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

Year: 2018 (Page 1 of 4)

Dangers of moral words

Pär SegerdahlThe philosopher Bernard Williams distinguished between thick ethical concepts such as “brave” and “brutal,” which have both descriptive and evaluative content, and thin ethical concepts such as “right” and “wrong,” which are purely evaluative. “Murder” and “exploitation” are thick ethical concepts that sometimes play a central role in ethical debate. They have descriptive content combined with a negative evaluation: murder and exploitation are wrong.

This duality of thick moral words, their descriptive/normative Janus face, makes them an impelling part of the vocabulary of most, if not all, ideological movements. If you oppose X, and can demonstrate that X, in fact, involves murder or exploitation (descriptive aspect), then you have immediately demonstrated that X must be opposed (normative aspect). Thick ethical concepts are often used in conflictual situations to legitimize violent actions against people who are described as intriguing, murderous, exploitive, and much else. Since the words are taken to describe reality as it is, such bad individuals must be watched over and, if necessary, acted against.

Thick moral words thus easily lend themselves to functioning as ideological firearms. Their descriptive aspect allows taking aim. Their evaluative aspect says, “Fire!” I want to mention three further dangers of thick ethical concepts.

Dogmatism. The first is that it is difficult to raise questions about their applicability, since it can appear as if you questioned the evaluative component. Let us say that you raise the question if embryo destruction really constitutes murder. In the eyes of those who take this description for reality, you appear like a treacherous person who shrewdly argues that murder might be right! Simply raising the question, no matter how open-mindedly you do it, places you in the firing line. Your very open-mindedness speaks against you: “Murder is not something to be open-minded about!”

Righteousness. A second troublesome feature is that thick ethical concepts produce instant goodness in any ideological movement. Any ideology is on the right side, regardless of which side it is on, since it fights for what its moral vocabulary unites with the good, and fights against what its vocabulary unites with the bad. Any ideology has the right and the duty to act resolutely against what its dualistic vocabulary picks out as impermissible features of reality. – Which side for peace are you on?

Suffering. A third problem is that thick moral words produce suffering in the form of gnawing suspicions and fears. Since we are not omniscient, there is much we do not know, for example, about embryonic stem cell research. Thick ethical concepts here tend to appear in our heads as stand-ins for reality. They appear in the form of an inner voice that tells us what stem cell research is. This is not a purely descriptive “is,” but a double-edged one, for what the voice in the head says the research is can be a nightmarish, “It is murder.” Since we are ignorant of much, but not of our anxiety, we cannot shake off the worrying double-edged concepts that spin in the head. They seem validated by the gnawing anxiety they produce, and we suffer without end, caught in a whirlpool of thick descriptive/normative moral language.

In pointing out dangers of thick moral words, I am not questioning their descriptive or evaluative content. Murder is a reality and it is a serious crime; the same is true of exploitation. I am just pointing out that the dual nature of thick moral words can turn our heads. Moral language can make us violent, dogmatic, righteous, and anxious about issues that perhaps exist mainly in our descriptions of reality.

I think most of us have fallen into such dark pits.

Pär Segerdahl

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Drug addiction as a mental and social disorder

Michele FariscoCan the brain sciences help us to better understand and handle urgent social problems like drug addiction? Can they even help us understand how social disorder creates disorderly, addicted brains?

If, as seems to be the case, addiction has a strong cerebral base, then it follows that knowing the brain is the key to finding effective treatments for addiction. Yet, what aspects of the brain should be particularly investigated? In a recent article, co-authored with the philosopher Kathinka Evers and the neuroscientist Jean-Pierre Changeux, I suggest that we need to focus on both aware and unaware processes in the brain, trying to figure out how these are affected by environmental influences, and how they eventually affect individual behavior.

There is no doubt that drug addiction is one of the most urgent emergencies in contemporary society. Think, for instance, of the opioid crisis in the US. It has become a kind of social plague, affecting millions of people. How was that possible? What are the causes of such a disaster? Of course, several factors contributed to the present crisis. We suggest, however, that certain external factors influenced brain processes on an unaware level, inviting addictive behavior.

To give an example, one of the causes of the opioid crisis seems to be the false assumption that opioid drugs do not cause addiction. Taking this view of opioid drugs was an unfortunate choice, we argue, likely favored by the financial interests of pharmaceutical companies. It affected not only physicians’ aware opinions, but also their unaware views on opioid drugs, and eventually their inclination to prescribe them. But that is not all. Since there is a general disposition to trust medical doctors’ opinions and choices, the original false assumption that opioid drugs do not cause addiction spread and affected also public opinion, especially at the unaware level. In other words, we think that there is a social responsibility for the increase in drug addiction, if not in ethical terms, at least in terms of public policies.

This is just an example of how external factors contribute to a personal disposition to use potentially addictive drugs. Of course, the factors involved in creating addiction are multifarious and not limited to false views about the risk of addiction associated with certain drugs.

More generally, we argue that in addition to the internal bases of addiction in the central nervous system, socio-economic status modulates, through unaware processing, what can be described as a person’s subjective “global well-being,” raising in some individuals the need for additional rewards in the brain. In the light of the impact of external factors, we argue that some people are particularly vulnerable to the pressures of the political and socio-economical capitalistic system, and that this stressful condition, which has both aware and unaware components, is one of the main causes of addiction. For this reason, we conclude that addiction is not only a medical and mental disorder, but also a social disorder.

Michele Farisco

Farisco M, Evers K and Changeux J-P (2018) Drug Addiction: From Neuroscience to Ethics. Front. Psychiatry 9:595. doi: 10.3389/fpsyt.2018.00595

Dissertation on the decision not to resuscitate

Pär SegerdahlSince the beginning of this blog, I have had the opportunity to write about Mona Pettersson’s research, which deals with decisions in cancer care not to resuscitate terminally ill patients through cardiopulmonary resuscitation. The physician makes the decision, if the patient has a too bad prognosis and is too weak to survive the treatment with good quality of life. Or if the patient has expressed a desire to not receive the treatment.

The latest post I published is from August this year: Ethical competence for the decision not to resuscitate. Since then, Mona Pettersson has not only published another article, but also defended her dissertation. In four sub-studies, she examines nurses and physicians’ experiences of the decision not to resuscitate. Among other things, she investigates their understanding of ethical competence as it relates to the decision, as well as what aspects of the decision they consider most important.

If you want to read the entire work, download the dissertation. You can also read more about Mona Pettersson in this Profile.

Pär Segerdahl

Pettersson, M. 2018. COMPETENCE AND COMMUNICATION. Do Not Resuscitate Decisions in Cancer Care. Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine 1499. 62 pp. Uppsala: Acta Universitatis Upsaliensis. ISBN 978-91-513-0459-5.

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Contemplative conversations

Pär SegerdahlWhen we face new sensitive and worrying issues, there is an instinctive reaction: this must be debated! But is debate always the right way, if we want to take human concerns seriously?

That some are worried about new research and technology, is a fact. That others are not worried, is also a fact. Suppose these people handle their differences by debating with each other. What happens?

What happens is that they leave the actual world, which varies as much as people are different, and end up in a universal world of rational reasons. Those who worry must argue for their concerns: All sensible people should feel worried! Those who are not worried must provide weighty counter-arguments: No sensible person should feel worried!

Debate thus creates an either/or conflict from what was only a difference. Polarization increases the fear, which amplifies the desire to be absolutely right. Everyone wants to own the uniquely compelling reason that everyone should obey. But since we are different, the debate becomes a vertiginous hall of mirrors. It multiplies exaggerated world images in which we lose ourselves and each other.

The worry itself, as trembling human fact, is forgotten. The only thing that engages us is the weighty reason for, or against, being worried. The only thing that interests us is what everyone should feel. Is that taking human concerns seriously? Is it taking ourselves seriously?

If a child is worried, we do not ask the child to argue for its worries, and we do not comfort the child by refuting it. We take care of the child; we take care of its worries, as compassionate parents.

I play with the idea that we and our societies would be in better shape if we more often avoided the absolute world of reasons. Through its universality, it appears, of course, like a utopia of peace and unity among rational beings. In fact, it often creates polarization and perplexes us with its exaggerated images of the world. Arguing for the right cause in debate is perhaps not always as noble as we take it to be.

We are, more often than we think, like children. That is, we are human. Therefore, we need, more often than we think, to take care of ourselves. As compassionate parents. That is another instinct, which could characterize conversations about sensitive issues.

We need to take care of ourselves. But how? What is the alternative to debate? For want of better words: contemplative conversations. Or, if you want: considerate conversations. Rather than polarizing, such an open spirit welcomes us all, with our actual differences.

Perhaps that is how we become adults with regard to the task of living well with each other. By tenderly taking care of ourselves as children.

Pär Segerdahl

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International brain initiatives need cultural awareness

Pär SegerdahlToday, billions of research dollars are being invested in developing huge research collaborations about the human brain. Australia, Canada, Japan, Korea and the United States have their own brain initiatives. In Europe, the Human Brain Project has a total budget of around one billion euros over a ten-year period, 2013-2023.

Scientific research is often seen as an activity that transcends cultural differences. However, research about the brain touches such fundamental aspects of human existence that it cannot ignore cultural views. For example, the notion that the brain, as a separate organ, is the locus of human identity, of the self, is not generally embraced. Neuroscientific research touches profound cultural ideas about human life which require careful philosophical and ethical attention.

The international brain initiatives also touch other culturally sensitive issues, in addition to questions about human identity. Ideas about death and brain death, about the use of nonhuman primates in research, about privacy and autonomy, and about mental illness, differ across cultures. For example, a diagnosis that in one culture can be seen as an opportunity to get individual treatment can in another culture threaten to condemn a whole family to social isolation.

Neuroethicists from parts of the world that currently make major investments in neuroscientific research met in Korea to highlight ethical questions on cultural differences, which the international brain initiatives need to address. This in order for the research to be conducted responsibly, with awareness of relevant cultural diversity. The questions that the neuroethicists (among them, Arleen Salles) propose should be addressed are summarized in an article in the journal Neuron.

The authors mention questions about how neuroscientific research could cause stigma in individuals or social groups, and about how cultural notions might bias research design and the interpretation of results. They ask how collecting and storing neural tissue can be viewed in different cultures, and about how we should understand the moral status of robots and computer-simulated brains. They mention questions about how new brain interventions (brain devices and drugs) may affect notions of responsibility and autonomy, as well as issues about drawing boundaries between legitimate and illegitimate uses of neuroscientific techniques. Finally, questions are highlighted about fair access to research results.

How can these questions be addressed and discussed in the international brain initiatives? The authors propose education in neuroethics, as well as dialogue with scholars in the humanities and social sciences, and finally improved communication and interaction with the publics.

Within the European Human Brain Project, four percent of the budget is used for ethics and society. Similar emphasis on ethical reflection would be desirable also in other brain initiatives.

Pär Segerdahl

Global Neuroethics Summit Delegates. 2018. Neuroethics questions to guide ethical research in the international brain initiatives. Neuron 100, October 10, 2018.  https://doi.org/10.1016/j.neuron.2018.09.021

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Patients find misleading information on the internet

Pär SegerdahlIn phase 1 clinical studies of substances that might possibly be used to treat cancer in the future, cancer patients are recruited as research participants. These patients almost always have advanced cancer that no longer responds to the standard treatment.

That research participation would affect the cancer is unlikely. The purpose of a phase 1 study is to determine safe dosage range and to investigate side effects and other safety issues. This will then enable proceeding to investigating the effectiveness of the substance on specific forms of cancer, but with other research participants.

Given that patients often seek online information on clinical trials, Tove Godskesen, Josepine Fernow and Stefan Eriksson wanted to investigate the quality of the information that currently is available on the internet about phase 1 clinical cancer trials in Sweden, Denmark and Norway.

The results they report in the European Journal of Cancer Care are quite alarming. The most serious problem, as I understand it, is that the information conceals risks of serious side effects, and in various ways suggests possible positive treatment outcomes. This lack of accurate language is serious. We are dealing with severely ill patients who easily entertain unrealistic hopes for new treatment options.

To give a picture of the problem, I would like to give a few examples of typical phrases that Godskesen, Fernow and Eriksson found in the information on the internet, as well as their suggestions for more adequate wordings. Noticing the contrast between the linguistic usages is instructive.

One problem is that the information speaks of treatment, even though it is about research participation. Instead of writing “If you are interested in the treatment,” you could write “If you want to participate in the research.” Rather than writing “Patients will be treated with X,” you could write “Participants will be given X.”

The substance being tested is sometimes described as a medicine or therapy. Instead, you can write “You will get a substance called X.”

Another problem is that research participation is described as an advantage and opportunity for the cancer patient. Instead of writing “An advantage of study participation is that…,” one could write “The study might lead to better cancer treatments for future patients.” Rather than writing “This treatment could be an opportunity for you,” which is extremely misleading in phase 1 clinical cancer trials, one could more accurately say, “You can participate in this study.”

The authors also tested the readability of the texts they found on the internet. The Danish website skaccd.org had the best readability scores, followed by the Norwegian site helsenorge.no. The Swedish website cancercenter.se got the worst readability scores. The information was very brief and deemed to require a PhD to be understandable.

It is, of course, intelligible that it is hard to speak intelligibly about such difficult things as cancer trials. Not only do the patients recruited as study participants hope for effective treatment. The whole point of the research is effective cancer treatment. This is the ultimate perspective of the research; the horizon towards which the gaze is turned.

The fact, however, is that this horizon is far removed, far away in the future, and is about other cancer patients than those who participate in phase 1 trials. Therefore, it is important not to let this perspective characterize information to patients in whom hope would be unrealistic.

Do not talk about treatments and opportunities. Just say “You can participate in this study.”

Pär Segerdahl

Godskesen, TE, Fernow J, Eriksson S. Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway. Eur J Cancer Care. 2018;e12937. https://doi.org/10.1111/ecc.12937

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Speaking to 5-year-olds about research (By Sara Frygner-Holm)

How should we talk to children about research? And how should we go about recruiting them to studies? For children to become research participants, their parents must consent. Regulation states children should also give assent themselves, to as great extent as possible. Our ethics committees require us to provide them with age-appropriate information. Health care providers and researchers think the system works well and is ethically “correct.”

From recruiting numerous children for various research projects, I have some thoughts on the subject. I have put together countless information letters for children of various ages; all reviewed and approved by the ethics committee. But what, exactly, is “age-appropriate information”? With support from developmental psychology and some paediatric research, the ambitious paediatric researcher can get it right. On a group level, that is. We can estimate what the average kid of a certain age group understands. But how appropriate is the “age-appropriate” information for individual children? In his poem Till eftertanke, Søren Kirkegard wrote “To help someone, I must indeed understand more than they do, but first and foremost understand what they understand.”

Today, I value a slow and calm recruiting process. I talk to the children about what research is, most 5-year-olds actually have an idea. We speak about what the project is about, and what we want them to contribute. Perhaps we draw or look at pictures. I tell them that it is absolutely fine to change your mind and leave at any time, and that no one will be angry or upset with them if they do. And then we talk some more… Lastly, and most importantly, I ask the child to tell me what we talked about, and what we agreed upon. It takes some time to understand their understanding. Give yourself that time.

Not until I understand that the child has understood do I ask them to sign the consent form.

Sara Frygner-Holm

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Swedish policymakers on genetic screening before pregnancy

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

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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Genetic risk: Should researchers let people know?

Should researchers inform research participants if they happen to discover individual genetic risks of disease? Yes, many would say, if the information is helpful to the participants. However, the value of complex genetic risk information for individuals is uncertain. Jennifer Viberg Johansson suggests that this uncertainty needs to be acknowledged by both geneticists and ethicists.

One reason people want to participate in large genetic studies is the comprehensive health checks researchers often offer to collect data. In the future, people could also be offered information about genetic risks. According to Jennifer Viberg Johansson, there are some factors researchers should consider before offering these kinds of results.

Providing genetic risk information may not be as helpful to individuals as one may think. Knowing your genetic make-up is not the same as knowing your own probability for disease. In addition, the genetic risk information from research is not based on symptoms or personal concerns, as it would be in the healthcare system. It is thus less “personalised” and not connected to any symptoms.

Genetic risk information is complex and can be difficult to understand. To the research participants interviewed by Jennifer Viberg Johansson, risk information is something that offers them an explanation of who they are, where they are from, and where they may be heading. To them, learning about their genetic risk is an opportunity to plan their lives and take precautions to prevent disease.

Whether research participants want genetic risk information or not is more complex. Research participants themselves may change their answer depending on the way the question is asked. Risk research shows that we interpret probabilities differently, depending on the outcome and consequences. Jennifer Viberg Johansson’s work points in the same direction: probability is not an essential component of people’s decision-making when there are ways to prevent disease.

People have difficulties making sense of genetic risk when it is presented in the traditional numeric sense. It is hard to interpret what it means to have a 10 per cent or 50 per cent risk of disease. Instead, we interpret genetic risk as a binary concept: you either have risk, or you don’t. Based on her results, Jennifer Viberg Johansson suggests we keep this in mind for genetic counselling. We need to tailor counselling to people’s often binary perceptions of risk.

Communicating risk is difficult, and requires genetic counsellors to understand how different people understand the same figures in different ways.

Jennifer Viberg Johansson defended her dissertation September 21, 2018.

Anna Holm

Viberg Johansson J., (2018), INDIVIDUAL GENETIC RESEARCH RESULTS – Uncertainties, Conceptions, and Preferences, Uppsala: Acta Universitatis Upsaliensis

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