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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Larger and smaller sized ethics

January 29, 2019

Pär SegerdahlEthics can be about big, almost religious questions. Should scientists be allowed to harvest stem cells from human embryos and then destroy the embryos? Ethics can also be about narrower, almost professional issues. How should the development of embryonic stem cell lines be regulated? The latter question is similar to the question: How should the aircraft industry be regulated?

Larger and smaller ethics can have difficulties understanding each other, even though they often need to talk. For example, larger ethics can be suspicious of medical research and the pharmaceutical industry, and overlook how meticulously responsible they most often are. And how rigorously supervised they are, as the aircraft industry. Neither the drug nor the aircraft industry can be carefree about safety issues!

Smaller ethics can also be suspicious of larger ethics. Medical research and industry, with their professional attitudes, can experience larger ethical questions as being as vague and distant as nebulae. This fact, that larger and smaller ethics have difficulties even hearing each other, creates the need for a simpler, more sincerely questioning attitude, which never settles within any limits, whether they are narrower or wider. Remember that even larger perspectives often degenerate into regulations of how people should think. They shrink.

Medical research and industry need regulation, it is as important as the safety work in the aircraft industry. However, we need also to think big about human life and life in general. In order to keep ethics alive, a beginner’s attitude is needed, constantly renewed sincerity. Does it sound difficult? All we need to do is to ask the questions we really wonder about, instead of hiding them behind a confident facade.

Nothing could be easier. The question is if we dare. The sincerest questions open up the biggest perspectives.

Pär Segerdahl

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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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The human being is not only a category

January 9, 2019

Pär SegerdahlWe often use words as categories, as names of classes of things or individuals in the world. Humans and animals. Englishmen and Germans. Capitalists and Communists. Christians and Muslims. I want to highlight a difficulty we may encounter if we try to handle the problem of human violence from such an outward looking perspective.

Something that easily happens is that we start looking for the ideal subcategory of humans, whom we cannot accuse of any violence. If we only found a truly peaceful group of humans, somewhere in the world, we could generalize it to all humanity. We could create an evidence-based humanity, finally living peacefully. We could wipe out the problem of violence! However, where do we find the nonviolent humans who, on scientific grounds, could guide the rest of humanity to peace?

One problem here is that if we find some peaceful humans, perhaps on the British Isles, or in the Himalayas, then we must convert all other humans on the surface of this planet to the peaceful category. That does not sound promising! On the contrary, it sounds like a recipe for war.

Already the search for evidence seems violent, since it will repeat not just one, but all accusations of violence that ever were directed at groups of people. After all, there are:

  • violent Christians
  • violent Muslims
  • violent Capitalists
  • violent Anti-Capitalists
  • violent Germans
  • violent Englishmen

Moreover, there are violent trombonists. We also know that there are violent democrats, as well as violent anti-democrats. Lately we have been surprised to learn that even Buddhists can persecute humans and burn down temples and mosques. How about that! Even Buddhists are violent. The project to create an evidence-based, peaceful humanity seems hopeless.

However, let us turn this around. After all, we are all humans:

  • Christians are humans
  • Muslims are humans
  • Capitalists are humans
  • Anti-Capitalists are humans
  • Germans are humans
  • Englishmen are humans

Trombonists are humans, as are democrats, anti-democrats and Buddhists. We are all humans. Does it not sound hopeful when we acknowledge the fact that we are all humans? It certainly does sound full of promise. But why?

Is it perhaps because we stop opposing humans and instead speak more grandiosely about the human as one big universal category? I do not think so. After all, the problem was, from the beginning, that there are:

  • violent humans

It is not difficult to distrust the human as a universal category. Would it not be best if the human simply disappeared from this overburdened planet? Is it not horrible that we are all these humans, intruding on nature? In fact, there are those who propose that we should transgress the human category and become post-human. As though the solution were an unborn category.

No, the hope we felt emerged, I think, precisely because we stopped talking about human beings as a category. Notice the word we humans. What does it mean to talk about us humans? I think it means that we no longer speak of the human as a category in the world, not even grandiosely as a universal category. Rather, the human is, more intimately, “all of us,” “you and me,” “each one of us.”

When we talk about the human from within, we do not accuse the human as a worldly category to be violent. Rather, we see the violence in ourselves. I see it in me; you see it in you. We see the violence in each one of us; we see it in all of us. The responsibility thereby naturally becomes our own human responsibility. That is where the hope we felt emanated, I believe. It came from the internal perspective on the human. This nearness to ourselves made acknowledging that we are all humans sound full of promise.

I stop here. I just wanted to remind you of the fact that the human being is not only a worldly category with which to calculate and experiment. The category of the human can make us blind to ourselves as intimately alive, and thereby to the violence in us and to our responsibility for it.

I just hope this reminder did not trigger further violence: “What!? Are you suggesting that the problem lies in me? How impudent! Please, don’t include me in your pathetic we.”

Pär Segerdahl

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Dangers of moral words

December 11, 2018

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

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


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