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

Month: March 2023

Ethical challenges when children with cancer are recruited for research

Cancer is a common cause of death among children, but improved treatments have significantly increased survival, especially in high-income countries. A prerequisite for this development is research.

When we think of a hospital, we think mainly of the care given to patients there. But care and research are largely developed together in the hospitals. Treatments given in the hospitals are tested in research carried out in the hospitals. This overlap of care and research in the same setting creates ethical challenges. Not least because it can be difficult to see and maintain the differences when, as I said, the activities overlap.

Kajsa Norbäck, PhD student at CRB, investigates in an interview study Swedish healthcare professionals’ perceptions and experiences of ethical challenges when children with cancer are recruited for research in the hospitals where they are patients. Research is needed for future childhood cancer care, but what are the challenges when approaching children with cancer and their parents with the question of research participation?

The interview material is rich and difficult to summarize in a blog post, but I want to highlight a few findings that particularly impressed me. I recommend those interested to take the time to read the entire article in peace and quiet. Interview studies provide a living direct contact with reality from the perspective of the interviewees. Kajsa Norbäck writes that interview studies give us informative examples of ethical challenges. Such examples are needed to give the ethical reflection concreteness and grounding in reality.

The interviewed healthcare professionals particularly emphasized the importance of establishing a trusting relationship with the family. Only when you have such a relationship does it make sense to discuss possible research participation. Personally, I cannot help but interpret it as meaning that the care relationship with patient and family must be established first. It is within the framework of the care relationship that possible research participation can be discussed in a trusting manner. But trust can also be a dilemma, the interviews show. The interviewees stated that many families had so much trust in healthcare and research that it could feel too easy and predictable to get consent for research participation. They also had the impression that parents could sometimes give consent to research out of fear of not having done everything they could to save the child, as if research was a last chance to get effective care.

The challenge of managing the overlap of care and research also extends to the professional role of the physician. Physicians have a care responsibility, but since the care they can offer rests on research, they also feel a research responsibility: they feel a responsibility to recruit research participants from among their patients. This dual responsibility can naturally create conflicts of interest, of which they give informative examples in the interviews.

In the middle of this force field of challenges we have the child, who may have difficulty making itself heard, perhaps because many of us have difficulty being a listener. Here is what one of the interviewees says: “We often talk about informing and I think that’s a strange word. I think the greatest competence is to listen.” There is a lot to listen to in Kajsa Norbäck’s interview study as well, more than I can reproduce in a blog post. Read her article here: Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences.

Pär Segerdahl

Written by…

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

Norbäck, K., Höglund, A.T., Godskesen, T. and Frygner-Holm, S. Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences. BMC Medical Ethics 24, 23 (2023). https://doi.org/10.1186/s12910-023-00901-4

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Ethics needs empirical input

Science, science communication and language

All communications require a shared language and fruitful discussions rely on conceptual clarity and common terms. Different definitions and divergent nomenclatures is a challenge for science: across different disciplines, between professions and when engaging with different publics. The audience for science communications is diverse. Research questions and results need to be shared within the field, between fields, with policy makers and publics. To be effective, the language, style and channel should to be adapted to the audiences’ needs, values and expectations.

This is not just in public facing communications. A recent discussion in Neuron is addressing the semantics of “sentience” in scientific communication, starting from an article by Brett J Kagan et al. on how in vitro neurons learn and exhibit sentience when embodied in a simulated game world. The article was published in December 2022 and received a lot of attention: both positive media coverage and a mix of positive and negative reactions from the scientific community. In a response, Fuat Balci et al. express concerns about the key claim in the article: claims that the authors demonstrated that cortical neurons are able to (in vitro) self-organise and display intelligent and sentient behaviour in a simulated game-world. Balci et al. are (among other things) critical of the use of terms and concepts that they claim misrepresent the findings. They also claim that Kagan et al. are overselling the translational and societal relevance of their findings. In essence creating hype around their own research. They raise a discussion about the importance of scientific communication: media tends to relay information from abstracts and statements about the significance of the research, and the scientists themselves amplify these statements in interviews. They claim that overselling results has an impact on how we evaluate scientific credibility and reliability. 

Why does this happen? Balci et al. point to a paper by Jevin D. West and Carl T. Bergstrom, from 2021 on misinformation in and about science, suggesting that hype, hyperbole (using exaggeration as a figure of speech or rhetorical device) and publication bias might have to do with demands on different productivity metrics. According to West and Bergstrom, exaggeration in popular scientific writing isn’t just misinforming the public: it also misleads researchers. In turn leading to citation misdirection and citation bias. A related problem is predatory publishing, which has the potential to mislead those of us without the means to detect untrustworthy publishers. And to top it off, echo-chambers and filter bubbles help select and deselect information and amplify the messages they think you want to hear.

The discussion in Neuron has continued with a response by Brett J. Kagan et al., in a letter about scientific communication and the semantics of sentience. They start by stating that the use of language to describe specific phenomena is a contentious aspect of scientific discourse and that whether scientific communication is effective or not depends on the context where the language is used. And that in this case using the term “sentience” has a technical meaning in line with recent literature in theoretical biology and the free energy principle, where biotic self-organisation is defined as either active inference or sentient behaviour

They make an interesting point that takes us back to the beginning of this post, namely the challenges of multidisciplinary work. Advancing research in cross-disciplinary collaboration is often challenging in the beginning because of difficulties integrating across fields. But if the different nomenclatures and approaches are recognized as an opportunity to improve and innovate, there can be benefits.

Recently, another letter by Karen S. Rommelfanger, Khara M. Ramos and Arleen Salles added a layer of reflection on the conceptual conundrums for neuroscience. In their own field of neuroethics, calls for clear language and concepts in scientific practice and communication is nothing new. They have all argued that conceptual clarity can improve science, enhance our understanding and lead to a more nuanced and productive discussion about the ethical issues. In the letter, the authors raise an important point about science and society. If we really believe that scientific terminology can retain its technically defined meaning when we transfer words to contexts permeated by a variety of cultural assumptions and colloquial uses of those same terms, we run the risk of trivialising the social and ethical impact that the choice of scientific terminology can have. They ask whether it is responsible of scientists to consider peers as their only (relevant) audience, or if conceptual clarity in science might often require public engagement and a multidisciplinary conversation.

One could also suggest that the choice to opt for terms like “sentience” and “intelligence” as a technical characterisation of how cortical neurons function in a simulated in-vitro game-world, could be considered to be questionable also from the point of view of scientific development. If we agree that neuroscience can shed light on sentience and intelligence, we also have to admit that at as of yet, we don’t know exactly how it will illuminate these capacities. And perhaps that means it is too early to bind very specific technical meaning to terms that have both colloquial and cultural meaning, and which neuroscience can illuminate in as yet unknown ways?

You may wonder why an ethics blog writer dares to express views on scientific terminology. The point I am trying to make is that we all use language, but we also produce language. Everyday. Together. In almost everything we do. This means that words like sentience and intelligence belong to us all. We have a shared responsibility for how we use them. The decision to give these common words technical meaning has consequences for how people will understand neuroscience when the words find their way back out of the technical context. But there can also be consequences for science when the words find their way in, as in the case under discussion. Because the boundaries between science and society might not be so clearly distinguishable as one might think.

Josepine Fernow

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Josepine Fernow, science communications project manager and coordinator at the Centre for Research Ethics & Bioethics, develops communications strategy for European research projects

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We care about communication

Digital biomarkers to test new drugs for mental health

Somewhat simplified, we usually understand biomarkers as substances in the body that can be detected, for example, through blood or urine tests, and that indicate a biological state, such as cancers or diabetes. Biomarkers can be used to make a diagnosis, predict disease risks and to monitor an ongoing treatment.

Nowadays, people also talk about digital biomarkers. To get an idea of what it is all about, think of the smartphone applications that can record movement patterns, heart rate and more. The new digital biomarkers are measurable physiological or behavioural data that are collected in a similar way and where the measuring equipment is usually portable or placed in the body. This data can be followed in real time to monitor the patient’s health status and recovery, without the need for the patient to make repeated hospital visits. However, the question of how these digital data can be understood as biomarkers does not seem completely clear.

Some concurrently published articles in the journal Frontiers in Psychiatry discuss the possibility of using digital biomarkers to test the safety and efficacy of new drugs in mental health. For this to work, these new ways of collecting data and monitoring changes in real time must of course also work safely and effectively. They must moreover satisfy ethical and legal demands on data protection and oversight. The articles discuss these and other challenges. In one article, for example, the question of how we should understand “bio” when we go from traditional biomarkers to digital ones is discussed. Another paper presents results from an attempt to use a digital biomarker to predict cognitive function.

In the editorial introducing the articles, Deborah Mascalzoni, among others, emphasizes that the use of digital biomarkers still lacks a satisfactory regulated context and that issues of data protection and risks of discrimination when data of this kind are collected must be addressed. You can find the editorial here: Digital biomarkers in testing the safety and efficacy of new drugs in mental health: A collaborative effort of patients, clinicians, researchers, and regulators. There you will also find a link to all articles.

Pär Segerdahl

Written by…

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

Johanna Maria Catharina Blom, Cristina Benatti, Deborah Mascalzoni, Fabio Tascedda and Luca Pani. Editorial: Digital biomarkers in testing the safety and efficacy of new drugs in mental health: A collaborative effort of patients, clinicians, researchers, and regulators. Frontiers in Psychiatry, 2023. https://doi.org/10.3389/fpsyt.2022.1107037

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Philosophers in democratic conversations about ethics, research and society

Philosophers have an ambiguous position in the knowledge society which could support democratic conversations where truth and openness are united. On the one hand, philosophers are driven by a strong desire for the truth. They ask questions more often than they give answers, and they do not give answers until they have thoroughly explored the questions and judged that they can establish the truth, to speak a little pompously. On the other hand, philosophers cannot communicate their conclusions to society with the same authority that empirical scientists can communicate their findings. Philosophical reasoning, however rigorous it may appear to be, does not function as scientific evidence. It would be doubtful if a philosopher said, “A very clear reasoning which I recently carried out shows that…,” and expected people to accept the conclusion, as we expect people to accept the results of empirical studies.

Despite their strong desire to find the truth, philosophers can thus rarely “inform” about the truths they believe they have found, but must exercise restraint and present these truths as proposals, and then appeal to their interlocutors to judge the proposal for themselves. That is, to think for themselves. The desire to communicate one’s philosophical conclusions to others thus results in conversations on more or less equal terms, where more or less clear reasoning is developed together during the course of the conversation. The philosopher’s ambiguous position in the knowledge society can here act as a catalyst for conversations where the aspiration to think correctly, and the will to think freely, support each other.

The ambiguous position of philosophy in the knowledge society is evident in medical ethics, because here philosophy is in dialogue with patients, healthcare professionals and medical researchers. In medical ethics, there are sometimes so-called “ethics rounds,” where an ethicist visits the hospital and discusses patient cases with the staff from ethical perspectives. The role of the ethicist or philosopher in these conversations is not to draw the correct ethical conclusions and then inform the staff of the morally right thing to do. By striving for truth and by asking questions, the philosopher rather supports the staff’s own ethical reasoning. Of course, one or another of the philosopher’s own conclusions can be expressed in the conversation, but as a suggestion and as an invitation to the staff to investigate for themselves whether it can be so. Often the most important thing is to identify the crucial issues. The philosopher’s ambiguous standing can in these contexts act as a catalyst for good conversations.

Another area where the ambiguous position of philosophy in the knowledge society is evident is in research communication of ethics research, like the one we do here at CRB. Ethicists sometimes conduct empirical studies of various kinds (surveys, interviews and experiments). They can then naturally expect people (the general public or relevant groups) to take the results to heart. But these empirical studies are usually done to shed light on some ethical difficulty and to draw ethical, normative conclusions on good grounds. Again, these conclusions can rarely be communicated as research findings, so the communicator also has to exercise restraint and present the conclusions as relevant proposals to continue thinking and talking about. Research communication becomes not only informative and explanatory, but also thoughtful. It appeals to people to think for themselves. Awareness of the ambiguous position of philosophy can thus support research communication that raises open questions, in addition to disseminating and explaining scientific findings.

Since political conclusions based on scientific studies seem to have a similar ambiguous status to ethical and philosophical conclusions, philosophy could also inspire wiser democratic conversations about how research should be implemented in society. This applies not least to controversial issues, which often polarize and encourage debaters to make strong claims to possess the best evidence and the most rigorous reasoning, which they believe justifies their positions. But such a truth authority on how we should live and organize society hardly exists, even if we strive for the truth. As soon as we talk to each other, we can only make suggestions and appeal to our interlocutors to judge the matter for themselves, just as we ourselves listen to our interlocutors’ objections, questions and suggestions.

Strong pursuit of truth requires great openness. When we philosophize, these aspects are at best united. In this way, philosophy could inspire democratic conversations where people actually talk to each other and seek the truth together. Not just make their voices heard.

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

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