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

Month: October 2023

Two orientations of philosophical thought

There are many philosophical movements and several ways of dividing philosophy. I would like to draw attention to two orientations of philosophical thought that are never usually mentioned, but which I believe characterize philosophical thinking. Although unnamed, the two orientations are so different from each other that they can make philosophers roll their eyes when they run into each other: “What kind of nonsense is this?”

I am not referring to the division between analytic and continental philosophy, which is a known source of rolling eyes. I am referring to a division that rather applies to ourselves as thinking beings: our innermost philosophical disposition, so to speak.

So do not think of famous philosophers or of the philosophical movements they are considered to represent. Now it is just about ourselves. Think about what it is like to discuss a question that is felt to be urgent, for example: “Why has humanity failed to create a peaceful world?” How do we usually react to such questions? I dare say many of us wish we could answer them. This is the nature of a question. A question demands an answer, just as a greeting demands a greeting back. And since the answer to an important question should have the same urgency as the question, it feels very important to answer. This has the consequence that the discussion of the question soon turns into a discussion of several different answers, which compete with each other. Perhaps a few particularly committed participants argue among themselves for and against increasingly complicated answers at a speed that leaves the others behind. It feels humiliating to sit there and not be able to propose a single answer with accompanying arguments that it must be the right answer.

Many of us are probably also familiar with how afterwards, when we have time to think in peace and quiet, we can suddenly see possibilities that never occurred to us during the discussion: “So obvious! Why didn’t I see that?” When we are given time to think for ourselves, we are free from a limitation that governed the discussion. What limitation? The limitation that the question must be answered and the answer defended as the correct answer. Why were we so stimulated to find the answer to the question and defend it against the competitors? Was it a good question that gave rise to all these divergent answers, as if someone had thrown a match into a stockpile of fireworks? Already in its wording, the question blames humanity for not being able to resolve its conflicts. Is this not already a conflict? The question pits us against humanity, and when the answers and arguments start to hail, the debaters are also pitted against each other. The discussion becomes yet another example of our tendency to end up on different sides in conflicts.

If we notice how our noble philosophical discussion about world peace threatens to degenerate into the very strife we debate and we want to seek the answer in a more responsible way, then perhaps we decide to review the answers and arguments that have been piled up. We classify them as positions and schools of thought and practice identifying them to avoid well known fallacies, which are classified with equal philosophical rigor. In the future, this hard work will finally lead us to the definitively correct answer, we think. But the focus is still on the answers and the arguments, rather than on the question that ignited the entire discussion. The discussion continues to exemplify our tendency toward conflict, but now in terms of a rigorous philosophical classification of the various known positions on the issue.

The difference between the two orientations concerns where we place our emphasis: on the question or on the answer? Either we feel the question propels us, like a starting shot that makes us run for the answer at the finish line. The answer may be in terms of the human mind, the structure of society, our evolutionary history and much more. Or we feel the question paralyzes us, like an electric shock that numbs us so that we have to sit down at the starting line and examine the question. What already happened in the question? Am I not also humanity? Who am I to ask the question? Does not the question make a false distinction between me and humanity, similar to those made in all conflicts? Is that why I cannot discuss the question without becoming an example of the problem myself?

Consider the two philosophical orientations side by side. One of them experiences the question as a stimulating starting signal and runs for the answer. The other experiences the question as a numbing electric shock and remains seated at the starting line. It cannot surprise us that these two philosophical dispositions have difficulty understanding each other. If you emphasize the answer and run for it, stopping at the question seems not only irresponsible, but also unsportsmanlike and inhibiting. Is it forbidden to seek the right answer to urgent questions? If, on the other hand, you emphasize the question and stay seated at the starting line, it seems rash to run for the answer, even when the race follows a rigorously ordered pattern. Did not the starting shot go off too early so that the race should be declared invalid, even though it otherwise went according to the strict rules of the art?

When we consider the two orientations side by side, we can note another difference. Emphasizing the answer directs our attention to the subject of the question: “humanity throughout history.” Emphasizing the question directs our attention to the subject who asks it: to myself. Again, it can hardly surprise us that the two orientations have difficulty understanding each other. Both may seem to be avoiding the subject!

Here one might want to object that even this distinction between two philosophical orientations places people on different sides of a conflict. But maybe we can recognize ourselves in both tendencies, although we lean more in one direction? Is not philosophical thinking often a dialogue between these tendencies? Do we not become more peaceful when we see the two philosophical dispositions side by side? Perhaps we understand each other better when we see the possibility of emphasizing both the question and the answer. We suddenly realize why we sound so different when we philosophize, despite the fact that we are all thinking beings, and we no longer need to exclaim: “What kind of nonsense is this?”

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

Thinking about thinking

Ethics Council at Uppsala Region: Healthcare workers shouldn’t have to report undocumented patients

Last week, the Ethics Council in Region Uppsala sent a letter to the Ministry of Justice where the Council dissociates itself from a proposal in the Tidö Agreement, a political agreement between four parties in the Swedish Parliament. The part of the agreement that the Ethics Council dissociates itself from is a proposed obligation for healthcare professionals to report patients who are undocumented migrants to authorities.

The Ethics Council writes that such a duty would be in conflict with both international and national conventions and laws. It is also contrary to the ethics of all professions in healthcare and would entail a serious threat to patient safety. Healthcare workers have not signed up to enforce decisions on expulsion or refusal of entry. They are assigned to, and their expertise relates to, the assessment of patients’ needs and to provide the best available care with those needs as a starting point.

In a reflection on the Swedish healthcare legislation, the Ethics Council also writes that an obligation to report undocumented migrants is contrary to the principle of human dignity. The principle states that all human beings have equal value and the same right to care. This includes everyone, regardless of whether we have a right to stay in Sweden or not.

The Chair of the Ethics Council, Niklas Juth, today publishes a post in our Swedish language version of this blog which also contains the entire letter sent to the Ministry of Justice. If you read Swedish, you can find his blog post here: Etikrådet i Region Uppsala tar avstånd från förslaget om anmälningsplikt för vårdpersonal.

Pär Segerdahl

Written by…

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

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Empirical ethics nuances ethical issues

A few years ago, my colleague Pär Segerdahl published a blog post on why bioethicists do empirical studies. He pointed out that surveys and interview studies on what people think hardly provide evidence that can decide controversial ethical issues, for example whether euthanasia should be allowed. Empirical studies rather give us a better grasp of the problem itself. They help us see what is actually at stake for people. I agree with him that ethical issues are not decided by surveys and interview studies and that such studies rather help us to see more clearly the meaning of the issues.

In this post, I want to further exemplify how empirical methods can nuance ethical questions and help us see what is at stake for people: help us see what we need to consider in the ethical discussion. I have in mind how, through a well-considered choice of empirical method, one can better describe the relative importance of ethical difficulties, values and preferences among stakeholders, as well as conflicts between ethical views. How? I am thinking of methods where respondents do not just answer what they think on certain individual issues, but are faced with complex scenarios where several factors are simultaneously at stake. Even if you have the firm opinion that drugs should not have side effects, are you perhaps still prepared to choose such a drug if it is more effective against your symptoms than other drugs, or is cheaper, or easier to use? In such studies, we create a multidimensional world with nuances for respondents to make complex decisions in.

Here is my example: Soon, therapies based on human embryonic stem cells may become a reality for patients with Parkinson’s disease. But is it morally acceptable to use human embryonic stem cells (hESC) for drug therapy? This has long been a controversial issue, partly because the embryo is destroyed when the stem cells are harvested. Perhaps the question is about to become even more topical now, when countries are changing legislation in a direction that gives the embryo a higher status and more legal protection. It is therefore particularly important that research provides a nuanced picture of the issues. In light of the political landscape and the new possibilities for treating patients with Parkinson’s, a more complex empirical method can support a better contemporary discussion about what types of research and therapies are within the scope of what can be allowed to be done with an embryo. The discussion concerns both ethics and law and must also include scientific challenges to ensure that stem cell research and therapies are carried out in ethically acceptable ways.

A common way to empirically examine the ethical issue is to look at the ethical arguments for and against the destruction of human embryos: to examine how different actors think and feel about this. Undoubtedly, such studies help us see what is at stake. But they can also easily steer respondents towards a yes-or-no answer, a pro-or-against attitude. Therefore, it is important to choose an empirical method that elicits perceived benefits and risks and explores multiple dimensions of the problem. How do patients feel about taking a medicine based on leftover embryos that not only relieves their symptoms but also repairs the damage, while the level of knowledge is low? It is not easy to answer such a question, but reality often has this complexity.

One method that can stage such complex considerations is a choice-based survey called Discrete Choice Experiments (DCE). With that method, we can investigate ethically sensitive issues and use the results to describe more fully the relative importance of ethical difficulties, values and preferences among stakeholders, as well as conflicts between ethical views. DCE provides an understanding of the balance between factors involved in different situations. In a new article in BMC Medical Ethics, my colleagues and I have investigated which factors are associated with the preferences of patients with Parkinson’s disease regarding embryonic stem cell-based treatments for the disease in the future. We invited patients to participate in a web-based choice-based experiment to assess the importance of the following factors: (1) type of treatment, (2) purpose of the treatment, (3) available knowledge about different types of treatment, (4) effect on symptoms and (5) the risk of serious side effects. The results showed that the fourth factor, “effect on symptoms,” was the most important factor in the choice of treatment option. Patients’ previous experience with treatment, side effects and advanced treatment therapy, as well as religious beliefs were associated with what they thought was most important, but not their view of what an embryo is. If you want to read more, you can find the article here: Patients accept therapy using embryonic stem cells for Parkinson’s disease: a discrete choice experiment.

These kinds of results from DCE studies can, in my opinion, help us to understand and frame ethical questions in ways that reflect how people think when multiple factors are at stake simultaneously. I believe that the more realistic complexity of such studies can contribute to more informed ethical considerations. I believe that they could also strengthen democratic processes by giving public conversation a background of more nuanced empirical findings.

Written by…

Jennifer Viberg Johansson, Associate Professor in Medical Ethics at Uppsala University’s Centre for Research Ethics & Bioethics.

Bywall, K.S., Drevin, J., Groothuis-Oudshoorn, C. et al. Patients accept therapy using embryonic stem cells for Parkinson’s disease: a discrete choice experiment. BMC Med Ethics 24, 83 (2023). https://doi.org/10.1186/s12910-023-00966-1

This post in Swedish

Ethics needs empirical input

How clearly are ethical approval and informed consent reported in published articles?

In a scientific article, it is of course essential that the authors describe the aim, methods and results of the study. But all researchers also have a research ethical responsibility to reflect on ethical aspects of the work and to plan and carry out their studies in accordance with relevant laws and guidelines. The ethical approach in the study should also be described in the article. This description is not as extensive as the method description, but certain information about ethical approval and informed consent should be given with sufficient detail. If the study also entailed specific ethical challenges, perhaps because it involved vulnerable participants such as seriously ill or dying patients, then the article should report how the challenges were handled regarding, for example, obtaining informed consent.

Although scientific journals have the standard that information on ethical approval and informed consent must be declared, it is unclear how well this requirement is complied with in practice, by both authors and journal editors. A group of ethics researchers, including Tove Godskesen, William Bülow and Stefan Eriksson linked to CRB, recently investigated this question within a relevant field, namely research on palliative and end-of-life care. Patients who participate in such research can be considered vulnerable and research in this area involves particular ethical challenges. How well do scientific publications in the field meet the requirements for reporting ethical approval and informed consent?

The ethicists’ survey was conducted on 169 empirical studies in 101 journals, published after January 1, 2019. It was limited to studies conducted in Norway and Sweden, as the author group was well acquainted with the regulations and practices of ethical review in these countries and could therefore assess whether the articles contained information about relevant laws and authorities. To rate how well the articles reported ethical approval and consent, a scoring scale was created from 0 to 3. Articles with no reporting at all received a score of 0 and articles with minimal reporting (e.g., “Ethical approval was granted”) received a score of 1. If the article contained clear and concise statements about ethical approval and informed consent, and in addition included one piece of detailed information (such as the name of the committee or authority that gave the approval), then the article received a score of 2.

An original feature of the examination is the detailed requirements for obtaining the highest score. The requirements for scoring 3 are intended to also serve as a suggestion for best practice. They are proposed as a possible basis for clearer guidelines in the future for authors, journal editors and peer reviewers. What details must be reported to get the score 3? No irrelevant details, but perfectly reasonable information if you think about it. For example, the identity of the review board should be disclosed as well as the identification number of their decision. Why? To be able to contact the board for verification or questions, for readers to be able to see that the research complies with relevant laws and ethical guidelines, and for the public to be able to access the information. One should also mention the Act under to which the decision on ethical approval was made. Why? It shows that the researchers are ethically proficient and it helps editors and reviewers to compare the statements with legal requirements in doubtful cases. Regarding informed consent, one should state, among other things, what type of consent was obtained and from whom the consent was obtained. Why? So that one can assess whether the procedures meet ethical requirements in the current case. In palliative care research, for example, both the patients and their families can be involved in the consent process. Also for the informed consent, relevant legislation should be indicated to demonstrate awareness of legal requirements and to enable critical review.

The requirements are therefore about completely reasonable information that should be easy to provide. But what were the results of the survey? I content myself with reproducing the percentage of articles that received the lowest and the highest scores. A non-negligible proportion of the articles contained no reported information at all and got 0 points: 5% for ethical approval and 13% for informed consent. A larger but still small proportion of the articles reported sufficiently detailed information to receive the highest score: 27% for ethical approval and 19% for informed consent.

Considering that the requirements for the highest score can be considered reasonable and not particularly onerous, the results are disappointing. The substandard reporting creates uncertainty about the ethical rigor of studies, the authors write in their conclusion, which is particularly troubling for studies with vulnerable participants, such as patients in palliative and end-of-life care, who require special ethical considerations.

What can we do about the problem? A common measure is training in research ethics, which is of course important. But the authors suggest that a more effective way to quickly bring about change is for scientific journals to start making clearer demands on how ethical approval and informed consent must be reported in articles to be considered for publication. So why not use the requirements to get the highest score on this survey as a template? They are proposed as a reasonable description of best practice. Read the survey here: How do journals publishing palliative and end-of-life care research report ethical approval and informed consent?

In a box in the article, the authors cite an exemplary description of ethical approval and informed consent that includes the details for score level 3. It strikes me how clarifying it is to see a good example, so look for the box in the article.

Pär Segerdahl

Written by…

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

Godskesen, T., Vie, K.J., Bülow, W., Holmberg, B., Helgesson, G. and Eriksson, S. (2023), How do journals publishing palliative and end-of-life care research report ethical approval and informed consent? Learned Publishing. https://doi.org/10.1002/leap.1580

This post in Swedish

Thinking about authorship