Clinical cancer trials convey a culture of hope

January 14, 2020

Pär SegerdahlActivities that we may want to keep apart often overlap. An example is cancer research and care. Clinical cancer centers often conduct research and recruit patients as research participants. Such research is important if we want to offer future patients better cancer treatments. However, does this also apply to patients participating in studies? Are they offered better care as research participants?

Together with five co-authors, Tove Godskesen recently published an interview study with clinical physicians carrying out clinical cancer trials in Sweden, Denmark and Finland. The questions were about what ethical challenges the physicians perceived in the care of patients who participate in clinical trials. Does the overlap of care and research create ethical challenges? Although several physicians mentioned challenges, there were tendencies to downplay ethical difficulties and to associate the overlap between research and care with care benefit.

Tove Godskesen sees indications of a culture of hope in clinical cancer trials, where patients and physicians reinforce the image of research participation as an opportunity to access the latest therapy. However, uncertain patients can challenge the picture by asking the physician to affirm that the experimental treatment is as good as the standard treatment. You do not know that. That is why you are doing research!

The authors do not make any claims about whether a culture of hope in clinical cancer trials is good or not. However, they believe that the culture needs to become visible and discussed openly. So that the ethical challenges when care and research overlap do not disappear from sight.

The culture of hope has several aspects that you can read more about in the article. For example, the attitude that it is better to avoid giving patients bad news.

Pär Segerdahl

Tove E Godskesen, Suzanne Petri, Stefan Eriksson, Arja Halkoaho, Margrete Mangset and Zandra E Nielsen. The culture of hope and ethical challenges in clinical trials: A qualitative study of oncologists and haematologists’ views. Clinical Ethics. First Published December 30, 2019. https://doi.org/10.1177/1477750919897379

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Christmas blog post about contemplation and wide horizons

December 19, 2019

Pär SegerdahlWhat does it mean to be contemplative? In a conversation, the philosopher Ludwig Wittgenstein addresses the issue through a contrast: professional racing motorists. A successful racing driver has one goal in mind: to break the speed record. It is not wrong to have such a well-specified goal. It is required if you want to be a professional racing motorist. However, the attitude encapsulates the mind. Any questions that do not take you closer to the goal become irrelevant. Imagine the driver discussing improvements to the carburetor with the mechanics. How would the atmosphere in the garage change if an inquisitive Socrates suddenly appeared and quietly wondered about the meaning of the sport? Endless questions without the slightest relevance to the adjustments of the carburetor! A racing motorist who wants to be the world champion cannot stop and contemplate different possibilities for human sports competition. Above all, not the possibility of a world where no one tries to break speed records. Who is this crazy fellow? Socrates must leave the garage.

As I said, there is nothing wrong with the racing motorist’s attitude; it is natural and often unavoidable. It has the dynamics of joy (and that of frustration). However, when it becomes too dominant, it restricts something else: the openness to the unknown, the sense of the unexpected. Big questions without given answers are seen as obscure, irrelevant and perhaps even dangerous, as they lack competitive edge and reduce the speed. The carburetor adjustments must be prioritized. Life as a competition must never vanish from sight. It could jeopardize the team spirit and the competitive advantages. If we discussed too many big and thought-provoking issues together as a society, it could even seduce the youth. The new generation loses the momentum that society needs. Young individuals are distracted from identifying with the specific goals that successful careers require. Socrates must leave society.

To think freely, is it nothing but useless folly? Small and large, useful and useless, are two themes that run through one of the great books of Chinese philosophy, Chuang Tzu. The book begins with a story about a huge fish, which soon turns into a huge bird, both so incredibly big that one would like to say that they exceed all dimensions. The huge bird is contrasted with two smaller creatures, a cicada and a dove, who simply cannot understand the big one. The bird almost merges with heaven itself. Can it even be called a bird, when it never flies from bush to bush? The small creatures cannot grasp the great bird. It lacks boundaries, like Socrates’ endless questioning. A related theme in Chuang Tzu is the usefulness of the useless. The book contains several stories of knotty and smelly trees, which, because of their uselessness for human purposes, are left free to grow big. “Everyone knows the usefulness of the useful,” writes Chuang Tzu, “but no one knows the usefulness of the useless.” Who reads Chuang Tzu in today’s China?

Perhaps we can say that Chuang Tzu develops contemplation and self-examination so far, that the self loses its boundaries and becomes one with heaven, just like the big bird. The wisdom that we can hear in Chuang Tzu is open to the infinite. Its boundlessness cannot be defined by teachings, doctrines or theories. It cannot be encapsulated in a philosophy or a religion. “To use what has a boundary to pursue what is limitless is dangerous,” warns Chuang Tzu. Dogmatism is as ancient as the wisdom that opens us to the unknown. In short, the boundless surpasses any doctrine about “the boundless.” If we dare to live with such wide horizons, we may understand voices like this one, “Plunge into the unknown and the endless and find your place there!” Totally useless words, which therefore can be useful in times that only understand the usefulness of the useful.

When philosophies and religions are defined so narrowly that they virtually function as cultural norms or party programs, they inhibit the freedom that was the point of the infinite, which we sought in its uselessness. When the search instead questions everything that restricts the mind, the contemplative endeavor can free the self from its encapsulation: the inner condition of lack of freedom.

Could this enable a humanity where people do not assert their personal interests against others? Without boundaries around the self, there is no one else to outcompete. Is there even an exploitable environment to pollute? We would let the world (and each other) be. However, such unequalled harmony cannot be defined as a goal without once again limiting freedom and making us encapsulated beings such as the cicada and the dove. “The understanding of the small cannot be compared to the understanding of the great.”

Is this happy news or is it just useless folly?

Pär Segerdahl

The Book of Chuang Tzu. (Translated by Martin Palmer.) Penguin Books, 1996

Ludwig Wittgenstein, Rush Rhees, Gabriel Citron, (ed.). 2015. Wittgenstein’s Philosophical Conversations with Rush Rhees (1939–50): From the Notes of Rush Rhees. Mind 124: 1–71.

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Communicating thought provoking research in our common language

December 11, 2019

Pär SegerdahlAfter having been the editor of the Ethics Blog for eight years, I would like to describe the research communication that usually occurs on this blog.

The Ethics Blog wants to avoid the popular scientific style that sometimes occurs in the media, which reports research results on the form, “We have traditionally believed that…, but a recent scientific study shows that…” This is partly because the Ethics Blog is run by a research center in ethics, CRB. Although ethics may involve empirical studies (for example, interviews and surveys), it is not least a matter of thinking. If you, as an ethicist, want to develop new recommendations on informed consent, you must think clearly and thoroughly. However, no matter how rigorously you think, you can never say, “We have traditionally believed that it is ethically important to inform patients about…, but recent philosophical thoughts show that we should avoid doing that.”

Thinking does not provide the authority that empirical research gives. As an ethicist or a philosopher, I cannot report my conclusions as if they were research results. Nor can I invoke “recent thoughts” as evidence. Thoughts give no evidence. Ethicists therefore present their entire thinking on different issues to the critical gaze of readers. They present their conclusions as open suggestions to the reader: “Here is how I honestly think about this issue, can you see it that way too?”

The Ethics Blog therefore avoids merely disseminating research results. Of course, it informs about new findings, but it emphasizes their thought provoking aspects. It chooses to reflect on what is worth thinking about in the research. This allows research communication to work more on equal terms with the reader, since the author and the reader meet in thinking about aspects that make both wonder. Moreover, since each post tries to stand on its own, without invoking intellectual authority (“the ethicists’ most recent thoughts show that…”), the reader can easily question the blogger’s attempts to think independently.

In short: By communicating research in a philosophical spirit, science can meet people on more equal terms than when they are informed about “recent scientific findings.” By focusing on the thought provoking aspects of the research, research communication can avoid a patronizing attitude to the reader. At least that is the ambition of the Ethics Blog.

Another aspect of the research communication at CRB, also beyond the Ethics Blog, is that we want to use our ordinary language as far as possible. Achieving a simple style of writing, however, is not easy! Why are we making this effort, which is almost doomed to fail when it comes to communicating academic research? Why do Anna Holm, Josepine Fernow and I try to communicate research without using strange words?

Of course, we have reflected on our use of language. Not only do we want to reach many different groups: the public, patients and their relatives, healthcare staff, policy makers, researchers, geneticists and more. We also want these groups to understand each other a little better. Our common language accommodates more human agreement than we usually believe.

Moreover, ethics research often highlights the difficulties that different groups have in understanding each other. It can be about patients’ difficulties in understanding genetic risk information, or about geneticists’ difficulties in understanding how patients think about genetic risk. It may be about cancer patients’ difficulties in understanding what it means to participate in clinical trials, or about cancer researchers’ difficulties in understanding how patients think.

If ethics identifies our human difficulties in understanding each other as important ethical problems, then research communication will have a particular responsibility for clarifying things. Otherwise, research communication risks creating more communication difficulties, in addition to those identified by ethics! Ethics itself would become a communication problem. We therefore want to write as clearly and simply as we can, to reach the groups that according to the ethicists often fail to reach each other.

We hope that our communication on thought provoking aspects of ethics research stimulates readers to think for themselves about ethical issues. Everyone can wonder. Non-understanding is actually a source of wisdom, if we dare to admit it.

Pär Segerdahl

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Ethical issues when gene editing approaches humanity

December 2, 2019

Pär SegerdahlGene editing technology, which already is used to develop genetically modified organisms (GMOs), could in the future also be used clinically in humans. One such application could be genetic modification of human embryos, editing genes that would otherwise cause disease.

Of course, the scenario of ​​clinical uses of genetic modification in humans arouses deep concern and heated debate. In addition to questions about efficacy and safety for the people who would be directly affected by the treatments, huge issues are raised about the fate of humanity. When gene editing is performed on germ cells, the changes are passed on to future generations.

What is often overlooked in the debate are ethical questions about the research that would have to precede such clinical applications. In order to develop genetic techniques that are effective and safe for humans, much research is required. One must, for example, test the techniques on human embryos. However, since genetic editing is best done at the time of fertilization (if done on the embryo, not all cells are always modified), a large number of donated gametes are probably required, where the eggs are fertilized in the laboratory to create genetically modified embryos.

Emilia Niemiec and Heidi Carmen Howard, both at CRB, draw attention to these more immediate ethical concerns. They point out that already the research, which precedes clinical applications, must be carefully considered and debated. It raises its own ethical issues.

In a letter to Nature, they highlight the large number of donated eggs that such research is likely to need. Egg donation involves stress and risks for women. Furthermore, the financial compensation they are offered can function as undue incentive for economically disadvantaged women.

Emilia Niemiec and Heidi Carmen Howard write that women who decide on egg donation should be given the opportunity to understand the ethical issues, so that they can make an informed decision and participate in the debate about gene editing. I think they have a good point when they emphasize that many ethical issues are raised already by the research work that would precede clinical applications.

A question I ask myself is how we can communicate with each other about deeply worrying future scenarios. How do we distinguish between image and reality when the anxiety starts a whole chain reaction of frightening images, which seem verified by the anxiety they trigger? How do we cool down this psychological reactivity without quenching the critical mind?

In short, how do we think and talk wisely about urgent future issues?

Pär Segerdahl

Niemiec, E. and Carmen Howard, H. 2019. Include egg donors in CRISPR gene-editing debate. Nature 575: 51

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Broad and deep consent for biobanks

November 18, 2019

Pär SegerdahlA new article on consent for biobanks manages to surprise me. How? By pointing out what ought to be obvious! If we want to judge what kind of consent works best for biobanks, then we should look at today’s biobanks and not look back at more traditional medical research.

The risks in traditional medical research are mainly physical. Testing new substances and interventions on human subjects can harm them. Potential research participants must therefore be informed about these physical risks, which are unique to each specific project. For this reason, study-specific informed consent is essential in traditional medical research.

In biobank research, however, the risks are primarily informational. Personal data may end up in the wrong hands. The risks here are not so much linked to the specific projects that use material from the biobank. The risks are rather linked to the biobank itself, to how it is governed and controlled. If we want to give biobank participants ethical protection through informed consent, it is information about the biobank they need, not about specific projects.

In the debate on consent for biobanks, study-specific consent figured as a constant requirement for what informed consent must be. However, in the context of biobanks, that requirement risks placing an irrelevant demand on biobanks. Participants will receive the wrong protection! What to do?

Instead of looking back, as if study-specific consent were an absolute norm for medical research, the authors formulate three requirements that are relevant to today’s biobanks. First, potential participants should be informed about relevant risks and benefits. Second, they should be given an opportunity to assess whether research on the biobank material is in line with their own values. Finally, they should be given ethical protection as long as they participate, as well as opportunities to regularly reconsider their participation.

In their comparison of the various forms of consent that have figured in the debate, the authors conclude that broad consent particularly well satisfies the first criterion. Since the risks are not physical but concern the personal data that the biobank stores, information to participants about the biobank itself is more relevant than information about the specific projects that use the services of the biobank. That is what broad consent delivers.

However, the authors argue that broad consent fails to meet the latter two criteria. If potential participants are not informed about specific projects, it becomes difficult to judge whether the biobank material is used according to their values. In addition, over time (biobank material can be saved for decades) participants may even forget that they have provided samples and data to the biobank. This undermines the value of their right to withdraw consent.

Again, what to do? The authors propose a deepened form of broad consent, meant to satisfy all three requirements. First, the information provided to participants should include a clear scope of the research that is allowed to use the biobank material, so that participants can judge whether it is consistent with their own values, and so that future ethical review can assess whether specific projects fall within the scope. Secondly, participants should be regularly informed about the activities of the biobank, as well as reminded of the fact that they still participate and still have a right to withdraw consent.

Ethical reasoning is difficult to summarize. If you want to judge for yourself the authors’ conclusion that broad and deep consent is best when it comes to biobanks, I must refer you to the article.

In this post, I mainly wanted to highlight the originality of the authors’ way of discussing consent: they formulate new relevant criteria to free us from old habits of thought. The obvious is often the most surprising.

Pär Segerdahl

Rasmus Bjerregaard Mikkelsen, Mickey Gjerris, Gunhild Waldemar & Peter Sandøe. Broad consent for biobanks is best – provided it is also deep. BMC Medical Ethics volume 20, Article number: 71 (2019)

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An extended concept of consciousness and an ethics of the whole brain

November 4, 2019

Pär SegerdahlWhen we visit a newly operated patient, we probably wonder: Has she regained consciousness? The question is important to us. If the answer is yes then she is among us, we can socialize. If the answer is negative then she is absent, it is not possible to socialize. We can only wait and hope that she returns to us.

Michele Farisco at CRB proposes in a new dissertation a more extensive concept of consciousness. According to this concept, we are conscious without interruption, basically, as long as the brain lives. This sounds controversial. It appears insensitive to the enormous importance it has for us in everyday life whether someone is conscious or not.

Maybe I should explain right away that it is not about changing our usual ways of speaking of consciousness. Rather, Michele Farisco suggests a new neuroscientific concept of consciousness. Science sometimes needs to use familiar words in unfamiliar ways. For example, biology cannot speak of humans and animals as an opposition, as we usually do. For biology, the human is one of the animals. Just as biology extends the concept of an animal to us humans, Michele Farisco extends the concept of consciousness to the entire living brain.

Why can an extended concept of consciousness be reasonable in neuroscience? A simple answer is that the brain continues to be active, even when in the ordinary sense we lose consciousness and the ability to socialize. The brain continues to interact with the signals from the body and from the environment. Neural processes that keep us alive continue, albeit in modified forms. The seemingly lifeless body in the hospital bed is a poor picture of the unconscious brain. It may be very active. In fact, some types of brain processes are extra prominent at rest, when the brain does not respond to external stimuli.

Additional factors support an extended neuroscientific concept of consciousness. One is that even when we are conscious in the usual sense, many brain processes happen unconsciously. These processes often do the same work that conscious processes do, or support conscious processes, or are shaped by conscious processes. When we look neuroscientifically at the brain, our black and white opposition between conscious and unconscious becomes difficult to discern. It may be more reasonable to speak of continuities, of levels of the same consciousness, which always is inherent in the living brain.

In short, neuroscience may gain from not adopting our ordinary concept of consciousness, which makes such an opposition between conscious and unconscious. The difference that is absolute when we visit a newly operated patient – is she conscious or not? – is not as black and white when we study the brain.

Does Michele Farisco propose that neuroscience should make no difference whatsoever between what we commonly call conscious and unconscious, between being present and absent? No, of course not. Neuroscience must continue to explore that difference. However, we can understand the difference as a modification of the same basic consciousness, of the same basic brain activity. Neuroscience needs to study differences without falling victim to a black and white opposition. Much like biology needs to study differences between humans and other animals, even when it extends the concept of an animal to the human.

The point, then, is that neuroscience needs to be open to both difference and continuity. Michele Farisco proposes a neuroscientific distinction between aware and unaware consciousness. It captures both aspects, the difference and the continuity.

Michele Farisco’s extended concept of consciousness also has ethical consequences. It can motivate an ethics of the whole brain, not just of the conscious brain, in the usual sense. The question is no longer, merely, whether the patient is conscious or not. The question is at what level the patient is conscious. We may need to consider ethically even unconscious brains and brain processes, in the ordinary sense. For example, by talking calmly near the patient, even though she does not seem to hear, or by playing music that the patient usually appreciates.

Perhaps we should not settle for waiting and hoping that the patient will return to us. The brain is already here. At several levels, this brain may continue to socialize, even though the patient does not seem to respond.

If you want to know more about Michele Farisco’s extended concept of consciousness and his ethics of the whole brain, read the dissertation that he recently defended. You can also read about new technological opportunities to communicate with patients suffering from severe disorders of consciousness, and about new opportunities to diagnose such disorders.

Pär Segerdahl

Farisco, Michele. 2019. Brain, consciousness and disorders of consciousness at the intersection of neuroscience and philosophy. (Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine 1597.) Uppsala: Acta Universitatis Upsaliensis.

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Honest questions examining our intellectual sinfulness

October 21, 2019

Pär SegerdahlWhy should we hold our philosophical tradition in high esteem? Why should we admire Socrates and other great thinkers? Because they strengthened reason? Because they taught humanity to set emotions aside and instead purify facts and logic?

If that were true, we should admire the philosophers for armoring humanity. For turning us into clever neurotics without contact with our emotional life.

I believe the greatness of these philosophers is more simple, humble and human. They were embarrassingly aware of their own intellectual sinfulness. They had the courage to confess their sins and to examine them closely. They had the courage to know themselves.

That sincere humility, I believe, marks true thinkers from all parts of the world. Just as Socrates, in the middle of a discourse, could hear an inner voice stop him from speaking with intellectual authority on some topic, Lao Tzu saw it as a disease to speak as if we knew what we do not know.

These genuine thinkers hardly spoke with intellectual certainty. At least not in their most creative moments. They probably felt ashamed of the cocksure voice that marks many of our intellectual discussions about prestigious topics. They probably spoke tentatively and reasoned hesitantly.

We are all fallible. Philosophy is, at heart, intense awareness of this human fact. How does such awareness manifest in a thinker? Usually through questions that openly confess that, I know that I do not know. A philosophical inquiry is a long series of confessions. It is a series of sincere questions exposing a deep-rooted will to control intellectually the essence of various matters. The questions become clearer as we come to see more distinctly how this will to power operates in us. When we see how our desire to dictate intellectually what must be true, blinds us to what is true.

Do you and I, as academics, dare to admit our intellectual sinfulness? Do we dare to confess that we do not know? Do we have the courage to speak tentatively and to reason hesitantly?

I believe that we would do a great service to ourselves and to humanity if we more often dared to speak openly in such a voice. However, we are facing a difficulty of the will. For there is an expectation that researchers should master facts and logic. Surely, we are not paid to be ignorant and irrational. Therefore, must we not rather disseminate our knowledge and our expertise?

Of course! However, without awareness of our intellectual sinfulness, which could stop Socrates in the middle of a sentence, we run the risk of contributing to the disease that he treated in himself. We display not only what we happen to know, but also a shiny facade that gives the impression that we control the truth about important matters.

In short, we run the risk of behaving like intellectual Pharisees, exhibiting an always well-polished surface. Below that surface, we wither away, together with the society to which we want to contribute. We lose touch with what truly is alive in us. It succumbs under the pressure of our general doctrines about what must be true. Intellectualism is a devastating form of fact denialism. In its craving for generality, it denies what is closest to us.

Do not armor yourself with rationalism as if truth could be controlled. Instead, do what the greatest thinkers in the history of all of humanity did. Open yourself to what you do not know and explore it in earnest.

You are vaster than your imagined knowledge. Know yourself!

Pär Segerdahl

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