Neuroethics goes global

February 12, 2019

The complicated meaning, powerful assumptions, and boundless hopes about what can be revealed through neuroscience have made this discipline a national funding priority around the globe. A growing cohort of large-scale brain research initiatives aim to unravel the mysteries of the basis of feelings, thinking, and ultimately the mind. Questions formerly in the domain of the philosophical world have become part and parcel to neuroscience.

Just as science has so clearly become a global enterprise, ethics must keep pace. Cultural misunderstandings have nontrivial consequences for the scientific enterprise. Gaps in understanding negatively impact opportunities for collaboration and sharing, ultimately slowing scientific advancement. Too narrow of a view on science can limit our ability to reap the benefits of discoveries and, perhaps most damning for science, can result in a failure to anticipate and recognize the full consequences and risks of research.

To date, neuroethics discussions have been dominated by Western influences. However, the rapid neuroscientific development in East Asia in particular and the not-so-gradual relocation of a number of cutting-edge research projects from the West to East Asia, has made it clear that exploration and understanding of the ethics and cultural values informing research will be critical in engaging science as a collaborative global enterprise.

The Neuroethics Workgroup of the International Brain Initiative is comprised of members of each of the existing and emerging large-scale brain research initiatives. Leveraging the fellowship of the IBI and using an intentional culturally aware approach to guide its work, the Neuroethics Workgroup completes rapid deliverables in the near (within one year) and short-term (within two years).

With the inaugural 2017 summit, leading scientists, ethicists, and humanist co-created a universal list of neuroethics questions, Neuroethics Questions for Neuroscientists (NeQN) that should be addressed by scientists in each brain project. These NeQN were published in Neuron in 2018 and can be found here.

The neuroethics questions themselves were not necessarily unfamiliar neuroethics questions; however, these NEQN were designed to be adapted and informed by the cultural values and frameworks of each country.

The 2018 meeting served as a workshop, where each of the brain projects discussed why and how they will integrate neuroethics into their brain projects with particular recognition of the five questions from the 2018 Neuroethics Questions for Neuroscientists (NeQN) featured in Neuron. The product is the first neuroethics special issue in a high impact neuroscience journal.

Each perspective offers topics and context for their engagement with and practice of neuroethics. The issue features the seven existing and emerging large-scale brain research projects organized in alphabetical order.

The Australian Brain Alliance describes how neuroethics has been integrated into their research ethos as featured in their public outreach and advocacy efforts as well as their explorations in the public domains such as neurolaw and industry. A key component for the Australian project is diversity and inclusion, and there is a particular interest in engaging brain health with vulnerable Indigenous populations in Australia.

The Canadian Brain Research Strategy paper illustrates the rich historical efforts in pioneering neuroethics and future plans of a national collaboration to carefully consider public discourse and patient engagement as they pursue deeper knowledge of the how the brain learns, remembers, and adapts. A fundamental recognition of the neuroethics backbone of the Canadian project is that “The powerful ability of the brain to change or rewire itself in response to experience is the foundation of human identity.”

The China Brain Project discusses potential models for important public outreach campaigns and the balance of considering traditional Chinese culture and philosophy, particularly in the areas of brain death, conceptualizations of personhood and individual rights, and stigma for mental illness. The authors describe commitments for integrating neuroethics as the China Brain Project is being designed.

The EU Human Brain Project outlines its bold leadership and addresses the conceptual and philosophical issues of neuroethics and the implementation of philosophical insights as an iterative process for neuroscience research. A project with an extremely sophisticated neuroethics infrastructure, this paper provides examples of managing issues related to the moral status of engineered entities, how interventions could impact autonomy and agency, and dual use.

The Japan Brain/MINDS paper describes plans to reinvigorate historical efforts in neuroethics leadership as it expands the scope of its research and launches Japan Brain/MINDS Beyond. In particular, the project will integrate neuroethics to address issues related to privacy and data collection as well as in considering stigma and biological models of psychiatric disease.

The Korea Brain Initiative paper nicely demonstrates how advocacy for neuroscience and neuroethics at the government and policy levels go hand in hand. As Korea aims to advance its neuroscience community, the Korean government has seen neuroethics as integral to neuroscientists’ development. The Korea Brain Initiative is exploring ethical issues related to “intelligent” brain technologies, brain banking, cognitive enhancement, and neural privacy in the milieu of traditional and contemporary cultural traditions in Korea.

The US BRAIN Initiative outlines its efforts in building an infrastructure for neuroethics in research and policy and for funding research as it plans its roadmap for the next phase of BRAIN to 2025. Example of ethical issues that arise from the project’s goals of understanding neural circuitry include the moral relevance and status of ex vivo brain tissue and organoids as well as unique ethical concerns around informed consent in brain recording and stimulation in humans.

Each project illustrates that neuroethics is important regardless of the scope and methodologies inherent in its research goals and demonstrates the utility of the NeQNs for today’s and future scientists within and beyond the large-scale neuroscience research projects.

Karen Rommelfanger

PhD, Director, Neuroethics Program Emory Center for Ethics, Co-chair International Brain Initiative Neuroethics Workgroup

Why do we pay for genetic information that we do not use?

February 5, 2019

Pär SegerdahlAbout half a million people around the world have purchased direct-to-consumer genetic tests. A large majority say that they are willing to pay for the genetic information, even if the results do not reveal anything of clinical value. If so, why do they want to buy genetic information about themselves?

Many say they want health-relevant information. One can guess that they want information that helps them to live healthier: How should a person with my genes eat and exercise? However, the test results do not seem to motivate any changed behavior. Thus, people pay for genetic information, but they do not use it.

Alessandra Gorini and Gabriella Pravettoni reflect on the psychology behind consumers’ seemingly strange behavior. What makes so many buy genetic information that they will not use? In addition to the difficulty of understanding statistical information, they suggest that consumers may want to signal to themselves that everything is fine. People are generally optimists when it comes to risk. Most people think that they themselves are at less risk than others are to suffer from disease or other adverse events. Most also have a tendency to interpret information as confirming what they already believe.

What consumers of genetic tests pay for, then, is a positive signal to themselves. When they read the test results, optimistic and self-confirming cognitive processes are immediately activated: Look, I’m safe!

Gorini and Pravettoni argue that this self-signaling consumption of genetic information is problematic. The information is not used effectively. What can we do about it?

Rather than regulating the market of direct-to-consumer genetic tests, the authors propose that we should increase consumers’ knowledge and awareness, to help them use genetic information more effectively. However, if consumers are satisfied with the positive signal they sought and bought, are they motivated to acquire knowledge that can interfere with the signal?

Pär Segerdahl

Alessandra Gorini and Gabriella Pravettoni. 2016. Why do we pay for information that we won’t use? A cognitive-based explanation for genetic information seeking. European Journal of Human Genetics 24: 625. doi:10.1038/ejhg.2015.188

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Ask the patients about the benefits and the risks

January 16, 2019

Pär SegerdahlAlmost no medications are without risks of side effects. When new drugs are approved, decision makers must balance risks and benefits. To make the balancing, they use results from clinical trials where the drugs are tested on patients to determine (among other things) efficacy and side effects.

But how do you balance risks and benefits? Is the balancing completely objective, so that all that is needed is results from clinical trials? Or can risks and benefits be valued differently?

It has been noted that decision makers can value risks and benefits differently from patients. Therefore, results merely from clinical trials do not suffice. Decision makers also need to understand how the patients themselves value the risks and the benefits associated with treatments of their disease. The patients need to be asked about their preferences.

Karin Schölin Bywall is a PhD student at CRB. She plans to carry out preference studies with patients suffering from rheumatoid arthritis. The task is complex, since risks and benefits are multidimensional. Rheumatoid arthritis is a chronic disease with several symptoms, such as pain, stiffness, fatigue, fever, weakness, deformity, malaise, weight loss and depression. Medications can be variously effective on different symptoms, while they can have a range of side effects. Which positive effect on which symptom is sufficiently important for the patients to outweigh a certain level of one of the side effects?

Many patients naturally want the drug to enable them to work, despite the disease. However, if the pain is relieved enough to enable carrying out the work, while the medicine has as a side effect such fatigue that the patient cannot get out of bed, then the desired benefit is not provided.

To prepare her preference study, Karin Schölin Bywall decided to approach the patient group immediately. From the very beginning, she wanted to engage the patients in her research, by interviewing them about how they perceive participating in preference studies on new drugs against rheumatoid arthritis.

The patients stated that they saw it as important to be involved in regulatory decisions about new treatments of their disease. So that decision makers understand the patients’ own experiences of the benefits and risks that such drugs may have, and what the benefits and risks mean in practice, in the daily life of a rheumatic.

Results from the interviews are reported in the journal, The Patient – Patient-Centered Outcomes Research. The article emphasizes that preference studies can lead to drugs that the patient group is more motivated to take according to the physician’s instructions, which can improve clinical outcomes in the patients. The patients further stated that as participants in preference studies they want good information about how the drug functions, about how the study will be used by decision makers, and about where in the decision-making process the study will be used.

Feedback from patients is likely to become increasingly important in future decisions on medical products.

Pär Segerdahl

Schölin Bywall, K.; Veldwijk, J.; Hansson, M. G.; Kihlbom, U. “Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis.” The Patient – Patient-Centered Outcomes Research, 2018. DOI: 10.1007/s40271-018-0344-2

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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.

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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 had the best readability scores, followed by the Norwegian site The Swedish website 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.

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