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

Category: In the research debate (Page 1 of 25)

YouTube as a source of information on paediatric cancer trials

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

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

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

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

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

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

Pär Segerdahl

Written by…

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

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

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We care about communication

Securing the future already from the beginning

Imagine if there was a reliable method for predicting and managing future risks, such as anything that could go wrong with new technology. Then we could responsibly steer clear of all future dangers, we could secure the future already now.

Of course, it is just a dream. If we had a “reliable method” for excluding future risks from the beginning, time would soon rush past that method, which then proved to be unreliable in a new era. Because we trusted the method, the method of managing future risks soon became a future risk in itself!

It is therefore impossible to secure the future from the beginning. Does this mean that we must give up all attempts to take responsibility for the future, because every method will fail to foresee something unpredictably new and therefore cause misfortune? Is it perhaps better not to try to take any responsibility at all, so as not to risk causing accidents through our imperfect safety measures? Strangely enough, it is just as impossible to be irresponsible for the future as it is to be responsible. You would need to make a meticulous effort so that you do not happen to cook a healthy breakfast or avoid a car collision. Soon you will wish you had a “safe method” that could foresee all the future dangers that you must avoid to avoid if you want to live completely irresponsibly. Your irresponsibility for the future would become an insurmountable responsibility.

Sorry if I push the notions of time and responsibility beyond their breaking point, but I actually think that many of us have a natural inclination to do so, because the future frightens us. A current example is the tendency to think that someone in charge should have foreseen the pandemic and implemented powerful countermeasures from the beginning, so that we never had a pandemic. I do not want to deny that there are cases where we can reason like that – “someone in charge should have…” – but now I want to emphasize the temptation to instinctively reason in such a way as soon as something undesirable occurs. As if the future could be secured already from the beginning and unwanted events would invariably be scandals.

Now we are in a new situation. Due to the pandemic, it has become irresponsible not to prepare (better than before) for risks of pandemics. This is what our responsibility for the future looks like. It changes over time. Our responsibility rests in the present moment, in our situation today. Our responsibility for the future has its home right here. It may sound irresponsible to speak in such a way. Should we sit back and wait for the unwanted to occur, only to then get the responsibility to avoid it in the future? The problem is that this objection once again pushes concepts beyond their breaking point. It plays around with the idea that the future can be foreseen and secured already now, a thought pattern that in itself can be a risk. A society where each public institution must secure the future within its area of ​​responsibility, risks kicking people out of the secured order: “Our administration demands that we ensure that…, therefore we need a certificate and a personal declaration from you, where you…” Many would end up outside the secured order, which hardly secures any order. And because the trouble-makers are defined by contrived criteria, which may be implemented in automated administration systems, these systems will not only risk making systematic mistakes in meeting real people. They will also invite cheating with the systems.

So how do we take responsibility for the future in a way that is responsible in practice? Let us first calm down. We have pointed out that it is impossible not to take responsibility! Just breathing means taking responsibility for the future, or cooking breakfast, or steering the car. Taking responsibility is so natural that no one needs to take responsibility for it. But how do we take responsibility for something as dynamic as research and innovation? They are already in the future, it seems, or at least at the forefront. How can we place the responsibility for a brave new world in the present moment, which seems to be in the past already from the beginning? Does not responsibility have to be just as future oriented, just as much at the forefront, since research and innovation are constantly moving towards the future, where they make the future different from the already past present moment?

Once again, the concepts are pushed beyond their breaking point. Anyone who reads this post carefully can, however, note a hopeful contradiction. I have pointed out that it is impossible to secure the future already now, from the beginning. Simultaneously, I point out that it is in the present moment that our responsibility for the future lies. It is only here that we take responsibility for the future, in practice. How can I be so illogical?

The answer is that the first remark is directed at our intellectual tendency to push the notions of time and responsibility beyond their limits, when we fear the future and wish that we could control it right now. The second remark reminds us of how calmly the concepts of time and responsibility work in practice, when we take responsibility for the future. The first remark thus draws a line for the intellect, which hysterically wants to control the future totally and already from the beginning. The second remark opens up the practice of taking responsibility in each moment.

When we take responsibility for the future, we learn from history as it appears in current memory, as I have already indicated. The experiences from the pandemic make it possible at present to take responsibility for the future in a different way than before. The not always positive experiences of artificial intelligence make it possible at present to take better responsibility for future robotics. The strange thing, then, is that taking responsibility presupposes that things go wrong sometimes and that we are interested in the failures. Otherwise we had nothing to learn from, to prepare responsibly for the future. It is really obvious. Responsibility is possible only in a world that is not fully secured from the beginning, a world where the undesirable happens. Life is contradictory. We can never purify security according to the one-sided demands of the intellect, for security presupposes the uncertain and the undesirable.

Against this philosophical background, I would like to recommend an article in the Journal of Responsible Innovation, which discusses responsible research and innovation in a major European research project, the Human Brain Project (HBP): From responsible research and innovation to responsibility by design. The article describes how one has tried to be foresighted and take responsibility for the dynamic research and innovation within the project. The article reflects not least on the question of how to continue to be responsible even when the project ends, within the European research infrastructure that is planned to be the project’s product: EBRAINS.

The authors are well aware that specific regulated approaches easily become a source of problems when they encounter the new and unforeseen. Responsibility for the future cannot be regulated. It cannot be reduced to contrived criteria and regulations. One of the most important conclusions is that responsibility from the beginning needs to be an integral part of research and innovation, rather than an external framework. Responsibility for the future requires flexibility, openness, anticipation, engagement and reflection. But what is all that?

Personally, I want to say that it is partly about accepting the basic ambiguity of life. If we never have the courage to soar in uncertainty, but always demand security and nothing but security, we will definitely undermine security. By being sincerely interested in the uncertain and the undesirable, responsibility can become an integral part of research and innovation.

Pär Segerdahl

Written by…

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

Bernd Carsten Stahl, Simisola Akintoye, Lise Bitsch, Berit Bringedal, Damian Eke, Michele Farisco, Karin Grasenick, Manuel Guerrero, William Knight, Tonii Leach, Sven Nyholm, George Ogoh, Achim Rosemann, Arleen Salles, Julia Trattnig & Inga Ulnicane. From responsible research and innovation to responsibility by design. Journal of Responsible Innovation. (2021) DOI: 10.1080/23299460.2021.1955613

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Approaching future issues

Can subjectivity be explained objectively?

The notion of a conscious universe, animated by unobservable experiences, is today presented almost as a scientific hypothesis. How is that possible? Do cosmologists’ hypotheses that the universe is filled with dark matter and dark energy contribute to making the idea of ​​a universe filled with “dark consciousness” almost credible?

I ask the question because I myself am amazed at how the notion that elementary particles have elementary experiences suddenly has become academically credible. The idea that consciousness permeates reality is usually called panpsychism and is considered to have been represented by several philosophers in history. The alleged scientific status of panpsychism is justified today by emphasizing two classic philosophical failures to explain consciousness. Materialism has not succeeded in explaining how consciousness can arise from non-conscious physical matter. Dualism has failed to explain how consciousness, if it is separate from matter, can interact with physical reality.

Against this discouraging background, panpsychism is presented as an attractive, even elegant solution to the problem of consciousness. The hypothesis is that consciousness is hidden in the universe as a fundamental non-observable property of matter. Proponents of this elegant solution suggest that this “dark consciousness,” which permeates the universe, is extremely modest. Consciousness is present in every elementary particle in the form of unimaginably simple elementary experiences. These insignificant experiences are united and strengthened in the brain’s nervous system, giving rise to what we are familiar with as our powerful human consciousness, with its stormy feelings and thoughts.

However, this justification of panpsychism as an elegant solution to a big scientific problem presupposes that there really is a big scientific problem to “explain consciousness.” Is not the starting point a bit peculiar, that even subjectivity must be explained as an objective phenomenon? Even dualism tends to objectify consciousness, since it presents consciousness as a parallel universe to our physical universe.

The alternative explanations are thus all equally objectifying. Either subjectivity is reduced to purely material processes, or subjectivity is explained as a mental parallel universe, or subjectivity is hypostasized as “dark consciousness” that pervades the universe: as elementary experiential qualities of matter. Can we not let subjectivity be subjectivity and objectivity be objectivity?

Once upon a time there was a philosopher named Immanuel Kant. He saw how our constantly objectifying subjectivity turns into an intellectual trap, when it tries to understand itself without limiting its own objectifying approach to all questions. We then resemble cats that hopelessly chase their own tails: either by spinning to the right or by spinning to the left. Both directions are equally frustrating. Is there an elegant solution to the spinning cat’s problem? Now, I do not want to claim that Kant definitely exposed the “hard problem” of consciousness as an intellectual trap, but he pointed out the importance of self-critically examining our projective, objectifying way of functioning. If we lived as expansively as we explain everything objectively, we would soon exhaust the entire planet… is not that exactly what we do?

During a philosophy lecture, I tried to show the students how we can be trapped by apparent problems, by pseudo-problems that of course are not scientific problems, since they make us resemble cats chasing their own tails without realizing the unrealizability of the task. One student did not like what she perceived as an arbitrary limitation of the enormous achievements of science, so she objected: “But if it is the task of science to explain all big problems, then it must attempt to explain these riddles as well.” The objection is similar to the motivation of panpsychism, where it is assumed that it is the task of science to explain everything objectively, even subjectivity, no matter how hopelessly the questions spin in our heads.

The spinning cat’s problem has a simple solution: stop chasing the tail. Humans, on the other hand, need to clearly see the hopelessness of their spinning in order to stop it. Therefore, humans need to philosophize in order to live well on this planet.

Pär Segerdahl

Written by…

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

If you want to read more about panpsychism, here are two links:

Does consciousness pervade the universe?

The idea that everything from spoons to stones is conscious is gaining academic credibility

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We challenge habits of thought

Consciousness and complexity: theoretical challenges for a practically useful idea

Contemporary research on consciousness is ambiguous, like the double-faced god Janus. On the one hand, it has achieved impressive practical results. We can today detect conscious activity in the brain for a number of purposes, including better therapeutic approaches to people affected by disorders of consciousness such as coma, vegetative state and minimally conscious state. On the other hand, the field is marked by a deep controversy about methodology and basic definitions. As a result, we still lack an overarching theory of consciousness, that is to say, a theoretical account that scholars agree upon.

Developing a common theoretical framework is recognized as increasingly crucial to understanding consciousness and assessing related issues, such as emerging ethical issues. The challenge is to find a common ground among the various experimental and theoretical approaches. A strong candidate that is achieving increasing consensus is the notion of complexity. The basic idea is that consciousness can be explained as a particular kind of neural information processing. The idea of associating consciousness with complexity was originally suggested by Giulio Tononi and Gerald Edelman in a 1998 paper titled Consciousness and Complexity. Since then, several papers have been exploring its potential as the key for a common understanding of consciousness.

Despite the increasing popularity of the notion, there are some theoretical challenges that need to be faced, particularly concerning the supposed explanatory role of complexity. These challenges are not only philosophically relevant. They might also affect the scientific reliability of complexity and the legitimacy of invoking this concept in the interpretation of emerging data and in the elaboration of scientific explanations. In addition, the theoretical challenges have a direct ethical impact, because an unreliable conceptual assumption may lead to misplaced ethical choices. For example, we might wrongly assume that a patient with low complexity is not conscious, or vice-versa, eventually making medical decisions that are inappropriate to the actual clinical condition.

The claimed explanatory power of complexity is challenged in two main ways: semantically and logically. Let us take a quick look at both.

Semantic challenges arise from the fact that complexity is such a general and open-ended concept. It lacks a shared definition among different people and different disciplines. This open-ended generality and lack of definition can be a barrier to a common scientific use of the term, which may impact its explanatory value in relation to consciousness. In the landmark paper by Tononi and Edelman, complexity is defined as the sum of integration (conscious experience is unified) and differentiation (we can experience a large number of different states). It is important to recognise that this technical definition of complexity refers only to the stateof consciousness, not to its contents. This means that complexity-related measures can give us relevant information about the levelof consciousness, yet they remain silent about the corresponding contentsandtheirphenomenology. This is an ethically salient point, since the dimensions of consciousness that appear most relevant to making ethical decisions are those related to subjective positive and negative experiences. For instance, while it is generally considered as ethically neutral how we treat a machine, it is considered ethically wrong to cause negative experiences to other humans or to animals.

Logical challenges arise about the justification for referring to complexity in explaining consciousness. This justification usually takes one of two alternative forms. The justification is either bottom-up (from data to theory) or top-down (from phenomenology to physical structure). Both raise specific issues.

Bottom-up: Starting from empirical data indicating that particular brain structures or functions correlate to particular conscious states, relevant theoretical conclusions are inferred. More specifically, since the brains of subjects that are manifestly conscious exhibit complex patterns (integrated and differentiated patterns), we are supposed to be justified to infer that complexity indexes consciousness. This conclusion is a sound inference to the best explanation, but the fact that a conscious state correlates with a complex brain pattern in healthy subjects does not justify its generalisation to all possible conditions (for example, disorders of consciousness), and it does not logically imply that complexity is a necessary and/or sufficient condition for consciousness.

Top-down: Starting from certain characteristics of personal experience, we are supposed to be justified to infer corresponding characteristics of the underlying physical brain structure. More specifically, if some conscious experience is complex in the technical sense of being both integrated and differentiated, we are supposed to be justified to infer that the correlated brain structures must be complex in the same technical sense. This conclusion does not seem logically justified unless we start from the assumption that consciousness and corresponding physical brain structures must be similarly structured. Otherwise it is logically possible that conscious experience is complex while the corresponding brain structure is not, and vice versa. In other words, it does not appear justified to infer that since our conscious experience is integrated and differentiated, the corresponding brain structure must be integrated and differentiated. This is a possibility, but not a necessity.

The abovementioned theoretical challenges do not deny the practical utility of complexity as a relevant measure in specific clinical contexts, for example, to quantify residual consciousness in patients with disorders of consciousness. What is at stake is the explanatory status of the notion. Even if we question complexity as a key factor in explaining consciousness, we can still acknowledge that complexity is practically relevant and useful, for example, in the clinic. In other words, while complexity as an explanatory category raises serious conceptual challenges that remain to be faced, complexity represents at the practical level one of the most promising tools that we have to date for improving the detection of consciousness and for implementing effective therapeutic strategies.

I assume that Giulio Tononi and Gerald Edelman were hoping that their theory about the connection between consciousness and complexity finally would erase the embarrassing ambiguity of consciousness research, but the deep theoretical challenges suggest that we have to live with the resemblance to the double-faced god Janus for a while longer.

Written by…

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

Tononi, G. and G. M. Edelman. 1998. Consciousness and complexity. Science 282(5395): 1846-1851.

We like critical thinking

Dynamic consent: broad and specific at the same time

The challenge of finding an appropriate way to handle informed consent to biobank research is big and has often been discussed here on the Ethics Blog. Personal data and biological samples are collected and saved for a long time to be used in future research, for example, on how genes and the environment interact in various diseases. The informed consent to research is for natural reasons broad, because when collecting data and samples it is not yet possible to specify which future research studies the material will be used in.

An unusually clear and concise article on biobank research presents a committed approach to the possible ethical challenges regarding broad consent. The initial broad consent to research is combined with clearly specified strong governance and oversight mechanisms. The approach is characterized also by continuous communication with the research participants, through which they receive updated information that could not be given at the time of the original consent. This enables participants to stay specifically informed and make autonomous choices about their research participation through time.

The model is called dynamic consent. This form of consent can be viewed as broad and specific at the same time. The article describes experiences from a long-term biobank study in South Tyrol in Italy, the CHRIS study, where dynamic consent is implemented since 2011. The model is now used to initiate the first follow-up phase, where participants are contacted for further sampling and data collection in new studies.

The article on dynamic consent in the CHRIS study is written by Roberta Biasiotto, Peter P. Pramstaller and Deborah Mascalzoni. In addition to describing their experiences of dynamic consent, they also respond to common objections to the model, for example, that participants would be burdened by constant requests for consent or that participants would have an unreasonable influence over research.

I would like to emphasize once again the clarity of the article, which shows great integrity and courage. The authors do not hide behind a facade of technical terminology and jargon, so that one must belong to a certain academic discipline to understand. They write broadly and specifically at the same time, I am inclined to say! This inspires confidence and indicates how sincerely one has approached the ethical challenges of involving and communicating with research participants in the CHRIS study.

Pär Segerdahl

Written by…

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

Biasiotto, Roberta; Pramstaller, Peter P.; Mascalzoni, Deborah. 2021. The dynamic consent of the Cooperative Health Research in South Tyrol (CHRIS) study: broad aim within specific oversight and communication. Part of BIOLAW JOURNAL-RIVISTA DI BIODIRITTO, pp. 277-287. http://dx.doi.org/10.15168/2284-4503-786

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We care about communication

Challenges in end-of-life care of people with severe dementia

In order to improve care, insight is needed into the challenges that one experiences in the daily care work. One way to gain insight is to conduct interview studies with healthcare staff. The analysis of the interviews can provide a well-founded perspective on the challenges, as they are experienced from within the practices.

In Sweden, people with severe dementia usually die in nursing homes. Compared to the specialised palliative care of cancer patients, the general care of people with severe dementia at the end of life is less advanced, with fewer opportunities to relieve pain and other ailments. To gain a clearer insight into the challenges, Emma Lundin and Tove Godskesen conducted an interview study with nurses in various nursing homes in Stockholm. They approached the profession that is largely responsible for relieving pain and other ailments in dying severely demented people.

The content of the interviews was thematically analysed as three types of challenges: communicative, relational and organisational. The communicative challenges have to do with the difficulty of assessing type of pain and pain level in people with severe dementia, as they often cannot understand and answer questions. Assessment becomes particularly difficult if the nurse does not already know the person with dementia and therefore cannot assess the difference between the person’s current and previous behaviour. Communication difficulties also make it difficult to find the right dose of pain medications. In addition, they make it difficult to assess whether the person’s behaviour expresses pain or rather anxiety, which may need other treatment.

Visiting relatives can often help nurses interpret the behaviour of the person with dementia. However, they can also interfere with nurses’ work to relieve pain, since they can have different opinions about the use of, for example, morphine. Some relatives want to increase the dose to be sure that the person with dementia does not suffer from pain, while others are worried that morphine may cause death or create addiction.

The organisational challenges have to do in part with understaffing. The nurses do not have enough time to spend with the demented persons, who sometimes die alone, perhaps without optimal pain relief. Furthermore, there is often a lack of professional competence and experience at the nursing homes regarding palliative care for people with severe dementia: it is a difficult art.

The authors of the article argue that these challenges point to the need for specialist nurses who are trained in palliative care for people with dementia. They further ague that resources and strategies are needed to inform relatives about end-of-life care, and to involve them in decision-making where they can represent the relative. Relatives may need to be informed that increased morphine doses are probably not due to drug addiction. Rather, they are due to the fact that the need for pain relief increases as more and more complications arise near death. If the intention is to relieve symptoms at the end of life, you may end up in a situation where large doses of morphine need to be given to relieve pain, despite the risk to the patient.

If you want a deeper insight into the challenges, read the article in BMC Nursing: End-of-life care for people with advanced dementia and pain: a qualitative study in Swedish nursing homes.

Pär Segerdahl

Written by…

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

Lundin, E., Godskesen, T.E. End-of-life care for people with advanced dementia and pain: a qualitative study in Swedish nursing homes. BMC Nurs 20, 48 (2021). https://doi.org/10.1186/s12912-021-00566-7

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We like real-life ethics

To change the changing human

Neuroscience contributes to human self-understanding, but it also raises concerns that it might change humanness, for example, through new neurotechnology that affects the brain so deeply that humans no longer are truly human, or no longer experience themselves as human. Patients who are treated with deep brain stimulation, for example, can state that they feel like robots.

What ethical and legal measures could such a development justify?

Arleen Salles, neuroethicist in the Human Brain Project, argues that the question is premature, since we have not clarified our concept of humanness. The matter is complicated by the fact that there are several concepts of human nature to be concerned about. If we believe that our humanness consists of certain unique abilities that distinguish humans from animals (such as morality), then we tend to dehumanize beings who we believe lack these abilities as “animal like.” If we believe that our humanity consists in certain abilities that distinguish humans from inanimate objects (such as emotions), then we tend to dehumanize beings who we believe lack these abilities as “mechanical.” It is probably in the latter sense that the patients above state that they do not feel human but rather as robots.

After a review of basic features of central philosophical concepts of human nature, Arleen Salles’ reflections take a surprising turn. She presents a concept of humanness that is based on the neuroscientific research that one worries could change our humanness! What is truly surprising is that this concept of humanness to some extent questions the question itself. The concept emphasizes the profound changeability of the human.

What does it mean to worry that neuroscience can change human nature, if human nature is largely characterized its ability to change?

If you follow the Ethics Blog and remember a post about Kathinka Evers’ idea of a neuroscientifically motivated responsibility for human nature, you are already familiar with the dynamic concept of human nature that Arleen Salles presents. In simple terms, it can be said to be a matter of complementing human genetic evolution with an “epigenetic” selective stabilization of synapses, which every human being undergoes during upbringing. These connections between brain cells are not inherited genetically but are selected in the living brain while it interacts with its environments. Language can be assumed to belong to the human abilities that largely develop epigenetically. I have proposed a similar understanding of language in collaboration with two ape language researchers.

Do not assume that this dynamic concept of human nature presupposes that humanness is unstable. As if the slightest gust of wind could disrupt human evolution and change human nature. On the contrary, the language we develop during upbringing probably contributes to stabilizing the many human traits that develop simultaneously. Language probably supports the transmission to new generations of the human forms of life where language has its uses.

Arleen Salles’ reflections are important contributions to the neuroethical discussion about human nature, the brain and neuroscience. In order to take ethical responsibility, we need to clarify our concepts, she emphasizes. We need to consider that humanness develops in three interconnected dimensions. It is about our genetics together with the selective stabilization of synapses in living brains in continuous interaction with social-cultural-linguistic environments. All at the same time!

Arleen Salles’ reflections are published as a chapter in a new anthology, Developments in Neuroethics and Bioethics (Elsevier). I am not sure if the publication will be open access, but hopefully you can find Arleen Salles’ contribution via this link: Humanness: some neuroethical reflections.

The chapter is recommended as an innovative contribution to the understanding of human nature and the question of whether neuroscience can change humanness. The question takes a surprising turn, which suggests we all together have an ongoing responsibility for our changing humanness.

Pär Segerdahl

Written by…

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

Arleen Salles (2021). Humanness: some neuroethical reflections. Developments in Neuroethics and Bioethics. https://doi.org/10.1016/bs.dnb.2021.03.002

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We think about bioethics

New dissertation on patient preferences in medical approvals

During the spring, several doctoral students at CRB successfully defended their dissertations. Karin Schölin Bywall defended her dissertation on May 12, 2021. The dissertation, like the two previous ones, reflects a trend in bioethics from theoretical investigations to empirical studies of people’s perceptions of bioethical issues.

An innovative approach in Karin Schölin Bywall’s dissertation is that she identifies a specific area of ​​application where the preference studies that are increasingly used in bioethics can be particularly beneficial. It is about patients’ influence on the process of medical approval. Patients already have such an influence, but their views are obtained somewhat informally, from a small number of invited patients. Karin Schölin Bywall explores the possibility of strengthening patients’ influence scientifically. Preference studies can give decision-makers an empirically more well-founded understanding of what patients actually prefer when they weigh efficacy against side effects and other drug properties.

If you want to know more about the possibility of using preference studies to scientifically strengthen patients’ influence in medical approvals, read Karin Schölin Bywall’s dissertation: Getting a Say: Bringing patients’ views on benefit-risk into medical approvals.

If you want a concise summary of the dissertation, read Anna Holm’s news item on our website: Bringing patients’ views into medical approvals.

Pär Segerdahl

Written by…

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

Schölin Bywall, K. (2021) Getting a Say: Bringing patients’ views on benefit-risk into medical approvals. [Dissertation]. Uppsala University.

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We want solid foundations

Can AI be conscious? Let us think about the question

Artificial Intelligence (AI) has achieved remarkable results in recent decades, especially thanks to the refinement of an old and for a long time neglected technology called Deep Learning (DL), a class of machine learning algorithms. Some achievements of DL had a significant impact on public opinion thanks to important media coverage, like the cases of the program AlphaGo and its successor AlphaGo Zero, which both defeated the Go World Champion, Lee Sedol.

This triumph of AlphaGo was a kind of profane consecration of AI’s operational superiority in an increasing number of tasks. This manifest superiority of AI gave rise to mixed feelings in human observers: the pride of being its creator; the admiration of what it was able to do; the fear of what it might eventually learn to do.

AI research has generated a linguistic and conceptual process of re-thinking traditionally human features, stretching their meaning or even reinventing their semantics in order to attribute these traits also to machines. Think of how learning, experience, training, prediction, to name just a few, are attributed to AI. Even if they have a specific technical meaning among AI specialists, lay people tend to interpret them within an anthropomorphic view of AI.

One human feature in particular is considered the Holy Grail when AI is interpreted according to an anthropomorphic pattern: consciousness. The question is: can AI be conscious? It seems to me that we can answer this question only after considering a number of preliminary issues.

First we should clarify what we mean by consciousness. In philosophy and in cognitive science, there is a useful distinction, originally introduced by Ned Block, between access consciousness and phenomenal consciousness. The first refers to the interaction between different mental states, particularly the availability of one state’s content for use in reasoning and rationally guiding speech and action. In other words, access consciousness refers to the possibility of using what I am conscious of. Phenomenal consciousness refers to the subjective feeling of a particular experience, “what it is like to be” in a particular state, to use the words of Thomas Nagel. So, in what sense of the word “consciousness” are we asking if AI can be conscious?

To illustrate how the sense in which we choose to talk about consciousness makes a difference in the assessment of the possibility of conscious AI, let us take a look at an interesting article written by Stanislas Dehaene, Hakwan Lau and Sid Koudier. They frame the question of AI consciousness within the Global Neuronal Workspace Theory, one of the leading contemporary theories of consciousness. As the authors write, according to this theory, conscious access corresponds to the selection, amplification, and global broadcasting of particular information, selected for its salience or relevance to current goals, to many distant areas. More specifically, Dehaene and colleagues explore the question of conscious AI along two lines within an overall computational framework:

  1. Global availability of information (the ability to select, access, and report information)
  2. Metacognition (the capacity for self-monitoring and confidence estimation).

Their conclusion is that AI might implement the first meaning of consciousness, while it currently lacks the necessary architecture for the second one.

As mentioned, the premise of their analysis is a computational view of consciousness. In other words, they choose to reduce consciousness to specific types of information-processing computations. We can legitimately ask whether such a choice covers the richness of consciousness, particularly whether a computational view can account for the experiential dimension of consciousness.

This shows how the main obstacle in assessing the question whether AI can be conscious is a lack of agreement about a theory of consciousness in the first place. For this reason, rather than asking whether AI can be conscious, maybe it is better to ask what might indicate that AI is conscious. This brings us back to the indicators of consciousness that I wrote about in a blog post some months ago.

Another important preliminary issue to consider, if we want to seriously address the possibility of conscious AI, is whether we can use the same term, “consciousness,” to refer to a different kind of entity: a machine instead of a living being. Should we expand our definition to include machines, or should we rather create a new term to denote it? I personally think that the term “consciousness” is too charged, from several different perspectives, including ethical, social, and legal perspectives, to be extended to machines. Using the term to qualify AI risks extending it so far that it eventually becomes meaningless.

If we create AI that manifests abilities that are similar to those that we see as expressions of consciousness in humans, I believe we need a new language to denote and think about it. Otherwise, important preliminary philosophical questions risk being dismissed or lost sight of behind a conceptual veil of possibly superficial linguistic analogies.

Written by…

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

We want solid foundations

When established treatments do not help

What should the healthcare team do when established treatments do not help the patient? Should one be allowed to test a so-called non-validated treatment on the patient, where efficacy and side effects have not yet been determined scientifically?

Gert Helgesson comments on this problem in Theoretical Medicine and Bioethics. His comment concerns suggestions from authors who in the same journal propose a specific restrictive policy. They argue that if you want to test a non-validated treatment, you should from the beginning plan this as a research project where the treatment is tested on several subjects. Only in this way do you get data that can form the basis for scientific conclusions about the treatment. Above all, the test will undergo ethical review, where the risks to the patient and the reasons for trying the treatment are carefully assessed.

Of course, it is important to be restrictive. At the same time, there are disadvantages with the specific proposal above. If the patient has a rare disease, for example, it can be difficult to gather enough patients to draw scientific conclusions from. Here it may be more reasonable to allow case reports and open storage of data, rather than requiring ethically approved clinical trials. Another problem is that clinical trials take place under conditions that differ from those of patient care. If the purpose is to treat an individual patient because established treatments do not work, then it becomes strange if the patient is included in a randomized study where the patient may end up in the control group which receives the standard treatment. A third problem is when the need for treatment is urgent and there is no time to approach an ethical review board and await their response. Moreover, is it reasonable that research ethical review boards make treatment decisions about individual patients?

Gert Helgesson is well aware of the complexity of the problem and the importance of being careful. Patients must not be used as if they were guinea pigs for clinicians who want to make quick, prestigious discoveries without undergoing proper research ethical review. At the same time, one can do a lot of good for patients by identifying new effective treatments when established treatments do not work. But who should make the decision to test a non-validated treatment if it is unreasonable to leave the decision to a research ethical board?

Gert Helgesson suggests that such decisions on non-validated treatments can reasonably be made by the head of the clinic, and that a procedure for such decisions at the clinic level should exist. For example, an advisory hospital board can be appointed, which supports discussions and decisions at the clinic level about new treatments. The fact that a treatment is non-validated does not mean that there are no empirical and theoretical reasons to believe that it might work. Making a careful assessment of these reasons is an important task in these discussions and decisions.

I hope I have done justice to Gert Helgesson’s balanced discussion of a complex question: What is a reasonable framework for new non-validated treatments? In some last-resort cases where the need for care is urgent, for example, or the disease is rare, decisions about non-validated treatments should be clinical rather than research ethical, concludes Gert Helgesson. The patient must, of course, consent and a careful assessment must be made of the available knowledge about the treatment.

Pär Segerdahl

Written by…

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

Helgesson, G. What is a reasonable framework for new non-validated treatments?. Theor Med Bioeth 41, 239–245 (2020). https://doi.org/10.1007/s11017-020-09537-6

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