Tag: autonomy (Page 1 of 2)

Does knowing the patient make a moral difference?

Sick man in bed. Photo by Kampus Production on Pexels.

27 August, 2024 / Pär Segerdahl / 2 Comments

Several ethical concepts and principles govern how patients should be treated in healthcare. For example, healthcare professionals should respect patients’ autonomy. Moreover, they should act in the patients’ best interest and avoid actions that can cause harm. Patients must also be treated fairly. However, exactly how such ethical concepts and principles should be applied can vary in different situations.

A new article examines whether the application may depend on whether the healthcare personnel know the patient (in the sense of having knowledge about the patient). Some healthcare situations are characterized by the fact that the patient is unknown to the personnel: they have never met the patient before. Other situations are characterized by familiarity: the personnel have had continuous contact with the patient for a long time. In the latter situations, the personnel know the patient’s personality, living conditions, preferences and needs. Does such familiarity with the patient make any difference to how patients should be treated ethically by the healthcare staff, ask the authors of the article, Joar Björk and Anna Hirsch.

It may be tempting to reply that knowing the patient should not be allowed to play any role, that it follows from the principle of justice that familiarity should not be allowed to make any difference. Of course, the principle of justice places limits on the importance of familiarity with the patient. But in healthcare there is still this difference between situations marked by unfamiliarity and situations marked by familiarity. Consider the difference between screening and palliative home care. Should not this difference sometimes make a moral difference?

Presumably familiarity can sometimes make a moral difference, the authors argue. They give examples of how, not least, autonomy can take different forms depending on whether the situation is characterized by familiarity or unfamiliarity. Take the question of when and how patients should be allowed to delegate their decision-making to the healthcare personnel. If the personnel do not know the patient at all, it seems to be at odds with autonomy to take over the patient’s decision-making, even if the patient wishes it. However, if the personnel are well acquainted with the patient, it may be more consistent with autonomy to take over parts of the decision-making, if the patient so wishes. The authors provide additional examples. Suppose a patient has asked not to be informed prior to treatment, but the staff know the patient well and know that a certain part of the information could make this particular patient want to change certain decisions about the treatment. Would it then not be ethically correct to give the patient at least that part of the information and problematic not to do so? Or suppose a patient begins to change their preferences back and forth. If the patient is unfamiliar to the staff, it may be correct to always let the most recent preference apply. (One may not even be aware that the patient had other preferences before.) If, on the other hand, the patient is well known, the staff may have to take into account both past and present preferences and make a more global assessment of the changes and of autonomy.

The authors also exemplify how the application of other moral concepts and principles can take different forms, depending on whether the relationship with the patient is characterized by familiarity or unfamiliarity. Even the principle of justice could in some cases take different form, depending on whether the personnel know the patient or not, they suggest. If you want to see a possible example of this, read the article here: An “ethics of strangers”? On knowing the patient in clinical ethics.

The authors finally argue that care decisions regarding autonomy, justice and acting in the best interest of the patient are probably made with greater precision if the personnel know the patient well. They argue that healthcare professionals therefore should strive to get to know their patients. They also argue that healthcare systems where a greater proportion of the staff know a greater proportion of the patients are preferable from an ethical point of view, for example systems that promote therapeutic continuity.

Written by…

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

Björk, J., Hirsch, A. An “ethics of strangers”? On knowing the patient in clinical ethics. Med Health Care and Philosophy 27, 389–397 (2024). https://doi.org/10.1007/s11019-024-10213-y

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Of course, but: ethics in palliative practice

28 May, 2024 / Pär Segerdahl / 1 Comment

What is obvious in principle may turn out to be less obvious in practice. That would be at least one possible interpretation of a new study on ethics in palliative care.

Palliative care is given to patients with life-threatening illnesses that cannot be cured. Although palliative care can sometimes contribute to extending life somewhat, the focus is on preventing and alleviating symptoms in the final stages of life. The patient can also receive support to deal with worries about death, as well as guidance on practical issues regarding finances and relationships with relatives.

As in all care, respect for the patient’s autonomy is central in palliative care. To the extent possible, the patient should be given the opportunity to participate in the medical decision-making and receive information that corresponds to the patient’s knowledge and wishes for information. This means that if a patient does not wish information about their health condition and future prospects, this should also be respected. How do palliative care professionals handle such a situation, where a patient does not want to know?

The question is investigated in an interview study by Joar Björk, who is a clinical ethicist and physician in palliative home care. He conducted six focus group interviews with staff in palliative care in Sweden, a total of 33 participants. Each interview began with an outline of an ethically challenging patient case. A man with disseminated prostate cancer is treated by a palliative care team. He has previously reiterated that it is important for him to gain complete knowledge of the illness and how his death may look. Because the team had to deal with many physical symptoms, they have not yet had time to answer his questions. When they finally get time to talk to him, he suddenly says that he does not want more information and that the issue should not be raised again. He gives no reason for his changed position, but nothing else seems to have changed and he seems to be in his right mind.

What did the interviewees say about the made-up case? The initial reaction was that it goes without saying that the patient has the right not to be informed. If a patient does not want information, then you must not impose the information on him, but must “meet the patient where he is.” But the interviewees still began to wonder about the context. Why did the man suddenly change his mind? Although the case description states that the man is competent to make decisions, this began to be doubted. Or could someone close to him have influenced him? What at first seemed obvious later appeared to be problematic.

The interviewees emphasized that in a case like this one must dig deeper and investigate whether it is really true that the patient does not want to be informed. Maybe he said that he does not want to know to appear brave, or to protect loved ones from disappointing information? Preferences can also change over time. Suddenly you do not want what you just wanted, or thought you wanted. Palliative care is a process, it was emphasized in the interviews. Thanks to the fact that the care team has continuous contact with the patient, it was felt that one could carefully probe what he really wants at regular intervals.

Other values were also at stake for the interviewees, which could further contribute to undermining what at first seemed obvious. For example, that the patient has the right to a dignified, peaceful and good death. If he is uninformed that he has a very short time left to live, he cannot prepare for death, say goodbye to loved ones, or finish certain practical tasks. It may also be more difficult to plan and provide good care to an uninformed patient, and it may feel dishonest to know something important but not tell the person concerned. The interviewees also considered the consequences for relatives of the patient’s reluctance to be informed.

The main result of the study is that the care teams found it difficult to handle a situation where a patient suddenly changes his mind and does not want to be informed. Should they not have experienced these difficulties? Should they accept what at first seemed self-evident in principle, namely that the patient has the right not to know? The interviewees themselves emphasized that care is a process, a gradually unfolding relationship, and that it is important to be flexible and continuously probe the changing will of the patient. Perhaps, after all, it is not so difficult to deal with the case in practice, even if it is not as simple as it first appeared?

The interviewees seemed unhappy about the patient’s decision, but at the same time seemed to feel that there were ways forward and that time worked in their favor. In the end, the patient probably wants to know, after all, they seemed to think. Should they not have had such an attitude towards the patient’s decision?

Read the author’s interesting discussion of the study results here: “It is very hard to just accept this” – a qualitative study of palliative care teams’ ethical reasoning when patients do not want information.

Written by…

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

Björk, J. “It is very hard to just accept this” – a qualitative study of palliative care teams’ ethical reasoning when patients do not want information. BMC Palliative Care 23, 91 (2024). https://doi.org/10.1186/s12904-024-01412-8

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We like real-life ethics

Images of good and evil artificial intelligence

15 February, 2022 / Pär Segerdahl / 0 Comments

As Michele Farisco has pointed out on this blog, artificial intelligence (AI) often serves as a projection screen for our self-images as human beings. Sometimes also as a projection screen for our images of good and evil, as you will soon see.

In AI and robotics, autonomy is often sought in the sense that the artificial intelligence should be able to perform its tasks optimally without human guidance. Like a self-driving car, which safely takes you to your destination without you having to steer, accelerate or brake. Another form of autonomy that is often sought is that artificial intelligence should be self-learning and thus be able to improve itself and become more powerful without human guidance.

Philosophers have discussed whether AI can be autonomous even in another sense, which is associated with human reason. According to this picture, we can as autonomous human beings examine our final goals in life and revise them if we deem that new knowledge about the world motivates it. Some philosophers believe that AI cannot do this, because the final goal, or utility function, would make it irrational to change the goal. The goal is fixed. The idea of such stubbornly goal-oriented AI can evoke worrying images of evil AI running amok among us. But the idea can also evoke reassuring images of good AI that reliably supports us.

Worried philosophers have imagined an AI that has the ultimate goal of making ordinary paper clips. This AI is assumed to be self-improving. It is therefore becoming increasingly intelligent and powerful when it comes to its goal of manufacturing paper clips. When the raw materials run out, it learns new ways to turn the earth’s resources into paper clips, and when humans try to prevent it from destroying the planet, it learns to destroy humanity. When the planet is wiped out, it travels into space and turns the universe into paper clips.

Philosophers who issue warnings about “evil” super-intelligent AI also express hopes for “good” super-intelligent AI. Suppose we could give self-improving AI the goal of serving humanity. Without getting tired, it would develop increasingly intelligent and powerful ways of serving us, until the end of time. Unlike the god of religion, this artificial superintelligence would hear our prayers and take ever-smarter action to help us. It would probably sooner or later learn to prevent earthquakes and our climate problems would soon be gone. No theodicy in the world could undermine our faith in this artificial god, whose power to protect us from evil is ever-increasing. Of course, it is unclear how the goal of serving humanity can be defined. But given the opportunity to finally secure the future of humanity, some hopeful philosophers believe that the development of human-friendly self-improving AI should be one of the most essential tasks of our time.

I read all this in a well-written article by Wolfhart Totschnig, who questions the rigid goal orientation associated with autonomous AI in the scenarios above. His most important point is that rigidly goal-oriented AI, which runs amok in the universe or saves humanity from every predicament, is not even conceivable. Outside its domain, the goal loses its meaning. The goal of a self-driving car to safely take the user to the destination has no meaning outside the domain of road traffic. Domain-specific AI can therefore not be generalized to the world as a whole, because the utility function loses its meaning outside the domain, long before the universe is turned into paper clips or the future of humanity is secured by an artificially good god.

This is, of course, an important philosophical point about goals and meaning, about specific domains and the world as a whole. The critique helps us to more realistically assess the risks and opportunities of future AI, without being bewitched by our images. At the same time, I get the impression that Totschnig continues to use AI as a projection screen for human self-images. He argues that future AI may well revise its ultimate goals as it develops a general understanding of the world. The weakness of the above scenarios was that they projected today’s domain-specific AI, not the general intelligence of humans. We then do not see the possibility of a genuinely human-like AI that self-critically reconsiders its final goals when new knowledge about the world makes it necessary. Truly human-equivalent AI would have full autonomy.

Projecting human self-images on future AI is not just a tendency, as far as I can judge, but a norm that governs the discussion. According to this norm, the wrong image is projected in the scenarios above. An image of today’s machines, not of our general human intelligence. Projecting the right self-image on future AI thus appears as an overall goal. Is the goal meaningful or should it be reconsidered self-critically?

These are difficult issues and my impression of the philosophical discussion may be wrong. If you want to judge for yourself, read the article: Fully autonomous AI.

Written by…

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

Totschnig, W. Fully Autonomous AI. Sci Eng Ethics 26, 2473–2485 (2020). https://doi.org/10.1007/s11948-020-00243-z

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Autonomous together

1 June, 2020 / Pär Segerdahl / 1 Comment

Autonomy is such a cherished concept in ethics that I hardly dare to write about it. The fact that the concept cherishes the individual does not make my task any easier. The slightest error in my use of the term, and I risk being identified as an enemy perhaps not of the people but of the individual!

In ethics, autonomy means personal autonomy: individuals’ ability to govern their own lives. This ability is constantly at risk of being undermined. It is undermined if others unduly influence your decisions, if they control you. It is also undermined if you are not sufficiently well informed and rational. For example, if your decisions are based on false or contradictory information, or if your decisions result from compulsions or weakness of the will. It is your faculty of reason that should govern your life!

In an article in BMC Medical Ethics, Amal Matar, who has a PhD at CRB, discusses decision-making situations in healthcare where this individual-centered concept of autonomy seems less useful. It is about decisions made not by individuals alone, but by people together: by couples planning to become parents.

A couple planning a pregnancy together is expected to make joint decisions. Maybe about genetic tests and measures to be taken if the child risks developing a genetic disease. Here, as always, the healthcare staff is responsible for protecting the patients’ autonomy. However, how is this feasible if the decision is not made by individuals but jointly by a couple?

Personal autonomy is an idealized concept. No man is an island, it is said. This is especially evident when a couple is planning a life together. If a partner begins to emphasize his or her personal autonomy, the relationship probably is about to disintegrate. An attempt to correct the lack of realism in the idealized concept has been to develop ideas about relational autonomy. These ideas emphasize how individuals who govern their lives are essentially related to others. However, as you can probably hear, relational autonomy remains tied to the individual. Amal Matar therefore finds it urgent to take a further step towards realism concerning joint decisions made by couples.

Can we talk about autonomy not only at the level of the individual, but also at the level of the couple? Can a couple planning a pregnancy together govern their life by making decisions that are autonomous not only for each one of them individually, but also for them together as a couple? This is Amal Matar’s question.

Inspired by how linguistic meaning is conceptualized in linguistic theory as existing not only at the level of the word, but also at the level of the sentence (where words are joined together), Amal Matar proposes a new concept of couple autonomy. She suggests that couples can make joint decisions that are autonomous at both the individual and the couple’s level.

She proposes a three-step definition of couple autonomy. First, both partners must be individually autonomous. Then, the decision must be reached via a communicative process that meets a number of criteria (no partner dominates, sufficient time is given, the decision is unanimous). Finally, the definition allows one partner to autonomously transfer aspects of the decision to the other partner.

The purpose of the definition is not a philosophical revolution in ethics. The purpose is practical. Amal Matar wants to help couples and healthcare professionals to speak realistically about autonomy when the decision is a couple’s joint decision. Pretending that separate individuals make decisions in parallel makes it difficult to realistically assess and support the decision-making process, which is about interaction.

Amal Matar concludes the article, written together with Anna T. Höglund, Pär Segerdahl and Ulrik Kihlbom, with describing two cases. The cases show concretely how her definition can help healthcare professionals to assess and support autonomous decision-making at the level of the couple. In one case, the couple’s autonomy is undermined, in the other case, probably not.

Read the article as an example of how we sometimes need to modify cherished concepts to enable a realistic use of them.

Written by…

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

Matar, A., Höglund, A.T., Segerdahl, P. and Kihlbom, U. Autonomous decisions by couples in reproductive care. BMC Med Ethics 21, 30 (2020). https://doi.org/10.1186/s12910-020-00470-w

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Are you a person or an animal?

30 August, 2017 / Pär Segerdahl / 0 Comments

The question in the title may sound like an insult. That is, not as a question, but as something one might say in anger to reprimand someone who misbehaves.

In philosophy, the question is asked seriously, without intention of insulting. A philosopher who misbehaves at a party and is reprimanded by another guest – “Are you a person or an animal?” – could answer, shamelessly: Eh, I really don’t know, philosophers have contemplated that question for hundreds of years.

What then is the philosophical question? It is usually described as the problem of personal identity. What are we, essentially? What constitutes “me”? What holds the self together? When does it arise and when does it disappear?

According to proponents of a psychological view, we (human beings) are persons with certain psychological capacities, such as self-awareness. That psychology holds the self together. If an unusual disease made my body deteriorate, but doctors managed to transplant my mental contents (self-awareness, memories, etc.) into another body, then I would survive in the other body. According to proponents of the rival, animalist view, however, we are animals with a certain biology. An animalist would probably deny that I could survive in a foreign body.

The difference between the two views can be illustrated by their consequences for a bioethical question: Is it permissible to harvest organs from brain-dead bodies to use as transplants? If we are essentially persons with self-awareness, then we cease to exist when the brain dies. Then it should be permissible to harvest organs; it would not violate personal autonomy. If we are animals with a certain biology, however, harvesting organs may appear as using citizens as mere means in healthcare.

In an article in Ethics, Medicine and Public Health, Elisabeth Furberg at CRB questions these views on identity. She argues that both views are anthropocentric. This is easy to see when it comes to the view that we are essentially persons. The psychological view exaggerates the importance of certain supposedly unique human psychological capacities (such as the capacity for a first-person perspective), and underestimates the psychological capacities of non-human animals. According to Furberg, however, even the animalist view is anthropocentric. How!?

How can an outlook where we are essentially animals be anthropocentric? Well, because the very concept “animal” is anthropocentric, Furberg argues. It originated as a contrast to the concept “human.” It distinguishes us (morally advanced beings) from them (less worthy creatures of nature). The animalist view is unaware of its own anthropocentric bias, which comes with the concept “animal.”

At the end of the article, Furberg proposes a less anthropocentric view on identity, a hybrid view that combines the psychological and animalistic answers to the question in the title. The hybrid view is open to the possibility that even animals other than humans can have psychological identity, such as chimpanzees. If I understand Furberg correctly, she would say that many animals are just animals. A snail is identical to the snail. It has no psychological identity that could survive in another snail body. Nevertheless, a number of animals (not just humans) have an identity that goes beyond their animality. Chimpanzees and humans, and probably some other species, are such animals.

I cannot resist mentioning that I have written an article about similar issues: Being human when we are animals. There, I do not purify a metaphysical question from an insult, but investigate the insult, the reprimand.

Pär Segerdahl

Furberg, E. 2017. “Are we persons or animals? Exposing an anthropocentric bias and suggesting a hybrid view.” Ethics, Medicine and Public Health (3): 279-287

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Nudging people in the right direction

27 June, 2017 / Pär Segerdahl / 0 Comments

Behavioral scientist study how environments can be designed so that people are pushed towards better decisions. By placing the vegetables first at the buffet, people may choose more vegetables than they would otherwise do. They choose themselves, but the environment is designed to support the “right” choice.

Nudging people to behave more rationally may, of course, seem self-contradictory, perhaps even unethical. Shouldn’t a rational person be allowed to make completely autonomous decisions, instead of being pushed in the “right” direction by the placement of salad bowls? Influencing people by designing their environments might support better habits, but it insults Rationality!

As a philosopher, I do, of course, appreciate independent thinking. However, I do not demand that every daily decision should be the outcome of reasoning. On the contrary, the majority of decisions should not require too much arguing with oneself. It saves time and energy for matters that deserve contemplation. A nudge from a salad bowl at the right place supports my independent thinking.

Linnea Wickström Östervall, former researcher at CRB, has tried to nudge people to a more restrained use of antibiotics. It is important to reduce antibiotics use, because overuse causes antibiotic resistance: a major challenge to manage.

In her study, she embedded a brief reminder of antibiotic resistance in the questionnaire that patients answer before visiting the doctor. This reminder reached not only the patients, then, but also the doctors who went through the questionnaire with the patients. The effect was clear at the clinic level. In the clinics where the reminder was included in the questionnaire, antibiotics use decreased by 12.6 percent compared to the clinics used as control.

If you want to know more about the study, read Linnea’s article in the Journal of Economic Behavior & Organization, where the interesting results are presented in detail. For example, the nudge appears to affect the interaction between doctors and patients, rather than the individual patients.

Can you arrange your everyday environment so that you live wisely without making rational choices?

Pär Segerdahl

Wickström Östervall, L. 2017. “Nudging to prudence? The effect of reminders on antibiotics prescriptions.” Journal of Economic Behavior & Organization 135: 39-52.

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Consent based on trust rather than information?

21 March, 2017 / Pär Segerdahl / 0 Comments

Consent to research participation has two dimensions. On the one hand, the researcher wants to do something with the participant: we don’t know what until the researcher tells. To obtain consent, the researcher must provide information about what will be done, what the purpose is, what the risks and benefits are – so that potential participants can decide whether to consent or not.

On the other hand, potential participants would hardly believe the information and consider consenting, if they didn’t trust the researcher or the research institution. If trust is strong, they might consent even without considering the information. Presumably, this occurs often.

The fact that consent can be given based on trust has led to a discussion of trust-based consent as more or less a separate form of consent, next to informed consent. An article in the journal Bioethics, for example, argues that consent based on trust is not morally inferior to consent based on information. Consent based on trust supports autonomy, voluntariness, non-manipulation and non-exploitation as much as consent based on information does, the authors argue.

I think it is important to highlight trust as a dimension of consent to research participation. Consent based on trust need not be morally inferior to consent based on careful study of information.

However, I get puzzled over the tendency to speak of trust-based consent as almost a separate form of consent, next to informed consent. That researchers consider ethical aspects of planned research and tell about them seems to be a concrete way of manifesting responsibility, respect and trustworthiness.

Carefully planning and going through the consent procedure is an ethical practice that can make us better humans: we change through what we do. It also opens up for respondents to say, “Thank you, I trust you, I don’t need to know more, I will participate.” Information and trust go hand in hand. There is dynamic interplay between them.

I guess that a background to talk of trust-based consent as almost a separate form of consent is another tendency: the tendency to purify “information” as cognitive and to idealize humans as rational decision makers. In addition, there is a tendency to regiment the information that “must” be provided.

This tendency to abstract and regulate “information” has made informed consent into what sometimes is perceived as an empty, bureaucratic procedure. Nothing that makes us better humans, in other words!

It would be unfortunate if we established two one-dimensional forms of consent instead of seeing information and trust as two dimensions of consent to research.

Another article in Bioethics presents a concrete model of trust-based consent to biobank research. Happily, the model includes willingly telling participants about biobank research. Among other things, one explains why one cannot specify which research projects will use the donated biological samples, as this lies in the future. Instead, one gives broad information about what kind of research the biobank supports, and one informs participants that they can limit the use of the material they donate if they want to. And one tells about much more.

Information and trust seem here to go hand in hand.

Pär Segerdahl

Halmsted Kongsholm, N. C., Kappel, K. 2017. Is consent based on trust morally inferior to consent based on information? Bioethics. doi: 10.1111/bioe.12342

Sanchini, V. et al. 2016. A trust-based pact in research biobanks. From theory to practice. Bioethics 4: 260-271. doi: 10.1111/bioe.12184

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Physicians’ experiences of do-not-resuscitate orders

21 September, 2016 / Pär Segerdahl / 0 Comments

Critically ill patients sometimes have such a poor prognosis that cardiopulmonary resuscitation for cardiac arrest (CPR) would not help. They are so weak that they would not survive the treatment. If they survive, they do so with even poorer quality of life. The physician can then write a so-called DNR decision, which means that CPR should not be performed.

Mona Pettersson, PhD student at CRB, writes her thesis on these decisions. I have previously written about her first study, in which she interviewed nurses about their experiences of DNR decisions at Swedish hematology and oncology departments.

This summer the Journal of Palliative Care and Medicine published the second study, in which physicians were interviewed about their experiences of these decisions.

In the interview material, Mona Pettersson discerns three roles that physicians perceive they have. They act as decision maker, as patient advocate and mediator for relatives, and as team member. Physicians describe their experiences of these roles, such as the importance of making clear to relatives that it is the physician who makes the decision – so that relatives don’t risk feeling guilty.

The interviews with physicians also contain descriptions of ethical difficulties associated with DNR decisions. Although the physicians emphasize that the decision is made on medical grounds, they also describe ethical challenges and trade-offs. The decisions seem to be especially difficult in hematology wards, where patients can get intensive treatment for a long time, and where even the treatment makes them ill, but almost up to the last moment can be regarded as treatable. Here decisions are made quickly and at a late stage. Physicians’ experiences of the decision not to resuscitate vary from experiencing that they make themselves God, to experiencing it as just one medical decision among others.

In her conclusion, Mona Pettersson emphasizes that the results indicate how DNR decisions are made not only on medical grounds (such as prognosis and prospect of surviving cardiopulmonary resuscitation). They are made also with reference also to ethical values such as autonomy and quality of life after resuscitation.

In her future research, Mona Petterson will examine the ethical skills needed in DNR decisions and how they can be learned and developed.

Pär Segerdahl

Pettersson, M. Hedström, M. and Höglund, A. Physicians’ experiences of do-not-resuscitate (DNR) orders in hematology and oncology care – a qualitative study. Journal of Palliative Care and Medicine. 2016. DOI: 10.4172 / 2165-7386.1000275

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Notebook, not Facebook

30 March, 2016 / Pär Segerdahl / 0 Comments

I take the liberty of striking a blow for the notebook.

I miss the voices people develop when they use to keep their own notes. The conversation with yourself gives depth – “I have thought about this” – to your conversation with others.

The erosion of collegial structures at universities is worrisome. But what especially concerns me is the notebook culture, which I believe needs to be rediscovered. Without own notebooks, no real education and no real knowledge.

It isn’t about withdrawing to one’s study to write esoteric notes. It is about developing one’s own groundwork in the life with others. It is developed in (temporary) seclusion, in response to life with others. Then you can converse, because you will have something to say, something of your own.

Cultures deepen through the rumination in diaries and notebooks. Without this simple practice, cultures erode and voices sound thinner. We need to carry culture on our own shoulders.

Kafka recorded in one of his notebooks a picture that I often think of. It is the image of messengers rushing around with messages that they received from other messengers. But it turns out that there is no author of these messages. There are only messengers. I see this as an image of a world without notebooks.

Kant spoke of human authority and autonomy. In Kafka’s picture there is no authority and no autonomy, for no one is the author of their own words: just the messengers of words from other messengers. For once being the author, not only the messenger of what other messengers passed on: wouldn’t that be something!

Become the author of your own words by taking notes! The notebook is the origin of all messages worth communicating. I am a notebook individualist.

To think and reflect is not only about having time. It is about using the time to converse with yourself. That conversation is lifelong. When you converse with others, you convey the lifelong conversation with yourself.

Artists have probably more than others retained the practice of using sketchbooks, of regularly practicing music more informally and privately, of making drafts of stories and novels. That practice gives them a basis to create. We have much to learn from the artists. They are the last to maintain culture, through the sketchbooks in which they constantly scribble.

Nothing is more responsible and authoritative than keeping your own notes. The notes don’t have to be brilliant or groundbreaking. Only your own sincere words with yourself. That is originality! Through the notebook you develop the integrity that is worth defending. And that is worth sharing with others, who of course also have notebooks.

I don’t want to read your Facebook updates, but perhaps your notes. You read mine here. So get a notebook if you don’t already have one. It is the most radical thing you can do today.

Pär Segerdahl

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Critique of the motivation for dynamic consent to biobank research

23 March, 2016 / Pär Segerdahl / 0 Comments

Biobank research has undeniably challenged research ethics and the requirement for informed consent. We are after all dealing with collection of biological samples for future, yet unspecified research. Thus, one cannot give donors specific information about the research in which their samples will be used. It might seem like asking them to consent to unknown research projects x, y, z.

While some argue that broad consent for future research is specific enough to be genuine consent to something – one can inform about the framework that applies to the research – others argue that biobank research undermines the autonomy of research participants. Something must therefore be done about it.

Dynamic consent is such a proposed measure. The idea is that participants in biobank research, through a website, will be kept continuously informed about planned research, and continually make decisions about their participation. Through this IT measure, participants are placed at the center of decision making process rather than transferring all power to the researchers. Dynamic consent empowers research participants and supports their autonomy, it is claimed.

In an article in the journal Bioethics, Linus Johnsson and Stefan Eriksson critically examine the understanding of autonomy in the debate on dynamic consent.

First, the authors argue that autonomy is misunderstood as a feat. Autonomy is rather a right people have to decide for themselves what to do in situations that matter to them.

Second, they argue that the concept of autonomy is used too broadly, hiding important distinctions. In fact, three different ways of respecting people are conflated:

Autonomy: respecting people’s right to decide for themselves about what to do.
Integrity: respecting people’s right to draw the lines between private and social life.
Authority: respecting people’s right to take responsibility for themselves, for their families, and for their relations to society.

Authority is respected by empowering people: by giving them the tools they need to live responsibly. In dynamic consent, the website is such a tool. It empowers participants to act as responsible citizens concerning the planning and carrying out of research in society.

By separating three forms of respect which are confused as “autonomy,” the authors can propose the following critical analysis of the motivation for dynamic consent. Rather than respecting people’s right to decide for themselves about what to do, the aim is to empower them. But if the empowerment forces them to sit in front of the computer to be informed, it violates their integrity.

Such intrusion could be justified if medical research were a suitable arena for people’s empowerment as citizens – an assumption which the authors point out is doubtful.

Pär Segerdahl

Johnson, L. and Eriksson, S. 2016. “Autonomy is a right, not a feat: How theoretical misconceptions have muddled the debate on dynamic consent to biobank research.” Bioethics, DOI: 10.1111/bioe.12254

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Tag: autonomy (Page 1 of 2)

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