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

Author: Pär Segerdahl (Page 9 of 42)

Philosophical research communication

How do you communicate about research with people who are not researchers? The scientific results usually presuppose a complicated intellectual framework, which the researchers have acquired through long education and experience. How can we talk about their research with people who are not researchers?

At CRB, we take research communication seriously, so this question follows us daily. A common way to solve the problem is to replace researchers’ complex intellectual frameworks with simple images, which people in general are more familiar with. An example could be comparing a body cell with a small factory. We thus compare the unknown with the familiar, so that the reader gets a certain understanding: “Aha, the cell functions as a kind of factory.”

Giving research results a more comprehensible context by using images that replace the researchers’ intellectual framework often works well. We sometimes use that method ourselves here at CRB. But we also use another way of embedding the research, so that it touches people. We use philosophical reflection. We ask questions that you do not need to be an expert to wonder about. The questions lead to thoughts that you do not need to be a specialist to follow. Finally, the research results are incorporated into the reasoning. We then point out that a new article sheds light on the issues we have thought about together. In this way, the research gets an understandable context, namely, in the form of thoughts that anyone can have.

We could call this philosophical research communication. There is a significant difference between these two ways of making research understandable. When simple images are used, they only aim to make people (feel that they) understand what they are not familiar with. The images are interchangeable. If you find a better image, you immediately use it instead. The images are not essential in themselves. That we compare the body cell with a factory does not express any deep interest in factories. But the philosophical questions and reflections that we at CRB embed the research in, are essential in themselves. They are sincere questions and thoughts. They cannot be replaced by other questions and reasoning, for the sole purpose of effectively conveying research results. In philosophical research communication, we give research an essential context, which is not just an interchangeable pedagogical aid. The embedding is as important as what is embedded.

Philosophical research communication is particularly important to us at CRB, as we are a centre for ethics research. Our research is driven by philosophical questions and reflections, for example, within the Human Brain Project, which examines puzzling phenomena such as consciousness and artificial intelligence. Even when we perform empirical studies, the point of those studies is to shed light on ethical problems and thoughts. In our research communication, we focus on this interplay between the philosophically thought-provoking and the empirical results.

Another difference between these ways of communicating research has to do with equality. Since the simple images that are used to explain research are not essential in themselves, such research communication is, after all, somewhat unequal. The comparison, which seemed to make us equal, is not what the communication is really about. The reader’s acquaintance with factories does not help the reader to have their own views on research. Philosophical research communication is different. Because the embedding philosophical questions and thoughts are essential and meant seriously, we meet on the same level. We can wonder together about the same honest questions. When research is communicated philosophically, communicators as well as researchers and non-researchers are equal.

Philosophical research communication can thereby deepen the meaning of the research, sometimes even for the researchers themselves!

As philosophical research communication unites us around common questions and thoughts, it is important in an increasingly fragmented and specialized society. It helps us to think together, which is easier than you might believe, if we dare to open up to our own questions. Here, of course, I assume that the communication is sincere, that it comes from independently thinking people, that it is not based on any intellectually constructed thought patterns, which one must be a philosophy expert to understand.

In that case, philosophical research communicators would need to bring philosophy itself to life, by sincerely asking the most alive questions.

Pär Segerdahl

Written by…

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

This post in Swedish

We care about communication

Neuroimaging the brain without revealing the person

Three contemporary trends create great challenges for researchers. First, science is expected to become increasingly open, among other things by making collected data available to new users and new purposes. At the same time, data protection laws are being strengthened to protect privacy. Finally, artificial intelligence finds new ways to reveal the individuals behind data, where this was previously impossible.

Neuroimaging is an example of how open science, stronger data protection legislation and more powerful AI challenge the research community. You may not think that you can identify the person whose brain is imaged by using a magnetic camera? But the image actually also depicts the shape of the skull and face, including any scars. You could thus recognize the person. In order to be able to share neuroimaging data without revealing the person, it has hitherto been assumed sufficient to remove the shape of the skull and face in the images, or to make the contours blurry. The problem is the third trend: more powerful AI.

AI can learn to identify people, where human eyes fail. Brain images where the shape of the skull and face has been made unrecognizable often turn out to contain enough information for self-learning face recognition programs to be able to identify people in the defaced images. AI can thus re-identify what had been de-identified. In addition, the anatomy of the brain itself is individual. Just as our fingers have unique fingerprints, our brains have unique “brainprints.” This makes it possible to link neuroimaging data to a person, namely, if you have previously identified neuroimaging data from the person. For example, via another database, or if the person has spread their brain images via social media so that “brainprint” and person are connected.

Making the persons completely unidentifiable would change the images so drastically that they would lose their value for research. The three contemporary trends – open science, stronger data protection legislation and more powerful AI – thus seem to be on a collision course. Is it at all possible to share scientifically useful neuroimaging data in a responsible way, when AI seems to be able to reveal the people whose brains have been imaged?

Well, everything unwanted that can happen does not have to happen. If the world were as insidiously constructed as in a conspiracy theory, no safety measures in the world could save us from the imminent end of the world. On the contrary, such totalized safety measures would definitely undermine safety, which I recently blogged about.

So what should researchers do in practice, when building international research infrastructures to share neuroimaging data (according to the first trend above)? A new article in Neuroimage: Reports, presents a constructive proposal. The authors emphasize, among other things, increased and continuously updated awareness among researchers about realistic data protection risks. Researchers doing neuroimaging need to be trained to think in terms of data protection and see this as a natural part of their research.

Above all, the article proposes several concrete measures to technically and organizationally build research infrastructures where data protection is included from the beginning, by design and by default. Because completely anonymized neuroimaging data is an impossibility (such data would lose its scientific value), pseudonymization and encryption are emphasized instead. Furthermore, technical systems of access control are proposed, as well as clear data use agreements that limit what the user may do with the data. Moreover, of course, informed consent from participants in the studies is part of the proposed measures.

Taken together, these safety measures, built-in from the beginning, would make it possible to construct research infrastructures that satisfy stronger data protection rules, even in a world where artificial intelligence can in principle see what human eyes cannot see. The three contemporary trends may not be on a collision course, after all. If data protection is built in from the beginning, by design and by default, researchers can share data without being forced to destroy the scientific value of the images, and people may continue to want to participate in research.

Pär Segerdahl

Written by…

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

Damian Eke, Ida E.J. Aasebø, Simisola Akintoye, William Knight, Alexandros Karakasidis, Ezequiel Mikulan, Paschal Ochang, George Ogoh, Robert Oostenveld, Andrea Pigorini, Bernd Carsten Stahl, Tonya White, Lyuba Zehl. “Pseudonymisation of neuroimages and data protection: Increasing access to data while retaining scientific utility,” Neuroimage: Reports, 2021,Volume 1, Issue 4

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Approaching future issues

YouTube as a source of information on paediatric cancer trials

YouTube has become an easily accessible source of information on a variety of issues, from how to fix a puncture to what Plato meant by love, and much more. Of course, YouTube can also serve as a source of health information. Regarding certain issues of health, it may be of importance to review whether the information in the uploaded videos is reliable.

A sensitive research ethical issue is what it means for children to participate in clinical cancer trials. Parents of children with cancer can be asked to give informed consent, agreeing to let their child to participate in such a study. Since the information from the researchers is difficult to understand, as is the whole situation of the family, it is conceivable that many choose to obtain information from the Internet and social media such as YouTube. If so, what kind of information do they get? Is the information ethically satisfactory?

Tove Godskesen, Sara Frygner Holm, Anna T. Höglund and Stefan Eriksson recently conducted a review of YouTube as a source of information on clinical trials for paediatric cancer. The survey was limited to videos in English posted 2010 or later, not more than 20 minutes long and with more than 100 views. Most of the videos had been produced by centres, hospitals or foundations that conduct paediatric cancer studies. The videos were graded using an instrument (DISCERN), the questions of which were adapted to the purpose of measuring the research ethical reliability of the videos. The authors found that 20 percent of the videos were useful without serious shortcomings; almost 50 percent of the videos were misleading with serious shortcomings; 30 percent were classified as inappropriate sources of information. No video could be classified as excellent.

The quality of the videos was thus generally low from a research ethical point of view. A particularly serious problem had to do with the fact that half of the videos focused on new experimental treatments or innovative early clinical trials with children whose cancer had recurred or where the standard treatment had failed. In such Phase 1 clinical trials, one mainly investigates what doses of the drug can be given without too many or too severe adverse effects. Such studies cannot be expected to have any positive therapeutic effect for these children. Instead of emphasizing this ethical difficulty in Phase 1 trials, a hopeful affective language was used in the videos suggesting new therapeutic possibilities for the children.

The authors draw the practical conclusion that children with cancer and their parents may need advice on the quality of the often anecdotal healthcare information that can be found in videos online. Because video is simultaneously an excellent medium for information to both parents and children, the authors suggest that healthcare providers produce and upload high-quality information on clinical paediatric cancer studies.

Read the article in the journal Information, Communication & Society: YouTube as a source of information on paediatric cancer trials.

Pär Segerdahl

Written by…

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

Tove Godskesen, Sara Frygner Holm, Anna T. Höglund & Stefan Eriksson (2021) YouTube as a source of information on clinical trials for paediatric cancer, Information, Communication & Society, DOI: 10.1080/1369118X.2021.1974515

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We care about communication

Securing the future already from the beginning

Imagine if there was a reliable method for predicting and managing future risks, such as anything that could go wrong with new technology. Then we could responsibly steer clear of all future dangers, we could secure the future already now.

Of course, it is just a dream. If we had a “reliable method” for excluding future risks from the beginning, time would soon rush past that method, which then proved to be unreliable in a new era. Because we trusted the method, the method of managing future risks soon became a future risk in itself!

It is therefore impossible to secure the future from the beginning. Does this mean that we must give up all attempts to take responsibility for the future, because every method will fail to foresee something unpredictably new and therefore cause misfortune? Is it perhaps better not to try to take any responsibility at all, so as not to risk causing accidents through our imperfect safety measures? Strangely enough, it is just as impossible to be irresponsible for the future as it is to be responsible. You would need to make a meticulous effort so that you do not happen to cook a healthy breakfast or avoid a car collision. Soon you will wish you had a “safe method” that could foresee all the future dangers that you must avoid to avoid if you want to live completely irresponsibly. Your irresponsibility for the future would become an insurmountable responsibility.

Sorry if I push the notions of time and responsibility beyond their breaking point, but I actually think that many of us have a natural inclination to do so, because the future frightens us. A current example is the tendency to think that someone in charge should have foreseen the pandemic and implemented powerful countermeasures from the beginning, so that we never had a pandemic. I do not want to deny that there are cases where we can reason like that – “someone in charge should have…” – but now I want to emphasize the temptation to instinctively reason in such a way as soon as something undesirable occurs. As if the future could be secured already from the beginning and unwanted events would invariably be scandals.

Now we are in a new situation. Due to the pandemic, it has become irresponsible not to prepare (better than before) for risks of pandemics. This is what our responsibility for the future looks like. It changes over time. Our responsibility rests in the present moment, in our situation today. Our responsibility for the future has its home right here. It may sound irresponsible to speak in such a way. Should we sit back and wait for the unwanted to occur, only to then get the responsibility to avoid it in the future? The problem is that this objection once again pushes concepts beyond their breaking point. It plays around with the idea that the future can be foreseen and secured already now, a thought pattern that in itself can be a risk. A society where each public institution must secure the future within its area of ​​responsibility, risks kicking people out of the secured order: “Our administration demands that we ensure that…, therefore we need a certificate and a personal declaration from you, where you…” Many would end up outside the secured order, which hardly secures any order. And because the trouble-makers are defined by contrived criteria, which may be implemented in automated administration systems, these systems will not only risk making systematic mistakes in meeting real people. They will also invite cheating with the systems.

So how do we take responsibility for the future in a way that is responsible in practice? Let us first calm down. We have pointed out that it is impossible not to take responsibility! Just breathing means taking responsibility for the future, or cooking breakfast, or steering the car. Taking responsibility is so natural that no one needs to take responsibility for it. But how do we take responsibility for something as dynamic as research and innovation? They are already in the future, it seems, or at least at the forefront. How can we place the responsibility for a brave new world in the present moment, which seems to be in the past already from the beginning? Does not responsibility have to be just as future oriented, just as much at the forefront, since research and innovation are constantly moving towards the future, where they make the future different from the already past present moment?

Once again, the concepts are pushed beyond their breaking point. Anyone who reads this post carefully can, however, note a hopeful contradiction. I have pointed out that it is impossible to secure the future already now, from the beginning. Simultaneously, I point out that it is in the present moment that our responsibility for the future lies. It is only here that we take responsibility for the future, in practice. How can I be so illogical?

The answer is that the first remark is directed at our intellectual tendency to push the notions of time and responsibility beyond their limits, when we fear the future and wish that we could control it right now. The second remark reminds us of how calmly the concepts of time and responsibility work in practice, when we take responsibility for the future. The first remark thus draws a line for the intellect, which hysterically wants to control the future totally and already from the beginning. The second remark opens up the practice of taking responsibility in each moment.

When we take responsibility for the future, we learn from history as it appears in current memory, as I have already indicated. The experiences from the pandemic make it possible at present to take responsibility for the future in a different way than before. The not always positive experiences of artificial intelligence make it possible at present to take better responsibility for future robotics. The strange thing, then, is that taking responsibility presupposes that things go wrong sometimes and that we are interested in the failures. Otherwise we had nothing to learn from, to prepare responsibly for the future. It is really obvious. Responsibility is possible only in a world that is not fully secured from the beginning, a world where the undesirable happens. Life is contradictory. We can never purify security according to the one-sided demands of the intellect, for security presupposes the uncertain and the undesirable.

Against this philosophical background, I would like to recommend an article in the Journal of Responsible Innovation, which discusses responsible research and innovation in a major European research project, the Human Brain Project (HBP): From responsible research and innovation to responsibility by design. The article describes how one has tried to be foresighted and take responsibility for the dynamic research and innovation within the project. The article reflects not least on the question of how to continue to be responsible even when the project ends, within the European research infrastructure that is planned to be the project’s product: EBRAINS.

The authors are well aware that specific regulated approaches easily become a source of problems when they encounter the new and unforeseen. Responsibility for the future cannot be regulated. It cannot be reduced to contrived criteria and regulations. One of the most important conclusions is that responsibility from the beginning needs to be an integral part of research and innovation, rather than an external framework. Responsibility for the future requires flexibility, openness, anticipation, engagement and reflection. But what is all that?

Personally, I want to say that it is partly about accepting the basic ambiguity of life. If we never have the courage to soar in uncertainty, but always demand security and nothing but security, we will definitely undermine security. By being sincerely interested in the uncertain and the undesirable, responsibility can become an integral part of research and innovation.

Pär Segerdahl

Written by…

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

Bernd Carsten Stahl, Simisola Akintoye, Lise Bitsch, Berit Bringedal, Damian Eke, Michele Farisco, Karin Grasenick, Manuel Guerrero, William Knight, Tonii Leach, Sven Nyholm, George Ogoh, Achim Rosemann, Arleen Salles, Julia Trattnig & Inga Ulnicane. From responsible research and innovation to responsibility by design. Journal of Responsible Innovation. (2021) DOI: 10.1080/23299460.2021.1955613

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Approaching future issues

Can subjectivity be explained objectively?

The notion of a conscious universe, animated by unobservable experiences, is today presented almost as a scientific hypothesis. How is that possible? Do cosmologists’ hypotheses that the universe is filled with dark matter and dark energy contribute to making the idea of ​​a universe filled with “dark consciousness” almost credible?

I ask the question because I myself am amazed at how the notion that elementary particles have elementary experiences suddenly has become academically credible. The idea that consciousness permeates reality is usually called panpsychism and is considered to have been represented by several philosophers in history. The alleged scientific status of panpsychism is justified today by emphasizing two classic philosophical failures to explain consciousness. Materialism has not succeeded in explaining how consciousness can arise from non-conscious physical matter. Dualism has failed to explain how consciousness, if it is separate from matter, can interact with physical reality.

Against this discouraging background, panpsychism is presented as an attractive, even elegant solution to the problem of consciousness. The hypothesis is that consciousness is hidden in the universe as a fundamental non-observable property of matter. Proponents of this elegant solution suggest that this “dark consciousness,” which permeates the universe, is extremely modest. Consciousness is present in every elementary particle in the form of unimaginably simple elementary experiences. These insignificant experiences are united and strengthened in the brain’s nervous system, giving rise to what we are familiar with as our powerful human consciousness, with its stormy feelings and thoughts.

However, this justification of panpsychism as an elegant solution to a big scientific problem presupposes that there really is a big scientific problem to “explain consciousness.” Is not the starting point a bit peculiar, that even subjectivity must be explained as an objective phenomenon? Even dualism tends to objectify consciousness, since it presents consciousness as a parallel universe to our physical universe.

The alternative explanations are thus all equally objectifying. Either subjectivity is reduced to purely material processes, or subjectivity is explained as a mental parallel universe, or subjectivity is hypostasized as “dark consciousness” that pervades the universe: as elementary experiential qualities of matter. Can we not let subjectivity be subjectivity and objectivity be objectivity?

Once upon a time there was a philosopher named Immanuel Kant. He saw how our constantly objectifying subjectivity turns into an intellectual trap, when it tries to understand itself without limiting its own objectifying approach to all questions. We then resemble cats that hopelessly chase their own tails: either by spinning to the right or by spinning to the left. Both directions are equally frustrating. Is there an elegant solution to the spinning cat’s problem? Now, I do not want to claim that Kant definitely exposed the “hard problem” of consciousness as an intellectual trap, but he pointed out the importance of self-critically examining our projective, objectifying way of functioning. If we lived as expansively as we explain everything objectively, we would soon exhaust the entire planet… is not that exactly what we do?

During a philosophy lecture, I tried to show the students how we can be trapped by apparent problems, by pseudo-problems that of course are not scientific problems, since they make us resemble cats chasing their own tails without realizing the unrealizability of the task. One student did not like what she perceived as an arbitrary limitation of the enormous achievements of science, so she objected: “But if it is the task of science to explain all big problems, then it must attempt to explain these riddles as well.” The objection is similar to the motivation of panpsychism, where it is assumed that it is the task of science to explain everything objectively, even subjectivity, no matter how hopelessly the questions spin in our heads.

The spinning cat’s problem has a simple solution: stop chasing the tail. Humans, on the other hand, need to clearly see the hopelessness of their spinning in order to stop it. Therefore, humans need to philosophize in order to live well on this planet.

Pär Segerdahl

Written by…

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

If you want to read more about panpsychism, here are two links:

Does consciousness pervade the universe?

The idea that everything from spoons to stones is conscious is gaining academic credibility

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We challenge habits of thought

To philosophize is to soar freely in uncertainty

What would happen if we more often put away our prestigious masks of knowledge and instead freed our sincerest questions? Not only in individual conversations, but also in public. How would our voices sound if we openly gave ourselves time to wait for clarity? What would philosophy sound like in a society that does not normally allow time for reflection? That is the question in this little post.

A long time ago, I heard a TV conversation with a few experts around the table. I do not remember what the conversation was about. That I still think about it, is due to one of the participants, Anna Christensen (1936-2001), Sweden’s first female professor of law. The deep sincerity in her way of speaking made a strong impression on me. If philosophy is born wherever people think for themselves, then I want to say that it was born in Anna Christensen, whose voice in my ears sounded heavenly free and independent. Perhaps it is no coincidence that this birth of free thinking occurred in a male labyrinth, which hardly gave a woman any leeway. Faced with the relentless walls of the labyrinth, there is no choice but to find freedom at the source: in oneself. The freedom of the powerful in the labyrinth cannot be compared to the freedom from the labyrinth. Anna Christensen’s voice was free in this greater sense. It came from the vastness outside.

That I remember the TV conversation is also due to the unexpected effect that Anna Christensen’s words had on the pleasant conversation between experts, under the competent leadership of the anchor man. The male experts enjoyed each other’s company. Everything they said was oriented towards the others. They resembled an academic men’s choir, who enjoyed singing their songs of knowledge a little more publicly than usual, in the spotlight. My impression was that Anna Christensen did not really orient herself towards the others or towards the songs they sang. She orientated herself towards the question, which she had probably thought about herself and which she now turned her attention to, while she heard the others relate to each other by alternately singing what they thought they knew about the predetermined theme. Once she got the opportunity to speak, time stopped. All the thought patterns that had kept the TV conversation going stopped. The whole 20th century stopped for a moment and someone started thinking for herself. The words were free from the mental patterns that governed the conversation. They came from a calmer place, from a simpler place, where we see more clearly because we do not stir up intellectual dust. When Anna Christensen had said what needed to be said, it became completely silent in the studio. How do you continue an easy studio conversation when someone has put an end to time itself?

To make the conversation flow again, to revive the 20th century, the anchor man had to say something expected, reconnect the conversation to familiar mental patterns, and stir up some intellectual dust to react to. What a relief that spread among the dumbfounded participants in the studio! At last they were back in the labyrinth, in the movement of time, where there were thought patterns to follow. This stopping and restarting of humanly organized time was repeated every time Anna Christensen spoke.

Anna Christensen may not have changed the 20th century, but she could halt its mechanical repetition of mental patterns within herself. She could stop and wait for clarity. What significance do pensive voices like hers have when they find their way into the present? I continue to soar in the uncertainty of that question, because no one can know what happens when someone dares to wonder and speak completely sincerely.

Pär Segerdahl

Written by…

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

This post in Swedish

We challenge habits of thought

Dynamic consent: broad and specific at the same time

The challenge of finding an appropriate way to handle informed consent to biobank research is big and has often been discussed here on the Ethics Blog. Personal data and biological samples are collected and saved for a long time to be used in future research, for example, on how genes and the environment interact in various diseases. The informed consent to research is for natural reasons broad, because when collecting data and samples it is not yet possible to specify which future research studies the material will be used in.

An unusually clear and concise article on biobank research presents a committed approach to the possible ethical challenges regarding broad consent. The initial broad consent to research is combined with clearly specified strong governance and oversight mechanisms. The approach is characterized also by continuous communication with the research participants, through which they receive updated information that could not be given at the time of the original consent. This enables participants to stay specifically informed and make autonomous choices about their research participation through time.

The model is called dynamic consent. This form of consent can be viewed as broad and specific at the same time. The article describes experiences from a long-term biobank study in South Tyrol in Italy, the CHRIS study, where dynamic consent is implemented since 2011. The model is now used to initiate the first follow-up phase, where participants are contacted for further sampling and data collection in new studies.

The article on dynamic consent in the CHRIS study is written by Roberta Biasiotto, Peter P. Pramstaller and Deborah Mascalzoni. In addition to describing their experiences of dynamic consent, they also respond to common objections to the model, for example, that participants would be burdened by constant requests for consent or that participants would have an unreasonable influence over research.

I would like to emphasize once again the clarity of the article, which shows great integrity and courage. The authors do not hide behind a facade of technical terminology and jargon, so that one must belong to a certain academic discipline to understand. They write broadly and specifically at the same time, I am inclined to say! This inspires confidence and indicates how sincerely one has approached the ethical challenges of involving and communicating with research participants in the CHRIS study.

Pär Segerdahl

Written by…

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

Biasiotto, Roberta; Pramstaller, Peter P.; Mascalzoni, Deborah. 2021. The dynamic consent of the Cooperative Health Research in South Tyrol (CHRIS) study: broad aim within specific oversight and communication. Part of BIOLAW JOURNAL-RIVISTA DI BIODIRITTO, pp. 277-287. http://dx.doi.org/10.15168/2284-4503-786

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We care about communication

Challenges in end-of-life care of people with severe dementia

In order to improve care, insight is needed into the challenges that one experiences in the daily care work. One way to gain insight is to conduct interview studies with healthcare staff. The analysis of the interviews can provide a well-founded perspective on the challenges, as they are experienced from within the practices.

In Sweden, people with severe dementia usually die in nursing homes. Compared to the specialised palliative care of cancer patients, the general care of people with severe dementia at the end of life is less advanced, with fewer opportunities to relieve pain and other ailments. To gain a clearer insight into the challenges, Emma Lundin and Tove Godskesen conducted an interview study with nurses in various nursing homes in Stockholm. They approached the profession that is largely responsible for relieving pain and other ailments in dying severely demented people.

The content of the interviews was thematically analysed as three types of challenges: communicative, relational and organisational. The communicative challenges have to do with the difficulty of assessing type of pain and pain level in people with severe dementia, as they often cannot understand and answer questions. Assessment becomes particularly difficult if the nurse does not already know the person with dementia and therefore cannot assess the difference between the person’s current and previous behaviour. Communication difficulties also make it difficult to find the right dose of pain medications. In addition, they make it difficult to assess whether the person’s behaviour expresses pain or rather anxiety, which may need other treatment.

Visiting relatives can often help nurses interpret the behaviour of the person with dementia. However, they can also interfere with nurses’ work to relieve pain, since they can have different opinions about the use of, for example, morphine. Some relatives want to increase the dose to be sure that the person with dementia does not suffer from pain, while others are worried that morphine may cause death or create addiction.

The organisational challenges have to do in part with understaffing. The nurses do not have enough time to spend with the demented persons, who sometimes die alone, perhaps without optimal pain relief. Furthermore, there is often a lack of professional competence and experience at the nursing homes regarding palliative care for people with severe dementia: it is a difficult art.

The authors of the article argue that these challenges point to the need for specialist nurses who are trained in palliative care for people with dementia. They further ague that resources and strategies are needed to inform relatives about end-of-life care, and to involve them in decision-making where they can represent the relative. Relatives may need to be informed that increased morphine doses are probably not due to drug addiction. Rather, they are due to the fact that the need for pain relief increases as more and more complications arise near death. If the intention is to relieve symptoms at the end of life, you may end up in a situation where large doses of morphine need to be given to relieve pain, despite the risk to the patient.

If you want a deeper insight into the challenges, read the article in BMC Nursing: End-of-life care for people with advanced dementia and pain: a qualitative study in Swedish nursing homes.

Pär Segerdahl

Written by…

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

Lundin, E., Godskesen, T.E. End-of-life care for people with advanced dementia and pain: a qualitative study in Swedish nursing homes. BMC Nurs 20, 48 (2021). https://doi.org/10.1186/s12912-021-00566-7

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We like real-life ethics

To change the changing human

Neuroscience contributes to human self-understanding, but it also raises concerns that it might change humanness, for example, through new neurotechnology that affects the brain so deeply that humans no longer are truly human, or no longer experience themselves as human. Patients who are treated with deep brain stimulation, for example, can state that they feel like robots.

What ethical and legal measures could such a development justify?

Arleen Salles, neuroethicist in the Human Brain Project, argues that the question is premature, since we have not clarified our concept of humanness. The matter is complicated by the fact that there are several concepts of human nature to be concerned about. If we believe that our humanness consists of certain unique abilities that distinguish humans from animals (such as morality), then we tend to dehumanize beings who we believe lack these abilities as “animal like.” If we believe that our humanity consists in certain abilities that distinguish humans from inanimate objects (such as emotions), then we tend to dehumanize beings who we believe lack these abilities as “mechanical.” It is probably in the latter sense that the patients above state that they do not feel human but rather as robots.

After a review of basic features of central philosophical concepts of human nature, Arleen Salles’ reflections take a surprising turn. She presents a concept of humanness that is based on the neuroscientific research that one worries could change our humanness! What is truly surprising is that this concept of humanness to some extent questions the question itself. The concept emphasizes the profound changeability of the human.

What does it mean to worry that neuroscience can change human nature, if human nature is largely characterized its ability to change?

If you follow the Ethics Blog and remember a post about Kathinka Evers’ idea of a neuroscientifically motivated responsibility for human nature, you are already familiar with the dynamic concept of human nature that Arleen Salles presents. In simple terms, it can be said to be a matter of complementing human genetic evolution with an “epigenetic” selective stabilization of synapses, which every human being undergoes during upbringing. These connections between brain cells are not inherited genetically but are selected in the living brain while it interacts with its environments. Language can be assumed to belong to the human abilities that largely develop epigenetically. I have proposed a similar understanding of language in collaboration with two ape language researchers.

Do not assume that this dynamic concept of human nature presupposes that humanness is unstable. As if the slightest gust of wind could disrupt human evolution and change human nature. On the contrary, the language we develop during upbringing probably contributes to stabilizing the many human traits that develop simultaneously. Language probably supports the transmission to new generations of the human forms of life where language has its uses.

Arleen Salles’ reflections are important contributions to the neuroethical discussion about human nature, the brain and neuroscience. In order to take ethical responsibility, we need to clarify our concepts, she emphasizes. We need to consider that humanness develops in three interconnected dimensions. It is about our genetics together with the selective stabilization of synapses in living brains in continuous interaction with social-cultural-linguistic environments. All at the same time!

Arleen Salles’ reflections are published as a chapter in a new anthology, Developments in Neuroethics and Bioethics (Elsevier). I am not sure if the publication will be open access, but hopefully you can find Arleen Salles’ contribution via this link: Humanness: some neuroethical reflections.

The chapter is recommended as an innovative contribution to the understanding of human nature and the question of whether neuroscience can change humanness. The question takes a surprising turn, which suggests we all together have an ongoing responsibility for our changing humanness.

Pär Segerdahl

Written by…

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

Arleen Salles (2021). Humanness: some neuroethical reflections. Developments in Neuroethics and Bioethics. https://doi.org/10.1016/bs.dnb.2021.03.002

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We think about bioethics

New dissertation on patient preferences in medical approvals

During the spring, several doctoral students at CRB successfully defended their dissertations. Karin Schölin Bywall defended her dissertation on May 12, 2021. The dissertation, like the two previous ones, reflects a trend in bioethics from theoretical investigations to empirical studies of people’s perceptions of bioethical issues.

An innovative approach in Karin Schölin Bywall’s dissertation is that she identifies a specific area of ​​application where the preference studies that are increasingly used in bioethics can be particularly beneficial. It is about patients’ influence on the process of medical approval. Patients already have such an influence, but their views are obtained somewhat informally, from a small number of invited patients. Karin Schölin Bywall explores the possibility of strengthening patients’ influence scientifically. Preference studies can give decision-makers an empirically more well-founded understanding of what patients actually prefer when they weigh efficacy against side effects and other drug properties.

If you want to know more about the possibility of using preference studies to scientifically strengthen patients’ influence in medical approvals, read Karin Schölin Bywall’s dissertation: Getting a Say: Bringing patients’ views on benefit-risk into medical approvals.

If you want a concise summary of the dissertation, read Anna Holm’s news item on our website: Bringing patients’ views into medical approvals.

Pär Segerdahl

Written by…

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

Schölin Bywall, K. (2021) Getting a Say: Bringing patients’ views on benefit-risk into medical approvals. [Dissertation]. Uppsala University.

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We want solid foundations

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