Clinical cancer trials convey a culture of hope

January 14, 2020

Pär SegerdahlActivities 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

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

December 19, 2019

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

December 11, 2019

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?

July 11, 2019

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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Swedish policymakers on genetic screening before pregnancy

October 17, 2018

Pär SegerdahlSome genetic diseases do not develop in  the child unless both parents happen to have the same gene. Parents can be healthy and unaware that they have the same non-dominant disease gene. In these cases, the risk that their child develops the disease is 25 percent.

Preconception expanded carrier screening could be offered to entire populations, to make everyone who so wishes more informed about their genetic vulnerabilities and better equipped to plan their partner choice and pregnancies. In Sweden, this is not relevant, but the issue could be considered in the future.

In a new article in the Journal of Community Genetics, Amal Matar (PhD student at CRB) reports an interview study with Swedish policymakers: experts at the Swedish National Council on Medical Ethics, at the Swedish Agency for Health Technology Assessment and Assessment of Social Services, and at the National Board of Health and Welfare. Amal Matar wanted to investigate how these influential experts perceive ethical and social aspects of preconception expanded carrier screening, as a new health technology.

It is exciting to get insight into how Swedish policymakers reason about offering genetic screening before pregnancy. They consider alternative financing, prioritization and costs for healthcare. They discuss Sweden as part of the EU. They reflect on what services the healthcare system needs to offer people, depending on what the test results reveal about them. They talk about the need for more research and public engagement, as well as about long-term societal effects.

Questions about responsibility, both parental and societal, struck me as extra interesting. If friends and relatives test themselves, it may seem irresponsible not to do so. Couples can then feel a social pressure to undergo the test, which makes their voluntariness illusory. The experts also saw problems in actively going out looking for disorders in people who are not sick. Society has a responsibility to help people when they are ill, but looking for disease risks in people without symptoms changes the whole evaluation of the risks and benefits of a health technology.

Amal Matar’s conclusion is that Swedish policymakers believe that preconception expanded carrier screening currently is not appropriate in the Swedish healthcare system. The reason commonly used in favor of screening, that it supports well-informed reproductive decision-making, was considered insufficient by the experts if the screening is financed through taxes. They also saw long-term threats to important values ​​in Swedish healthcare.

Pär Segerdahl

Matar, A., Hansson, M.G. and Höglund, A.T. “A perfect society” – Swedish policymakers’ ethical and social views on preconception expanded carrier screening. Journal of Community Genetics, published online 26 September 2018, https://doi.org/10.1007/s12687-018-0389-x

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Supporting clinicians to trust themselves

October 3, 2018

Pär SegerdahlSuppose that you want to learn to speak a language, but the course is overloaded by grammatical terminology. During the lessons, you hardly hear any of the words that belong to the language you want to learn. They drown in technical, grammatical terms. It is as if you had come to a course on general linguistic theory, not German.

When clinicians encounter healthcare ethics as a subject of education, they may have similar experiences. As adult humans they already can feel when everything is alright in a situation. Or when there is a problem; when attention is needed and action must be taken. (We do it every day.) However, to handle the specific challenges that may arise in healthcare, clinicians may need support to further develop this already existing human ability.

Unfortunately, healthcare ethics is typically not presented as development of abilities we already have as human beings. Instead, it is presented as a new subject. Being ethical is presented as having the specific knowledge of this subject. Ethics then seems to be about reasoning in terms of abstract ethical concepts and principles. It is as if you had come to a course on general moral theory, not healthcare ethics. And since most of us do not know a thing about moral theory, we feel ethically stupid and powerless, and lose our self-confidence.

However, just as you don’t need linguistic theory to speak a language, you don’t need moral theory to function ethically. Rather, it is the other way around. It is because we already speak and function ethically that there can be such intellectual activities as grammar and moral theory. Can healthcare ethics be taught without putting the cart before the horse?

A new (free to download) book discusses the issue: Rethinking Health Care Ethics. The book is a lucid critique of healthcare ethics as a specific subject; a critique that naturally leads into constructive suggestions for an alternative pedagogy. The book should be of high interest to teachers in healthcare ethics, to ethicists, and to anyone who finds that ethics often is presented in ways that make us estranged from ourselves.

What most impresses me in this book is its trust in the human. The foundation of ethics is in the human self, not in moral theory. Any adult human already carries ethics in the self, without verbalizing it as specific ethical concepts and principles.

Certainly, clinicians need education in healthcare ethics. But what is specific in the teaching is the unique ethical challenges that may arise in healthcare. Ethics itself is already in place, in the living humans who are entering healthcare as a profession.

Ethics should not be imposed, then, as if it were a new subject. It rather needs support to grow in humans, and to mature for the specific challenges that arise in healthcare.

This trust in the human is unusual. Distrust, feeding the demand for control, is so much more common.

Pär Segerdahl

Scher, S. & Kozlowska, K. 2018. Rethinking Health Care Ethics. Palgrave

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Nurses’ vulnerable position when care and research coincide

September 10, 2018

Pär SegerdahlA new article highlights ethical challenges that nurses face in their profession when more and more clinical trials are conducted on cancer patients.

Nursing alone is stressful. Studies have shown how heavy workload and being pressed for time can cause moral blindness and emotional immunization among nurses. In clinical trials, the situation is even more complicated, due to dual professional roles. The nurses have to accommodate both the values of care and the values of research. Caring for cancer patients coincides with recruiting patients as research participants and coordinating clinical trials on them according to detailed research protocols.

The article by Tove Godskesen et al. describes challenges faced by nurses burdened with this dual professional identity. The most difficult challenges concern cancer patients near the end of life, who no longer respond to the standard therapy. They often hope desperately that research participation will give them access to the next generation of cancer drugs, which may work more efficiently on them. This unrealistic hope creates difficulties for the nurses. They must recruit cancer patients to clinical trials, while the patients often are so terminally ill that they, from a perspective of caring, perhaps rather should be allowed to end their lives in peace and quiet.

An additional complication, next to the heavy workload in nursing and the dual identity as a nurse in the service of research, is that the number of clinical trials increases. There is a political ambition to accelerate the development, to support the Nordic pharmaceutical industry. This means that more and more nurses are engaged to coordinate trials: a task for which they rarely were trained, for which they hardly have time to prepare, and over which they lack power, given their position in the hierarchy of healthcare.

In view of the political ambition to increase the number of clinical trials, there should be a corresponding ambition to support the increasing number of nurses who will have to assume dual professional roles. Godskesen’s study indicates that there is a lack of systematic strategies to handle the situation. Nurses who coordinate trials on patients support each other, to the best of their abilities, over a quick cup of coffee.

Godskesen recommends more strategic training and better support for nurses working with clinical trials. For the nurses’ sake, and not least for the sake of patient safety.

Pär Segerdahl

Tove E. Godskesen, Suzanne Petri, Stefan Eriksson, Arja Halkoaho, Margrete Mangset, Merja Pirinen, Zandra Engelbak Nielsen. 2018. When Nursing Care and Clinical Trials Coincide: A Qualitative Study of the Views of Nordic Oncology and Hematology Nurses on Ethical Work Challenges. Journal of Empirical Research on Human Research Ethics. doi.org/10.1177/1556264618783555

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