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

Author: Pär Segerdahl (Page 1 of 36)

Data sharing in genomics: proposal for an international Code of Conduct

In genomics, not only individual genes are studied, but the entire genome. Such studies handle and analyse large amounts of data and are becoming increasingly common internationally. One of the challenges is managing the sharing of data between countries around the world. In addition to data protection legislation varying internationally, there are concerns that researchers and research participants from low- and middle-income countries may be exploited or disadvantaged in these exchanges.

Lawyers and bioethicists have therefore called for an international Code of Conduct for data sharing in genomics. A proposal for such a code was recently published in an article in Developing World Bioethics. The article, written by Amal Matar and nine co-authors, describes the process of developing the Code of Conduct and concludes with a nearly 4-page proposal.

The Code of Conduct is intended for researchers and other actors responsible for data management in international genomic research. The code lists ten ethical principles of direct relevance to data sharing. Next, best practices are described in 23 Articles covering seven areas: Data governance system; Data collection; Data storage; Data sharing, transfer and access; Compelled disclosure; Data handling from low- and middle-income countries; Public and community engagement.

Read the article with the proposal for a Code of Conduct here: A proposal for an international Code of Conduct for data sharing in genomics.

Pär Segerdahl

Written by…

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

Matar, A., Hansson, M., Slokenberga, S., Panagiotopoulos, A., Chassang, G., Tzortzatou, O., Pormeister, K., Uhlin, E., Cardone, A., & Beauvais, M. (2022). A proposal for an international Code of Conduct for data sharing in genomics. Developing World Bioethics, 1– 14. https://doi.org/10.1111/dewb.12381

This post in Swedish

We recommend readings

Patient views on treatment of Parkinson’s disease with embryonic stem cells

Stem cells taken from human embryos very early after fertilization can be grown as embryonic stem cell lines. These embryonic stem cells are called pluripotent, as they can differentiate into virtually all of the body’s cell types (without being able to develop into an individual). The medical interest in embryonic stem cells is related to the possibility of using them to regenerate damaged tissue. One disease one hopes to be able to develop stem cell treatment for is Parkinson’s disease.

In Sweden, it is permitted to use leftover donated embryos from IVF treatment for research purposes. However, not to produce medical products. The path towards possible future treatments is lined with legal and ethical uncertainties. In addition, the moral status of the embryo has been debated for a very long time, without any consensus on the matter being reached.

In this situation, studies of people’s perceptions of the use of human embryonic stem cells for the development of medical treatments become urgent. Recently, the first study of the perceptions of patients, the group that can become recipients, was published. It is an interview study with seventeen patients in Sweden who have Parkinson’s disease. Author is Jennifer Drevin along with six co-authors.

The interviewees were generally positive about using human embryonic stem cells to treat Parkinson’s disease. They did not regard the embryo as a life with human rights, but at the same time they saw the embryo as something special. It was considered that the embryo has great value for the couple who want to become parents and emphasized the importance of the woman’s or the couple’s free and informed consent to donation. As patients, they expressed interest in a treatment that did not limit everyday life through, for example, complicated daily medication. They were interested in better cognitive and communicative abilities and wanted to be more independent: not having to ask family members for support in everyday tasks. The effectiveness of the treatment was considered important and there was concern that stem cell treatment might not be effective enough, or have side effects.

Furthermore, concerns were expressed that donors could be exploited, for example poor and vulnerable groups, and that financial compensation could have negative effects. Allowing donation only of leftover embryos from IVF treatment was considered reassuring, as the main purpose would not be to make money. Finally, there was concern that the pharmaceutical industry would not always prioritize the patient over profit and that expensive stem cell treatments could lead to societal and global injustices. Suspicions that companies will not use embryos ethically were expressed, and some felt that it was more problematic to make a profit on products from embryos than on other medical products. Transparency around the process of developing and using medical stem cell products was considered important.

If you want to see more results, read the study here: Patients’ views on using human embryonic stem cells to treat Parkinson’s disease: an interview study.

It can be difficult to draw general conclusions from the study and the summary above reproduces some of the statements in the interviews. We should, among other things, keep in mind that the interviews were conducted with a small number of patients who themselves have the disease and that the study was conducted in Sweden. The authors emphasize that the study can help clinicians and researchers develop treatments in ways that take into account patients’ needs and concerns. A better understanding of people’s attitudes can also contribute to the public debate and support the development of policy and legislation.

Pär Segerdahl

Written by…

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

Drevin, J., Nyholm, D., Widner, H. et al. Patients’ views on using human embryonic stem cells to treat Parkinson’s disease: an interview study. BMC Med Ethics 23, 102 (2022). https://doi.org/10.1186/s12910-022-00840-6

This post in Swedish

In dialogue with patients

A charming idea about consciousness

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

Written by…

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

This post in Swedish

We like critical thinking

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

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

This post in Swedish

Ethics needs empirical input

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

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

This post in Swedish

Approaching future issues

Does the brain make room for free will?

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.

This post in Swedish

We like challenging questions

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

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

This post in Swedish

We recommend readings

Dignity in a nursing home when the body fails

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

This post in Swedish

Ethics needs empirical input

Self-confidence in the midst of uncertainty

Feeling confident is natural when we have the knowledge that the task requires. However, self-confidence can be harmful if we think that we know what we do not know. It can be really problematic if we make a habit of pretending that we know. Perhaps because we demand it of ourselves.

There is also another kind of self-confidence, which can seem unnatural. I am thinking of a rarely noticed form of self-confidence, which can awaken just when we are uncertain about how to think and act. But how can self-confidence arise precisely when we are uncertain? It sounds not only unnatural, but also illogical. And was it not harmful to exhibit self-confidence in such situations?

I am thinking of the self-confidence to be just as uncertain as we are, because our uncertainty is a fact that we are certain of: I do not know. It is easy to overlook the fact that even uncertainty is a reality that can be ascertained and investigated in ourselves. Sometimes it is important to take note of our uncertainty. That is sticking to the facts too!

What happens if we do not trust uncertainty when we are uncertain? I think we then tend to seek guidance from others, who seem to know what we do not know. It seems not only natural, but also logical. It is reasonable to do so, of course, if relevant knowledge really exists elsewhere. Asking others, who can be judged to know better, also requires a significant measure of self-confidence and good judgment, in the midst of uncertainty.

But suppose we instinctively seek guidance from others as soon as we are uncertain, because we do not dare to stick to uncertainty in such moments. What happens if we always run away from uncertainty, without stopping and paying attention to it, as if uncertainty were something impermissible? In such a judgmental attitude to uncertainty, knowledge and certainty can become a demand that we feel must be met, towards ourselves and towards each other, if only as a facade. We are then back where we started, in pretended knowledge, which now might become a collective high-risk game and not just an individual bad habit.

Collective knowledge games can of course work, if sufficiently many influential players have the knowledge that the tasks require and knowledge is disseminated in a well-organized manner. Maybe we think that it should be possible to build such a society, a secure knowledge society. The question I wonder about is how sustainable this is in the long run, if the emphasis on certainty does not simultaneously emphasize also uncertainty and questioning. Not for the sake of questioning, but because uncertainty is also a fact that needs attention.

In philosophy and ethics, it is often uncertainty that primarily drives the work. This may sound strange, but even uncertainty can be investigated. If we ask a tentative question about something we sincerely wonder about, clearer questions can soon arise that we continue to wonder about, and soon the investigation will begin. The investigation comes to life because we dare to trust ourselves, because we dare to give ourselves time to think, in the midst of uncertainty, which can become clarity if we do not run away from it. In the investigation, we can of course notice that we need more knowledge about specific issues, knowledge that is acquired from others or that we ourselves develop through empirical studies. But it is not only specific knowledge that informs the investigation. The work with the questions that express our uncertainty clarifies ourselves and makes our thinking clearer. Knowledge gets a well-considered context, where it is needed, which enlightens knowledge.

A “pure” game of knowledge is hardly sustainable in the long run, if its demands are not open also to the other side of knowledge, to the uncertainty that can be difficult to separate from ourselves. Such openness requires that we trust not only the rules of the game, but also ourselves. But do we dare to trust ourselves when we are uncertain?

I think we dare, if we see uncertainty as a fact that can be investigated and clarified, instead of judging it as something dangerous that should not be allowed to be a fact. That is when it can become dangerous.

Pär Segerdahl

Written by…

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

This post in Swedish

Thinking about thinking

Safeguards when biobank research complies with the General Data Protection Regulation

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

We recommend readings

« Older posts