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

Category: In the profession (Page 1 of 3)

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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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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Patient integrity at the end of life

When we talk about patient integrity, we often talk about the patients’ medical records and the handling of their personal data. But patient integrity is not just about how information about patients is handled, but also about how the patients themselves are treated. For example, can they tell about their problems without everyone in the waiting room hearing them?

This more real aspect of patient integrity is perhaps extra challenging in an intensive care unit. Here, patients can be more or less sedated and connected to life-sustaining equipment. The patients are extremely vulnerable, in some cases dying. It can be difficult to see the human being for all the medical devices. Protecting the integrity of these patients is a challenge, not least for the nurses, who have close contact with them around the clock (and with the relatives). How do nurses perceive and manage the integrity of patients who end their lives in an intensive care unit?

This important question is examined in an article in the journal Annals of Intensive Care, written by Lena Palmryd, Åsa Rejnö and Tove Godskesen. They conducted an interview study with nurses in four intensive care units in Sweden. Many of the nurses had difficulty defining integrity and explaining what the concept means in the care of dying patients. This is not surprising. Not even the philosopher Socrates would have succeeded in defining integrity. However, the nurses used other words that emphasised respect for the patient and patient-centred attitudes, such as being listening and sensitive to the patient. They also tried to describe good care.

When I read the article, I was struck by how ethically central concepts, such as integrity and autonomy, often obscure reality and paralyse us. Just when we need to see clearly and act wisely. When the authors of the article analyse the interviews with the nurses, they use five categories instead, which in my opinion speak more clearly than the overall concept of integrity does:

  1. Seeing the unique individual
  2. Being sensitive to the patient’s vulnerability
  3. Observing the patient’s physical and mental sphere
  4. Taking into account the patient’s religion and culture
  5. Being respectful during patient encounters

How transparent to reality these words are! They let us see what it is about. Of course, it is not wrong to talk about integrity and it is no coincidence that these categories emerged in the analysis of the conversations with the nurses about integrity. However, sometimes it is perhaps better to refrain from ethically central concepts, because such concepts often hide more than they reveal.

The presentation of the interviews under these five headings, with well-chosen quotes from the conversations, is even more clarifying. This shows the value of qualitative research. In interview studies, reality is revealed through people’s own words. Strangely enough, such words can help us to see reality more clearly than the technical concepts that the specialists in the field consider to be the core of the matter. Under heading (2), for example, a nurse tells of a patient who suffered from hallucinations, and who became anxious when people showed up that the patient did not recognize. One evening, the doctors came in with 15 people from the staff, to provide staff with a report at the patient’s bedside: “So I also drove them all out; it’s forbidden, 15 people can’t stand there, for the sake of the patient.” These words are as clarifying as the action itself is.

I do not think that the nurse who drove out the crowd for the sake of the patient thought that she was doing it “to protect the patient’s integrity.” Ethically weighty concepts can divert our attention, as if they were of greater importance than the actual human being. Talking about patient integrity can, oddly enough, make us blind to the patient.

Perhaps that is why many of Socrates’ conversations about concepts end in silence instead of in definitions. Should we define silence as an ethical concept? Should we arrange training where we have the opportunity to talk more about silence? The instinct to control reality by making concepts of it diverts attention from reality.

Read the qualitative study of patients’ integrity at the end of life, which draws attention to what it really is about.

Pär Segerdahl

Written by…

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

Palmryd, L., Rejnö, Å. & Godskesen, T.E. Integrity at end of life in the intensive care unit: a qualitative study of nurses’ views. Ann. Intensive Care 11, 23 (2021). https://doi.org/10.1186/s13613-021-00802-y

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Ethical frameworks for research

The word ethical framework evokes the idea of ​​something rigid and separating, like the fence around the garden. The research that emerges within the framework is dynamic and constantly new. However, to ensure safety, it is placed in an ethical framework that sets clear boundaries for what researchers are allowed to do in their work.

That this is an oversimplified picture is clear after reading an inventive discussion of ethical frameworks in neuroscientific research projects, such as the Human Brain Project. The article is written by Arleen Salles and Michele Farisco at CRB and is published in AJOB Neuroscience.

The article questions not only the image of ethical frameworks as static boundaries for dynamic research activities. Inspired by ideas within so-called responsible research and innovation (RRI), the image that research can be separated from ethics and society is also questioned.

Researchers tend to regard research as their own concern. However, there are tendencies towards increasing collaboration not only across disciplinary boundaries, but also with stakeholders such as patients, industry and various forms of extra-scientific expertise. These tendencies make research an increasingly dispersed, common concern. Not only in retrospect in the form of applications, which presupposes that the research effort can be separated, but already when research is initiated, planned and carried out.

This could sound threatening, as if foreign powers were influencing the free search for truth. Nevertheless, there may also be something hopeful in the development. To see the hopeful aspect, however, we need to free ourselves from the image of ethical frameworks as static boundaries, separate from dynamic research.

With examples from the Human Brain Project, Arleen Salles and Michele Farisco try to show how ethical challenges in neuroscience projects cannot always be controlled in advance, through declared principles, values ​​and guidelines. Even ethical work is dynamic and requires living intelligent attention. The authors also try to show how ethical attention reaches all he way into the neuroscientific issues, concepts and working conditions.

When research on the human brain is not aware of its own cultural and societal conditions, but takes them for granted, it may mean that relevant questions are not asked and that research results do not always have the validity that one assumes they have.

We thus have good reasons to see ethical and societal reflections as living parts of neuroscience, rather than as rigid frameworks around it.

Pär Segerdahl

Written by…

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

Arleen Salles & Michele Farisco (2020) Of Ethical Frameworks and Neuroethics in Big Neuroscience Projects: A View from the HBP, AJOB Neuroscience, 11:3, 167-175, DOI: 10.1080/21507740.2020.1778116

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

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

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

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

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

Pär Segerdahl

Written by…

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

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

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Responsibly planned research communication

Academic research is driven by dissemination of results to peers at conferences and through publication in scientific journals. However, research results belong not only to the research community. They also belong to society. Therefore, results should reach not only your colleagues in the field or the specialists in adjacent fields. They should also reach outside the academy.

Who is out there? A homogeneous public? No, it is not that simple. Communicating research is not two activities: first communicating the science to peers and then telling the popular scientific story to the public. Outside the academy, we find engineers, entrepreneurs, politicians, government officials, teachers, students, research funders, taxpayers, healthcare professionals… We are all out there with our different experiences, functions and skills.

Research communication is therefore a strategically more complicated task than just “reaching the public.” Why do you want to communicate your results; why are they important? Who will find your results important? How do you want to communicate them? When is the best time to communicate? There is not just one task here. You have to think through what the task is in each particular case. For the task varies with the answers to these questions. Only when you can think strategically about the task can you communicate research responsibly.

Josepine Fernow is a skilled and experienced research communications officer at CRB. She works with communication in several research projects, including the Human Brain Project and STARBIOS2. In the latter project, about Responsible Research and Innovation (RRI), she contributes in a new book with arguments for responsibly planned research communication: Achieving impact: some arguments for designing a communications strategy.

Josepine Fernow’s contribution is, in my view, more than a convincing argument. It is an eye-opening text that helps researchers see more clearly their diverse relationships to society, and thereby their responsibilities. The academy is not a rock of knowledge in a sea of ​​ignorant lay people. Society consists of experienced people who, because of what they know, can benefit from your research. It is easier to think strategically about research communication when you survey your relations to a diversified society that is already knowledgeable. Josepine Fernow’s argumentation helps and motivates you to do that.

Josepine Fernow also warns against exaggerating the significance of your results. Bioscience has potential to give us effective treatments for serious diseases, new crops that meet specific demands, and much more. Since we are all potential beneficiaries of such research, as future patients and consumers, we may want to believe the excessively wishful stories that some excessively ambitious researchers want to tell. We participate in a dangerous game of increasingly unrealistic hopes.

The name of this dangerous game is hype. Research hype can make it difficult for you to continue your research in the future, because of eroded trust. It can also make you prone to take unethical shortcuts. The “huge potential benefit” obscures your judgment as a responsible researcher.

In some research fields, it is extra difficult to avoid research hype, as exaggerated hopes seem inscribed in the very language of the field. An example is artificial intelligence (AI), where the use of psychological and neuroscientific vocabulary about machines can create the impression that one has already fulfilled the hopes. Anthropomorphic language can make it sound as if some machines already thought like humans and functioned like brains.

Responsible research communication is as important as difficult. Therefore, these tasks deserve our greatest attention. Read Josepine Fernow’s argumentation for carefully planned communication strategies. It will help you see more clearly your responsibility.

Finally, a reminder for those interested: the STARBIOS2 project organizes its final event via Zoom on Friday, May 29, 2020.

Pär Segerdahl

Written by…

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

Fernow, J. (2019). Note #11: Achieving impact: Some arguments for designing a communications strategy, In A. Declich (Ed.), RRI implementation in bioscience organisations: Guidelines from the STARBIOS2 project, (pp. 177-180). Uppsala University. ISBN: 978-91-506-2811-1

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Clinical cancer trials convey a culture of hope

Activities that we may want to keep apart often overlap. An example is cancer research and care. Clinical cancer centers often conduct research and recruit patients as research participants. Such research is important if we want to offer future patients better cancer treatments. However, does this also apply to patients participating in studies? Are they offered better care as research participants?

Together with five co-authors, Tove Godskesen recently published an interview study with clinical physicians carrying out clinical cancer trials in Sweden, Denmark and Finland. The questions were about what ethical challenges the physicians perceived in the care of patients who participate in clinical trials. Does the overlap of care and research create ethical challenges? Although several physicians mentioned challenges, there were tendencies to downplay ethical difficulties and to associate the overlap between research and care with care benefit.

Tove Godskesen sees indications of a culture of hope in clinical cancer trials, where patients and physicians reinforce the image of research participation as an opportunity to access the latest therapy. However, uncertain patients can challenge the picture by asking the physician to affirm that the experimental treatment is as good as the standard treatment. You do not know that. That is why you are doing research!

The authors do not make any claims about whether a culture of hope in clinical cancer trials is good or not. However, they believe that the culture needs to become visible and discussed openly. So that the ethical challenges when care and research overlap do not disappear from sight.

The culture of hope has several aspects that you can read more about in the article. For example, the attitude that it is better to avoid giving patients bad news.

Pär Segerdahl

Written by…

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

Tove E Godskesen, Suzanne Petri, Stefan Eriksson, Arja Halkoaho, Margrete Mangset and Zandra E Nielsen. The culture of hope and ethical challenges in clinical trials: A qualitative study of oncologists and haematologists’ views. Clinical Ethics. First Published December 30, 2019. https://doi.org/10.1177/1477750919897379

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Christmas blog post about contemplation and wide horizons

Pär SegerdahlWhat does it mean to be contemplative? In a conversation, the philosopher Ludwig Wittgenstein addresses the issue through a contrast: professional racing motorists. A successful racing driver has one goal in mind: to break the speed record. It is not wrong to have such a well-specified goal. It is required if you want to be a professional racing motorist. However, the attitude encapsulates the mind. Any questions that do not take you closer to the goal become irrelevant. Imagine the driver discussing improvements to the carburetor with the mechanics. How would the atmosphere in the garage change if an inquisitive Socrates suddenly appeared and quietly wondered about the meaning of the sport? Endless questions without the slightest relevance to the adjustments of the carburetor! A racing motorist who wants to be the world champion cannot stop and contemplate different possibilities for human sports competition. Above all, not the possibility of a world where no one tries to break speed records. Who is this crazy fellow? Socrates must leave the garage.

As I said, there is nothing wrong with the racing motorist’s attitude; it is natural and often unavoidable. It has the dynamics of joy (and that of frustration). However, when it becomes too dominant, it restricts something else: the openness to the unknown, the sense of the unexpected. Big questions without given answers are seen as obscure, irrelevant and perhaps even dangerous, as they lack competitive edge and reduce the speed. The carburetor adjustments must be prioritized. Life as a competition must never vanish from sight. It could jeopardize the team spirit and the competitive advantages. If we discussed too many big and thought-provoking issues together as a society, it could even seduce the youth. The new generation loses the momentum that society needs. Young individuals are distracted from identifying with the specific goals that successful careers require. Socrates must leave society.

To think freely, is it nothing but useless folly? Small and large, useful and useless, are two themes that run through one of the great books of Chinese philosophy, Chuang Tzu. The book begins with a story about a huge fish, which soon turns into a huge bird, both so incredibly big that one would like to say that they exceed all dimensions. The huge bird is contrasted with two smaller creatures, a cicada and a dove, who simply cannot understand the big one. The bird almost merges with heaven itself. Can it even be called a bird, when it never flies from bush to bush? The small creatures cannot grasp the great bird. It lacks boundaries, like Socrates’ endless questioning. A related theme in Chuang Tzu is the usefulness of the useless. The book contains several stories of knotty and smelly trees, which, because of their uselessness for human purposes, are left free to grow big. “Everyone knows the usefulness of the useful,” writes Chuang Tzu, “but no one knows the usefulness of the useless.” Who reads Chuang Tzu in today’s China?

Perhaps we can say that Chuang Tzu develops contemplation and self-examination so far, that the self loses its boundaries and becomes one with heaven, just like the big bird. The wisdom that we can hear in Chuang Tzu is open to the infinite. Its boundlessness cannot be defined by teachings, doctrines or theories. It cannot be encapsulated in a philosophy or a religion. “To use what has a boundary to pursue what is limitless is dangerous,” warns Chuang Tzu. Dogmatism is as ancient as the wisdom that opens us to the unknown. In short, the boundless surpasses any doctrine about “the boundless.” If we dare to live with such wide horizons, we may understand voices like this one, “Plunge into the unknown and the endless and find your place there!” Totally useless words, which therefore can be useful in times that only understand the usefulness of the useful.

When philosophies and religions are defined so narrowly that they virtually function as cultural norms or party programs, they inhibit the freedom that was the point of the infinite, which we sought in its uselessness. When the search instead questions everything that restricts the mind, the contemplative endeavor can free the self from its encapsulation: the inner condition of lack of freedom.

Could this enable a humanity where people do not assert their personal interests against others? Without boundaries around the self, there is no one else to outcompete. Is there even an exploitable environment to pollute? We would let the world (and each other) be. However, such unequalled harmony cannot be defined as a goal without once again limiting freedom and making us encapsulated beings such as the cicada and the dove. “The understanding of the small cannot be compared to the understanding of the great.”

Is this happy news or is it just useless folly?

Pär Segerdahl

The Book of Chuang Tzu. (Translated by Martin Palmer.) Penguin Books, 1996

Ludwig Wittgenstein, Rush Rhees, Gabriel Citron, (ed.). 2015. Wittgenstein’s Philosophical Conversations with Rush Rhees (1939–50): From the Notes of Rush Rhees. Mind 124: 1–71.

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Communicating thought provoking research in our common language

Pär SegerdahlAfter having been the editor of the Ethics Blog for eight years, I would like to describe the research communication that usually occurs on this blog.

The Ethics Blog wants to avoid the popular scientific style that sometimes occurs in the media, which reports research results on the form, “We have traditionally believed that…, but a recent scientific study shows that…” This is partly because the Ethics Blog is run by a research center in ethics, CRB. Although ethics may involve empirical studies (for example, interviews and surveys), it is not least a matter of thinking. If you, as an ethicist, want to develop new recommendations on informed consent, you must think clearly and thoroughly. However, no matter how rigorously you think, you can never say, “We have traditionally believed that it is ethically important to inform patients about…, but recent philosophical thoughts show that we should avoid doing that.”

Thinking does not provide the authority that empirical research gives. As an ethicist or a philosopher, I cannot report my conclusions as if they were research results. Nor can I invoke “recent thoughts” as evidence. Thoughts give no evidence. Ethicists therefore present their entire thinking on different issues to the critical gaze of readers. They present their conclusions as open suggestions to the reader: “Here is how I honestly think about this issue, can you see it that way too?”

The Ethics Blog therefore avoids merely disseminating research results. Of course, it informs about new findings, but it emphasizes their thought provoking aspects. It chooses to reflect on what is worth thinking about in the research. This allows research communication to work more on equal terms with the reader, since the author and the reader meet in thinking about aspects that make both wonder. Moreover, since each post tries to stand on its own, without invoking intellectual authority (“the ethicists’ most recent thoughts show that…”), the reader can easily question the blogger’s attempts to think independently.

In short: By communicating research in a philosophical spirit, science can meet people on more equal terms than when they are informed about “recent scientific findings.” By focusing on the thought provoking aspects of the research, research communication can avoid a patronizing attitude to the reader. At least that is the ambition of the Ethics Blog.

Another aspect of the research communication at CRB, also beyond the Ethics Blog, is that we want to use our ordinary language as far as possible. Achieving a simple style of writing, however, is not easy! Why are we making this effort, which is almost doomed to fail when it comes to communicating academic research? Why do Anna Holm, Josepine Fernow and I try to communicate research without using strange words?

Of course, we have reflected on our use of language. Not only do we want to reach many different groups: the public, patients and their relatives, healthcare staff, policy makers, researchers, geneticists and more. We also want these groups to understand each other a little better. Our common language accommodates more human agreement than we usually believe.

Moreover, ethics research often highlights the difficulties that different groups have in understanding each other. It can be about patients’ difficulties in understanding genetic risk information, or about geneticists’ difficulties in understanding how patients think about genetic risk. It may be about cancer patients’ difficulties in understanding what it means to participate in clinical trials, or about cancer researchers’ difficulties in understanding how patients think.

If ethics identifies our human difficulties in understanding each other as important ethical problems, then research communication will have a particular responsibility for clarifying things. Otherwise, research communication risks creating more communication difficulties, in addition to those identified by ethics! Ethics itself would become a communication problem. We therefore want to write as clearly and simply as we can, to reach the groups that according to the ethicists often fail to reach each other.

We hope that our communication on thought provoking aspects of ethics research stimulates readers to think for themselves about ethical issues. Everyone can wonder. Non-understanding is actually a source of wisdom, if we dare to admit it.

Pär Segerdahl

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How can we set future ethical standards for ICT, Big Data, AI and robotics?

josepine-fernow-siennaDo you use Google Maps to navigate in a new city? Ask Siri, Alexa or OK Google to play your favourite song? To help you find something on Amazon? To read a text message from a friend while you are driving your car? Perhaps your car is fitted with a semi-autonomous adaptive cruise control system… If any software or machine is going to perform in any autonomous way, it needs to collect data. About you, where you are going, what songs you like, your shopping habits, who your friends are and what you talk about. This begs the question:  are we willing to give up part of our privacy and personal liberty to enjoy the benefits technology offers.

It is difficult to predict the consequences of developing and using new technology. Policymakers struggle to assess the ethical, legal and human rights impacts of using different kinds of IT systems. In research, in industry and our homes. Good policy should be helpful for everyone that holds a stake. We might want it to protect ethical values and human rights, make research and development possible, allow technology transfer from academia to industry, make sure both large and smaller companies can develop their business, and make sure that there is social acceptance for technological development.

The European Union is serious about developing policy on the basis of sound research, rigorous empirical data and wide stakeholder consultation. In recent years, the Horizon2020 programme has invested € 10 million in three projects looking at the ethics and human rights implications of emerging digital technologies: PANELFIT, SHERPA and SIENNA.

The first project, PANELFIT (which is short for Participatory Approaches to a New Ethical and Legal Framework for ICT), will develop guidelines on the ethical and legal issues of ICT research and innovation. The second, SHERPA (stands for Shaping the ethical dimensions of Smart Information Systems (SIS) – A European Perspective), will develop tools to identify and address the ethical dimensions of smart information systems (SIS), which is the combination of artificial intelligence (AI) and big data analytics. SIENNA (short for Stakeholder-informed ethics for new technologies with high socio-economic and human rights impact), will develop research ethics protocols, professional ethical codes, and better ethical and legal frameworks for AI and robotics, human enhancement technologies, and human genomics.

SSP-graphic

All three projects involve experts, publics and stakeholders to co-create outputs, in different ways. They also support the European Union’s vision of Responsible Research and Innovation (RRI). SIENNA, SHERPA and PANELFIT recently published an editorial in the Orbit Journal, inviting stakeholders and publics to engage with the projects and contribute to the work.

Want to read more? Rowena Rodrigues and Anaïs Resseguier have written about some of the issues raised by the use of artificial intelligence on Ethics Dialogues (The underdog in the AI and ethical debate: human autonomy), and you can find out more about the SIENNA project in a previous post on the Ethics Blog (Ethics, human rights and responsible innovation).

Want to know more about the collaboration between SIENNA, SHERPA and PANELFIT? Read the editorial in Orbit (Setting future ethical standards for ICT, Big Data, AI and robotics: The contribution of three European Projects), or watch a video from our joint webinar on May 20, 2019 on YouTube (SIENNA, SHERPA, PANELFIT: Setting future ethical standards for ICT, Big Data, SIS, AI & Robotics).

Want to know how SIENNA views the ethical impacts of AI and robotics? Download infographic (pdf) and read our state-of-the-art review for AI & robotics (deliverable report).

AI-robotics-ifographic

Josepine Fernow

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