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

Tag: social media

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

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We care about communication

Should social media platforms censor misinformation about COVID-19?

When the coronavirus began to spread outside China a year ago, the Director General of the World Health Organization said that we are not only fighting an epidemic, but also an infodemic. The term refers to the rapid spread of often false or questionable information.

While governments fight the pandemic through lockdowns, social media platforms such as Facebook, Twitter and YouTube fight the infodemic through other kinds of lockdowns and framings of information considered as misinformation. Content can be provided with warning signs and links to what are considered more reliable sources of information. Content can also be removed and in some cases accounts can be suspended.

In an article in EMBO Reports, Emilia Niemiec asks if there are wiser ways to handle the spread of medical misinformation than by letting commercial actors censor the content on their social media platforms. In addition to the fact that censorship seems to contradict the idea of ​​these platforms as places where everyone can freely express their opinion, it is unclear how to determine what information is false and harmful. For example, should researchers be allowed to use YouTube to discuss possible negative consequences of the lockdowns? Or should such content be removed as harmful to the fight against the pandemic?

If commercial social media platforms remove content on their own initiative, why do they choose to do so? Do they do it because the content is scientifically controversial? Or because it is controversial in terms of public opinion? Moreover, in the midst of a pandemic with a new virus, the state of knowledge is not always as clear as one might wish. In such a situation it is natural that even scientific experts disagree on certain important issues. Can social media companies then make reasonable decisions about what we currently know scientifically? We would then have a new “authority” that makes important decisions about what should be considered scientifically proven or well-grounded.

Emilia Niemiec suggests that a wiser way to deal with the spread of medical misinformation is to increase people’s knowledge of how social media works, as well as how research and research communication work. She gives several examples of what we may need to learn about social media platforms and about research to be better equipped against medical misinformation. Education as a vaccine, in other words, which immunises us against the misinformation. This immunisation should preferably take place as early as possible, she writes.

I would like to recommend Emilia Niemiec’s article as a thoughtful discussion of issues that easily provoke quick and strong opinions. Perhaps this is where the root of the problem lies. The pandemic scares us, which makes us mentally tense. Without that fear, it is difficult to understand the rapid spread of unjustifiably strong opinions about facts. Our fear in an uncertain situation makes us demand knowledge, precisely because it does not exist. Anything that does not point in the direction that our fear demands immediately arouses our anger. Fear and anger become an internal mechanism that, at lightning speed, generates hardened opinions about what is true and false, precisely because of the uncertainty of the issues and of the whole situation.

So I am dreaming of one further vaccine. Maybe we need to immunise ourselves also against the fear and the anger that uncertainty causes in our rapidly belief-forming intellects. Can we immunise ourselves against something as human as fear and anger in uncertain situations? In any case, the thoughtfulness of the article raises hopes about it.

Pär Segerdahl

Written by…

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

Niemiec, Emilia. 2020. COVID-19 and misinformation: Is censorship of social media a remedy to the spread of medical misinformation? EMBO Reports, Vol. 21, no 11, article id e51420

This post in Swedish

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