The Ethics Blog

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

Tag: ethics (Page 2 of 6)

Communicating thought provoking research in our common language

11 December, 2019 / / 1 Comment

Pär SegerdahlAfter having been the editor of the Ethics Blog for eight years, I would like to describe the research communication that usually occurs on this blog.

The Ethics Blog wants to avoid the popular scientific style that sometimes occurs in the media, which reports research results on the form, “We have traditionally believed that…, but a recent scientific study shows that…” This is partly because the Ethics Blog is run by a research center in ethics, CRB. Although ethics may involve empirical studies (for example, interviews and surveys), it is not least a matter of thinking. If you, as an ethicist, want to develop new recommendations on informed consent, you must think clearly and thoroughly. However, no matter how rigorously you think, you can never say, “We have traditionally believed that it is ethically important to inform patients about…, but recent philosophical thoughts show that we should avoid doing that.”

Thinking does not provide the authority that empirical research gives. As an ethicist or a philosopher, I cannot report my conclusions as if they were research results. Nor can I invoke “recent thoughts” as evidence. Thoughts give no evidence. Ethicists therefore present their entire thinking on different issues to the critical gaze of readers. They present their conclusions as open suggestions to the reader: “Here is how I honestly think about this issue, can you see it that way too?”

The Ethics Blog therefore avoids merely disseminating research results. Of course, it informs about new findings, but it emphasizes their thought provoking aspects. It chooses to reflect on what is worth thinking about in the research. This allows research communication to work more on equal terms with the reader, since the author and the reader meet in thinking about aspects that make both wonder. Moreover, since each post tries to stand on its own, without invoking intellectual authority (“the ethicists’ most recent thoughts show that…”), the reader can easily question the blogger’s attempts to think independently.

In short: By communicating research in a philosophical spirit, science can meet people on more equal terms than when they are informed about “recent scientific findings.” By focusing on the thought provoking aspects of the research, research communication can avoid a patronizing attitude to the reader. At least that is the ambition of the Ethics Blog.

Another aspect of the research communication at CRB, also beyond the Ethics Blog, is that we want to use our ordinary language as far as possible. Achieving a simple style of writing, however, is not easy! Why are we making this effort, which is almost doomed to fail when it comes to communicating academic research? Why do Anna Holm, Josepine Fernow and I try to communicate research without using strange words?

Of course, we have reflected on our use of language. Not only do we want to reach many different groups: the public, patients and their relatives, healthcare staff, policy makers, researchers, geneticists and more. We also want these groups to understand each other a little better. Our common language accommodates more human agreement than we usually believe.

Moreover, ethics research often highlights the difficulties that different groups have in understanding each other. It can be about patients’ difficulties in understanding genetic risk information, or about geneticists’ difficulties in understanding how patients think about genetic risk. It may be about cancer patients’ difficulties in understanding what it means to participate in clinical trials, or about cancer researchers’ difficulties in understanding how patients think.

If ethics identifies our human difficulties in understanding each other as important ethical problems, then research communication will have a particular responsibility for clarifying things. Otherwise, research communication risks creating more communication difficulties, in addition to those identified by ethics! Ethics itself would become a communication problem. We therefore want to write as clearly and simply as we can, to reach the groups that according to the ethicists often fail to reach each other.

We hope that our communication on thought provoking aspects of ethics research stimulates readers to think for themselves about ethical issues. Everyone can wonder. Non-understanding is actually a source of wisdom, if we dare to admit it.

Pär Segerdahl

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Honest questions examining our intellectual sinfulness

21 October, 2019 / / 6 Comments

Pär SegerdahlWhy should we hold our philosophical tradition in high esteem? Why should we admire Socrates and other great thinkers? Because they strengthened reason? Because they taught humanity to set emotions aside and instead purify facts and logic?

If that were true, we should admire the philosophers for armoring humanity. For turning us into clever neurotics without contact with our emotional life.

I believe the greatness of these philosophers is more simple, humble and human. They were embarrassingly aware of their own intellectual sinfulness. They had the courage to confess their sins and to examine them closely. They had the courage to know themselves.

That sincere humility, I believe, marks true thinkers from all parts of the world. Just as Socrates, in the middle of a discourse, could hear an inner voice stop him from speaking with intellectual authority on some topic, Lao Tzu saw it as a disease to speak as if we knew what we do not know.

These genuine thinkers hardly spoke with intellectual certainty. At least not in their most creative moments. They probably felt ashamed of the cocksure voice that marks many of our intellectual discussions about prestigious topics. They probably spoke tentatively and reasoned hesitantly.

We are all fallible. Philosophy is, at heart, intense awareness of this human fact. How does such awareness manifest in a thinker? Usually through questions that openly confess that, I know that I do not know. A philosophical inquiry is a long series of confessions. It is a series of sincere questions exposing a deep-rooted will to control intellectually the essence of various matters. The questions become clearer as we come to see more distinctly how this will to power operates in us. When we see how our desire to dictate intellectually what must be true, blinds us to what is true.

Do you and I, as academics, dare to admit our intellectual sinfulness? Do we dare to confess that we do not know? Do we have the courage to speak tentatively and to reason hesitantly?

I believe that we would do a great service to ourselves and to humanity if we more often dared to speak openly in such a voice. However, we are facing a difficulty of the will. For there is an expectation that researchers should master facts and logic. Surely, we are not paid to be ignorant and irrational. Therefore, must we not rather disseminate our knowledge and our expertise?

Of course! However, without awareness of our intellectual sinfulness, which could stop Socrates in the middle of a sentence, we run the risk of contributing to the disease that he treated in himself. We display not only what we happen to know, but also a shiny facade that gives the impression that we control the truth about important matters.

In short, we run the risk of behaving like intellectual Pharisees, exhibiting an always well-polished surface. Below that surface, we wither away, together with the society to which we want to contribute. We lose touch with what truly is alive in us. It succumbs under the pressure of our general doctrines about what must be true. Intellectualism is a devastating form of fact denialism. In its craving for generality, it denies what is closest to us.

Do not armor yourself with rationalism as if truth could be controlled. Instead, do what the greatest thinkers in the history of all of humanity did. Open yourself to what you do not know and explore it in earnest.

You are vaster than your imagined knowledge. Know yourself!

Pär Segerdahl

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Why should we care about the environment and climate change?

8 October, 2019 / / 1 Comment

Jessica Nihlén FahlquistTo most of us, it is self-evident that we, as human beings and societies, should care about the environment and climate change. Greta Thunberg has, in a remarkable way, spurred political interest and engagement in climate change. This effort has affected our thoughts and emotions concerning environmental policy. However, when we dig deeper into the philosophical debate, there are different ideas on why we should care about the environment. That is, even though we agree on the need to care, there are various arguments as to why and how we should do that.

First, some scholars argue that we should care about nature because we need it and what we get from it. Nature is crucial to us, for example, because it provides us with water and food as well as air to breathe. Without nature and a good climate, we simply cannot live on planet Earth. Unless we make a substantial effort, our lifestyle will lead to flooding, unmanageable migration and many other enormous challenges. Furthermore, it will affect poorer people and poorer regions the most, making it a crucial issue of justice.

Second, some philosophers argue that it is wrong to base our concern for nature and the environment on the needs of, and effects on, human beings. The anthropocentric assumptions are wrong, they argue. Even without human beings, nature has a value. Its value is intrinsic and not merely instrumental. Proponents of this view often claim that animals have values, and possibly even rights, that should be protected. They disagree on whether it is individual animals, species or even ecosystems that should be protected.

Environmental philosophy consists of many different theoretical schools, and the notions they defend underlie societal debate, explicitly or merely implicitly. Some notions are based on consequentialist ethics and others on deontological ethics. In addition to these two schools of thought, virtue ethics has become influential in the philosophical debate.

Environmental Virtue Ethics holds that it is inadequate to focus on consequences, duties and rights. Furthermore, it is inadequate to focus on rules and legislation. Our respect for and reverence for nature is based on the virtues we ought to develop as human beings. In addition, society should encourage such virtues. Virtue ethics focuses on the character traits, on the dispositions to act, and on the attitudes and emotions that are relevant to a certain area, in this case the environment. It is a richer, more complex theory than the other two mentioned. Even though virtues were first discussed during Antiquity, and the concept might seem obsolete, they are highly relevant in our time. Through reflection, experience and role models, we can all develop virtues crucial to environmental protection and sustainability. The idea is not only that society needs these virtuous people, but that virtuous human beings blossom as individuals when they develop these virtues. They argue that it is wrong to see nature as a commodity belonging to us. Instead, it is argued, we are part of nature and have a special relationship with it. This relationship should be the focus of the debate.

Whereas Environmental Virtue Ethics focuses on ethical virtues, that is, how we should relate to nature through our development into virtuous individuals, a related school of thought focuses on the aesthetical value of nature. It is pointed out that not only does nature have ethical value, but an aesthetical value in virtue of its beauty. We should spend time in nature in order to fully appreciate its aesthetical value.

All of the mentioned schools of thought agree that we should care about the environment and climate. They also hold that sustainability is an important national and global goal. Interestingly, what is beneficial from a sustainability perspective is not necessarily beneficial to climate changes. For instance, nuclear energy could be considered good for climate change due to its marginal emissions, but it is doubtful that it is good for sustainability considering the problems of nuclear waste.

Finally, it is important to include the discussion of moral responsibility. If we agree that it is crucial to save the environment, then the question arises who should take responsibility for materializing this goal. One could argue that individuals bear a personal responsibility to, for example, reduce consumption and use sustainable transportation. However, one could also argue that the greatest share of responsibility should be taken by political institutions, primarily states. In addition, a great share of responsibility might be ascribed to private actors and industries.

We could also ask whether, and to what extent, responsibility is about blame for past events, for example, the western world causing too much carbon emissions in the past. Alternatively, we could focus on what needs to be done now, regardless of causation and blame. According to this line of thinking, the most important question to ask is who has the resources and capacity to make the necessary changes. The questions of responsibility could be conceptualized as questions of individual versus collective responsibility and backward-looking versus forward-looking responsibility.

As we can see, there are many philosophically interesting aspects and discussions concerning the question why we should care about the environment. Hopefully, these discussions can contribute to making the challenges more comprehensible and manageable. Ideally, they can assist in the tremendous work done by Greta Thunberg and others like her so that it can lead to agreement on what needs to be done by individuals, nations and the world.

Jessica Nihlén Fahlquist

Nihlén Fahlquist, J. 2018. Moral Responsibility and Risk in Modern Society – Examples from emerging technologies, public health and environment. Routledge Earth Scan Risk in Society series: London.

Van de Poel, I. Nihlén Fahlquist, J, Doorn, N., Zwart, S, Royakkers L, di Lima, T. 2011. The problem of many hands: climate change as an example. Science and Engineering Ethics.

Nihlen Fahlquist J. 2009. Moral responsibility for environmental problems – individual or institutional? Journal of Agricultural and Environmental Ethics, Volume 22(2), pp. 109-124.

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Bioethics without doctrines

24 September, 2019 / / 1 Comment

Pär SegerdahlEver since this blog started, I have regularly described how bioethical discussions often are driven by our own psychology. On the surface, the debates appear to be purely rational investigations of the truthfulness of certain claims. The claims may be about the risks of genetically modified organisms (GMOs), the private nature of genetic information, the moral status of the human embryo, or the exploitation of egg donors for stem cell research. The topics are, as you probably hear, sensitive. Behind the rational surface of the debates, one can sense deeply human emotions and reactions: fear, anger, anxiety.

Have you ever been afraid? Then you know how easily fear turns into anger towards what you think causes your fear. What happens to the anger? Anger, in turn, tends to express itself in the form of clever arguments against what you think is causing your fear. You want to prove how wrong what frightens you is. It must be condemned, it must cease, it must be prohibited. This is how debates often begin.

The debates hide the emotions that drive them. Fear hides behind anger, which hides behind clever arguments. This hiding in several steps creates the shiny rational surface. It sounds like we were discussing the truth of purely intellectual doctrines about reality. Doctrines that must be defended or criticized rationally.

As academics, we have a responsibility to contribute to debates, to contribute with our expertise and our ability to reason correctly. This is good. Debates need objectivity and clear logic. The only risk is that sometimes, when the debates are rooted in fear, we contribute to hiding the human emotions even more deeply below the rational surface. I think I can see this happening in at least some bioethical debates.

What we need to do in these cases, I think, is to recognize the emotions that drive the debates. We need to see them and handle them gently. Here, too, objectivity and clear logic are required. However, we do not direct our objectivity at pure doctrines. Rather, we direct it more thoughtfully at the emotions and their expressions. Much like we can talk compassionately with a worried child, without trying to disprove the child as if the child’s worries were deduced from false doctrines about reality.

If our objectivity does not acknowledge emotions, if it does not take them seriously, then the emotions will continue to drive endlessly polarizing debates. But if our objectivity is kindly directed to the emotions, to the psychological engine behind the polarization, then we can pause the sensitive mechanism and examine it in detail. At least we can make it react a little slower.

We habitually distinguish between reason and feeling. As soon as a conflict emerges, we hope that reason will pick out the right position for us. We do not consider the possibility that we can direct reason directly to the emotions and their expressions. It is as if we thought that feelings are so irrational that we must suppress them, should hide them. As parents, however, this is precisely how we reason wisely: We talk to the child’s feelings. Sometimes we need to handle our own feelings the same way. We need to acknowledge them and take good care of them.

In such a compassionate spirit, we can turn our objectivity and our wisdom towards ourselves. Not just in bioethics, but everywhere where human vulnerability turns into relentless argumentation.

By gently dissolving the doctrines that lock the positions and reinforce the hidden emotions, we can begin the process of undoing the mental deadlocks. Then we may talk more clearly and objectively about genetics and stem cell research.

Pär Segerdahl

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Learning from the difficulties

11 September, 2019 / / 1 Comment

Pär SegerdahlIn popular scientific literature, research can sometimes appear deceptively simple: “In the past, people believed that … But when researchers looked more closely, they found that …” It may seem as if researchers need not do much more than visit archives or laboratories. There, they take a closer look at things and discover amazing results.

There is nothing wrong with this popular scientific prose. It is exciting to read about new research results. However, the prose often hides the difficulties of the research work, the orientation towards questions and problems. As I said, there is nothing wrong with this. Readers of popular science rarely need to know how physicists or sociologists struggle daily to formulate their questions and delve into the problems. Readers are more interested in new findings about our fascinating world.

However, there are academic fields where the questions affect us all more directly, and where the questions are at the center of the research process from beginning to end. Two examples are philosophy and ethics. Here, identifying the difficult questions can be the important thing. Today, for example, genetics is developing rapidly. That means it affects more people; it affects us all. Genetic tests can now be purchased on the internet and more and more patients may be genetically tested in healthcare to individualize their treatment.

Identifying ethical issues around this development, delving into the problems, becoming aware of the difficulties, can be the main element of ethics research. Such difficulty-oriented work can make us better prepared, so that we can act more wisely.

In addition, ethical problems often arise in the meeting between living human beings and new technological opportunities. Identifying these human issues may require that the language that philosophy and ethics use is less specialized, that it speaks to all of us, whether we are experts or not. Therefore, many of the posts on the Ethics Blog attempt to speak directly to the human being in all of us.

It may seem strange that research that delves into questions can help us act wisely. Do we not rather become paralyzed by all the questions and problems? Do we not need clear ethical guidelines in order to act wisely?

Well, sometimes we need guidelines. But they must not be exaggerated. Think about how much better you function when you do something for the second time (when you become a parent for the second time, for example). Why do we function better the second time? Is it because the second time we are following clear guidelines?

We grow through being challenged by difficulties. Philosophy and ethics delve into the difficulties for this very reason. To help us to grow, mature, become wiser. Individually and together, as a society. I do not know anyone who matured as a human being through reading guidelines.

Pär Segerdahl

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How can we set future ethical standards for ICT, Big Data, AI and robotics?

infographic
11 July, 2019 / / 0 Comments

josepine-fernow-siennaDo you use Google Maps to navigate in a new city? Ask Siri, Alexa or OK Google to play your favourite song? To help you find something on Amazon? To read a text message from a friend while you are driving your car? Perhaps your car is fitted with a semi-autonomous adaptive cruise control system… If any software or machine is going to perform in any autonomous way, it needs to collect data. About you, where you are going, what songs you like, your shopping habits, who your friends are and what you talk about. This begs the question:  are we willing to give up part of our privacy and personal liberty to enjoy the benefits technology offers.

It is difficult to predict the consequences of developing and using new technology. Policymakers struggle to assess the ethical, legal and human rights impacts of using different kinds of IT systems. In research, in industry and our homes. Good policy should be helpful for everyone that holds a stake. We might want it to protect ethical values and human rights, make research and development possible, allow technology transfer from academia to industry, make sure both large and smaller companies can develop their business, and make sure that there is social acceptance for technological development.

The European Union is serious about developing policy on the basis of sound research, rigorous empirical data and wide stakeholder consultation. In recent years, the Horizon2020 programme has invested € 10 million in three projects looking at the ethics and human rights implications of emerging digital technologies: PANELFIT, SHERPA and SIENNA.

The first project, PANELFIT (which is short for Participatory Approaches to a New Ethical and Legal Framework for ICT), will develop guidelines on the ethical and legal issues of ICT research and innovation. The second, SHERPA (stands for Shaping the ethical dimensions of Smart Information Systems (SIS) – A European Perspective), will develop tools to identify and address the ethical dimensions of smart information systems (SIS), which is the combination of artificial intelligence (AI) and big data analytics. SIENNA (short for Stakeholder-informed ethics for new technologies with high socio-economic and human rights impact), will develop research ethics protocols, professional ethical codes, and better ethical and legal frameworks for AI and robotics, human enhancement technologies, and human genomics.

SSP-graphic

All three projects involve experts, publics and stakeholders to co-create outputs, in different ways. They also support the European Union’s vision of Responsible Research and Innovation (RRI). SIENNA, SHERPA and PANELFIT recently published an editorial in the Orbit Journal, inviting stakeholders and publics to engage with the projects and contribute to the work.

Want to read more? Rowena Rodrigues and Anaïs Resseguier have written about some of the issues raised by the use of artificial intelligence on Ethics Dialogues (The underdog in the AI and ethical debate: human autonomy), and you can find out more about the SIENNA project in a previous post on the Ethics Blog (Ethics, human rights and responsible innovation).

Want to know more about the collaboration between SIENNA, SHERPA and PANELFIT? Read the editorial in Orbit (Setting future ethical standards for ICT, Big Data, AI and robotics: The contribution of three European Projects), or watch a video from our joint webinar on May 20, 2019 on YouTube (SIENNA, SHERPA, PANELFIT: Setting future ethical standards for ICT, Big Data, SIS, AI & Robotics).

Want to know how SIENNA views the ethical impacts of AI and robotics? Download infographic (pdf) and read our state-of-the-art review for AI & robotics (deliverable report).

AI-robotics-ifographic

Josepine Fernow

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Promoting public health requires responsibility, compassion and humility

10 June, 2019 / / 0 Comments

Jessica Nihlén FahlquistPublic health focuses on the prevention of disease and the promotion of health on a collective level, that is, the health of the population. This distinguishes public health from medical care and the doctor-patient relationship.

In a clinical setting, the doctor discusses treatments with the patient directly and risks and benefits are assessed in relation to that individual. In contrast, public health agencies need to base their analysis on a collectivist risk-weighing principle, weighing risks of the population against benefits of the population. One example could be taxation of cigarettes or information concerning ways to reduce obesity.

Although the generalizations involved and the collectivist focus is necessary in public health, and although the overall intentions are good, there is always a risk that individual interests, values and rights are threatened. One example is the way current national and international breastfeeding policy affects non-breastfeeding mothers and possibly gay and adoptive parents. The norm to breastfeed is very pervasive, and studies show that women who cannot breastfeed feel that they may harm the baby or that they are inadequate as parents. It is possible to think of a couple who want to share parenthood equally and for that reason choose to bottle-feed their baby due to their values. The collectivist focus is based on a utilitarian rationale where the consequences in terms of health-related benefits of the population are the primary goal of successful interventions. In such efforts, the most important value is efficacy.

In addition to the underlying utilitarian perspective on health, there is also a somewhat contrasting human rights perspective in public health: the idea that all humans have certain rights, and that the right to life and health are of utmost importance. Finally, health is also discussed in terms of local and global justice, especially since inequalities in terms of socio-economical and educational differences have been acknowledged during recent years.

One could conclude that all aspects of the ethics of public health are covered by these different approaches. However, I would argue that there is one dimension missing in these analyses, namely, virtue ethics, and more specifically the virtues of responsibility, compassion and humility.

As mentioned above, there is a risk that the interests, values and rights of particular individuals and minorities are neglected by ever so well-intended collectivist policies. The power involved in more and less coercive public health policies calls for a certain measure of responsibility. A balance should be struck between the aim to promote the collective good and the respect for the choices and values of individuals.

In addition, a certain measure of compassion is needed. Compassion could be seen as a disposition to think and act in an emotionally engaged way in order to understand and acknowledge the effects of policy on individuals. This is clear when reflecting on the effects of breastfeeding policy on individuals who cannot breastfeed their babies.

Finally, since public health policy is not only a matter of evidence and science, but also about values, a certain degree of humility should be exercised, acknowledging also the provisional character of scientific evidence. This is the case with measles vaccination. The safety and efficacy of the vaccine can, and has been, established by science. However, the question whether to introduce mandatory vaccination is a matter of values. It should be possible to acknowledge and respect the values and perspectives of individuals without compromising what scientific evidence suggests in terms of safety and efficacy.

The virtues of responsibility, compassion and humility could be understood in terms of values of public health professionals, and they should be encouraged by the agencies for which such professionals work.

Jessica Nihlén Fahlquist

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Genetic risk entails genetic responsibility

5 March, 2019 / / 0 Comments

Pär SegerdahlIntellectual optimists have seen genetic risk information as a human victory over nature. The information gives us power over our future health. What previously would have been our fate, genetics now transforms into matters of personal choice.

Reality, however, is not as rosy as in this dream of intellectual power over life. Where there is risk there is responsibility, Silke Schicktanz writes in an article on genetic risk and responsibility. This is probably how people experience genetic risk information when they face it. Genetic risk gives us new forms of responsibility, rather than liberates us from nature.

Silke Schicktanz describes how responsibility emerges in situations where genetic risk is investigated, communicated and managed. The analysis exceeds what I can reproduce in a short blog post. However, I can give the reader a sense of how genetic risk information entails a broad spectrum of responsibilities. Sometimes in the individual who receives the information. Sometimes in the professional who provides the information. Sometimes in the family affected by the information. The examples are versions of the cases discussed in the article:

Suppose you have become strangely forgetful. You do a genetic test to determine if you have a gene associated with Alzheimer’s disease. You have the gene! The test result immediately makes you responsible for yourself. What can you do to delay or alleviate the disease? What practical measures can be taken at home to help you live with the disease? You can also feel responsibility for your family. Have you transferred the gene to your children and grandchildren? Should you urge them to test themselves? What can they do to protect themselves? The professional who administered the test also becomes responsible. Should she tell you that the validity of the test is low? Maybe you should not have been burdened with such a worrying test result, when the validity so low?

Suppose you have rectum-colon cancer. The surgeon offers you to participate in a research study in which a genetic test of the tumor cells will allow individualized treatment. Here, the surgeon becomes responsible for explaining research in personalized medicine, which is not easy. There is also the responsibility of not presenting your participation in the study as an optimization of your treatment. You yourself may feel a responsibility to participate in research, as patients have done in the past. They contributed to the care you receive today. Now you can contribute to the use genetic information in future cancer care. Moreover, the surgeon may have a responsibility to counteract a possible misunderstanding of the genetic test. You can easily believe that the test says something about disease genes that you may have passed on, and that the information should be relevant to your children. However, the test concerns mutations in the cancer cells. The test provides information only about the tumor.

Suppose you have an unusual neurological disorder. A geneticist informs you that you have a gene sequence that may be the cause of the disease. Here we can easily imagine that you feel responsibility for your family and children. Your 14-year-old son has started to show symptoms, but your 16-year-old daughter is healthy. Should she do a genetic test? You discuss the matter with your ex-partner. You explain how you found the genetic information helpful: you worry less, you have started going on regular check-ups and you have taken preventive measures. Together, you decide to tell your daughter about your test results, so that she can decide for herself if she wants to test herself.

These three examples are sufficient to illustrate how genetic risk entails genetic responsibility. How wonderful it would have been if the information simply allowed us to triumph over nature, without this burdensome genetic responsibility! A pessimist could object that the responsibility becomes overpowering instead of empowering. We must surrender to the course of nature; we cannot control everything but must accept our fate.

Neither optimists nor pessimists tend to be realistic. The article by Silke Schicktanz can help us look more realistically at the responsibilities entailed by genetic risk information.

Pär Segerdahl

Schicktanz, S. 2018. Genetic risk and responsibility: reflections on a complex relationship. Journal of Risk Research 21(2): 236-258

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Neuroethics goes global (By Karen Rommelfanger)

12 February, 2019 / / 0 Comments

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

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Larger and smaller sized ethics

29 January, 2019 / / 0 Comments

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

This post in Swedish

We like challenging questions - the ethics blog

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