Tag: philosophy (Page 8 of 19)

Who belongs to us?

2 October, 2019 / Pär Segerdahl / 1 Comment

Bioethics has a problem with human beings, the philosopher Roland Kipke writes. It must ask who belongs to our moral community. Who has rights? Who has human dignity? Who has the moral status usually attributed to healthy adult humans? Who has the right to life?

The question is: Who belongs to us? Are human embryos included in the community? Newborns? Those with advanced dementia? Intelligent animals?

A common response to the question is to propose a philosophical criterion. Two positions dominate in bioethics. One includes all biological human beings, thereby embryos, newborns and those with advanced dementia. Everyone who belongs to the species Homo sapiens belongs to the moral community.

The second position holds that species membership is irrelevant. Instead, the focus is on mental capacities that one holds characterize a “person.” For example, rationality and self-awareness. This excludes embryos, newborns and those with advanced dementia from the community. However, a rational chimpanzee may enter. All persons belong to the moral community, regardless of species affiliation.

Kipke shows how both criteria compel us to answer the question “Who belongs to us?” in ways that contradict most people’s moral intuitions. We might accept this if the positions could be justified by strong arguments, he says. However, such arguments are missing.

What should a poor philosophical gatekeeper do then? Who should be admitted into the community? Who should be kept out?

The solution to the gatekeeper’s dilemma, Kipke suggests, is our ordinary concept of the human. When we talk about “humans,” we usually do not use the scientific concept of a biological species. Our everyday concept of a human already has moral dimensions, he points out. We cannot see a human being without seeing a living person belonging to our community. According to this third position, all humans belong to the moral community.

The only problem is that the gatekeeper needs a criterion to distinguish the human members of the community. It is true that we have everyday uses of the word “human.” It is also true that we normally have no difficulties in distinguishing a human being. However, do these uses really contain a criterion suitable for more philosophical gatekeeper tasks? They do, according to Kipke. He holds that there is a characteristic “living human gestalt or the form of the body,” especially the face, which easily allows recognition of a human being, even when she is seriously injured and deformed.

The “living human form” would thus be the criterion. This form makes us equals in the moral community.

Kipke’s article is philosophically exciting and his criticism of the two dominant positions is revealing. Personally, I nevertheless find the still dominant preoccupation with the question “Who belongs to us?” somewhat terrifying, and perhaps even inhuman. Bioethics treats human concerns about, for example, genetics and stem cell research. Admittedly, people often express their concerns in the form of boundary issues. People who worry about the destruction of embryos in stem cell research, for example, can talk about the embryo as a human individual or as a potential person. However, addressing their worries by suggesting that our common language contains a criterion that has the authority to separate the members of the moral community will probably not still the minds of such worried and perhaps even angry humans. They need a lot more attention. Perhaps it turns out that the intellectual boundary issue concealed the living source of their concerns and made it impossible to treat the problem at its source.

I believe we need a bioethics that responds to moral concerns more humanly and communicatively than only as philosophical boundary issues. Could we not use our ordinary language to think together about the issues that worry us? To refer to an ordinary concept of the human as an arbiter that supposedly dictates the answers to bioethical boundary issues seems characteristic of a smaller community: one that is professionally preoccupied with philosophical boundary issues.

Is that not placing bioethics before life? Is it not putting the cart before the horse?

Pär Segerdahl

Kipke R. Being human: Why and in what sense it is morally relevant. Bioethics. 2019;00:1–11. https://doi.org/10.1111/bioe.12656

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Bioethics without doctrines

24 September, 2019 / Pär Segerdahl / 1 Comment

Ever 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 / Pär Segerdahl / 1 Comment

In 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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In-depth critique of dynamic consent

28 August, 2019 / Pär Segerdahl / 3 Comments

Biobanks are getting bigger and the human biological samples that are stored in the freezers have increasingly long-term utility for research. The samples can be used not only in one study, but also in several different studies. Not only in today’s research, but also in future research. This creates research ethical tensions.

Ethics requires that research participants are informed about and consent to the specific purpose of the project they are asked to participate in. However, when a large-scale biobank is being constructed, such specific information cannot be provided. Future research purposes do not exist yet and cannot be specified. Not until researchers in the future design new studies. How then can biobank research be conducted ethically?

In recent years, a technical solution has been launched: Transform research participants into users of new information and communication technologies (ICT)! Through their computers, tablets or cell phones, they can continuously be informed about new research projects. Sitting in front of their screens, they can give specific consent, or refrain from it, as new projects take shape and researchers apply for access to the biobank’s collected samples. The solution is named dynamic consent.

Dynamic consent certainly seems like an ingenious technical solution to the ethical tensions surrounding today’s increasingly long-term and large-scale biobanks. Moreover, is it not also democratic and politically progressive? Does it not give research participants greater power over the research? Is it not as if all these hundreds of thousands of donors of biological material voted on the direction of future research? Simply by deciding on the use of their own samples.

I recently read an in-depth critique of this belief in a technical solution to the ethical problem. The article is written by Alexandra Soulier at CRB, and focuses on ethical and political consequences of turning research participants into ICT users. Here are some comments that I want to highlight:

The public good that we associate with research is not the sum of isolated individuals’ private preferences in front of their computer screens. Dynamic consent is in tension with the collective and long-term nature of biobank research, and with the notion of the public good which research aims at.

If individual ICT users’ private decisions replace the joint discussions, considerations and functions of ethical committees, the governance of biobanks can be impaired. This, in turn, poses a risk to the participants themselves.

Dynamic consent might transform research participants into seducible audiences. Researchers may want to sell their projects to these audiences through clever communication strategies. Research participants are then treated as manipulable rather than as a rational public to be convinced.

Dynamic consent is not a referendum. Research participants do not vote on research policy issues. They only express their private preferences about their own research participation, project by project, without regard to any research policy implications for the long-term activities of the biobank.

Research participants who do not want to spend years in front of the screen in order to make decisions in real time about their participation in biobank research may feel forced to choose the option (through their technical device) to give exactly the open consent to future research that originally was considered problematic. How can what was considered to be the ethical problem be allowed to be included in the seemingly smart solution?

In summary, the proposed individual-centered technical solution to the ethical challenges of biobank research short-circuits the possibility of jointly taking political and ethical responsibility for these challenges.

I regret that I cannot do justice to Alexandra Soulier’s subtle discussion. I have not read such in-depth criticism in a long time. Read it!

Pär Segerdahl

Soulier, Alexandra. Reconsidering dynamic consent in biobanking: ethical and political consequences of transforming research participants into ICT users. IEEE Technology and Society Magazine, June 2019: 62-70

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Transhumanism purifies human misery

18 June, 2019 / Pär Segerdahl / 0 Comments

The human is a miserable being. Although we are pleased about the new and better-paid job, we soon acquire more costly habits, richer friends, and madder professional duties. We are back to square one, dissatisfied with life and uncomfortable with ourselves. Why can life never be perfect?

Discontent makes us want to escape to better futures. We want to run away from worries, from boredom, from disease, from aging, from all the limitations of life, preferably even from death. We always rush to what we imagine will be a better place. As often as we find ourselves back to square one.

The eternal return of discontent thus characterizes the human condition. We imagine that everything will be perfect, if only we could escape from the present situation, which we believe limits us and causes our discontent. The result is an endless stream of whims, which again make us feel imprisoned.

Always this square one.

Transhumanism is an intellectual revivalist movement that promises that AT LAST everything will be perfect. How? Through escaping from the human herself, from this deficient creature, trapped in a biological body that is limited by disease, aging and death.

How can we escape from all human limitations? By having new technology renew us, making us perfect, no longer suffering from any of the biological limitations of life. A brave new limitless cyborg.

Who buys the salvation doctrine? Literally some of the richest technology entrepreneurs in the world. They have already pushed the boundaries as far as possible. They have tried all the escape routes, but the feeling of limitation always returns. They see no other way out than escaping from EVERYTHING. They invest in space technology to escape the planet. They invest in artificial intelligence and in the deep-freezing of their bodies, to escape the body in the future, into supercomputers that AT LAST will save them from ALL life’s limitations, including disease, aging and death.

Do you recognize the pattern? Transhumanism is human misery. Transhumanism is the escapism that always leads back to square one. It is the dream of a high-tech quantum leap from dissatisfaction. What does paradise look like? Like a high-tech return to square one.

We need new technology to solve problems in the world. When coupled with human discontent, however, technology reinforces the pattern. Only you can free yourself from the pattern. By no longer escaping to an ideal future. It does not work. Running to the future is the pattern of your misery.

Transhumanism is the intellectual purification of human misery, not the way out of it.

Pär Segerdahl

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Promoting public health requires responsibility, compassion and humility

10 June, 2019 / jessicanihlenfahlquist / 0 Comments

Public 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

Nihlén Fahlquist, J. 2019. Public health and the virtues of responsibility, compassion and humility. Public Health Ethics. doi:10.1093/phe/phz007
Nihlén Fahlquist, J. 2017. Vaccine hesitancy and trust. Ethical aspects of risk communication. Scandinavian Journal of Public Health 46(2): 182-188
Nihlén Fahlquist. 2016. Experience of non-breastfeeding mothers, norms and ethically responsible risk communication. Nursing Ethics 23(2):231-41

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Neuroethical reflection in the Human Brain Project

15 May, 2019 / Arleen Salles / 0 Comments

The emergence of several national level brain initiatives and the priority given to neuroscientific research make it important to examine the values underpinning the research, and to address the ethical, social, legal, philosophical, and regulatory issues that it raises.

Neuroscientific insights allow us to understand more about the human brain: about its dynamic nature and about its disorders. These insights also provide the basis for potentially manipulating the brain through neurotechnology and pharmacotherapy. Research in neuroscience thus raises multiple concerns: From questions about the ethical significance of natural and engineered neural circuitry, to the issue of how a biological model or a neuroscientific account of brain disease might impact individuals, communities, and societies at large. From how to protect human brain data to how to determine and guard against possible misuses of neuroscientific findings.

Furthermore, the development and applications of neuro-technology to alleviate symptoms or even enhance the human brain raise further concerns, such as their potential impact on the personality, agency, and autonomy of some users. Indeed, some empirical findings appear to even challenge long held conceptions about who we are, the capacity to choose freely, consciousness, and moral responsibility.

Neuroethics is the field of study devoted to examining these critical issues. Unfortunately, it has sometimes been reduced to a subfield of applied ethics understood as a merely procedural approach. However, in our understanding, neuroethics is methodologically much richer. It is concerned not just with using ethical theory to address normative issues about right and wrong, but notably with providing needed conceptual clarification of the relevant neuroscientific and philosophical notions. Only by having conceptual clarity about the challenges presented will we be able to address and adequately manage them.

So understood, neuroethics plays a key role in the Human Brain Project (HBP). The HBP is a European Community Flagship Project of Information and Computing Technologies (ICT). It proposes that to achieve a fuller understanding of the brain, it is necessary to integrate the massive volumes of both already available data and new data coming from labs around the world. Expected outcomes include the creation and operation of an ICT infrastructure for neuroscience and brain related research in medicine and computing. The goal is to achieve a multilevel understanding of the brain (from genes to cognition), its diseases and the effects of drugs (allowing early diagnoses and personalised treatments), and to capture the brain’s computational capabilities.

The HBP is funded by the European Commission in the framework of the EU’s Horizon 2020 research-funding programme. The programme promotes responsible research and innovation (RRI). RRI is generally understood as an interactive process that engages social actors, researchers, and innovators who must be mutually responsive and work towards the ethical permissibility of the relevant research and its products. The goal is to ensure that scientific progress and innovation are responsible and sustainable: that they increase individual and societal flourishing and maximize the common good.

To develop, broaden, and enhance RRI within the project, the HBP established the Ethics and Society subproject. Ethics and Society is structured around a number of RRI activities such as foresight analysis (to identify at an early stage ethical and social concerns), citizens’ engagement (to promote involvement with different points of view and to strengthen public dialogue), and ethics support (to carry out research in applied ethics and to develop principles and mechanisms that ensure that ethical issues raised by research subprojects are communicated and managed and that HBP researchers comply with ethical codes and legal norms).

Neuroethical reflection plays a key role in this integration of social, scientific, and ethical inquiry. Notably, in the HBP such reflection includes conceptual and philosophical analysis. Insofar as it does, neuroethics aims to offer more than assistance to neuroscientists and social scientists in identifying the social, political, and cultural components of the research. Via conceptual analysis, neuroethics attempts to open a productive space within the HBP for examining the relevant issues, carrying out self-critical analysis, and providing the necessary background to examine potential impacts and issues raised. Neuroethical reflection in the HBP does not exclusively focus on ethical applications and normative guidance. Rather, it takes as a starting point the view that the full range of issues raised by neuroscience cannot be adequately dealt with without also focusing on the construction of knowledge, the meaning of the relevant notions, and the legitimacy of the various interpretations of relevant scientific findings.

At present, the importance of neuroethics is not in question. It is a key concern of the International Brain Initiative, and the different international brain projects are trying to integrate neuroethics into their research in different ways. What continues to be unique to neuroethics in the HBP, however, is its commitment to the idea that making progress in addressing the host of ethical, social, legal, regulatory and philosophical issues raised by brain research to a great extent depends on a conceptual neuroethical approach. It enables constructive critical alertness and a thought-out methodology that can achieve both substantial scientific ground and conceptual clarity.

If you want to read more, see below a list of publications on which this post is based.

Arleen Salles

Delegates eaGNS. Neuroethics Questions to Guide Ethical Research in the International Brain Initiatives. Neuron. 2018.

Evers K, Salles A, Farisco M. Theoretical Framing for Neuroethics: The Need for a Conceptual Aproach. In: Racine E, Aspler, J., editor. Debates About Neuroethics: Springer; 2017.

Salles A, Evers K. Social Neuroscience and Neuroethics: A Fruitful Synergy. In: Ibanez A, Sedeno, L., Garcia, A., editor. Social Neuroscience and Social Science: The Missing Link: Springer; 2017. p. 531-46.

Farisco M, Salles A, Evers K. Neuroethics: A Conceptual Approach. Camb Q Healthc Ethics. 2018;27(4):717-27.

Salles A, Evers K, Farisco M. Neuroethics and Philosophy in Responsible Research and Innovation: The Case of the Human Brain Project. Neuroethics. 2018.

Salles A, Bjaalie JG, Evers K, Farisco M, Fothergill BT, Guerrero M, et al. The Human Brain Project: Responsible Brain Research for the Benefit of Society. Neuron. 2019;101(3):380-4.

Sometimes you do not want to be taken seriously

1 April, 2019 / Pär Segerdahl / 0 Comments

What does taking something seriously mean? Seriously, I do not think there is a given answer. A common view, however, is that serious questions must have given answers: definitive either/or answers. Without either/or answers, truth seeking degenerates into irresponsible chattering. Embryo destruction is either murder or not murder (banging one’s fist on the table). Embryo research is either permissible or not permissible (banging one’s fist on the table).

Seriousness is polarized, one could say. If I were to take polarized seriousness seriously, which seems reasonable since nothing could be more serious than seriousness itself, I would have to ask: Is seriousness polarized or not? Either it is polarized or it is not polarized! I say this resolutely, banging my fist on the table. However, the question itself is polarized. My resolution and categorical banging suddenly appear comically embarrassing. My gestures seem to run ahead of me, answering the question I thought I asked seriously by making them. What happened? Did I reach the limit of seriousness, beyond which I no longer can ask serious questions about seriousness without ending up in self-contradiction?

Perhaps I just reached the limit of small seriousness, where great seriousness can begin. Contradicting myself need not be as bad as it sounds. Perhaps I did not even know I existed until I contradicted myself. My polarized reasoning ran aground. The sunken rock was myself. Self-contradiction allowed self-discovery. For we are not dealing with two contradictory propositions, so that we must seriously investigate which of them is the true proposition and which of them is the false proposition. I was contradicted by how I myself banged my fist on the table and said, resolutely, “either-or.”

Let us be grateful for the self-contradiction. It can open our eyes to another seriousness: the seriousness of self-reflection, where we, as Confucius says, turn around and seek the cause of our failure within ourselves. Thank you, dear self-contradiction. You may be embarrassing, but just for that reason I know that I am alive and not just a propositional machine that easily can be replaced by an online chatbot!

Why do I bring up these remarkable things? Perhaps because it would be tragic if we misunderstood contemplative thinking as superfluous in an empirically founded age. Schopenhauer said something similar: “Pure empiricism is related to thinking as eating is to digestion and assimilation. When empiricism boasts that it alone has, through its discoveries, advanced human knowledge, it is as if the mouth should boast that it alone keeps the body alive.”

Trying seriously to write a blogpost about seriousness, however, is risky. For blogposts are easily circulated as mere opinions. If you were to render the content of this post, you would almost certainly be forced to polarize it as a delimited position that is either true or false. If we followed Schopenhauer’s advice, however, we would give ourselves plenty of time to quietly digest, through thinking, the strange things said in the post. Such peaceful and quiet digestion of thoughts is beyond the capacity of chatterboxes and chatbots.

Do not misunderstand my joking style. It is meant seriously to avoid being taken seriously. The Chinese thinker, Chuang Tzu, did not want to be perceived as a pedant, so he said to his audience, “I’m going to try speaking some reckless words to you and I want you to listen to them recklessly.”

Chuang Tzu was a great thinker who did not want to be taken seriously as a small one.

Pär Segerdahl

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On “truly” understanding the risk

12 March, 2019 / Pär Segerdahl / 0 Comments

It is a well-known psychological fact that people have great difficulties to understand probabilistic risks. What does it actually mean that the risk of developing breast cancer the next ten years is fifteen percent? In addition to the difficulties of understanding probabilities, mathematical expressions can cause a false appearance of exactitude and objectivity. It is often about uncertain evaluations, but expressed in seemingly definitive figures.

At our Monday seminar, Ulrik Kihlbom discussed another difficulty with understanding risk information. It can be difficult to understand not only the probabilities, but also what it is you risk experiencing. Sometimes, people face enormously complex choices, where the risks are high, but also the benefits. Perhaps you suffer from a serious disease from which you will die. However, there is a treatment, and it may work. It is just that the treatment has such severe side effects that you may die even from the treatment.

Ulrik Kihlbom interviewed physicians treating patients with leukemia. The doctors stated that patients often do not understand the risks of the treatment they are offered. The difficulty is not so much about understanding the risk of dying from the treatment. The patients understand that risk. However, the doctors said, no one who has not actually seen the side effects understand that the treatment can make you so incredibly ill.

Yet, it seems like quite comprehensible side effects: fatigue, serious infections, nausea and vomiting, stomach cramp, diarrhea, skin irritation, pain, and weight loss. Why would patients find it difficult to understand these risks?

Could it be that doctors have too high demands on “real” understanding? Must the patient, in order to “truly” understand the side effects, already have experienced the treatment? According to the doctors, experienced patients are at least easier to inform about the side effects. At the same time, the requirement that one must have had the experiences to really understand them seems too strong.

Rather, says Ulrik Kihlbom, doctors probably notice from the patients’ attitude that some of them underestimate what it is like to experience the side effects. Such attitudes can be sensed. The patients understand verbally that they are at risk of these side effects, but emotionally they do not really understand what the side effects are like, especially when they come together for a long time.

This resembles a general human difficulty. We often neglect how we ourselves are affected by our experiences. We project our present, unaffected self, and think: “I’m strong, I can handle those side effects.” However, when we actually experience the side effects, we are no longer strong! The self is not a constant, but changes with our experiences.

Here, then, it is not the probabilities that cause the difficulties, but the words. We understand the side effects verbally and can easily reproduce them. However, even words can cause a false appearance of objectivity: as if the experiences the words denote would not really reach us at our core. We separate ourselves from what we verbally understand we may experience, as if we could live our lives without being affected… without actually living them.

Ulrik Kihlbom has found a striking example of yet another aspect of the difficulty of understanding risk information. Not only probabilities but also common words such as “nausea” can create characteristic misunderstandings of risk information.

Pär Segerdahl

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Genetic risk entails genetic responsibility

5 March, 2019 / Pär Segerdahl / 0 Comments

Intellectual 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

This post in Swedish

Tag: philosophy (Page 8 of 19)

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Promoting public health requires responsibility, compassion and humility

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On “truly” understanding the risk

Genetic risk entails genetic responsibility

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