Promoting public health requires responsibility, compassion and humility

June 10, 2019

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

March 5, 2019

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

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


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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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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Contemplative conversations

November 19, 2018

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

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

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

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

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

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

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

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

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

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

Pär Segerdahl

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