The Ethics Blog

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

Category: In the research debate (Page 5 of 32)

A charming idea about consciousness

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8 November, 2022 / / 0 Comments

Some ideas can have such a charm that you only need to hear them once to immediately feel that they are probably true: “there must be some grain of truth in it.” Conspiracy theories and urban myths probably spread in part because of how they manage to charm susceptible human minds by ringing true. It is said that even some states of illness are spread because the idea of ​​the illness has such a strong impact on many of us. In some cases, we only need to hear about the diagnosis to start showing the symptoms and maybe we also receive the treatment. But even the idea of diseases spread by ideas has charm, so we should be on our guard.

The temptation to fall for the charm of certain ideas naturally also exists in academia. At the same time, philosophy and science are characterized by self-critical examination of ideas that may sound so attractive that we do not notice the lack of examination. As long as the ideas are limited hypotheses that can in principle be tested, it is relatively easy to correct one’s hasty belief in them. But sometimes these charming ideas consist of grand hypotheses about elusive phenomena that no one knows how to test. People can be so convinced by such ideas that they predict that future science just needs to fill in the details. A dangerous rhetoric to get caught up in, which also has its charm.

Last year I wrote a blog post about a theory at the border between science and philosophy that I would like to characterize as both grand and charming. This is not to say that the theory must be false, just that in our time it may sound immediately convincing. The theory is an attempt to explain an elusive “phenomenon” that perplexes science, namely the nature of consciousness. Many feel that if we could explain consciousness on purely scientific grounds, it would be an enormously significant achievement.

The theory claims that consciousness is a certain mathematically defined form of information processing. Associating consciousness with information is timely, we are immediately inclined to listen. What type of information processing would consciousness be? The theory states that consciousness is integrated information. Integration here refers not only to information being stored as in computers, but to all this diversified information being interconnected and forming an organized whole, where all parts are effectively available globally. If I understand the matter correctly, you can say that the integrated information of a system is the amount of generated information that exceeds the information generated by the parts. The more information a system manages to integrate, the more consciousness the system has.

What, then, is so charming about the idea that ​​consciousness is integrated information? Well, the idea might seem to fit with how we experience our conscious lives. At this moment you are experiencing multitudes of different sensory impressions, filled with details of various kinds. Visual impressions are mixed with impressions from the other senses. At the same time, however, these sensory impressions are integrated into a unified experience from a single viewpoint, your own. The mathematical theory of information processing where diversification is combined with integration of information may therefore sound attractive as a theory of consciousness. We may be inclined to think: Perhaps it is because the brain processes information in this integrative way that our conscious lives are characterized by a personal viewpoint and all impressions are organized as an ego-centred subjective whole. Consciousness is integrated information!

It becomes even more enticing when it turns out that the theory, called Integrated Information Theory (IIT), contains a calculable measure (Phi) of the amount of integrated information. If the theory is correct, then one would be able to quantify consciousness and give different systems different Phi for the amount of consciousness. Here the idea becomes charming in yet another way. Because if you want to explain consciousness scientifically, it sounds like a virtue if the theory enables the quantification of how much consciousness a system generates. The desire to explain consciousness scientifically can make us extra receptive to the idea, which is a bit deceptive.

In an article in Behavioral and Brain Sciences, Björn Merker, Kenneth Williford and David Rudrauf examine the theory of consciousness as integrated information. The review is detailed and comprehensive. It is followed up by comments from other researchers, and ends with the authors’ response. What the three authors try to show in the article is that even if the brain does integrate information in the sense of the theory, the identification of consciousness with integrated information is mistaken. What the theory describes is efficient network organization, rather than consciousness. Phi is a measure of network efficiency, not of consciousness. What the authors examine in particular is that charming feature I just mentioned: the theory can seem to “fit” with how we experience our conscious lives from a unified ego-centric viewpoint. It is true that integrated information constitutes a “unity” in the sense that many things are joined in a functionally organized way. But that “unity” is hardly the same “unity” that characterizes consciousness, where the unity is your own point of view on your experiences. Effective networks can hardly be said to have a “viewpoint” from a subjective “ego-centre” just because they integrate information. The identification of features of our conscious lives with the basic concepts of the theory is thus hasty, tempting though it may be.

The authors do not deny that the brain integrates information in accordance with the theory. The theory mathematically describes an efficient way to process information in networks with limited energy resources, something that characterizes the brain, the authors point out. But if consciousness is identified with integrated information, then many other systems that process information in the same efficient way would also be conscious. Not only other biological systems besides the brain, but also artifacts such as some large-scale electrical power grids and social networks. Proponents of the theory seem to accept this, but we have no independent reason to suppose that systems other than the brain would have consciousness. Why then insist that other systems are also conscious? Well, perhaps because one is already attracted by the association between the basic concepts of the theory and the organization of our conscious experiences, as well as by the possibility of quantifying consciousness in different systems. The latter may sound like a scientific virtue. But if the identification is false from the beginning, then the virtue appears rather as a departure from science. The theory might flood the universe with consciousness. At least that is how I understand the gist of ​​the article.

Anyone who feels the allure of the theory that consciousness is integrated information should read the careful examination of the idea: The integrated information theory of consciousness: A case of mistaken identity.

The last word has certainly not been said and even charming ideas can turn out to be true. The problem is that the charm easily becomes the evidence when we are under the influence of the idea. Therefore, I believe that the careful discussion of the theory of consciousness as integrated information is urgent. The article is an excellent example of the importance of self-critical examination in philosophy and science.

Pär Segerdahl

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

Merker, B., Williford, K., & Rudrauf, D. (2022). The integrated information theory of consciousness: A case of mistaken identity. Behavioral and Brain Sciences, 45, E41. doi:10.1017/S0140525X21000881

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Responses of Italian residents to public health measures during the 2020 pandemic spring

English and Italian sign on beach asking not to form gatherings
1 November, 2022 / / 1 Comment

Italy was the first country in Europe to be hit hard by the Covid-19 pandemic. It started mainly in the northern regions, but soon the same public health measures were introduced throughout the country. Commercial and social activities were closed, as were schools and universities. Only points of sale that were deemed necessary were allowed to remain open, such as pharmacies, grocery stores and newsstands. It became forbidden to move outdoors except for certain purposes.

How did people react to the measures? During the late spring and early summer of 2020, an in-depth interview study was conducted with a number of Italian residents of different gender, age, education and home region. The study was recently published as an article by Virginia Romano, Mirko Ancillotti, Deborah Mascalzoni and Roberta Biasiotto. The interviews touched on everyday life during the lockdown as well as perceptions of the public health measures, but also possible priority-setting criteria in intensive care were discussed, as well as views on how the media and information worked.

Several participants described how, after an initial difficulty in understanding and accepting the changes, they soon adapted. Their fear decreased and routines for working from home were established. They began to appreciate increased time with family and a lifestyle with less travel and stress. On the other hand, it was perceived that the public health measures, with their many rules to follow, created a distinction between “us” and “them.” Participants expressed that they began to observe and blame others for not following the rules, while at the same time feeling themselves observed and blamed. This fragmentation was met with disappointment, as the interviewees had hoped that the pandemic would, on the contrary, unite society and increase solidarity and tolerance. However, some experienced just such positive effects. The use of a face mask, for example, was perceived as respectful behaviour towards others.

In general, participants were positive about the public health measures, which were considered necessary to control the pandemic. On the other hand, suspicions were directed at economic interests to maintain productivity. It was perceived that lobbyists were pushing to postpone the lockdown and to speed up the easing of restrictions. Furthermore, it was considered that the pandemic revealed a need to better organize healthcare in Italy. The restrictions also increased the interviewees’ awareness of inequalities in society, for example regarding living space, access to garden and proximity to nature, as well as opportunities to work from home with stable income.

The participants also discussed hypothetical inclusion and exclusion criteria in intensive care, and described their impressions of how information and media functioned during the pandemic spring. The first question was of course difficult to handle for the participants. It was easier to admit that trust in information and the media had decreased. Some participants reported that they developed more critical attitudes towards the sources of information in the media.

If you want more results and the authors’ own discussion, read the article here: Italians locked down: people’s responses to early COVID-19 pandemic public health measures

Pär Segerdahl

Written by…

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

Romano, V., Ancillotti, M., Mascalzoni, D. et al. Italians locked down: people’s responses to early COVID-19 pandemic public health measures. Humanit Soc Sci Commun 9, 342 (2022). https://doi.org/10.1057/s41599-022-01358-3

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AI narratives from the Global North

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25 October, 2022 / / 1 Comment

The way we develop, adopt, regulate and accept artificial intelligence is embedded in our societies and cultures. Our narratives about intelligent machines take on a flavour of the art, literature and imaginations of the people who live today, and of those that came before us. But some of us are missing from the stories that are told about thinking machines. A recent paper about forgotten African AI narratives and the future of AI in Africa shines a light on some of the missing narratives.

In the paper, Damian Eke and George Ogoh point to the fact that how artificial intelligence is developed, adopted, regulated and accepted is hugely influenced by socio-cultural, ethical, political, media and historical narratives. But most of the stories we tell about intelligent machines are imagined and conceptualised in the Global North. The paper begs the question whether it is a problem? And if so, in what way? When machine narratives put the emphasis on technology neutrality, that becomes a problem that goes beyond AI.

What happens when Global North narratives set the agenda for research and innovation also in the Global South, and what happens more specifically to the agenda for artificial intelligence? The impact is difficult to quantify. But when historical, philosophical, socio-cultural and political narratives from Africa are missing, we need to understand why and what it might imply. Damian Eke & George Ogoh provide a list of reasons for why this is important. One is concerns about the state of STEM education (science, technology, engineering and mathematics) in many African countries. Another reason is the well-documented issue of epistemic injustice: unfair discrimination against people because of prejudices about their knowledge. The dominance of Global North narratives could lead to devaluing the expertise of Africans in the tech community. This brings us to the point of the argument, which is that African socio-cultural, ethical and political contexts and narratives are absent from the global debate about responsible AI.

The paper makes the case for including African AI narratives not only into the research and development of artificial intelligence, but also into the ethics and governance of technology more broadly. Such inclusion would help counter epistemic injustice. If we fail to include narratives from the South into the AI discourse, the development can never be truly global. Moreover, excluding African AI narratives will limit our understanding of how different cultures in Africa conceptualise AI, and we miss an important perspective on how people across the world perceive the risks and benefits of machine learning and AI powered technology. Nor will we understand the many ways in which stories, art, literature and imaginations globally shape those perceptions.

If we want to develop an “AI for good”, it needs to be good for Africa and other parts of the Global South. According to Damian Eke and George Ogoh, it is possible to create a more meaningful and responsible narrative about AI. That requires that we identify and promote people-centred narratives. And anchor AI ethics for Africa in African ethical principles, like ubuntu. But the key for African countries to participate in the AI landscape is a greater focus on STEM education and research. The authors end their paper with a call to improve the diversity of voices in the global discourse about AI. Culturally sensitive and inclusive AI applications would benefit us all, for epistemic injustice is not just a geographical problem. Our view of whose knowledge has value is powered by a broad variety of forms of prejudice.

Damian Eke and George Ogoh are both actively contributing to the Human Brain Project’s work on responsible research and innovation. The Human Brain Project is a European Flagship project providing in-depth understanding of the complex structure and function of the human brain, using interdisciplinary approaches.

Do you want to learn more? Read the article here: Forgotten African AI Narratives and the future of AI in Africa.

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

Eke D, Ogoh G, Forgotten African AI Narratives and the future of AI in Africa, International Review of Information Ethics, 2022;31(08).

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Attitudes, norms and values ​​that can influence antibiotic resistance

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11 October, 2022 / / 1 Comment

Human use of antibiotics creates an evolutionary pressure that drives the development of antibiotic-resistant bacteria. If antibiotics lose their effectiveness, simple infections can become life-threatening and it becomes more difficult to treat infections in hospitals in connection with surgical interventions or other treatments. We should therefore reduce the use of antibiotics and use them more wisely.

Greece is at the top among European countries when it comes to antibiotics consumption. Nevertheless, studies have shown that Greeks are aware of the connection between the overuse of antibiotics and antibiotic resistance. It is not as surprising as it may sound. Other research shows that information alone is not enough to change people’s behaviour.

Since ignorance about the problem cannot explain the overuse of antibiotics in Greece, other factors should be investigated. In an article in BMC Public Health, Dimitrios Papadimou, Erik Malmqvist and Mirko Ancillotti present an interview study (focus groups) in which other possible explanations were examined, such as attitudes, norms and values ​​among Greeks.

The Greek participants saw overconsumption of antibiotics as an entrenched habit in Greece. It is easy to get access to antibiotics, they are often used without a doctor’s prescription, sometimes even as a precaution. In addition, doctors frequently prescribe antibiotics as a reliable remedy, participants said. Although critical of this Greek pattern of antibiotic consumption, participants considered it morally questionable to restrict individual access to potentially beneficial antibiotic treatments in the name of the greater good. Nor did they want to place the responsibility for handling antibiotic resistance on the individual. The whole of society must take responsibility, it was argued, perhaps above all government actors, healthcare staff and food producers. Finally, participants expressed doubts about the possibility of effectively managing antibiotic resistance in Greece.

There certainly seem to be more factors than limited awareness of the problem behind the overuse of antibiotics in Greece (and in other countries). If you would like more details and discussion, read the study here: Socio-cultural determinants of antibiotic resistance: a qualitative study of Greeks’ attitudes, perceptions and values

Hopefully, the study motivates future quantitative investigations of attitudes, norms and values, with more participants. Changing the use of antibiotics is probably like changing the course of a huge ship. Simply being aware of the necessary change is not enough.

Pär Segerdahl

Written by…

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

Papadimou, D., Malmqvist, E. & Ancillotti, M. Socio-cultural determinants of antibiotic resistance: a qualitative study of Greeks’ attitudes, perceptions and values. BMC Public Health 22, 1439 (2022). https://doi.org/10.1186/s12889-022-13855-w

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Approaching future issues

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Does the brain make room for free will?

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4 October, 2022 / / 1 Comment

The question of whether we have free will has been debated throughout the ages and everywhere in the world. Can we influence our future or is it predetermined? If everything is predetermined and we lack free will, why should we act responsibly and by what right do we hold each other accountable?

There have been different ideas about what predetermines the future and excludes free will. People have talked about fate and about the gods. Today, we rather imagine that it is about necessary causal relationships in the universe. It seems that the strict determinism of the material world must preclude the free will that we humans perceive ourselves to have. If we really had free will, we think, then nature would have to give us a space of our own to decide in. A causal gap where nature does not determine everything according to its laws, but allows us to act according to our will. But this seems to contradict our scientific world view.

In an article in the journal Intellectica, Kathinka Evers at CRB examines the plausibility of this choice between two extreme positions: either strict determinism that excludes free will, or free will that excludes determinism.

Kathinka Evers approaches the problem from a neuroscientific perspective. This particular perspective has historically tended to support one of the positions: strict determinism that excludes free will. How can the brain make room for free will, if our decisions are the result of electrochemical processes and of evolutionarily developed programs? Is it not right there, in the brain, that our free will is thwarted by material processes that give us no space to act?

Some authors who have written about free will from a neuroscientific perspective have at times explained away freedom as the brain’s user’s illusion: as a necessary illusion, as a fictional construct. Some have argued that since social groups function best when we as individuals assume ourselves to be responsible actors, we must, after all, keep this old illusion alive. Free will is a fiction that works and is needed in society!

This attitude is unsound, says Kathinka Evers. We cannot build our societies on assumptions that contradict our best knowledge. It would be absurd to hold people responsible for actions that they in fact have no ability to influence. At the same time, she agrees that the notion of free will is socially important. But if we are to retain the notion, it must be consistent with our knowledge of the brain.

One of the main points of the article is that our knowledge of the brain could actually provide some room for free will. The brain could function beyond the opposition between indeterminism and strict determinism, some neuroscientific theories suggest. This does not mean that there would be uncaused neural events. Rather, a determinism is proposed where the relationship between cause and effect is variable and contingent, not invariable and necessary, as we commonly assume. As far as I understand, it is about the fact that the brain has been shown to function much more independently, actively and flexibly than in the image of it as a kind of programmed machine. Different incoming nerve signals can stabilize different neural patterns of connections in the brain, which support the same behavioural ability. And the same incoming nerve signal can stabilize different patterns of connections in the brain that result in the same behavioural ability. Despite great variation in how individuals’ neural patterns of connections are stabilized, the same common abilities are supported. This model of the brain is thus deterministic, while being characterized by variability. It describes a kind of kaleidoscopically variable causality in the brain between incoming signals and resulting behaviours and abilities.

Kathinka Evers thus hypothetically suggests that this variability in the brain, if real, could provide empirical evidence that free will is compatible with determinism.

Read the philosophically exciting article here: Variable determinism in social applications: translating science to society

Although Kathinka Evers suggests that a certain amount of free will could be compatible with what we know about the brain, she emphasizes that neuroscience gives us increasingly detailed knowledge about how we are conditioned by inherited programs, for example, during adolescence, as well as by our conditions and experiences in childhood. We should, after all, be cautiously restrained in praising and blaming each other, she concludes the article, referring to the Stoic Epictetus, one of the philosophers who thought about free will and who rather emphasized freedom from the notion of a free will.

Pär Segerdahl

Written by…

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

Evers Kathinka (2021/2). Variable Determinism in Social Applications: Translating Science to Society. In Monier Cyril & Khamassi Mehdi (Eds), Liberty and cognition, Intellectica, 75, pp.73-89.

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Artificial intelligence: augmenting intelligence in humans or creating human intelligence in machines?

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20 September, 2022 / / 1 Comment

Sometimes you read articles at the intersection of philosophy and science that contain really exciting visionary thoughts, which are at the same time difficult to really understand and assess. The technical elaboration of the thoughts grows as you read, and in the end you do not know if you are capable of thinking independently about the ideas or if they are about new scientific findings and trends that you lack the expertise to judge.

Today I dare to recommend the reading of such an article. The post must, of course, be short. But the fundamental ideas in the article are so interesting that I hope some readers of this post will also become readers of the article and make a serious attempt to understand it.

What is the article about? It is about an alternative approach to the highest aims and claims in artificial intelligence. Instead of trying to create machines that can do what humans can do, machines with higher-level capacities such as consciousness and morality, the article focuses on the possibility of creating machines that augment the intelligence of already conscious, morally thinking humans. However, this idea is not entirely new. It has existed for over half a century in, for example, cybernetics. So what is new in the article?

Something I myself was struck by was the compassionate voice in the article, which is otherwise not prominent in the AI ​​literature. The article focuses not on creating super-smart problem solvers, but on strengthening our connections with each other and with the world in which we live. The examples that are given in the article are about better moral considerations for people far away, better predictions of natural disasters in a complex climate, and about restoring social contacts in people suffering from depression or schizophrenia.

But perhaps the most original idea in the article is the suggestion that the development of these human self-augmenting machines would draw inspiration from how the brain already maintains contact with its environment. Here one should keep in mind that we are dealing with mathematical models of the brain and with innovative ways of thinking about how the brain interacts with the environment.

It is tempting to see the brain as an isolated organ. But the brain, via the senses and nerve-paths, is in constant dynamic exchange with the body and the world. You would not experience the world if the world did not constantly make new imprints in your brain and you constantly acted on those imprints. This intense interactivity on multiple levels and time scales aims to maintain a stable and comprehensible contact with a surrounding world. The way of thinking in the article reminds me of the concept of a “digital twin,” which I previously blogged about. But here it is the brain that appears to be a neural twin of the world. The brain resembles a continuously updated neural mirror image of the world, which it simultaneously continuously changes.

Here, however, I find it difficult to properly understand and assess the thoughts in the article, especially regarding the mathematical model that is supposed to describe the “adaptive dynamics” of the brain. But as I understand it, the article suggests the possibility of recreating a similar dynamic in intelligent machines, which could enhance our ability to see complex patterns in our environment and be in contact with each other. A little poetically, one could perhaps say that it is about strengthening our neural twinship with the world. A kind of neural-digital twinship with the environment? A digitally augmented neural twinship with the world?

I dare not say more here about the visionary article. Maybe I have already taken too many poetic liberties? I hope that I have at least managed to make you interested to read the article and to asses it for yourself: Augmenting Human Selves Through Artificial Agents – Lessons From the Brain.

Well, maybe one concluding remark. I mentioned the difficulty of sometimes understanding and assessing visionary ideas that are formulated at the intersection of philosophy and science. Is not that difficulty itself an example of how our contact with the world can sometimes weaken? However, I do not know if I would have been helped by digital intelligence augmentation that quickly took me through the philosophical difficulties that can arise during reading. Some questions seem to essentially require time, that you stop and think!

Giving yourself time to think is a natural way to deepen your contact with reality, known by philosophers for millennia.

Pär Segerdahl

Written by…

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

Northoff G, Fraser M, Griffiths J, Pinotsis DA, Panangaden P, Moran R and Friston K (2022) Augmenting Human Selves Through Artificial Agents – Lessons From the Brain. Front. Comput. Neurosci. 16:892354. doi: 10.3389/fncom.2022.892354

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Dignity in a nursing home when the body fails

Elderly person with a golden ring on their finger.
6 September, 2022 / / 1 Comment

The proportion of elderly people in the population is increasing and the tendency is to provide care for the elderly at home as long as possible. Nursing homes are therefore usually inhabited by the very weakest, with several concurrent illnesses and often in need of palliative care.

Living a dignified life in old age naturally becomes more difficult when the body and mind fail and you become increasingly dependent on others. As a nursing home resident, it can be close at hand to feel unworthy and a nuisance. And as staff, in stressful situations it can happen that you sometimes thoughtlessly treat the elderly in an undignified manner.

Preserving the dignity of the elderly is an important responsibility of nursing homes. But what does reality look like for the residents? How does the care provider take responsibility for dignified care? And is it reasonable to regard the residents as passive recipients of dignified care? Isn’t such a view in itself undignified?

These questions suggest that we need to look more closely at the reality of the elderly in a nursing home. Bodil Holmberg has done this together with Tove Godskesen, in a study published in the journal BMC Geriatrics. Participatory observations and interviews with residents and staff at a nursing home in Sweden provided rich material to analyse and reflect on.

As expected, it was found that the major threat to the residents’ dignity was precisely how the body fails at a faster rate. This created fear of becoming increasingly dependent on others as well as feelings of anguish, loneliness and meaninglessness. However, it was also found that the elderly themselves had a repertoire of ways to deal with their situation. Their self-knowledge enabled them to distinguish between what they could still do and what they had to accept. In addition, aging itself gave rise to new challenges to engage with. One of the residents proudly told how they had developed a way to pick up the grabbing tong when it had been dropped, by sliding deeper into the wheelchair to reach the floor. Teaching new staff how to carry out intricate medical procedures also gave rise to pride.

As aging challenges a dignified life, older people thus develop self-knowledge and a whole repertoire of ways to maintain a dignified life. This is an essential observation that the authors make. It shows the importance of not considering nursing home residents as passive recipients of dignified care. If I understand the authors correctly, they suggest that we could instead think in terms of assisting older people when their bodies fail: assisting them in their own attempts to lead dignified lives.

Participatory observations and interviews can help us see reality more clearly. The method can clarify both the expected and the unexpected. Read the pertinent article here: Dignity in bodily care at the end of life in a nursing home: an ethnographic study

The authors also found examples of undignified treatment of the residents. In another article, also from this year, they discuss barriers and facilitators of ethical encounters at the end of life in a nursing home. Reference to the latter article can be found below.

Pär Segerdahl

Written by…

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

Holmberg, B., Godskesen, T. Dignity in bodily care at the end of life in a nursing home: an ethnographic study. BMC Geriatr 22, 593 (2022). https://doi.org/10.1186/s12877-022-03244-8

Holmberg, B., Godskesen, T. Barriers to and facilitators of ethical encounters at the end of life in a nursing home: an ethnographic study. BMC Palliat Care 21, 134 (2022). https://doi.org/10.1186/s12904-022-01024-0

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Where to publish and where not to publish in bioethics – the 2022 list

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23 August, 2022 / / 2 Comments

We have seen “predatory” publishing take off in a big way and noticed how colleagues start to turn up in the pages of some of these journals. While many have assumed that this phenomenon mainly is a problem for low-status universities, there are strong indications that predatory publishing is a part of a major trend towards the industrialization of misconduct and that it affects many top-flight research institutions (see Priyanka Pulla: “In India, elite institutes in shady journals”, Science 354(6319): 1511-1512).

This trend, referred to by some as the dark side of publishing, needs to be reversed. Thus we published this blog post in 2016. This is our fifth annual update (the first version can be found here). At first, we relied heavily on the work of Jeffrey Beall, a librarian at the University of Colorado, who run blacklists of “potential, possible, or probable” predatory publishers and journals. His lists have since been removed but are kept by others and they can also be found archived.

The latest effort to create a thorough list of predatory outlets comes from Cabells, who distinguish around 70 different unacceptable violations and employs a whole team reviewing journals. These lists are not, however, the final say on the matter, as it is impossible for one person or a limited group to judge reliably actors in every academic discipline.

A response of gatekeeping needs to be anchored in each discipline and the scholars who make up that discipline. As a suitable response in bioethics, we have chosen to, first, collect a few authoritative lists of recommended bioethics journals that can be consulted by anyone in bioethics to find good journals to publish with.

For our first post, we recommended a list of journals ourselves, which brought on some well-deserved questions and criticism about criteria for inclusion. Unfortunately then, our list ultimately drew attention from other parts of the message that we were more concerned to get across. Besides, there are many other parties making such lists. We, therefore, have dropped this feature. Instead, we have enlarged the collection of good journal lists to the service of our readers. They are all of great use when further exploring the reputable journals available:

It is of prime importance to list the journals that are potentially or possibly predatory or of such a low quality that it might be dishonoring to engage with them. We have listed all 50 of them alphabetically (one new entry for 2022, one has ceased operation and been removed), and provided both the homepage URL and links to any professional discussion of these journals that we have found (which most often alerted us to their existence in the first place).

Each of these journals asks scholars for manuscripts from, or claims to publish papers in bioethics or related areas (such as practical philosophy). They have been reviewed by the authors of this blog post as well as by a group of reference scholars that we have asked for advice on the list. Those journals listed have unanimously been agreed are journals that – in light of the criticism put forth and the quality we see – we would not deem acceptable for us to publish in. Typical signs as to why a journal could fall in this category, such as extensive spamming, publishing in almost any subject, or fake data being included on the website etc., are listed here:

We have started to more systematically evaluate the journals against the 25 defining characteristics we outlined in the article linked to above (with the help of science and technology PhD students). The results will be added when they exist.

We would love to hear about your views on this blog post, and be especially grateful for pointers to journals engaging in sloppy or bad publishing practices. The list is not meant as a check-list but as a starting point for any bioethics scholar to ponder for him- or herself where to publish.

Also, anyone thinking that a journal in our list should be given due reconsideration might post their reasons for this as a comment to the blog post or send an email to us. Journals might start out with some sloppy practices but shape up over time and we will be happy to hear about it. You can make an appeal against the inclusion of a journal and we will deal with it promptly and publicly.

Please spread the content of this blog as much as you can and check back for updates (we will do a major update annually and continually add any further information found).

Note to readers: The list contained on Stop Predatory Journals referred to below has been down for while. From 2022 any reference to journals/publishers being included on SPJ refers to their previous inclusion. We will gradually check for inclusion in the most prominent list presently available, Cabells’ Predatory Reports, as a alternative.

WHERE NOT TO PUBLISH IN BIOETHICS – THE 2022 LIST

  • Advanced Humanities & Social Sciences (Consortium Publisher)
    Critical remark (2018): It has been claimed that behind this journal you find OMICS, the most-ever discussed publisher of this kind, see http://ottawacitizen.com/news/local-news/predatory-publisher-expanding-empire-in-canada. The only article published in 2016 is very badly edited, all the references are lost in the text and the paper would not pass an exam at our departments.  2017 volume is again only one article. The publisher is listed on SPJ.
    Critical remark (2022). After a complaint from the publisher, we have checked the latest volume. An article like this one shows no evident editorial work on the paper at all, so we still regard the journal to be a low quality outlet for research.
  • Advances In Medical Ethics  (Longdom Publishing)
    Critical remark (2019): When asked, one editor attest to the fact that his editorship was forged. Publisher was on Beall’s list and is now listed at Cabells with 5 violations. A thorough review December 2019 concludes that it exhibits at least 7 of the 25 criteria for “predatory” journals.
    Update: A more recent review (2022) concludes that it exhibits about 17 such criteria. How an e-mail exchange with this publisher can turn out is shown here.
    Update (2023): A thorough review in August concludes that it exhibits at least 10 of the 25 criteria for “predatory” journals
  • American Open Ethics Journal (Research and Knowledge Publication)
    Critical remark (2019): Listed on Cabells with 7 violations.
    Update: A thorough review February 2020 concludes that it exhibits at least 11 of the 25 criteria for “predatory” journals.
    Update: Another thorough review December 2023 concludes that it exhibits at least 11 of the 25 criteria for “predatory” journals.
  • Annals of Bioethics & Clinical Applications (Medwin Publishers)
    Criticism 1 
    Critical remark (2019): Publisher was on Beall’s list and is on many other lists of these journals. They say that they are “accepting all type of original works that is related to the disciplines of the journal” and indeed the flow chart of manuscript handling does not have a reject route. Indexed by alternative indexes.
    Critical remark (2020): Listed on Cabells with 5 violations. A thorough review October 2020 concludes that it exhibits at least 9 of the 25 criteria for “predatory” journals.
  • Austin Journal of Genetics and Genomic Research (Austin Publishing Group)
    Criticism 1 │Criticism 2 │Criticism 3
    Critical remark (2017): Spam e-mail about special issue on bioethics; Listed by SPJ; Romanian editorial member is said to be from a university in “Europe”; Another editorial board member is just called “Michael”; APG has been sued by International Association for Dental Research and The American Association of Neurological Surgeons for infringing on their IP rights. Student reviews concludes the journal is not suitable to publish in, one finding that the journal exhibits at least 16 of the 25 criteria for “predatory” journals.
    Critical remark (2019): Listed by Cabells with 10 violations.
    Critical remark (2021): A thorough review concludes that the journals exhibits at least 13 of the 25 criteria for “predatory” journals.
  • British Open Journal of Ethics (British Open Research Publications)
    Critical remark (2019): Listed by Cabells with 6 violations.
    Critical remark (2022): A thorough review concludes that the journal exhibit many criteria for “predatory” journals, for example that no editorial board exists and the journal is not indexed, and that it is strongly recommended to avoid “publishing” with this journal.
  • Creative Education (Scientific Research Publishing – SCIRP)
    Criticism 1 │ Criticism 2
    Critical remark (2017): Listed by SPJ; They claim misleadingly to be indexed by ISI but this relates to be among cited articles only – they are not indexed. A thorough review May 2017 concludes that it exhibits at least 5 of the 25 criteria for “predatory” journals.
    Update (2022): Listed on Cabells with 3 violations.
    Update (2023): A new review in 2023 concludes that it exhibits 11 of the 25 criteria for “predatory” journals.
  • Eastern European Scientific Journal (East European Research Alliance)
    Critical remark (2017): Listed by SPJ; Criticised by Beall for having a bogus editorial board; Claims to be indexed by ISI but that is not the well-known Institute for Scientific Information (now Thompson Reuters), but rather the so-called International Scientific Indexing.
    Update: Thorough reviews November 2018 and February 2019  conclude that it exhibits at least 13 or 14 of the 25 criteria for “predatory” journals.
    Update (2022): Listed on Cabells under its old name (“East”) with 11 violations.
  • Ethics Today Journal (Franklin Publishing)
    Critical remark (2019): Listed by Cabells with 9 violations.
    Update: “www.franklinpublishing.net expired on 06/21/2022 and is pending renewal or deletion”
  • European Academic Research (Kogaion Publishing Center, formerly Bridge Center)
    Critical remark (2017): Listed by SPJ; Uses impact factor from Universal Impact Factor (now defunct); A thorough review May 2017 concludes that it exhibits at least 15 of the 25 criteria for “predatory” journals.
    Update: A thorough review October 2022 concludes that it exhibits at least 14 of the 25 criteria for “predatory” journals.
  • European Scientific Journal (European Scientific Institute)
    Critical remark (2017): Listed by SPJ; Use of alternative indexes. A thorough review May 2017 concludes that it exhibits at least 9 of the 25 criteria for “predatory” journals.
    Update: A thorough review November 2022 concludes that it exhibits at least 6 of the 25 criteria for “predatory” journals. Another review in May 2023 concludes that it exhibits at least 6 of the 25 criteria.
  • International Journal of Advances in Social Science and Humanities
    Critical remark (2017): Listed by SPJ; Impact factor given by  Global Impact Factor. A thorough review March 2019 concludes that it exhibits at least 10 of the 25 criteria for “predatory” journals.
  • International Journal of Contemporary Research & Review
    Critical remark (2017): Listed by SPJ; Indexed by Index Copernicus; Despite claims they seem not to be indexed by either Chemical Abstracts or DOAJ. 
    A thorough review June 2017 concludes that it exhibits at least 9 of the 25 criteria for “predatory” journals.
  • International Journal of Current Research
    Critical remark (2017): Listed by SPJ; Uses IF from SJIF and Index Copernicus and more. It wrongly claims to be indexed by Thomson Reuters, ORCID and having a DOI among other things. A thorough review January 2018 concludes that it exhibits at least 12 of the 25 criteria for “predatory” journals.
    Update (2023): A thorough review October 2023 concludes that it exhibits at least 11 of the 25 criteria for “predatory” journals.
  • International Journal of Current Research and Academic Review (Excellent Publishers)
    Critical remark (June 2018): Listed by SPJ and Cabells because of misleading claims about credentials, metrics, and too quick review; alternative indexing; publishes in almost any field imaginable; the editor -in-chief is head of the “Excellent Education and Researh Institute” (sic) which does not seem to exist even when spelled right?
    Update: A thorough review in December 2019 concludes that it exhibits at least 12 of the 25 criteria for “predatory journals”.
    Update (2022): A thorough review in July concludes that it exhibits at least 13 of the 25 criteria for “predatory journals”.
  • International Journal of Ethics (Nova Science Publishers)
    Criticism 1
    Critical remark (2022): The article on Nova at Wikipedia notes that librarians have been critical of this publisher; A Ms. Alexandra Columbus is both the owner of, business manager and customer contact for Nova.
    Update (2023): A thorough review in May concludes that it exhibits at least 9 of the 25 criteria for “predatory journals”.
  • International Journal of Ethics & Moral Philosophy (Journal Network)
    Critical remark (2017): Listed by SPJ; Publisher was criticized by Beall when launching 350 journals at once; After several years not one associate editor has signed up and no article has been published; No editorial or contact details available. Thorough reviews in May 2019 and February 2020 conclude that it exhibits at least 10 to 12 of the 25 criteria for “predatory journals”.
    Update (2022): Does not seem to be online.
  • International Journal of Ethics in Engineering & Management Education
    Critical remark (2019): Papers from almost any field; Claims to have a 5.4 Impact factor (from IJEEE); Indexed by GJIF etc. A non-existent address in “Varginia”, US (sic!); Open access but asks for the copyright; Claims to be indexed in Scopus can’t be verified.
    Update (2020): Thorough reviews February 2018 and February 2020 conclude that it exhibits at least 16-17 of the 25 criteria for “predatory” journals. Listed by Cabells with 11 violations found.
  • International Journal of Humanities and Social Science (Centre for Promoting Ideas)
    Criticism 1 │ Criticism 2 │ Criticism 3 │ Criticism 4
    Critical remark (2019): The chief editor listed in April 2014  is a deceased person (2018). A thorough review in April 2019 concludes that it exhibits at least 9 of the 25 criteria for “predatory” journals.
  • International Journal of Humanities and Social Science Invention
    Criticism 1 
    Critical remark (2017): Listed by SPJ and is on many other lists of blacklisted journals; An IF of 4.5 given by African Quality Centre for Journals; Open access but asks for the copyright; Publishes any subject; Says that the journal is indexed in DOAJ which it does not seem to be. 
    Update: A thorough review February 2018 concludes that it exhibits at least 13 of the 25 criteria for “predatory” journals.
  • International Journal of Humanities and Social Science Research
    Critical remark (2017): Listed by SPJ and Cabells; Claims an IF of 5.22 (by “Research Journal Impact Factor“); Despite title from India; Alternative indexing; Thorough reviews in February 2018 and February 2020 conclude that it exhibits at least 10-13 of the 25 criteria for “predatory” journals.
  • International Journal of Humanities and Social Sciences
    Critical remark (2017): Listed by SPJ; Has an amazing fast-track review option for $100 that guarantees “the review, editorial decision, author notification and publication” to take place “within 2 weeks”. “Editors” claim that repeated requests to be removed from the list of editors result in nothing. Thorough reviews in  February and June 2018 conclude that it seems to exhibit at least 7 to 10 of the 25 criteria for “predatory” journals.
  • International Journal of Humanities & Social Studies
    Critical remark (2017): Listed by SPJ; IF from International Impact Factor Services; States that there “is no scope of correction after the paper publication”.
    Critical remark (2018): They write that the “review process will be completed expectedly within 3-4 days”.
    Critical remark (2020): A thorough review in October 2020 concludes that it seems to exhibit at least 7-8 of the 25 criteria for “predatory” journals.
    Update (2024): A thorough review concludes that it seems to exhibit at least 10 of the 25 criteria for “predatory” journals.
  • International Journal of Legal, Ethical and Regulatory Issues (Jacobs Publishers)
    Criticism 1
    Critical remark (2019): Spamming with invitation to publish. They are unsure of their own name; in the e-mail they call the journal “International Journal of Legal, Ethical and Regulatory Affairs“! Publisher listed on SPJ. Editor-in-chief and editorial board are missing. Claims that material is “written by leading scholars” which is obviously false.
    Update (2022): Publisher cannot be found any longer.
  • International Journal of Philosophy (SciencePG)
    Criticism 1 │ Criticism 2
    Critical remark (2017): Listed by SPJ; Alternative indexing and also IF from Universal Impact Factor (now defunct); Promises a two-week peer review.
    Update: Thorough reviews in April and November 2018 conclude that it seems to exhibit at least 10 or 8 of the 25 criteria for “predatory” journals and also find obvious examples of pseudo-science among the published articles.
    Update (2023): A thorough review in October concludes that it seems to exhibit at least 6 of the 25 criteria for “predatory” journals.
  • International Journal of Philosophy and Theology (American Research Institute for Policy Development) Criticism 1 │Criticism 2 │ Criticism 3
    Critical remark: A thorough review in June 2018 concludes that “there are grounds to believe that the American Research Institute never intended to create a serious scientific periodical and that, on the contrary, its publications are out-and-out predatory journals.”
    Update (2022): A thorough review in June concludes that it seems to exhibit at least 9 of the 25 criteria for “predatory” journals. However, the website could not be accessed on June 21.
  • International Journal of Public Health and Human Rights (Bioinfo Publications)
    Criticism 1
    Critical remark (2017): Listed on SPJ; On many other lists of predatory journals and have an IF from Index Copernicus.
    Update (2022): Not accessible in June.
  • International Journal of Research in Humanities and Social Studies (Sryahwa Publications)
    Critical remark (2018): Listed on SPJ; Open access but asks for the copyright. A thorough review in April 2018 concludes that it seems to exhibit at least 9 of the 25 criteria for “predatory” journals.
    Update (2022): A June review again confirmed that it seems to exhibit at least 9 of the 25 criteria for “predatory” journals.
  • International Journal of Social Science and Humanities Research (Research Publish Journals)
    Critical remark (2017): Listed on SPJ; On their homepage they state that in order to get a high IF their journals are “indexed in top class organisation around the world” although no major index is used.
    Update: A thorough review in 2020 concludes that it seems to exhibit at least 14 of the 25 criteria for “predatory” journals.
  • International Open Journal of Philosophy (Academic and Scientific Publishing)
    Critical remark (2017): Listed on SPJ and was heavily critized on Beall’s blog; The editorial board consists of one person from Iran; Although boosting 12 issues a year they have published only 1 article in the journal’s first four years.
    Update: A thorough review March 1 2017 concludes that it exhibits 17 of the 25 criteria for “predatory” journals and one in March 2019 that it exhibits at least 13 criteria.
  • International Researchers
    Critical remark (2017): Listed on SPJ; Indexed by e.g. Index Copernicus; Claims that it is “Monitor by Thomson Reuters” but is not part of the TR journal citation reports; Several pages are not working at time of review; A thorough review April 24 2017 concludes that it exhibits at least 6 of the 25 criteria for “predatory” journals.
  • Internet Journal of Law, Healthcare and Ethics (ISPUB)
    Criticism 1 │ Criticism 2
    Critical remark (2017): Formerly on Beall’s list.
  • Journal of Academic and Business Ethics (Academic and Business Research Institute)
    Critical remark (2017): Listed on SPJ as well as several other; Journal seems uncertain about it’s own name, the header curiously says “Journal of ethical and legal issues”.
    Update 2021: A thorough review May 2021 concludes that it exhibits at least 7 of the 25 criteria for “predatory” journals.
  • Journal of Bioethics and Applications (Sci Forschen)
    Critical remark (2018): Brand new journal with no articles yet. Publisher has been criticized for spamming , have a bad record at Scam Analyze, and is listed on SPJ.
    Critical remark (2022): A thorough review March 2022 concludes that it exhibits at least 7 of the 25 criteria for “predatory” journals.
  • Journal of Clinical Research & Bioethics (OMICS/Walsh MedicalMedia)
    Criticism 1 │ Criticism 2 │ Criticism 3 │ Criticism 4 │ Criticism 5 │ Criticism 6
    Critical remark (2017): This publisher is listed on SPJ and was taken to court for possible fraud by the Federal Trade Commission in the US (and lost). They are listed by Cabells for 8 violations.
    Update (2022): They now have a new (?) publisher, but still the same Danish editor as before. A thorough review May 2022 concludes that it exhibits at least 7 of the 25 criteria for “predatory” journals.
  • Journal of Law and Ethics
    Critical remark (2017): Listed on SPJ; Claims to be on Ulrichs but is not; Claims to be in the Norwegian list and can actually be found there but under its former name (4 years earlier) and with 0 points.
    Update 2019: Seems to have moved to here. Security warnings and denied access makes it impossible to check whether it is the same journal or another one.
  • Journal of Philosophy and Ethics (Sryahwa Publications)
    Critical remark (2019): listed by Cabells for 7 violations.
    Critical remark 2020): A thorough review October 2020 concludes that it exhibits at least 11 of the 25 criteria for “predatory” journals.
  • Journal of Research in Philosophy and History (Scholink)
    Criticism 1 
    Critical remark (June 2018): Listed on several lists of predatory publishers. They only do “peer review” through their own editorial board, a flowchart states. They claim to check for plagiarism but the first 2018 article abstract run by us through a checker turned out to be self-plagiarized from a book and it looks to have been published many times over. Unfortunately, the next paper checked in the same issue was also published the previous year by another journal listed here…
    Critical remark (March 2021): A thorough review concludes that it exhibits at least 14 of the 25 criteria for “predatory” journals.
    Update 2023: A thorough review concludes that it exhibits at least 11 of the 25 criteria for “predatory” journals.
  • Journal of Social Sciences and Humanities (AASCIT)
    Criticism 1 │ Criticism 2 │ Criticism 3
    Critical remark (2019): From law to religion, this journal publishes it all. Though publisher claims to be “American”, it has only two editors, both from India. The list from Cabells includes 13 journals from this publisher. The AASCIT Code of Ethics apparently plagiarizes the INCOSE Code of Ethics.
  • Journal of Studies in Social Sciences and Humanities
    Critical remark (2017): Listed on SPJ; Alternative indexing; Uses several alternative IF providers. A thorough review October 2017 concludes that it exhibits at least 9 of the 25 criteria for “predatory” journals.
    Critical remark (2020): A thorough review October 2020 concludes that it exhibits at least 4 of the 25 criteria for “predatory” journals.
  • JSM Health Education and Primary Health Care
    Spamming with invitation to special issue on ‘Bioethics’. The publisher is listed on SPJ,  and criticized and exposed here. It is indexed by spoof indexer Directory of Research Journals Indexing among others (whose website is now gone, BTW).
    Update (2019): Access denied because of non-secure connection.
    Update (2022): Access now possible again.
  • Medical Ethics and Communication (Avid Science)
    Criticism 1
    Critical remarks (2017): Listed on SPJ; Spamming researchers with offer of eBook publication for $350.
    Update: In June 2022, the journal cannot be accessed online.
  • Nova Journal of Humanities and Social Sciences
    Criticism 1
    Critical remark (2018): This publisher was on Beall’s list; Uses alternative impact factors and indexing; Publishes in less than 30 days; Curiously, it says no fee is charged for publication.
    Update: In June 2022, the journal cannot be accessed online.
  • Open Journal of Philosophy (Scientific Research Publishing – SCIRP)
    Criticism 1 │ Criticism 2 │
    Critical remark (2021): A thorough review March 2021 concludes that it exhibits 6 of the 25 criteria for “predatory” journals.
  • Open Journal for Studies in Philosophy (Center for Open Access in Science)
    Critical remark (2020): Cabells found 8 violations.
    Update: Thorough reviews May-June 2022 concludes that it exhibits at least 8-9 of the 25 criteria for “predatory” journals.
  • Philosophical Papers and Review (Academic Journals)
    Critical remark (2017): Listed on SPJ and blacklisted by the Ministry of Higher Education of Malaysia.
    Update (2021): Latest article in press was accepted the same day it was sent in – and it happened back in 2018!
    Update: A thorough review April 2022 concludes that it exhibits at least 10 of the 25 criteria for “predatory” journals.
  • Philosophy Study  (David Publishing Company)
    Criticism 1 │ Criticism 2
    Critical remark (2017): Listed on SPJ. A thorough review October 2019 concludes that it exhibits approx. 8 of the 25 criteria for “predatory” journals.
    Update: Another thorough review December 2023 concludes that it exhibits at least 9 of the 25 criteria for “predatory” journals.
  • The Recent Advances in Academic Science Journal (Swedish Scientific Publications)
    Critical remark (2018): Despite the publisher’s name it seems based in India. The only Swedish editor’s existence cannot be verified. Website quality is lacking. Listed on SPJ. A thorough review October 2017 concludes that it exhibits at least 15 of the 25 criteria for “predatory” journals.
    Update: Domain for sale in June 2022.
  • Universal Open Ethics Journal (Adyan Academic Press)
    Critical remark (2019): listed by Cabells for 7 violations.
    Update: Thorough reviews in May 2022 concludes that it exhibits 13 to 20 of the 25 criteria for “predatory” journals.
  • World Journal of Social Sciences and Humanities (Science and Education Publishing, SciEP)
    Criticism 1 │Criticism 2
    Critical remark (2017): Listed on SPJ as well as many other.
    Update: A thorough review in May 2019 concludes that it exhibits at least 7 of the 25 criteria for “predatory” journals.

End remark:

In light of legal action and threats against people trying to warn others about dubious publishers and journals – see here and here, for example – we want to stress that this blog post is about where we would like our articles to show up, it is about quality, and as such it is an expression of a professional judgement intended to help authors find good journals with which to publish.

Indirectly, this may also help readers to be more discerning about the articles they read. As such it is no different from other rankings that can be found for various products and services everywhere. Our list of where not to publish implies no accusation of deception or fraud but claims to identify journals that experienced bioethicists would usually not find to be of high quality. Those criticisms linked to might be more upfront or confrontational; us linking to them does not imply an endorsement of any objectionable statement made therein. We would also like to point out that individual papers published in these journals might of course nevertheless be perfectly acceptable contributions to the scholarly literature of bioethics.

Essential resources on so-called predatory publishing and open access:

Written by…

Stefan Eriksson, Associate Professor of Research Ethics at Uppsala University, read more about his work on publication, regulation and consent.

and…

Gert Helgesson, professor of Medical Ethics at Karolinska Institute.


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An ethical strategy for improving the healthcare of brain-damaged patients

Brain, image by OpenClipart-Vectors
31 May, 2022 / / 1 Comment

How can we improve the clinical care of brain-damaged patients? Individual clinicians, professional and patient associations, and other relevant stakeholders are struggling with this huge challenge.

A crucial step towards a better treatment of these very fragile patients is the elaboration and adoption of agreed-upon recommendations for their clinical treatment, both in emergency and intensive care settings. These recommendations should cover different aspects, from diagnosis to prognosis and rehabilitation plan. Both Europe and the US have issued relevant guidelines on Disorders of Consciousness (DoCs) in order to make clinical practice consistent and ultimately more beneficial to patients.

Nevertheless, these documents risk becoming ineffective or not having sufficient impact if they are not complemented with a clear strategy for operationalizing them. In other words, it is necessary to develop an adequate translation of the guidelines into actual clinical practice.

In a recent article that I wrote with Arleen Salles, we argue that ethics plays a crucial role in elaborating and implementing this strategy. The application of the guidelines is ethically very relevant, as it can directly impact the patients’ well-being, their right to the best possible care, communication between clinicians and family members, and overall shared decision-making. Failure to apply the guidelines in an ethically sound manner may inadvertently lead to unequal and unfair treatment of certain patients.

To illustrate, both documents recommend integrating behavioural and instrumental approaches to improve the diagnostic accuracy of DoCs (such as vegetative state/unresponsive wakefulness syndrome, minimally conscious state, and cognitive-motor dissociation). This recommendation is commendable, but not easy to follow because of a number of shortcomings and limitations in the actual clinical settings where patients with DoCs are diagnosed and treated. For instance, not all “ordinary,” non-research oriented hospitals have the necessary financial, human, and technical resources to afford the dual approach recommended by the guidelines. The implementation of the guidelines is arguably a complex process, involving several actors at different levels of action (from the administration to the clinical staff, from the finances to the therapy, etc.). Therefore, it is crucial to clearly identify “who is responsible for what” at each level of the implementation process.

For this reason, we propose that a strategy is built up to operationalize the guidelines, based on a clarification of the notion of responsibility. We introduce a Distributed Responsibility Model (DRM), which frames responsibility as multi-level and multi-dimensional. The main tenet of DRM is a shift from an individualistic to a modular understanding of responsibility, where several agents share professional and/or moral obligations across time. Moreover, specific responsibilities are assigned depending on the different areas of activity. In this way, each agent is assigned a specific autonomy in relation to their field of activity, and the mutual interaction between different agents is clearly defined. As a result, DRM promotes trust between the various agents.

Neither the European nor the US guidelines explicitly address the issue of implementation in terms of responsibility. We argue that this is a problem, because in situations of scarce resources and financial and technological constraints, it is important to explicitly conceptualize responsibility as a distributed ethical imperative that involves several actors. This will make it easier to identify possible failures at different levels and to implement adequate corrective action.

In short, we identify three main levels of responsibility: institutional, clinical, and interpersonal. At the institutional level, responsibility refers to the obligations of the relevant institution or organization (such as the hospital or the research centre). At the clinical level, responsibility refers to the obligations of the clinical staff. At the interpersonal level, responsibility refers to the involvement of different stakeholders with individual patients (more specifically, institutions, clinicians, and families/surrogates).

Our proposal in the article is thus to combine these three levels, as formalized in DRM, in order to operationalize the guidelines. This can help reduce the gap between the recommendations and actual clinical practice.

Written by…

Michele Farisco, Postdoc Researcher at Centre for Research Ethics & Bioethics, working in the EU Flagship Human Brain Project.

Farisco, Michele; Salles, Arleen. American and European Guidelines on Disorders of Consciousness: Ethical Challenges of Implementation, Journal of Head Trauma Rehabilitation: April 13, 2022. doi: 10.1097/HTR.0000000000000776

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Safeguards when biobank research complies with the General Data Protection Regulation

17 May, 2022 / / 1 Comment

The General Data Protection Regulation (GDPR) entails a tightening of EU data protection rules. These rules do not only apply to the processing of personal data by companies. They apply in general, also to scientific research, which in many cases could entail serious restrictions on research. However, the GDPR allows for several derogations and exemptions when it comes to research that would otherwise probably be made impossible or considerably more difficult.

Such derogations are allowed only if appropriate safeguards, which are in accordance with the regulation, are in place. But what safeguards may be required? Article 89 of the regulation mentions technical and organizational measures to ensure compliance with the principle of data minimization: personal data shall be adequate, relevant and limited to what is necessary in relation to the purposes for which they are processed. Otherwise, Article 89 does not specify what safeguards are required, or what it means that the safeguards must be in accordance with the GDPR.

Biobank and genetic research require large amounts of biological samples and health-related data. Personal data may need to be stored for a long time and reused by new research groups for new research purposes. This would not be possible if the regulation did not grant an exemption from the rule that personal data may not be stored longer than necessary and for purposes not specified at data collection. But the question remains, what safeguards may be required to grant exemption?

The issue is raised by Ciara Staunton and three co-authors in an article in Frontiers in Genetics. The article begins by discussing the regulation and how to interpret the requirement that the safeguards should be “in accordance with the GDPR.” Then six possible safeguards are proposed for biobank and genetic research. The proposal is based on a thorough review of a number of documents that regulate health research.

Here, I merely want to recommend reading to anyone working on the issue of appropriate safeguards in biobank and genetic research. Therefore, I mention only briefly that the proposed safeguards concern (1) consent, (2) independent review and oversight, (3) accountable processes, (4) clear and transparent policies and processes, (5) security, and (6) training and education.

If you want to know more about the proposed safeguards, you will find the article here: Appropriate Safeguards and Article 89 of the GDPR: Considerations for Biobank, Databank and Genetic Research.

Pär Segerdahl

Written by…

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

Ciara Staunton, Santa Slokenberga, Andrea Parziale and Deborah Mascalzoni. Appropriate Safeguards and Article 89 of the GDPR: Considerations for Biobank, Databank and Genetic Research. Frontiers in Genetics. 18 February 2022 doi: 10.3389/fgene.2022.719317

This post in Swedish

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