When order creates disorder

February 4, 2020

Pär SegerdahlScientific publications often have more than one author. The authorship order then becomes a sensitive issue for academics, since it counts. A good author position counts as good scientific merit. The authorship order also determines the funding allocation to the author’s university department. A good author position gives more money to the department.

The only problem is that there is no proper authorship order. Different research areas have their own traditions, which change over time. For example, as scientific articles are written jointly by more and more co-authors, the last positions are becoming increasingly important, as they are more visible than the cluster in the middle. Suddenly, you can feel proud to be the second to last among 20 authors.

However, does the expert who assesses your application believe that it is a merit that you are second to last in the author list? Does your university think that such a position should motivate more money to your department than a position in the middle?

When everyone wants to count on an order that does not really exist, it is understandable if administrative efforts are made to regulate authorship order. In an article in the journal Research Ethics, Gert Helgesson exemplifies how a Swedish university introduced its own new rules for the allocation of financial resources based on, among other things, position in the author list.

Gert Helgesson warns that such an administratively imposed order easily creates more disorder. Although it is only meant to regulate the allocation of funds, it can contribute to a local tradition concerning which author positions are considered desirable. The fragmentation increases rather than decreases.

To count or not to count, that is the question. It leads us right into this maze.

Pär Segerdahl

Gert Helgesson. “Authorship order and effects of changing bibliometrics practices.” Research Ethics. First Published January 21, 2020, https://doi.org/10.1177/1747016119898403

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Neuroethics as foundational

January 28, 2020

Pär SegerdahlAs neuroscience expands, the need for ethical reflection also expands. A new field has emerged, neuroethics, which celebrated its 15th anniversary last year. This was noted in the journal AJOB Neuroscience through an article about the area’s current and future challenges.

In one of the published comments, three researchers from the Human Brain Project and CRB emphasize the importance of basic conceptual analysis in neuroethics. The new field of neuroethics is more than just a kind of ethical mediator between neuroscience and society. Neuroethics can and should contribute to the conceptual self-understanding of neuroscience, according to Arleen Salles, Kathinka Evers and Michele Farisco. Without such self-understanding, the ethical challenges become unclear, sometimes even imaginary.

Foundational conceptual analysis can sound stiff. However, if I understand the authors, it is just the opposite. Conceptual analysis is needed to make concepts agile, when habitual thinking made them stiff. One example is the habitual thinking that facts about the brain can be connected with moral concepts, so that, for example, brain research can explain to us what it “really” means to be morally responsible for our actions. Such habitual thinking about the role of the brain in human life may suggest purely imaginary ethical concerns about the expansion of neuroscience.

Another example the authors give is the external perspective on consciousness in neuroscience. Neuroscience does not approach consciousness from a first-person perspective, but from a third-person perspective. Neuroscience may need to be reminded of this and similar conceptual limitations, to better understand the models that one develops of the brain and human consciousness, and the conclusions that can be drawn from the models.

Conceptual neuroethics is needed to free concepts from intellectual deadlocks arising with the expansion of neuroscience. Thus, neuroethics can contribute to deepening the self-understanding of neuroscience as a science with both theoretical and practical dimensions. At least that is how I understand the spirit of the authors’ comment in AJOB Neuroscience.

Pär Segerdahl

Emerging Issues Task Force, International Neuroethics Society (2019) Neuroethics at 15: The Current and Future Environment for Neuroethics, AJOB Neuroscience, 10:3, 104-110, DOI: 10.1080/21507740.2019.1632958

Arleen Salles, Kathinka Evers & Michele Farisco (2019) The Need for a Conceptual Expansion of Neuroethics, AJOB Neuroscience, 10:3, 126-128, DOI: 10.1080/21507740.2019.1632972

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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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