The Ethics Blog

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

Author: Pär Segerdahl (Page 5 of 40)

Philosophers in democratic conversations about ethics, research and society

Amphi theatre, Photo by elCarito on Unsplash
7 March, 2023 / / 1 Comment

Philosophers have an ambiguous position in the knowledge society which could support democratic conversations where truth and openness are united. On the one hand, philosophers are driven by a strong desire for the truth. They ask questions more often than they give answers, and they do not give answers until they have thoroughly explored the questions and judged that they can establish the truth, to speak a little pompously. On the other hand, philosophers cannot communicate their conclusions to society with the same authority that empirical scientists can communicate their findings. Philosophical reasoning, however rigorous it may appear to be, does not function as scientific evidence. It would be doubtful if a philosopher said, “A very clear reasoning which I recently carried out shows that…,” and expected people to accept the conclusion, as we expect people to accept the results of empirical studies.

Despite their strong desire to find the truth, philosophers can thus rarely “inform” about the truths they believe they have found, but must exercise restraint and present these truths as proposals, and then appeal to their interlocutors to judge the proposal for themselves. That is, to think for themselves. The desire to communicate one’s philosophical conclusions to others thus results in conversations on more or less equal terms, where more or less clear reasoning is developed together during the course of the conversation. The philosopher’s ambiguous position in the knowledge society can here act as a catalyst for conversations where the aspiration to think correctly, and the will to think freely, support each other.

The ambiguous position of philosophy in the knowledge society is evident in medical ethics, because here philosophy is in dialogue with patients, healthcare professionals and medical researchers. In medical ethics, there are sometimes so-called “ethics rounds,” where an ethicist visits the hospital and discusses patient cases with the staff from ethical perspectives. The role of the ethicist or philosopher in these conversations is not to draw the correct ethical conclusions and then inform the staff of the morally right thing to do. By striving for truth and by asking questions, the philosopher rather supports the staff’s own ethical reasoning. Of course, one or another of the philosopher’s own conclusions can be expressed in the conversation, but as a suggestion and as an invitation to the staff to investigate for themselves whether it can be so. Often the most important thing is to identify the crucial issues. The philosopher’s ambiguous standing can in these contexts act as a catalyst for good conversations.

Another area where the ambiguous position of philosophy in the knowledge society is evident is in research communication of ethics research, like the one we do here at CRB. Ethicists sometimes conduct empirical studies of various kinds (surveys, interviews and experiments). They can then naturally expect people (the general public or relevant groups) to take the results to heart. But these empirical studies are usually done to shed light on some ethical difficulty and to draw ethical, normative conclusions on good grounds. Again, these conclusions can rarely be communicated as research findings, so the communicator also has to exercise restraint and present the conclusions as relevant proposals to continue thinking and talking about. Research communication becomes not only informative and explanatory, but also thoughtful. It appeals to people to think for themselves. Awareness of the ambiguous position of philosophy can thus support research communication that raises open questions, in addition to disseminating and explaining scientific findings.

Since political conclusions based on scientific studies seem to have a similar ambiguous status to ethical and philosophical conclusions, philosophy could also inspire wiser democratic conversations about how research should be implemented in society. This applies not least to controversial issues, which often polarize and encourage debaters to make strong claims to possess the best evidence and the most rigorous reasoning, which they believe justifies their positions. But such a truth authority on how we should live and organize society hardly exists, even if we strive for the truth. As soon as we talk to each other, we can only make suggestions and appeal to our interlocutors to judge the matter for themselves, just as we ourselves listen to our interlocutors’ objections, questions and suggestions.

Strong pursuit of truth requires great openness. When we philosophize, these aspects are at best united. In this way, philosophy could inspire democratic conversations where people actually talk to each other and seek the truth together. Not just make their voices heard.

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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Longer hospital stays can worsen self-injurious behaviour

21 February, 2023 / / 1 Comment

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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Misuse of co-authorship remains a problem despite educational measures

open books
31 January, 2023 / / 1 Comment

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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Keys to more open debates

A key in a door sightly ajar
24 January, 2023 / / 1 Comment

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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Predatory conferences

Empty rows of chairs in conference room
13 December, 2022 / / 1 Comment

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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Does public health need virtue ethics?

vaccination
6 December, 2022 / / 1 Comment

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

22 November, 2022 / / 1 Comment

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

15 November, 2022 / / 1 Comment

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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A charming idea about consciousness

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8 November, 2022 / / 0 Comments

Some ideas can have such a charm that you only need to hear them once to immediately feel that they are probably true: “there must be some grain of truth in it.” Conspiracy theories and urban myths probably spread in part because of how they manage to charm susceptible human minds by ringing true. It is said that even some states of illness are spread because the idea of ​​the illness has such a strong impact on many of us. In some cases, we only need to hear about the diagnosis to start showing the symptoms and maybe we also receive the treatment. But even the idea of diseases spread by ideas has charm, so we should be on our guard.

The temptation to fall for the charm of certain ideas naturally also exists in academia. At the same time, philosophy and science are characterized by self-critical examination of ideas that may sound so attractive that we do not notice the lack of examination. As long as the ideas are limited hypotheses that can in principle be tested, it is relatively easy to correct one’s hasty belief in them. But sometimes these charming ideas consist of grand hypotheses about elusive phenomena that no one knows how to test. People can be so convinced by such ideas that they predict that future science just needs to fill in the details. A dangerous rhetoric to get caught up in, which also has its charm.

Last year I wrote a blog post about a theory at the border between science and philosophy that I would like to characterize as both grand and charming. This is not to say that the theory must be false, just that in our time it may sound immediately convincing. The theory is an attempt to explain an elusive “phenomenon” that perplexes science, namely the nature of consciousness. Many feel that if we could explain consciousness on purely scientific grounds, it would be an enormously significant achievement.

The theory claims that consciousness is a certain mathematically defined form of information processing. Associating consciousness with information is timely, we are immediately inclined to listen. What type of information processing would consciousness be? The theory states that consciousness is integrated information. Integration here refers not only to information being stored as in computers, but to all this diversified information being interconnected and forming an organized whole, where all parts are effectively available globally. If I understand the matter correctly, you can say that the integrated information of a system is the amount of generated information that exceeds the information generated by the parts. The more information a system manages to integrate, the more consciousness the system has.

What, then, is so charming about the idea that ​​consciousness is integrated information? Well, the idea might seem to fit with how we experience our conscious lives. At this moment you are experiencing multitudes of different sensory impressions, filled with details of various kinds. Visual impressions are mixed with impressions from the other senses. At the same time, however, these sensory impressions are integrated into a unified experience from a single viewpoint, your own. The mathematical theory of information processing where diversification is combined with integration of information may therefore sound attractive as a theory of consciousness. We may be inclined to think: Perhaps it is because the brain processes information in this integrative way that our conscious lives are characterized by a personal viewpoint and all impressions are organized as an ego-centred subjective whole. Consciousness is integrated information!

It becomes even more enticing when it turns out that the theory, called Integrated Information Theory (IIT), contains a calculable measure (Phi) of the amount of integrated information. If the theory is correct, then one would be able to quantify consciousness and give different systems different Phi for the amount of consciousness. Here the idea becomes charming in yet another way. Because if you want to explain consciousness scientifically, it sounds like a virtue if the theory enables the quantification of how much consciousness a system generates. The desire to explain consciousness scientifically can make us extra receptive to the idea, which is a bit deceptive.

In an article in Behavioral and Brain Sciences, Björn Merker, Kenneth Williford and David Rudrauf examine the theory of consciousness as integrated information. The review is detailed and comprehensive. It is followed up by comments from other researchers, and ends with the authors’ response. What the three authors try to show in the article is that even if the brain does integrate information in the sense of the theory, the identification of consciousness with integrated information is mistaken. What the theory describes is efficient network organization, rather than consciousness. Phi is a measure of network efficiency, not of consciousness. What the authors examine in particular is that charming feature I just mentioned: the theory can seem to “fit” with how we experience our conscious lives from a unified ego-centric viewpoint. It is true that integrated information constitutes a “unity” in the sense that many things are joined in a functionally organized way. But that “unity” is hardly the same “unity” that characterizes consciousness, where the unity is your own point of view on your experiences. Effective networks can hardly be said to have a “viewpoint” from a subjective “ego-centre” just because they integrate information. The identification of features of our conscious lives with the basic concepts of the theory is thus hasty, tempting though it may be.

The authors do not deny that the brain integrates information in accordance with the theory. The theory mathematically describes an efficient way to process information in networks with limited energy resources, something that characterizes the brain, the authors point out. But if consciousness is identified with integrated information, then many other systems that process information in the same efficient way would also be conscious. Not only other biological systems besides the brain, but also artifacts such as some large-scale electrical power grids and social networks. Proponents of the theory seem to accept this, but we have no independent reason to suppose that systems other than the brain would have consciousness. Why then insist that other systems are also conscious? Well, perhaps because one is already attracted by the association between the basic concepts of the theory and the organization of our conscious experiences, as well as by the possibility of quantifying consciousness in different systems. The latter may sound like a scientific virtue. But if the identification is false from the beginning, then the virtue appears rather as a departure from science. The theory might flood the universe with consciousness. At least that is how I understand the gist of ​​the article.

Anyone who feels the allure of the theory that consciousness is integrated information should read the careful examination of the idea: The integrated information theory of consciousness: A case of mistaken identity.

The last word has certainly not been said and even charming ideas can turn out to be true. The problem is that the charm easily becomes the evidence when we are under the influence of the idea. Therefore, I believe that the careful discussion of the theory of consciousness as integrated information is urgent. The article is an excellent example of the importance of self-critical examination in philosophy and science.

Pär Segerdahl

Written by…

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

Merker, B., Williford, K., & Rudrauf, D. (2022). The integrated information theory of consciousness: A case of mistaken identity. Behavioral and Brain Sciences, 45, E41. doi:10.1017/S0140525X21000881

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Responses of Italian residents to public health measures during the 2020 pandemic spring

English and Italian sign on beach asking not to form gatherings
1 November, 2022 / / 1 Comment

Italy was the first country in Europe to be hit hard by the Covid-19 pandemic. It started mainly in the northern regions, but soon the same public health measures were introduced throughout the country. Commercial and social activities were closed, as were schools and universities. Only points of sale that were deemed necessary were allowed to remain open, such as pharmacies, grocery stores and newsstands. It became forbidden to move outdoors except for certain purposes.

How did people react to the measures? During the late spring and early summer of 2020, an in-depth interview study was conducted with a number of Italian residents of different gender, age, education and home region. The study was recently published as an article by Virginia Romano, Mirko Ancillotti, Deborah Mascalzoni and Roberta Biasiotto. The interviews touched on everyday life during the lockdown as well as perceptions of the public health measures, but also possible priority-setting criteria in intensive care were discussed, as well as views on how the media and information worked.

Several participants described how, after an initial difficulty in understanding and accepting the changes, they soon adapted. Their fear decreased and routines for working from home were established. They began to appreciate increased time with family and a lifestyle with less travel and stress. On the other hand, it was perceived that the public health measures, with their many rules to follow, created a distinction between “us” and “them.” Participants expressed that they began to observe and blame others for not following the rules, while at the same time feeling themselves observed and blamed. This fragmentation was met with disappointment, as the interviewees had hoped that the pandemic would, on the contrary, unite society and increase solidarity and tolerance. However, some experienced just such positive effects. The use of a face mask, for example, was perceived as respectful behaviour towards others.

In general, participants were positive about the public health measures, which were considered necessary to control the pandemic. On the other hand, suspicions were directed at economic interests to maintain productivity. It was perceived that lobbyists were pushing to postpone the lockdown and to speed up the easing of restrictions. Furthermore, it was considered that the pandemic revealed a need to better organize healthcare in Italy. The restrictions also increased the interviewees’ awareness of inequalities in society, for example regarding living space, access to garden and proximity to nature, as well as opportunities to work from home with stable income.

The participants also discussed hypothetical inclusion and exclusion criteria in intensive care, and described their impressions of how information and media functioned during the pandemic spring. The first question was of course difficult to handle for the participants. It was easier to admit that trust in information and the media had decreased. Some participants reported that they developed more critical attitudes towards the sources of information in the media.

If you want more results and the authors’ own discussion, read the article here: Italians locked down: people’s responses to early COVID-19 pandemic public health measures

Pär Segerdahl

Written by…

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

Romano, V., Ancillotti, M., Mascalzoni, D. et al. Italians locked down: people’s responses to early COVID-19 pandemic public health measures. Humanit Soc Sci Commun 9, 342 (2022). https://doi.org/10.1057/s41599-022-01358-3

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