Broad and deep consent for biobanks

November 18, 2019

Pär SegerdahlA new article on consent for biobanks manages to surprise me. How? By pointing out what ought to be obvious! If we want to judge what kind of consent works best for biobanks, then we should look at today’s biobanks and not look back at more traditional medical research.

The risks in traditional medical research are mainly physical. Testing new substances and interventions on human subjects can harm them. Potential research participants must therefore be informed about these physical risks, which are unique to each specific project. For this reason, study-specific informed consent is essential in traditional medical research.

In biobank research, however, the risks are primarily informational. Personal data may end up in the wrong hands. The risks here are not so much linked to the specific projects that use material from the biobank. The risks are rather linked to the biobank itself, to how it is governed and controlled. If we want to give biobank participants ethical protection through informed consent, it is information about the biobank they need, not about specific projects.

In the debate on consent for biobanks, study-specific consent figured as a constant requirement for what informed consent must be. However, in the context of biobanks, that requirement risks placing an irrelevant demand on biobanks. Participants will receive the wrong protection! What to do?

Instead of looking back, as if study-specific consent were an absolute norm for medical research, the authors formulate three requirements that are relevant to today’s biobanks. First, potential participants should be informed about relevant risks and benefits. Second, they should be given an opportunity to assess whether research on the biobank material is in line with their own values. Finally, they should be given ethical protection as long as they participate, as well as opportunities to regularly reconsider their participation.

In their comparison of the various forms of consent that have figured in the debate, the authors conclude that broad consent particularly well satisfies the first criterion. Since the risks are not physical but concern the personal data that the biobank stores, information to participants about the biobank itself is more relevant than information about the specific projects that use the services of the biobank. That is what broad consent delivers.

However, the authors argue that broad consent fails to meet the latter two criteria. If potential participants are not informed about specific projects, it becomes difficult to judge whether the biobank material is used according to their values. In addition, over time (biobank material can be saved for decades) participants may even forget that they have provided samples and data to the biobank. This undermines the value of their right to withdraw consent.

Again, what to do? The authors propose a deepened form of broad consent, meant to satisfy all three requirements. First, the information provided to participants should include a clear scope of the research that is allowed to use the biobank material, so that participants can judge whether it is consistent with their own values, and so that future ethical review can assess whether specific projects fall within the scope. Secondly, participants should be regularly informed about the activities of the biobank, as well as reminded of the fact that they still participate and still have a right to withdraw consent.

Ethical reasoning is difficult to summarize. If you want to judge for yourself the authors’ conclusion that broad and deep consent is best when it comes to biobanks, I must refer you to the article.

In this post, I mainly wanted to highlight the originality of the authors’ way of discussing consent: they formulate new relevant criteria to free us from old habits of thought. The obvious is often the most surprising.

Pär Segerdahl

Rasmus Bjerregaard Mikkelsen, Mickey Gjerris, Gunhild Waldemar & Peter Sandøe. Broad consent for biobanks is best – provided it is also deep. BMC Medical Ethics volume 20, Article number: 71 (2019)

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An extended concept of consciousness and an ethics of the whole brain

November 4, 2019

Pär SegerdahlWhen we visit a newly operated patient, we probably wonder: Has she regained consciousness? The question is important to us. If the answer is yes then she is among us, we can socialize. If the answer is negative then she is absent, it is not possible to socialize. We can only wait and hope that she returns to us.

Michele Farisco at CRB proposes in a new dissertation a more extensive concept of consciousness. According to this concept, we are conscious without interruption, basically, as long as the brain lives. This sounds controversial. It appears insensitive to the enormous importance it has for us in everyday life whether someone is conscious or not.

Maybe I should explain right away that it is not about changing our usual ways of speaking of consciousness. Rather, Michele Farisco suggests a new neuroscientific concept of consciousness. Science sometimes needs to use familiar words in unfamiliar ways. For example, biology cannot speak of humans and animals as an opposition, as we usually do. For biology, the human is one of the animals. Just as biology extends the concept of an animal to us humans, Michele Farisco extends the concept of consciousness to the entire living brain.

Why can an extended concept of consciousness be reasonable in neuroscience? A simple answer is that the brain continues to be active, even when in the ordinary sense we lose consciousness and the ability to socialize. The brain continues to interact with the signals from the body and from the environment. Neural processes that keep us alive continue, albeit in modified forms. The seemingly lifeless body in the hospital bed is a poor picture of the unconscious brain. It may be very active. In fact, some types of brain processes are extra prominent at rest, when the brain does not respond to external stimuli.

Additional factors support an extended neuroscientific concept of consciousness. One is that even when we are conscious in the usual sense, many brain processes happen unconsciously. These processes often do the same work that conscious processes do, or support conscious processes, or are shaped by conscious processes. When we look neuroscientifically at the brain, our black and white opposition between conscious and unconscious becomes difficult to discern. It may be more reasonable to speak of continuities, of levels of the same consciousness, which always is inherent in the living brain.

In short, neuroscience may gain from not adopting our ordinary concept of consciousness, which makes such an opposition between conscious and unconscious. The difference that is absolute when we visit a newly operated patient – is she conscious or not? – is not as black and white when we study the brain.

Does Michele Farisco propose that neuroscience should make no difference whatsoever between what we commonly call conscious and unconscious, between being present and absent? No, of course not. Neuroscience must continue to explore that difference. However, we can understand the difference as a modification of the same basic consciousness, of the same basic brain activity. Neuroscience needs to study differences without falling victim to a black and white opposition. Much like biology needs to study differences between humans and other animals, even when it extends the concept of an animal to the human.

The point, then, is that neuroscience needs to be open to both difference and continuity. Michele Farisco proposes a neuroscientific distinction between aware and unaware consciousness. It captures both aspects, the difference and the continuity.

Michele Farisco’s extended concept of consciousness also has ethical consequences. It can motivate an ethics of the whole brain, not just of the conscious brain, in the usual sense. The question is no longer, merely, whether the patient is conscious or not. The question is at what level the patient is conscious. We may need to consider ethically even unconscious brains and brain processes, in the ordinary sense. For example, by talking calmly near the patient, even though she does not seem to hear, or by playing music that the patient usually appreciates.

Perhaps we should not settle for waiting and hoping that the patient will return to us. The brain is already here. At several levels, this brain may continue to socialize, even though the patient does not seem to respond.

If you want to know more about Michele Farisco’s extended concept of consciousness and his ethics of the whole brain, read the dissertation that he recently defended. You can also read about new technological opportunities to communicate with patients suffering from severe disorders of consciousness, and about new opportunities to diagnose such disorders.

Pär Segerdahl

Farisco, Michele. 2019. Brain, consciousness and disorders of consciousness at the intersection of neuroscience and philosophy. (Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine 1597.) Uppsala: Acta Universitatis Upsaliensis.

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Honest questions examining our intellectual sinfulness

October 21, 2019

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?

October 8, 2019

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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Who belongs to us?

October 2, 2019

Pär SegerdahlBioethics 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

September 24, 2019

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

September 11, 2019

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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