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

Tag: covid-19

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

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Diversity in research: why do we need it? (by Karin Grasenick & Julia Trattnig)

Scientific discovery is based on the novelty of the questions you ask. This means that if you want to discover something new, you probably have to ask a different question. And since different people have different preconceptions and experiences than you, they are likely to formulate their questions differently. This makes a case for diversity in research, If we want to make new discoveries that concern diverse groups, diversity in research becomes even more important.

The Human Brain Project participated in the FENS 2020 Virtual Forum this summer, an international virtual neuroscience conference that explores all domains in modern brain research. For the Human Brain Project (HBP), committed to responsible research and innovation, this includes diversity. Which is why Karin Grasenick, Coordinator for Gender and Diversity in the HBP, explored the relationship between diversity and new discovery in the session “Of mice, men and machines” at the FENS 2020.  

So why is diversity in research crucial to make new discoveries? Research depends on the questions asked, the models used, and the details considered. For this reason, it is important to reflect on why certain variables are analysed, or which aspects might play a role. An example is Parkinson’s disease, where patients are affected differently depending on both age and gender. Being a (biological) man or woman, old or young is important for both diagnosis and treatment. If we know that diversity matters in research on Parkinson’s disease, it probably should do so in most neuroscience. Apart from gender and age, we also need to consider other aspects of diversity, like race, ethnicity, education or social background. Because depending on who you are, biologically, culturally and socially, you are likely to need different things.

A quite recent example for this is Covid-19, which does not only display gender differences (as it affects more men than women), but also racial differences: Black and Latino people in the US have been disproportionately affected, regardless of their living area (rural or urban) or their age (old or young). Again, the reasons for this are not simply biologically essentialist (e.g. hormones or chromosomes), but also linked to social aspects such as gendered lifestyles (men are more often smokers than women), inequities in the health system or certain jobs which cannot be done remotely (see for example this BBC Future text on why Covid-19 is different for men and women or this one on the racial inequity of coronavirus in The New York Times).

Another example is Machine Learning. If we train AI on data that is not representative of the population, we introduce bias in the algorithm. For example, applications to diagnose skin cancer in medicine more often fail to recognize tumours in darker skin correctly because they are trained using pictures of fair skin. There are several reasons for not training AI properly, it could be a cost issue, lack of material to train the AI on, but it is not unlikely that people with dark skin are discriminated because scientists and engineers simply did not think about diversity when picking material for the AI to train on. In the case of skin cancer, it is clear that diversity could indeed save lives.

But where to start? When you do research, there are two questions that must be asked: First, what is the focus of your research? And second, who are the beneficiaries of your research?

Whenever your research focus includes tissues, cells, animals or humans, you should consider diversity factors like gender, age, race, ethnicity, and environmental influences. Moreover, any responsible scientist should consider who has access to their research and profits from it, as well as the consequences their research might have for end users or the broader public.

However, as a researcher you need to consider not only the research subjects and the people your results benefit. The diversity of the research team also matters, because different people perceive problems in different ways and use different methods and processes to solve them. Which is why a diverse team is more innovative.

If you want to find out more about the role of diversity in research, check out the presentation “Of mice, men and machines” or read the blogpost on Common Challenges in Neuroscience, AI, Medical Informatics, Robotics and New Insights with Diversity & Ethics.

Written by…

Karin Grasenick, founder and managing partner of convelop, coordinates all issues related to Diversity and Equal Opportunities in the Human Brain Project and works as a process facilitator, coach and lecturer.

&

Julia Trattnig, consultant and scientific staff member at convelop, supports the Human Brain Project concerning all measures and activities for gender mainstreaming and diversity management.

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This is a guest blog post from the Human Brain Project (HBP). The HBP as received funding from the European Union’s Horizon 2020 Framework Programme for Research and Innovation under the Specific Grant Agreement No. 945539 (Human Brain Project SGA3).

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Working online during the pandemic: recommendations from the Human Brain Project

The covid-19 pandemic forced many of us to work online from home. The change contained surprises, both positive and negative. We learned that it is possible to have digital staff meetings, seminars and coffee breaks, and that working from home can sometimes mean less interference than working in the office. We also discovered how much better the office chair and desk are, how difficult it is to try to be professional online from an untidy home, and that working from home often means more interference than working in the office!

The European Human Brain Project (HBP) has extensive experience of collaborating digitally, with regular online meetings. This is how they worked long before the pandemic struck, since the project is a collaboration between more than 100 partner institutions in almost 20 countries, also outside Europe. As part of the project’s investment in responsible research and innovation, special efforts are now being made to digitally include everyone, when so much of the work has moved to the internet.

In the Journal of Responsible Technology, Karin Grasenick and Manuel Guerrero from HBP formulate recommendations based on experiences from the project. Their recommendations concern four areas: How do we facilitate social and family life? How do we reduce stress and anxiety? How do we handle career stages, roles and responsibilities? How do we support team spirit and virtual cooperation?

Read the concise article! You will recognize your work situation and be inspired by the suggestions. Even after the pandemic, online collaboration will occur.

Pär Segerdahl

Written by…

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

Karin Grasenick,  Manuel Guerrero, Responsible Research and Innovation& Digital Inclusiveness during Covid-19 Crisis in the Human Brain Project (HBP), Journal of Responsi-ble Technology(2020), doi: https://doi.org/10.1016/j.jrt.2020.06.001

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Science and society: a changing framework and the role of RRI (by Daniele Mezzana)

The STARBIOS2 project has carried out its activities in a context of the profound transformations that affect contemporary societies, and now we are all facing the Covid-19 pandemic. Science and society have always coevolved, they are interconnected entities, but their relationship is changing and it has been for some time. This shift from modern to so-called postmodern society affects all social institutions in similar ways, whether their work is in politics, religion, family, state administration, or bioscience.

We can find a wide range of phenomena connected to this trend in the literature, for instance: globalization; weakening of previous social “structures” (rules, models of action, values and beliefs); more capacity and power of individuals to think and act more freely (thanks also to new communication technologies); exposure to risks of different kinds (climate change, weakening of welfare, etc.); great social and cultural diversification; and weakening of traditional boundaries and spheres of life, etc.

In this context, we are witnessing the diminishing authority and prestige of all political, religious, even scientific institutions, together with a decline in people’s trust towards these institutions. One example would be the anti-vaccination movement.

Meanwhile, scientific research is also undergoing profound transformations, experiencing a transition that has been examined in various ways and called various names. At the heart of this transformation is the relationship between research and the society it belongs to. We can observe a set of global trends in science.

Such trends include the increasing relationship between universities, governments and industries; the emergence of approaches aimed at “opening” science to society, such as citizen science; the diffusion of cooperative practices in scientific production; the increasing relevance of transdisciplinarity; the increasing expectation that scientific results have economic, social, and environmental impacts; the increasingly competitive access to public funds for research; the growing importance attached to quantitative evaluation systems based on publications, often with distorting effects and questionable results; and the emergence on the international economic and technological scene of actors such as India, China, Brazil, South Africa and others. These trends produce risks and opportunities for both science and society.

Critical concerns for science includes career difficulties for young researchers and women in the scientific sector; the cost of publishing and the difficulties to publish open access; and the protection of intellectual property rights.

Of course, these trends and issues manifest in different ways and intensities according to the different political, social and cultural contexts they exist in.

After the so-called “biological revolution” and within the context of the “fourth industrial revolution” and with “converging technologies” like genetics, robotics, info-digital, neurosciences, nanotechnologies, biotechnologies, and artificial intelligence, the biosciences are at a crossroads in its relationship to society.

In this new context, more and more knowledge is produced and technological solutions developed require a deeper understanding of their status, limits, and ethical and social acceptability (take organoids, to name one example). Moreover, food security, clean energy transition, climate change, and pandemics are all challenges where bioscience can play a crucial role, while new legal, ethical, and social questions that need to be dealt with arise.

These processes have been running for years, albeit in different ways, and national and international decision-makers have been paying attention. Various forms of governance have been developed and implemented over time, to re-establish and harmonize the relationship between scientific and technological research and the rest of society, including more general European strategies and approaches such as Smart Specialization, Open Innovation, Open Science and Responsible Research and Innovation as well as strategies related to specific social aspects of science (such as ethics or gender).

Taking on an approach such as RRI is not simply morally recommendable, but indispensable for attempting a re-alignment between scientific research and the needs of society. Starting from the areas of the life of the scientific communities that are most crucial to science-society relations (The 5+1 RRI keys: Science education, Gender equality, Public engagement, Ethics, Open access, and the cross-cutting sixth key: Governance) and taking the four RRI dimensions into account (anticipation, inclusiveness, responsiveness, and reflexivity) can provide useful guidance for how to activate and drive change in research organisations and research systems.

We elaborate and experiment, in search of the most effective and most relevant solution. While at the same time, there is a need to encourage mainstreaming of the most substantial solutions, to root them more deeply and sustainably in the complex fabric of scientific organisations and networks. Which leads us to ask ourselves: in this context, how can we mainstream RRI and its application in the field of bioscience?

Based on what we know, and on experiences from the STARBIOS2 project, RRI and similar approaches need to be promoted and supported by specific policies and contextualised on at least four levels.

  • Organizational contextualization
    Where mainstreaming takes place through the promotion of a greater embedment of RRI, or similar approaches, within the individual research organizations such as universities, national institutes, private centres, etc.
  • Disciplinary or sectoral contextualization
    Where mainstreaming consists of adapting the responsible research and innovation approach to a specific discipline − for example, biotechnology − or to an entire “sector” in a broad sense, such as bioscience.
  • Geopolitical and cultural contextualization
    Where mainstreaming aims to identify forms of adaptation, or rather reshaping, RRI or similar approaches, in various geopolitical and cultural contexts, taking into account elements such as the features of the national research systems, the economy, territorial dynamics, local philosophy and traditions, etc.
  • Historical contextualization
    Where RRI mainstreaming is related to the ability of science to respond to the challenges that history poses from time to time − and of which the COVID-19 pandemic is only the last, serious example − and to prevent them as much as possible.

During the course of the STARBIOS2 project, we have developed a set of guidelines and a sustainable model for RRI implementation in bioscience research institutions. Over the course of 4 years, 6 bioscience research institutions in Europe, and 3 outside Europe, worked together to achieve structural change towards RRO in their own research institutions with the goal of achieving responsible biosciences. We were looking forward to revealing and discussing our results in April, but with the Covid-19 outbreak, neither that event nor our Cape Town workshop was a possibility. Luckily, we have adapted and will now share our findings online, at our final event on 29 May. We hope to see you there.

For our final remark, as the Covid-19 pandemic is challenging our societies, our political and economic systems, we recognise that scientists are also being challenged. By the corona virus as well as by contextual challenges. The virus is testing their ability to play a key role to the public, to share information and to produce relevant knowledge. But when we go back to “normal”, the challenge of changing science-society relations will persist. And we will remain convinced that RRI and similar approaches will be a valuable contribution to addressing these challenges, now and in the future.

Daniele Mezzana

Written by…

Daniele Mezzana, a social researcher working in the STARBIOS2 project (Structural Transformation to Attain Responsible BIOSciences) as part of the coordination team at University of Rome – Tor Vergata.

This text is based on the Discussion Note for the STARBIOS2 final event on 29 May 2020. 

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The STARBIOS2 project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 709517. The contents of this text and the view expressed are the sole responsibility of the author and under no circumstances can be regarded as reflecting the position of the European Union.

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Proceed carefully with vaccine against covid-19

Pharmaceutical companies want to quickly manufacture a vaccine against covid-19, with human testing and launch in the market as soon as possible. In a debate article, Jessica Nihlén Fahlquist at CRB warns of the risk of losing the larger risk perspective: “Tests on people and a potential premature mass vaccination entail risks. It is easy to forget about similar situations in the past,” she writes.

It may take time for side effects to appear. Unfortunately, it therefore also takes time to develop new safe vaccines. We need to develop a vaccine, but even with new vaccines, caution is needed.

The article is in Swedish. If you want to Google translate: Proceed carefully with vaccine against covid-19

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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