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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Ethical competence for the decision not to resuscitate

August 28, 2018

Pär SegerdahlSometimes, physicians have to decide that a cancer patient has such a poor prognosis that he or she should not be resuscitated through cardiopulmonary rescue, if discovered with cardiac arrest. The procedure is violent and would in these cases cause unnecessary suffering.

The situation is stressful for the healthcare team no matter which decision is taken. Providing violent cardiopulmonary rescue to a terminally ill cancer patient can be perceived as poor care at the end of life. At the same time, one wishes of course to treat the patient, so the decision to not resuscitate can be stressful, too. The decision requires ethical competence.

Mona Pettersson, PhD student at CRB, examines in her dissertation the decision not to resuscitate patients in the fields of oncology and hematology. In an article in BMC Medical Ethics, she describes physicians and nurses’ reflections on ethical competence in relation to the decision not to resuscitate. Even if the physician takes the decision, the nurses are involved in the highest degree. They have responsibility for the care of the patient and of the relatives.

The ethical difficulties concern not just the decision itself. The difficulties also concern how patients and relatives are informed about the decision, as well as how the entire healthcare team is informed, involved and functions. What competence is required to ethically handle this care decision? How can such ethical competence be supported?

According to Pettersson, ethical competence involves both personal qualities and knowledge, as well as ability to reflect on how decisions best are made and implemented. In practice, all this interacts. For example, a physician may have knowledge that the patient should be informed about the decision not to resuscitate. At the same time, after reflection, the physician may choose not to inform, or choose to inform the patient using other words.

The physicians and nurses in Mona Pettersson’s study expressed that their ethical competence would be supported by greater opportunities for reflection and discussion of ethics near the end of life within oncology and hematology. This is because healthcare is always situated. The ethical difficulties have a definite context. Healthcare professionals are not ethically competent in general. Their ethical competence is linked to their specific professional practices, which moreover differ for physicians and nurses.

If you want to read more about Mona Pettersson’s dissertation, please read the presentation of her at CRB’s website: Healthcare, ethics and resuscitation.

Pär Segerdahl

Pettersson, M., Hedström. M and Höglund, A. T. Ethical competence in DNR decisions – a qualitative study of Swedish physicians and nurses working in hematology and oncology care. BMC Medical Ethics (2018) 19:63. htdoi.org/10.1186/s12910-018-0300-7

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Commercialization, but not at any price

February 14, 2017

Pär SegerdahlIn a previous post, I tried to make the point that the pharmaceutical industry can support altruism between research participants and patients, despite the fact that the industry itself is not altruistic but is driven by profit. Medical research will not benefit patients, unless results are developed into commercially available treatments.

However, this presupposes, of course, that pricing is reasonable, so that we can actually afford the drugs. Otherwise, research and research participation become meaningless.

Today, I just want to recommend an article in the journal Cell, where the authors argue that the prices of new cancer drugs have become indefensibly high. They propose new collaborations between academic researchers and small companies, to offer cancer drugs at more reasonable prices. Researchers should ensure that the companies they work together with are willing to sell the drugs with smaller profit margins.

You can find a summary of these ideas in The Guardian.

Pär Segerdahl

Workman, P. Draetta, G. F., Schellens, J. H. M., Bernards, R. (2017). How much longer will we put up with $100,000 cancer drugs? Cell 168: 579-583.

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