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

Month: October 2021

Philosophical research communication

How do you communicate about research with people who are not researchers? The scientific results usually presuppose a complicated intellectual framework, which the researchers have acquired through long education and experience. How can we talk about their research with people who are not researchers?

At CRB, we take research communication seriously, so this question follows us daily. A common way to solve the problem is to replace researchers’ complex intellectual frameworks with simple images, which people in general are more familiar with. An example could be comparing a body cell with a small factory. We thus compare the unknown with the familiar, so that the reader gets a certain understanding: “Aha, the cell functions as a kind of factory.”

Giving research results a more comprehensible context by using images that replace the researchers’ intellectual framework often works well. We sometimes use that method ourselves here at CRB. But we also use another way of embedding the research, so that it touches people. We use philosophical reflection. We ask questions that you do not need to be an expert to wonder about. The questions lead to thoughts that you do not need to be a specialist to follow. Finally, the research results are incorporated into the reasoning. We then point out that a new article sheds light on the issues we have thought about together. In this way, the research gets an understandable context, namely, in the form of thoughts that anyone can have.

We could call this philosophical research communication. There is a significant difference between these two ways of making research understandable. When simple images are used, they only aim to make people (feel that they) understand what they are not familiar with. The images are interchangeable. If you find a better image, you immediately use it instead. The images are not essential in themselves. That we compare the body cell with a factory does not express any deep interest in factories. But the philosophical questions and reflections that we at CRB embed the research in, are essential in themselves. They are sincere questions and thoughts. They cannot be replaced by other questions and reasoning, for the sole purpose of effectively conveying research results. In philosophical research communication, we give research an essential context, which is not just an interchangeable pedagogical aid. The embedding is as important as what is embedded.

Philosophical research communication is particularly important to us at CRB, as we are a centre for ethics research. Our research is driven by philosophical questions and reflections, for example, within the Human Brain Project, which examines puzzling phenomena such as consciousness and artificial intelligence. Even when we perform empirical studies, the point of those studies is to shed light on ethical problems and thoughts. In our research communication, we focus on this interplay between the philosophically thought-provoking and the empirical results.

Another difference between these ways of communicating research has to do with equality. Since the simple images that are used to explain research are not essential in themselves, such research communication is, after all, somewhat unequal. The comparison, which seemed to make us equal, is not what the communication is really about. The reader’s acquaintance with factories does not help the reader to have their own views on research. Philosophical research communication is different. Because the embedding philosophical questions and thoughts are essential and meant seriously, we meet on the same level. We can wonder together about the same honest questions. When research is communicated philosophically, communicators as well as researchers and non-researchers are equal.

Philosophical research communication can thereby deepen the meaning of the research, sometimes even for the researchers themselves!

As philosophical research communication unites us around common questions and thoughts, it is important in an increasingly fragmented and specialized society. It helps us to think together, which is easier than you might believe, if we dare to open up to our own questions. Here, of course, I assume that the communication is sincere, that it comes from independently thinking people, that it is not based on any intellectually constructed thought patterns, which one must be a philosophy expert to understand.

In that case, philosophical research communicators would need to bring philosophy itself to life, by sincerely asking the most alive questions.

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

We care about communication

Neuroimaging the brain without revealing the person

Three contemporary trends create great challenges for researchers. First, science is expected to become increasingly open, among other things by making collected data available to new users and new purposes. At the same time, data protection laws are being strengthened to protect privacy. Finally, artificial intelligence finds new ways to reveal the individuals behind data, where this was previously impossible.

Neuroimaging is an example of how open science, stronger data protection legislation and more powerful AI challenge the research community. You may not think that you can identify the person whose brain is imaged by using a magnetic camera? But the image actually also depicts the shape of the skull and face, including any scars. You could thus recognize the person. In order to be able to share neuroimaging data without revealing the person, it has hitherto been assumed sufficient to remove the shape of the skull and face in the images, or to make the contours blurry. The problem is the third trend: more powerful AI.

AI can learn to identify people, where human eyes fail. Brain images where the shape of the skull and face has been made unrecognizable often turn out to contain enough information for self-learning face recognition programs to be able to identify people in the defaced images. AI can thus re-identify what had been de-identified. In addition, the anatomy of the brain itself is individual. Just as our fingers have unique fingerprints, our brains have unique “brainprints.” This makes it possible to link neuroimaging data to a person, namely, if you have previously identified neuroimaging data from the person. For example, via another database, or if the person has spread their brain images via social media so that “brainprint” and person are connected.

Making the persons completely unidentifiable would change the images so drastically that they would lose their value for research. The three contemporary trends – open science, stronger data protection legislation and more powerful AI – thus seem to be on a collision course. Is it at all possible to share scientifically useful neuroimaging data in a responsible way, when AI seems to be able to reveal the people whose brains have been imaged?

Well, everything unwanted that can happen does not have to happen. If the world were as insidiously constructed as in a conspiracy theory, no safety measures in the world could save us from the imminent end of the world. On the contrary, such totalized safety measures would definitely undermine safety, which I recently blogged about.

So what should researchers do in practice, when building international research infrastructures to share neuroimaging data (according to the first trend above)? A new article in Neuroimage: Reports, presents a constructive proposal. The authors emphasize, among other things, increased and continuously updated awareness among researchers about realistic data protection risks. Researchers doing neuroimaging need to be trained to think in terms of data protection and see this as a natural part of their research.

Above all, the article proposes several concrete measures to technically and organizationally build research infrastructures where data protection is included from the beginning, by design and by default. Because completely anonymized neuroimaging data is an impossibility (such data would lose its scientific value), pseudonymization and encryption are emphasized instead. Furthermore, technical systems of access control are proposed, as well as clear data use agreements that limit what the user may do with the data. Moreover, of course, informed consent from participants in the studies is part of the proposed measures.

Taken together, these safety measures, built-in from the beginning, would make it possible to construct research infrastructures that satisfy stronger data protection rules, even in a world where artificial intelligence can in principle see what human eyes cannot see. The three contemporary trends may not be on a collision course, after all. If data protection is built in from the beginning, by design and by default, researchers can share data without being forced to destroy the scientific value of the images, and people may continue to want to participate in research.

Pär Segerdahl

Written by…

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

Damian Eke, Ida E.J. Aasebø, Simisola Akintoye, William Knight, Alexandros Karakasidis, Ezequiel Mikulan, Paschal Ochang, George Ogoh, Robert Oostenveld, Andrea Pigorini, Bernd Carsten Stahl, Tonya White, Lyuba Zehl. “Pseudonymisation of neuroimages and data protection: Increasing access to data while retaining scientific utility,” Neuroimage: Reports, 2021,Volume 1, Issue 4

This post in Swedish

Approaching future issues

YouTube as a source of information on paediatric cancer trials

YouTube has become an easily accessible source of information on a variety of issues, from how to fix a puncture to what Plato meant by love, and much more. Of course, YouTube can also serve as a source of health information. Regarding certain issues of health, it may be of importance to review whether the information in the uploaded videos is reliable.

A sensitive research ethical issue is what it means for children to participate in clinical cancer trials. Parents of children with cancer can be asked to give informed consent, agreeing to let their child to participate in such a study. Since the information from the researchers is difficult to understand, as is the whole situation of the family, it is conceivable that many choose to obtain information from the Internet and social media such as YouTube. If so, what kind of information do they get? Is the information ethically satisfactory?

Tove Godskesen, Sara Frygner Holm, Anna T. Höglund and Stefan Eriksson recently conducted a review of YouTube as a source of information on clinical trials for paediatric cancer. The survey was limited to videos in English posted 2010 or later, not more than 20 minutes long and with more than 100 views. Most of the videos had been produced by centres, hospitals or foundations that conduct paediatric cancer studies. The videos were graded using an instrument (DISCERN), the questions of which were adapted to the purpose of measuring the research ethical reliability of the videos. The authors found that 20 percent of the videos were useful without serious shortcomings; almost 50 percent of the videos were misleading with serious shortcomings; 30 percent were classified as inappropriate sources of information. No video could be classified as excellent.

The quality of the videos was thus generally low from a research ethical point of view. A particularly serious problem had to do with the fact that half of the videos focused on new experimental treatments or innovative early clinical trials with children whose cancer had recurred or where the standard treatment had failed. In such Phase 1 clinical trials, one mainly investigates what doses of the drug can be given without too many or too severe adverse effects. Such studies cannot be expected to have any positive therapeutic effect for these children. Instead of emphasizing this ethical difficulty in Phase 1 trials, a hopeful affective language was used in the videos suggesting new therapeutic possibilities for the children.

The authors draw the practical conclusion that children with cancer and their parents may need advice on the quality of the often anecdotal healthcare information that can be found in videos online. Because video is simultaneously an excellent medium for information to both parents and children, the authors suggest that healthcare providers produce and upload high-quality information on clinical paediatric cancer studies.

Read the article in the journal Information, Communication & Society: YouTube as a source of information on paediatric cancer trials.

Pär Segerdahl

Written by…

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

Tove Godskesen, Sara Frygner Holm, Anna T. Höglund & Stefan Eriksson (2021) YouTube as a source of information on clinical trials for paediatric cancer, Information, Communication & Society, DOI: 10.1080/1369118X.2021.1974515

This post in Swedish

We care about communication