Drug addiction as a mental and social disorder

December 4, 2018

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

November 26, 2018

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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International brain initiatives need cultural awareness

November 12, 2018

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

October 30, 2018

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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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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Genetic risk: Should researchers let people know?

September 24, 2018

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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