regarding, for example, obtaining informed consent.

Although scientific journals have the standard that information on ethical approval and informed consent must be declared, it is unclear how well this requirement is complied with in practice, by both authors and journal editors. A group of ethics researchers, including Tove Godskesen, William Bülow and Stefan Eriksson linked to CRB, recently investigated this question within a relevant field, namely research on palliative and end-of-life care. Patients who participate in such research can be considered vulnerable and research in this area involves particular ethical challenges. How well do scientific publications in the field meet the requirements for reporting ethical approval and informed consent?

The ethicists’ survey was conducted on 169 empirical studies in 101 journals, published after January 1, 2019. It was limited to studies conducted in Norway and Sweden, as the author group was well acquainted with the regulations and practices of ethical review in these countries and could therefore assess whether the articles contained information about relevant laws and authorities. To rate how well the articles reported ethical approval and consent, a scoring scale was created from 0 to 3. Articles with no reporting at all received a score of 0 and articles with minimal reporting (e.g., “Ethical approval was granted”) received a score of 1. If the article contained clear and concise statements about ethical approval and informed consent, and in addition included one piece of detailed information (such as the name of the committee or authority that gave the approval), then the article received a score of 2.

An original feature of the examination is the detailed requirements for obtaining the highest score. The requirements for scoring 3 are intended to also serve as a suggestion for best practice. They are proposed as a possible basis for clearer guidelines in the future for authors, journal editors and peer reviewers. What details must be reported to get the score 3? No irrelevant details, but perfectly reasonable information if you think about it. For example, the identity of the review board should be disclosed as well as the identification number of their decision. Why? To be able to contact the board for verification or questions, for readers to be able to see that the research complies with relevant laws and ethical guidelines, and for the public to be able to access the information. One should also mention the Act under to which the decision on ethical approval was made. Why? It shows that the researchers are ethically proficient and it helps editors and reviewers to compare the statements with legal requirements in doubtful cases. Regarding informed consent, one should state, among other things, what type of consent was obtained and from whom the consent was obtained. Why? So that one can assess whether the procedures meet ethical requirements in the current case. In palliative care research, for example, both the patients and their families can be involved in the consent process. Also for the informed consent, relevant legislation should be indicated to demonstrate awareness of legal requirements and to enable critical review.

The requirements are therefore about completely reasonable information that should be easy to provide. But what were the results of the survey? I content myself with reproducing the percentage of articles that received the lowest and the highest scores. A non-negligible proportion of the articles contained no reported information at all and got 0 points: 5% for ethical approval and 13% for informed consent. A larger but still small proportion of the articles reported sufficiently detailed information to receive the highest score: 27% for ethical approval and 19% for informed consent.

Considering that the requirements for the highest score can be considered reasonable and not particularly onerous, the results are disappointing. The substandard reporting creates uncertainty about the ethical rigor of studies, the authors write in their conclusion, which is particularly troubling for studies with vulnerable participants, such as patients in palliative and end-of-life care, who require special ethical considerations.

What can we do about the problem? A common measure is training in research ethics, which is of course important. But the authors suggest that a more effective way to quickly bring about change is for scientific journals to start making clearer demands on how ethical approval and informed consent must be reported in articles to be considered for publication. So why not use the requirements to get the highest score on this survey as a template? They are proposed as a reasonable description of best practice. Read the survey here: How do journals publishing palliative and end-of-life care research report ethical approval and informed consent?

In a box in the article, the authors cite an exemplary description of ethical approval and informed consent that includes the details for score level 3. It strikes me how clarifying it is to see a good example, so look for the box in the article.

Pär Segerdahl

Written by…

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

Godskesen, T., Vie, K.J., Bülow, W., Holmberg, B., Helgesson, G. and Eriksson, S. (2023), How do journals publishing palliative and end-of-life care research report ethical approval and informed consent? Learned Publishing. https://doi.org/10.1002/leap.1580

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Thinking about authorship

Data for gender equality in European research organizations

Inequality is not just a bad feeling that some may have, but a bad reality that we share. Especially in countries where gender equality work is not well established, it is important that inequality is not handled as a contested issue, but as a fact about which more knowledge should be sought. Who has the power over the criteria for what a successful researcher is and who has a better chance of succeeding? Which structures undermine or support gender equality? What does childcare look like? Are the research teams homogeneous and how does that affect the work? Where do women end up in the author order in scientific publications and where do they end up in the competition for research funds? Are there mechanisms and values in science that systematically make inequality invisible and prevent equality?

There is a will in the EU to improve gender equality in research organizations, especially in some of the Member States where gender equality work is particularly neglected. How can the necessary changes be brought about? In Sweden, all state universities are commissioned to collect data on (in)equality. Under the slogan “No data: No policies!” an EU project presents its approach to gender equality plans. The project, MINDtheGEPs, develops and implements gender equality plans in a collaboration between 7 European research organizations in 5 countries: Spain, Poland, Ireland, Italy and Serbia. The focus is on changing the organizations structurally and culturally and increasing women’s participation in research and innovation. The project is coordinated from the Center for Women’s and Gender Studies at the University of Turin. The work is supported by a further 4 organizations: the publishing house Elsevier in the Netherlands, the research organization Knowledge & Innovation in Italy, the National Research Council of Italy, and by the Centre for Research & Bioethics (CRB) at Uppsala University, which leads the communication work.

In the participating countries, there is a lack of sufficient data on factors behind equality and inequality, which means that those who suffer from inequality also suffer from not being seen. Therefore, it is important to carry out studies that map the problems. If the studies are also carried out in one’s own organization and one contributes to producing the data, this can further contribute to making the problems visible and motivating change. Therefore, the organizations in MINDtheGEPs collect data together to develop, adapt and support interventions at the local level. Behind the approach is a reasonable idea: if you cannot provide evidence of inequality, you will not get support to remedy the problems either. The project thus collects data on existing legislation and policy in the 5 countries, as well as data on the proportion of women in governing bodies at different levels, on the proportion of women who apply for and receive research support in competition, as well as data on the existence of gender equality measures. Surveys and interview studies are also carried out with researchers, administrative staff, rectors and vice rectors, department directors and other relevant actors. This large data collection and analysis is the basis for the 7 gender equality plans that are developed and implemented in MINDtheGEPs. Here you will find a presentation of the data collection.

If you want a summary of the work with evidence-based equality plans, you can read this policy brief from the project: No data: No policies! The MINDtheGEP’s approach to evidence-based policies for Gender Equality Plans. The document gives a brief account of structural and cultural measures that are recommended on the basis of the studies in various areas. It is about balance in recruitment and career progression and about balance between work and private life. It is about making gender equality issues visible in research and teaching, for example through courses that highlight gender as an important dimension in these activities. Finally, it is about changing the work in decision making bodies so that more women can reach higher positions within research organizations in the countries in the project collaboration.

The approach in MINDtheGEPs can probably inspire other organizations in addition to those included in the project, even organizations that do not work with research. This is also a thought behind the project. The hope is that the work of developing and implementing gender equality plans in a number of research organizations will influence the rest of society. Without data, gender inequality risks being made invisible as a bad feeling.

Pär Segerdahl

Written by…

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

Solera, Cristina, Balzano, Angela, Turco, Federica, Pisacane, Lucio, & Fernow, Josepine. (2023). No data: No policies! The MINDtheGEPs approach to evidence-based policies for Gender Equality Plans. Zenodo. https://doi.org/10.5281/zenodo.7785413

This post in Swedish

We want solid foundations

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