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

Category: In the research debate (Page 4 of 32)

A new project will explore the prospect of artificial awareness

The neuroethics group at CRB has just started its work as part of a new European research project about artificial awareness. The project is called “Counterfactual Assessment and Valuation for Awareness Architecture” (CAVAA), and is funded for a duration of four years. The consortium is composed of 10 institutions, coordinated by the Radboud University in the Netherlands.

The goal of CAVAA is “to realize a theory of awareness instantiated as an integrated computational architecture…, to explain awareness in biological systems and engineer it in technological ones.” Different specific objectives derive from this general goal. First, CAVAA has a robust theoretical component: it relies on a strong theoretical framework. Conceptual reflection on awareness, including its definition and the identification of features that allow its attribution to either biological organisms or artificial systems, is an explicit task of the project. Second, CAVAA is interested in exploring the connection between awareness in biological organisms and its possible replication in artificial systems. The project thus gives much attention to the connection between neuroscience and AI. Third, against this background, CAVAA aims at replicating awareness in artificial settings. Importantly, the project also has a clear ethical responsibility, more specifically about anticipating the potential societal and ethical impact of aware artificial systems.

There are several reasons why a scientific project with a strong engineering and computer science component also has philosophers on board. We are asked to contribute to developing a strong and consistent theoretical account of awareness, including the conceptual conceivability and the technical feasibility of its artificial replication. This is not straightforward, not only because there are many content-related challenges, but also because there are logical traps to avoid. For instance, we should avoid the temptation to validate an empirical statement on the basis of our own theory: this would possibly be tautological or circular.

In addition to this theoretical contribution, we will also collaborate in identifying indicators of awareness and benchmarks for validating the cognitive architecture that will be developed. Finally, we will collaborate in the ethical analysis concerning potential future scenarios related to artificial awareness, such as the possibility of developing artificial moral agents or the need to extend moral rights also to artificial systems.

In the end, there are several potential contributions that philosophy can provide to the scientific attempt to replicate biological awareness in artificial systems. Part of this possible collaboration is the fundamental and provoking question: why should we try to develop artificial awareness at all? What is the expected benefit, should we succeed? This is definitely an open question, with possible arguments for and against attempting such a grand accomplishment.

There is also another question of equal importance, which may justify the effort to identify the necessary and sufficient conditions for artificial systems to become aware, and how to recognize them as such. What if we will inadvertently create (or worse: have already created) forms of artificial awareness, but do not recognize this and treat them as if they were unaware? Such scenarios also confront us with serious ethical issues. So, regardless of our background beliefs about artificial awareness, it is worth investing in thinking about it.

Stay tuned to hear more from CAVAA!

Written by…

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

Part of international collaborations

Longer hospital stays can worsen self-injurious behaviour

Can a hospital stay make the disease worse? It sounds paradoxical, but of course it can occur as a result of, for example, misdiagnosis and negligence, or of overtreatment. When it comes to psychiatric illnesses and ailments, which are often sensitive to the interaction with the environment, it can be difficult to see how the situation at the hospital affects the illness. Therefore, it is important to be attentive.

A new study by Antoinette Lundahl, carried out together with Gert Helgesson and Niklas Juth, draws attention to the problem in the care of patients who self-harm. They did a survey with healthcare staff at psychiatric clinics in Stockholm. The respondents answered questions about experiences of care longer than a week with this patient group. A majority of the respondents believed that it had detrimental effects on self-injurious behaviour if the patients stayed longer than a week in their ward. They also considered that the patients often stayed too long in the ward and that the reasons for the extended length of stay were in several cases non-medical.

How are we to understand this? How might hospitalization increase the risk of the behaviour to be treated? In the discussion part of the article, various possible explanations are suggested, for example conflicts on the ward or that patients spread self-injurious behaviours to each other. Another possible explanation is that the hospital stay is used by the patient to transfer responsibility for handling painful feelings and thoughts to others. Such avoidance strategies only have a short-term effect and increase the pain in the long term. The self-injurious behaviour can be reinforced as a way to get more care and attention. A kind of “care addiction” develops in the patient, you could say.

How should we understand the extended hospital stays? The respondents mentioned several non-medical reasons, such as uncertainty about the patient’s housing, or that patients who look fragile or are assertive influence the staff to extend the length of care. Another reason for extended care times was assumed to be doctors’ fear of being held responsible for suicide or attempted suicide after discharge, a fear which paradoxically could increase the risk.

Read Antoinette Lundahl’s article here: Hospital staff at most psychiatric clinics in Stockholm experience that patients who self-harm have too long hospital stays, with ensuing detrimental effects.

Then you can also read more about the respondents’ suggestions for improvements, such as giving patients clear care plans with fixed discharge dates, short treatment times (a few days), and information about what is expected of them during the hospital stay. Better collaboration with outpatient care was also recommended, as well as more non-medical treatments in inpatient care.

Pär Segerdahl

Written by…

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

Antoinette Lundahl, Gert Helgesson & Niklas Juth (2022) Hospital staff at most psychiatric clinics in Stockholm experience that patients who self-harm have too long hospital stays, with ensuing detrimental effects, Nordic Journal of Psychiatry, 76:4, 287-294, DOI: 10.1080/08039488.2021.1965213

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We have a clinical perspective

What does it mean to prioritize patients according to severity?

How should patients be prioritized in health care? In many countries’ regulations, the answer to this question is formulated in terms of severity: the more severe the illness of a patient is, the higher the patient should be prioritized. Although other things may matter for health care priorities, such as cost-effectiveness, severity should be at least one of the criteria. But what makes an illness more severe than another? How should we compare patients in terms of severity?

A recently launched research project tries to tackle these issues. The project is a collaboration between CRB and The National Centre for Priorities in Health in Sweden at Linköping University. The issue of morally sound priority setting in health care is increasingly important and pressing, not least because of the continuing development of new treatments. We can do more for patients today than ever before, but these treatments compete for the limited resources of health care.

The purpose of the project is to make the vague and contested notion of severity more normatively robust and precise by investigating moral issues related to severity. If the concept of severity is to provide valid reasons for prioritization, we must first examine what we should mean by the concept in the context of disease and health care. For instance, there are different ideas about why severity should matter in health care priorities. One idea is that being more severely ill means being worse off than others and that this inequality is something bad. Another idea is that we have stronger reasons to help people the worse off they are, that is, some idea about the moral weight of evil. These different ideas have different implications for which patients to treat first.

There are also different notions about what features of a patient or illness makes that patient more severely ill. It could be quality of life, functioning, existential suffering, or length of life. A common intuition is that an illness with a prognosis of one year survival is more severe when it affects a 20-year old person than an 80-year old person, but that there is no difference in severity when the same illness affects people only ten years apart, say a 40-year old compared to a 50-year old. Together with Borgar Jølstad, I have investigated if this intuition holds up for closer scrutiny. Our conclusion is that it is doubtful. Read our article here: Age and Illness Severity: A Case of Irrelevant Utilities?

The project also looks into economic and legal issues. One economic issue is how different notions of severity affect the total health we can get out of the health care system with a limited budget. Legally, the issue is to what extent different notions of severity are compatible with existing regulations.

This was just a brief presentation of the new project. More posts on specific issues will come when we publish our studies in journals. Hopefully we can soon propose some well-argued answers on how to prioritize patients according to severity. If you want to know more about our basic perspective on some of the issues that will be investigated further, you can read this article: Severity as a Priority Setting Criterion: Setting a Challenging Research Agenda.

Niklas Juth

Written by

Niklas Juth, Professor of Clinical Medical Ethics at the Centre for Research Ethics & Bioethics (CRB)

Jølstad, B., & Juth, N. (2022). Age and Illness Severity: A Case of Irrelevant Utilities? Utilitas, 34(2), 209-224. doi:10.1017/S0953820822000024

Barra, M., Broqvist, M., Gustavsson, E. et al. Severity as a Priority Setting Criterion: Setting a Challenging Research Agenda. Health Care Analysis 28, 25–44 (2020). https://doi.org/10.1007/s10728-019-00371-z

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We want solid foundations

The branding of psychotherapy and responsible practice

Clinical psychologists receive degrees from universities, training them to effectively apply psychotherapy programs in psychiatry settings. But after graduation, whose responsibility is it to train, or perhaps re-train, clinical psychologists to practice “proper” therapy? Is it the responsibility of the owner of a three-letter branded protocol, such as DBT (Dialectical Behavior Therapy), SFT (Schema Focused Therapy) or MBSR (Metacognition Based Stress Reduction)? Or is it the responsibility of the health care systems that provide treatment? Perhaps they should ensure that a psychologist’s training is regularly updated, as in most other clinical professions?

As a clinical psychologist myself, with experience from practice in France, I want to address some challenges that I have experienced and reflected upon as I have tried to develop my own way of practicing therapy.

Medical training updates are widely encouraged for psychiatrists via the counting of credits for attending certified courses or international conferences (Continuing Medical Education Points). However, when it comes to clinical psychologists, the psychiatrists’ side-kicks offering psychotherapy treatment, there is no such unified system. Psychotherapy is in essence social work, and the success depends on the relationship between the therapist and the patient. But in many countries, particularly in the English speaking world, there is a tendency to brand specific therapeutic programs, such as the commonly known cognitive behavioral therapy, CBT, or versions of it such as dialectic behavioral therapy, DBT. Being “branded” as a psychotherapist comes with the advantage of being recurrently involved in seminars, training and follow-ups on our practice. But as a therapist, you are offering more than a program, you are offering years of experience and training. It is neither practical nor possible to “label” every little piece of training that made your practice look the way it does now. Yet psychotherapists face an entire branding system, with names such as DBT (Dialectical Behavioral Therapy), TFT (Transference Focused Therapy), SFT (Schema Focused Therapy) and MIT (Metacognition and Insight Therapy). All these names give structure, labels to refer to, which help both patients and colleagues to identify what happens in the therapy. But at the same time we might be confusing everyone involved with a jargon of acronyms. Depending on the cultural context, even using the word “client” instead of “patient” can be seen as subversive. The very idea that psychotherapy could be branded may appear strange and unusual. Are we considering the values at stake? Might not branding shift focus, from values of care towards economic considerations (such as selling your brand)? On the surface, it looks reasonable and as an approach that supports a fair distribution of care.

As an author of a CBT protocol myself, using a much longer acronym, ECCCLORE, I have been forced to question the underlying dynamic of naming or branding a particular kind of psychotherapy.  Like most of the CBT protocols, the effectiveness is in the structure of the protocol. Although I wanted to protect that structure, I did not want to rule out potential changes or improvements, but to make the protocol open to practitioners’ own experiences of using it with their patients. Therefore, I always encourage my students and colleagues to integrate the protocol with their own experiences, strengths and discoveries along the way.

Why? Well, because in using a protocol to engage with people in the intimate setting that psychotherapy is, we must also examine our values as caregivers, always considering the ethical principles of non-malevolence, respect and justice. And just as you must find your way to practice any branded therapy, you must find your way to observe these ethical principles in your work.

I was not harming my patients with the ECCCLORE protocol, but I created something that requires training to apply. Otherwise, like any mechanically applied protocol, it could potentially harm patients. Can that risk be overcome by adding another branded sub-protocol? There are already names all over the place in the CBT world. We all use “branded skills” such as Beck’s Columns and Padesky’s Polygram, and they are free to use, but they are just names for very commonly used tools, which we must again learn to use in practice.

When you dive into the specificity of “certified programs,” things start to become even more complicated. If I did not brand my project, anyone could use (or abuse) the ECCCLORE brand. For example, in France one needs to declare intellectual property in order to protect the project or research results from being stolen (as the research outcome is not considered the intellectual property of the researcher, as it is in Sweden). This means that anyone can use the name, even if it is unrelated to the CBT framework. But by acknowledging the creator’s intellectual property, it is possible for me to brand my own research protocol and evidence-based program, preventing misuse of the methods. But is it helping the replication and dissemination of the protocol? And if my ultimate goal is to offer the protocol to help as many patients as possible, is branding it the best solution?

I sensed an affinity between my own reflections and recent research that questioned the ethical guidelines for social justice work in psychology and outlined the need for social justice ethics. When I thought about branded CBT programs, I recognized ethical risks everywhere. If you pay a lot of money to be trained in Program A, you expect to be recognized as a Program A practitioner, and you expect to benefit from the specific expertise that you earned. Is it fair then to offer such services at premium prices? Or to refuse to have Program A training delivered to most of the clinical psychologists? Does it make the program more affordable and accessible to the patients in need of it? Is a society fair where most of the latest advances are not available to everyone, but only in private practice? Well, there are of course economic considerations, but on the clinical level it is not easy to sort out the pros and cons of these “acronymized” psychotherapies.

As a treatment developer, I do recognize that having a name to identify the program really helps. The social component of psychotherapy is known to be an important effectiveness factor. This was the case also for me. Avoiding any stigmatizing name of my therapeutic group, such as “Borderline Group,” was a move toward justice, respect and non-malevolence. I decided to create the acronym together with the first patient group, which helped create motivation and reflected the collaborative process. Because in therapy, it is the patients who have the most at stake. Along the way, I also had a chance to be trained in a manual-based psychotherapy, and I saw the advantages, as a clinician, to have a tribe supporting me as I entered their group. Branded evidence-based psychotherapies are organizing trainings and conferences, which offer many resources for their practitioners. They build up more and more specific results around subgroups of patients, and take responsibility for the full functioning of their practitioners.

Branded psychotherapies are probably here to stay, but I wanted to highlight some practical and ethical challenges that I have experienced and reflected upon as a treatment developer. Let me conclude with one final consideration about the future. In recent research on the effectiveness of personality disorder psychotherapy, the main factors were found to be the therapeutic attitude (active and collaborative) and the clarity of the protocol (the underlying theories). Future research may further investigate whether the branding of psychotherapies, which can be confusing, may also contribute to these factors.

Sylvia Martin

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

Sylvia Martin. (2022) Le programme ECCCLORE: Une nouvelle approche du trouble borderline. Deboeck Supérior.

In dialogue with patients

Misuse of co-authorship remains a problem despite educational measures

In science, correctly stated co-authorship is essential. Being transparent about who did what can be said to belong to the documentation of the research. Incorrectly stated co-authorship does not only give a distorted picture of the research, however. It also creates injustice between researchers and unfairly affects who gets employment or research grants. This also affects which research will be conducted and by whom.

There are internationally recommended rules for what counts as co-authorship, for example the Vancouver rules for medical publications. Despite the importance of correctly stated co-authorship, and despite international guidelines, several studies show that deviant practices are common. One way to deal with the problem is, of course, educational efforts. Doctoral students at medical faculties in Scandinavia increasingly receive instruction in publication ethics, and thus in these rules. Are the efforts effective?

Recently, results were published from an online survey aimed at people who have recently obtained a doctorate at medical faculties in Denmark, Norway and Sweden. The aim of the study was to explore experiences of and attitudes towards handling of authorship. Almost half of the respondents stated that the Vancouver rules were not fully respected in at least one of the studies included in the thesis. About a quarter of the respondents reported inappropriate handling of authorship order in at least one study. Nevertheless, the majority (96.7%) stated that it is important that the Vancouver rules are followed.

The study’s conclusion is that despite increased educational efforts in publication ethics at Scandinavian universities, the handling of co-authorship continues to be a problem in medical research. One can ask why the problem persists despite the efforts, and despite the positive attitude towards the authorship rules among the vast majority of respondents in the study.

In the discussion of the results, the authors suggest that it is probably not the doctoral students themselves who transgress the authorship rules, but supervisors and other more senior researchers, to whom the doctoral student is subordinate. The educational efforts thus miss a very relevant target group. The authors therefore mention a new trend at medical faculties in Sweden to introduce compulsory teaching in research ethics for supervisors of doctoral students. At the same time, they doubt the effectiveness of increased educational efforts alone, since authorship can be considered an academic currency. As long as authorship functions as a kind of career capital for researchers, deviant practices will remain common.

If you want to know more, read the study here: Misuse of co-authorship in Medical PhD Theses in Scandinavia: A Questionnaire Survey.

Then you can also read about another important result. A larger proportion of women responded that authorship order did not correctly reflect contribution in their thesis. A greater proportion of women also emphasized the importance of following the authorship rules. This may indicate that women are treated worse than men in matters of authorship and therefore place more importance on fair action, the authors suggest.

Pär Segerdahl

Written by…

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

Helgesson, G., Holm, S., Bredahl, L., Hofmann, B., Juth, N. Misuse of co-authorship in Medical PhD Theses in Scandinavia: A Questionnaire Survey. Journal of Academic Ethics (2022). https://doi.org/10.1007/s10805-022-09465-1

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We want to be just

Keys to more open debates

We are used to thinking that research is either theoretical or empirical, or a combination of theoretical and empirical approaches. I want to suggest that there are also studies that are neither theoretical nor empirical, even though it may seem unthinkable at first. This third possibility often occurs together with the other two, with which it is then interwoven without us particularly noticing it.

What is this third, seemingly unthinkable possibility? To think for yourself! Research rarely runs completely friction-free. At regular intervals, uncertainties appear around both theoretical and empirical starting points, which we have to clarify for ourselves. We then need to reflect on our starting points and perhaps even reconsider them. I am not referring primarily to how new scientific findings can justify re-examination of hypotheses, but to the continuous re-examinations that must be made in the research process that leads to these new findings. It happens so naturally in research work that you do not always think about the fact that you, as a researcher, also think for yourself, reconsider your starting points during the course of the work. Of course, thinking for yourself does not necessarily mean that you think alone. It often happens in conversations with colleagues or at research seminars. But in these situations there are no obvious starting points to start from. The uncertainties concern the starting points that you had taken for granted, and you are therefore referred to yourself, whether you think alone or with others.

This thinking, which paradoxically we do not always think we are doing, is rarely highlighted in the finished studies that are published as scientific articles. The final publication therefore does not give a completely true picture of what the research process looked like in its entirety, which is of course not an objection. On the contrary, it would be comical if autobiographical details were highlighted in scientific publications. There you cannot usually refer to informal conversations with colleagues in corridors or seminar rooms. Nevertheless, these conversations take place as soon as we encounter uncertainties. Conversations where we think for ourselves, even when it happens together. It would hardly be research otherwise.

Do you see how we ourselves get stuck in an unclear starting point when we have difficulty imagining the possibility of academic work that is neither theoretical nor empirical? We then start from a picture of scientific research, which focuses on what already completed studies look like in article form. It can be said that we start from a “façade conception” of scientific work, which hides a lot of what happens in practice behind the façade. This can be hard to come to terms with for new PhD students, who may think that researchers just pick their theoretical and empirical starting points and then elaborate on them. A PhD student can feel bad as a researcher, because the work does not match the image you get of research by reading finished articles, where everything seems to go smoothly. If it did, it would hardly be research. Yet, when seeking funding and ethics approval, researchers are forced to present their project plans as if everything had already gone smoothly. That is, as if the research had already been completed and published.

If what I am writing here gives you an idea of how easily we humans get stuck in unclear starting points, then this blog post has already served as a simple example of the third possibility. In this post, we think together, for ourselves, about an unclear starting point, the façade conception, which we did not think we were starting from. We open our eyes to an assumption which at first we did not see, because we looked at everything through it, as through the spectacles on the nose. Such self-examination of our own starting points can sometimes be the main objective, namely in philosophical studies. There, the questions themselves are already expressions of unclear assumptions. We get entangled in our starting points. But because they sit on our noses, we also get entangled in the illusion that the questions are about something outside of us, something that can only be studied theoretically and empirically.

Today I therefore want to illustrate how differently we can work as researchers. This by suggesting the reading of two publications on the same problem, where one publication is empirical, while the other is neither empirical nor theoretical, but purely philosophical. The empirical article is authored by colleagues at CRB; the philosophical article by me. Both articles touch on ethical issues of embryo donation for stem cell research. Research that in the future may lead to treatments for, for example, Parkinson’s disease.

The empirical study is an interview study with individuals who have undergone infertility treatment at an IVF clinic. They were interviewed about how they viewed leftover frozen embryos from IVF treatment, donation of leftover embryos in general and for cell-based treatment of Parkinson’s disease in particular, and much more. Such empirical studies are important as a basis for ethical and legal discussions about embryonic stem cell research, and about the possibility of further developing the research into treatments for diseases that today lack effective treatments. Read the interview study here: Would you consider donating your left-over embryos to treat Parkinson’s disease? Interviews with individuals who underwent IVF in Sweden.

The philosophical study examines concerns about exploitation of embryo donors to stem cell research. These concerns must be discussed openly and conscientiously. But precisely because issues of exploitation are so important, the debate about them risks being polarized around opposing starting points, which are not seen and cannot be reconsidered. Debates often risk locking positions, rather than opening our minds. The philosophical study describes such tendencies to be misled by our own concepts when we debate medical research, the pharmaceutical industry and risks of exploitation in donation to research. It wants to clarify the conditions for a more thoughtful and open discussion. Read the philosophical study here: The Invisible Patient: Concerns about Donor Exploitation in Stem Cell Research.

It is easy to see the relevance of the empirical study, as it has results to refer to in the debate. Despite the empirical nature of the study, I dare to suggest that the researchers also “philosophized” about uncertainties that appeared during the course of the work; that they thought for themselves. Perhaps it is not quite as easy to see the relevance of the purely philosophical study, since it does not result in new findings or normative positions that can be referred to in the debate. It only helps us to see how certain mental starting points limit our understanding, if they are not noticed and re-examined. Of what use are such philosophical exercises?

Perhaps the use of philosophy is similar to the use of a key that fits in the lock, when we want to get out of a locked room. The only thing is that in philosophy we often need the “key” already to see that we are locked up. Philosophical keys are thus forged as needed, to help us see our attachments to unclear starting points that need to be reconsidered. You cannot refer to such keys. You must use them yourself, on yourself.

While I was writing this “key” post, diligent colleagues at CRB published another empirical study on the use of human embryonic stem cells for medical treatments. This time an online survey among a random selection of Swedish citizens (reference and link below). The authors emphasize that even empirical studies can unlock polarized debates. This by supplementing the views of engaged debaters, who can sometimes have great influence, with findings on the views of the public and affected groups: voices that are not always heard in the debate. Empirical studies thus also function as keys to more open and thoughtful discussions. In this case, the “keys” are findings that can be referred to in debates.

– Two types of keys, which can contribute in different ways to more open debates.

Pär Segerdahl

Written by…

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

Bywall, K.S., Holte, J., Brodin, T. et al. Would you consider donating your left-over embryos to treat Parkinson’s disease? Interviews with individuals that underwent IVF in Sweden. BMC Med Ethics 23, 124 (2022). https://doi.org/10.1186/s12910-022-00864-y

Segerdahl, P. The Invisible Patient: Concerns about Donor Exploitation in Stem Cell Research. Health Care Analysis 30, 240–253 (2022). https://doi.org/10.1007/s10728-022-00448-2

Grauman, Å., Hansson, M., Nyholm, D. et al. Attitudes and values among the Swedish general public to using human embryonic stem cells for medical treatment. BMC Med Ethics 23, 138 (2022). https://doi.org/10.1186/s12910-022-00878-6

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We recommend readings

Predatory conferences

If you are an academic, you have probably noticed that you are getting more and more unexpected invitations via e-mail to participate as a speaker in what are presented as scientific conferences. The invitations can be confusing, as they are often not even in your subject area. But sometimes they get it right and maybe even mention your latest publication, which is praised in general terms. What is happening?

Publication ethics is one of many research areas at CRB. In recent years, we have researched (and blogged about) so-called predatory journals, which can lure academics to publish their studies in them for a considerable fee, which will make the article openly available to readers. Open access is an important trend in science, but here it is exploited for profit without regard for academic values. Predatory journals are often generously multidisciplinary and the promised “effective” peer review is just as generous, in order to capture as many paying authors as possible.

The steady stream of conference invitations to academics reflects the same dubious type of activity, but here the profit comes from conference fees and sometimes also from arranging accommodation. Within publication ethics, one therefore also speaks of predatory conferences. What do we know about these conferences? Is there any research on the phenomenon?

The first systematic scoping review of scholarly peer-reviewed literature on predatory conferences was recently published in BMJ Open. The overview was made by four researchers, Tove Godskesen and Stefan Eriksson at CRB, together with Marilyn H Oermann and Sebastian Gabrielsson.

The review showed that the literature on predatory conferences is small but growing, 20 publications could be included. Almost all of the literature in the review described characteristics that may define predatory conferences. The most cited characteristic was the spam email invitations, with flattering language that could contain grammatical errors and be non-scientific. Another distinguishing feature described was that the organization hosting the conference was unknown and used copied pictures without permission. Finally, high fees, lack of peer review, and multidisciplinary scope were also mentioned.

Why do researchers sometimes attend predatory conferences? Possible reasons cited in the literature were the focus on quantity in academic research dissemination, falling victim to misleading information, or the attractive and exotic locations where these conferences are sometimes held. The easy submission and review process and the opportunity to participate as a chair or invited speaker were also mentioned as possible attractions. Personal characteristics such as inexperience, naivety, ignorance, vanity and indifference were also mentioned.

Consequences of attending predatory conferences were described in only one of the publications, an interview study with conference participants. Their stories were marked by disappointments of various kinds. Small overcrowded conference rooms, poorly organized conference facilities, deviations from the conference program that could be reduced by a whole day, reputable keynote speakers announced in the program were absent, and the organizers were hard to reach as if the whole event was remote controlled. Participants were sometimes forced to book their accommodation through the organizers at double cost, and they could also experience that the organizers stole their identities by using their pictures and personal information as if they were part of the conference team. Many participants were so disappointed that they left the conferences early, feeling like they never wanted to attend any conferences again.

The literature also suggested various countermeasures. Among other things, education for all researchers and mentoring of junior academics, published lists of predatory conferences and their organizers, accreditation systems for conferences, and checklists to help identifying predatory conferences. It was also stated that universities and research funders should review their ways of assessing the qualifications of researchers seeking employment, promotion or funding. Attending predatory conferences should not be an asset.

For more details and discussion, read the systematic review here: Predatory conferences: a systematic scoping review.

Another countermeasure mentioned in the literature was more research on predatory conferences. This is also a conclusion of the overview: both empirical and analytical research should be encouraged by funders, journals and research institutions.

Hopefully, these staged conference rooms will soon be empty.

Pär Segerdahl

Written by…

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

Godskesen T, Eriksson S, Oermann MH, et al. Predatory conferences: a systematic scoping review. BMJ Open 2022;12:e062425. doi: 10.1136/bmjopen-2022-062425

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We want solid foundations

Does public health need virtue ethics?

So-called virtue ethics may seem too inward-looking to be of any practical use in a complex world. It focuses on good character traits of a morally virtuous person, such as courage, sincerity, compassion, humility and responsibility. It emphasizes how we should be rather than how we should act. How can we find effective guidance in such “heroic” ethics when we seek the morally correct action in ethically difficult situations, or the correct regulation of various parts of the public sector? How can such ancient ethics provide binding reasons for what is morally correct? Humbly referring to one’s superior character traits is hardly the form of a binding argument, is it?

It is tempting to make fun of the apparently ineffective virtue ethics. But it has, in my view, two traits of greatest importance. The first is that it trusts the human being: in actual situations we can see what must be done, and what must be carefully considered. The second is that virtue ethics thus also supports our freedom. A virtuous person does not need to cling to standards of good behavior to avoid bad behavior, but will spontaneously behave well: with responsibility, humility, compassion, etc. So a counter-question could be: What good will it be for someone to gain a whole world of moral correctness, yet forfeit themselves and their own freedom? – This was a personal introduction to today’s post.

In an article in Public Health Ethics, Jessica Nihlén Fahlquist discusses public health as a domain of work where moral virtues may need to be developed and supported in the professionals. Unlike medical care, public health focuses on good and equal health in entire risk groups and populations. Due to this more universal perspective of collective health, there can be a risk that the interests, rights and values ​​of individuals are sometimes overlooked. The work therefore needs to balance the general public health objectives against the values ​​of individuals. This may require a well-developed sensitivity, which can be understood in terms of virtue ethics.

Furthermore, public health is often characterized by a greater distance between professionals and the public than in medical care, where the one-on-one meeting with the patient supports a caring attitude in the clinician towards the individual. Imagination and empathy may therefore be needed in public health to assess the needs of individuals and the effects of the work on individuals. Finally, there is power asymmetry between public health professionals and the people affected by the public health work. This requires responsibility on the part of those who use the resources and knowledge that public health authorities possess. This can also be understood in terms of virtue ethics.

Jessica Nihlén Fahlquist emphasizes three virtues that she argues are needed in public health: responsibility, compassion and humility. She concretises the virtues through three ideals to personally strive for in public health. The ideals are described in short italicized paragraphs, which provide three understandable profiles of how a responsible, compassionate and humble person should be in their work with public health – three clear role models.

The ethical problems are made concrete through two examples, breastfeeding and vaccination, which illustrate challenges and opportunities for virtue ethics in public health work. Read the article here: Public Health and the Virtues of Responsibility, Compassion and Humility.

Jessica Nihlén Fahlquist does not rule out the importance of other moral philosophical perspectives in public health. But the three virtue ethical ideals (and probably also other similar ideals) should complement the prevailing perspectives, she argues. Everything has its place, but finding the right place may require good character traits!

If you would also like to read a more recent and shorter discussion by Jessica Nihlén Fahlquist on these important issues, you will find a reference below.

Pär Segerdahl

Written by…

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

Jessica Nihlén Fahlquist, Public Health and the Virtues of Responsibility, Compassion and Humility, Public Health Ethics, Volume 12, Issue 3, November 2019, Pages 213–224, https://doi.org/10.1093/phe/phz007

Jessica Nihlén Fahlquist, Individual Virtues and Structures of Virtue in Public Health, Public Health Ethics, Volume 15, Issue 1, April 2022, Pages 11–15, https://doi.org/10.1093/phe/phac004

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We like challenging questions

Data sharing in genomics: proposal for an international Code of Conduct

In genomics, not only individual genes are studied, but the entire genome. Such studies handle and analyse large amounts of data and are becoming increasingly common internationally. One of the challenges is managing the sharing of data between countries around the world. In addition to data protection legislation varying internationally, there are concerns that researchers and research participants from low- and middle-income countries may be exploited or disadvantaged in these exchanges.

Lawyers and bioethicists have therefore called for an international Code of Conduct for data sharing in genomics. A proposal for such a code was recently published in an article in Developing World Bioethics. The article, written by Amal Matar and nine co-authors, describes the process of developing the Code of Conduct and concludes with a nearly 4-page proposal.

The Code of Conduct is intended for researchers and other actors responsible for data management in international genomic research. The code lists ten ethical principles of direct relevance to data sharing. Next, best practices are described in 23 Articles covering seven areas: Data governance system; Data collection; Data storage; Data sharing, transfer and access; Compelled disclosure; Data handling from low- and middle-income countries; Public and community engagement.

Read the article with the proposal for a Code of Conduct here: A proposal for an international Code of Conduct for data sharing in genomics.

Pär Segerdahl

Written by…

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

Matar, A., Hansson, M., Slokenberga, S., Panagiotopoulos, A., Chassang, G., Tzortzatou, O., Pormeister, K., Uhlin, E., Cardone, A., & Beauvais, M. (2022). A proposal for an international Code of Conduct for data sharing in genomics. Developing World Bioethics, 1– 14. https://doi.org/10.1111/dewb.12381

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We recommend readings

Patient views on treatment of Parkinson’s disease with embryonic stem cells

Stem cells taken from human embryos very early after fertilization can be grown as embryonic stem cell lines. These embryonic stem cells are called pluripotent, as they can differentiate into virtually all of the body’s cell types (without being able to develop into an individual). The medical interest in embryonic stem cells is related to the possibility of using them to regenerate damaged tissue. One disease one hopes to be able to develop stem cell treatment for is Parkinson’s disease.

In Sweden, it is permitted to use leftover donated embryos from IVF treatment for research purposes. However, not to produce medical products. The path towards possible future treatments is lined with legal and ethical uncertainties. In addition, the moral status of the embryo has been debated for a very long time, without any consensus on the matter being reached.

In this situation, studies of people’s perceptions of the use of human embryonic stem cells for the development of medical treatments become urgent. Recently, the first study of the perceptions of patients, the group that can become recipients, was published. It is an interview study with seventeen patients in Sweden who have Parkinson’s disease. Author is Jennifer Drevin along with six co-authors.

The interviewees were generally positive about using human embryonic stem cells to treat Parkinson’s disease. They did not regard the embryo as a life with human rights, but at the same time they saw the embryo as something special. It was considered that the embryo has great value for the couple who want to become parents and emphasized the importance of the woman’s or the couple’s free and informed consent to donation. As patients, they expressed interest in a treatment that did not limit everyday life through, for example, complicated daily medication. They were interested in better cognitive and communicative abilities and wanted to be more independent: not having to ask family members for support in everyday tasks. The effectiveness of the treatment was considered important and there was concern that stem cell treatment might not be effective enough, or have side effects.

Furthermore, concerns were expressed that donors could be exploited, for example poor and vulnerable groups, and that financial compensation could have negative effects. Allowing donation only of leftover embryos from IVF treatment was considered reassuring, as the main purpose would not be to make money. Finally, there was concern that the pharmaceutical industry would not always prioritize the patient over profit and that expensive stem cell treatments could lead to societal and global injustices. Suspicions that companies will not use embryos ethically were expressed, and some felt that it was more problematic to make a profit on products from embryos than on other medical products. Transparency around the process of developing and using medical stem cell products was considered important.

If you want to see more results, read the study here: Patients’ views on using human embryonic stem cells to treat Parkinson’s disease: an interview study.

It can be difficult to draw general conclusions from the study and the summary above reproduces some of the statements in the interviews. We should, among other things, keep in mind that the interviews were conducted with a small number of patients who themselves have the disease and that the study was conducted in Sweden. The authors emphasize that the study can help clinicians and researchers develop treatments in ways that take into account patients’ needs and concerns. A better understanding of people’s attitudes can also contribute to the public debate and support the development of policy and legislation.

Pär Segerdahl

Written by…

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

Drevin, J., Nyholm, D., Widner, H. et al. Patients’ views on using human embryonic stem cells to treat Parkinson’s disease: an interview study. BMC Med Ethics 23, 102 (2022). https://doi.org/10.1186/s12910-022-00840-6

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In dialogue with patients

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