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

Category: Musings (Page 11 of 18)

Ethics in the midst of life

Pär Segerdahl“You don’t treat another human like that!” Thus we may speak, with a trembling voice that simultaneously reveals our confidence. Perhaps to a person who harasses someone else. You just don’t treat people like that!

But what gives us the right to object? From where does our confidence come? Must it not be from the concept of the human? Perhaps we should bracket our passionate voice and instead soberly examine the concept “human being”: so that we may purely intellectually understand why it is wrong to harass people. Perhaps our conceptual investigation reveals some sort of inviolable dignity in human essence. The rest follows from the pure laws of thought.

I believe Socrates did something similar. He shook Athenians’ confidence in life through conceptual investigations that he indicated would lead them to the ultimate source of true confidence; to knowledge of the pure ideas of what is good and right. The Athenians’ mistake was that of simply being confident in life; as humans are confident. That confidence in life made them blind to the purer and more fundamental knowledge that can be reached by turning the gaze toward the concepts themselves.

These tendencies to purify what is intellectually binding in morality make me think of inventors of perpetual motion machines. They dream of machines that, through their ingenuity, can do what no ordinary machine can do. They just move and move, all by themselves, without any connections with the energy flows of nature and life. For they are so cleverly made immune to friction and objections.

The problem is that the purity of these unobjectionable constructions is achieved at the cost of no longer speaking to people; only to other dreamy seekers of perpetual motion machines.

The trembling voice characterizes ethics. Our confidence in life has no ingenious source in reason itself, which we should seek instead of being confident. This does not prevent us from reflecting on our ethical responses and develop our way of living and thinking, allowing our trembling voice to deepen as we seek our way through life.

Ethics is in the midst of life. A moral perpetual motion machine outside of any such living context cannot be constructed. There are limits to how reasonable one can be.

Pär Segerdahl

This post in Swedish

We like real-life ethics : www.ethicsblog.crb.uu.se

Open data access is regulated access

Pär SegerdahlWe usually associate open access with the publication of scientific articles that anyone with internet access can read, without price barrier.

The concept “open access” is now being used also for research data. I have written about this trend towards open data earlier on the Ethics Blog: Openness as a norm.

In many cases, research data are made as freely available as the open access articles that anyone can read; often in connection with the publication of results based on the data. This occurs, for example, in physics.

There is a strong trend towards open data also in medical research; but here the analogy with articles that anyone can read is no longer valid. Biobank and register-based research work with sensitive personal data, to which a number of laws regulating data access apply.

Yet one could speak of a trend towards open data also in this domain. But it then means something different. It’s about making data as accessible as possible for research, within the regulations that apply to this type of data.

Since the relevant laws and ethical frameworks are not only opaque but also differ between countries, the work is largely about developing common models for researchers to work within. One such attempt is made in an article by, among others, Deborah Mascalzoni and Mats G. Hansson at CRB:

The article formulates 15 principles for sharing of biological samples and personal data between researchers. It also includes a template of the written agreements that scientists can make when one research group transfers data or materials to another research group.

Take a look at these principles, and the template of the agreements, and you’ll soon get an idea of how many strict conditions that must be met when biological samples and personal data are shared for research purposes.

Given how open access often is associated with the possibility for anyone at any time to read articles without price barrier, one should perhaps avoid using the term in this context. It may mislead, since this form of data access is heavily regulated, although the aim is to support researchers to share their data and samples.

Pär Segerdahl

This post in Swedish

Minding our language - the Ethics Blog

Culturally sensitive ethics

Pär SegerdahlHealth care receives patients from many different cultures and health care professionals are encouraged to be sensitive to patients’ cultural background. But what is a culture? What is it one should be sensitive to?

Last week, CRB organized a workshop on Islamic perspectives on reproductive ethics. A case that was discussed was this: an unmarried Muslim couple (21 years old) seeks advice on contraception. Should health care workers provide counseling, when premarital sex is forbidden in Islam?

The case brought the question of cultural sensitivity into immediate focus for me. To what should one be sensitive: to doctrines, or to human lives? What “is” a culture: the formulated ideas or the way people live (with their ideas)?

The Muslim couple actually sought counseling. Being culturally sensitive can also mean being sensitive to this fact: that this is how people can live (with their ideas).

It is tempting to objectify cultures in terms of doctrines, especially when they are foreign to us. We don’t know the people and their daily lives, so we try to understand them through the texts – as if we read their “source code.” But the texts are living parts of the culture. They have uses, and these practices cannot be inferred from the texts.

Aje Carlbom (social anthropologist at Malmö University) stressed that this temptation to objectify other cultures can arise even in a culture; for example, when people who belong to it move to parts of the world where people live differently. Suddenly they don’t fully understand their own culture, for it lacks its real-life support, its everyday context, and therefore one turns to the texts. One’s own culture is objectified.

I wonder: Are not these tendencies extremely common; are they not in all of us? Are they not in ethics? Isn’t there a will to objectify ethics, to formulate the “ethical source code” that should govern, for example, our biomedical practices?

I think we need culturally sensitive ethics: in the sense of an ethics that responds sensitively to what is actually happening, and that contributes to meaningful contexts. An ethics that does not objectify either cultures or Ethics (capitalized).

Pär Segerdahl

This post in Swedish

We like real-life ethics : www.ethicsblog.crb.uu.se

Two kinds of nonsense?

This is just a short follow-up to last week’s post: Thinking to the limits of language.

The attentive reader may have noticed that I spoke there of two kinds of transgressions of limits of language:

  1. A tendency to make a sweeping gesture and say, “Space is everywhere; it surrounds me.”
  2. A tendency to interpret the limit that is transgressed in (1), and which can be highlighted by saying, “Space does not exist in space,” as a profound truth indicating that space itself must be something hitherto unthought.

If space isn’t out there, surrounding me, then what is it? And thus one moves on, to explore this radical question about space in a hitherto unthought sense.

Both tendencies give rise to nonsense. I want to say that (1) gives rise to rather innocent nonsense talk. Almost anyone can feel the temptation to make that sweeping gesture, but it often ends there. Tendency (2), on the other hand, reveals a philosophically minded person, and it is only the beginning of a possibly life-long investigation.

Now, it has been argued, by Wittgensteinian philosophers, that there is only one kind of nonsense: pure nonsense (like “piggly wiggle tiggle”). But if we put nonsense in context and consider its manner of arising, then I believe we need to distinguish between at least two kinds of nonsense: in order to know what we deal with when we deal with philosophy.

Significant philosophers typically acknowledge the limit that we easily transgress; but their interpretation of it as “deep” turns it into a starting line for philosophy. And thus they transgress it anyway, but in their own way.

Pär Segerdahl

Minding our language - the Ethics Blog

Thinking to the limits of language… and then onwards

Pär SegerdahlI read last summer Immanuel Kant’s enormous work, Critique of Pure Reason. It struck me that one of the “methods” he uses could be described as: thinking to the limits of language.

How is such thinking done?

Like this, for example: I see a cloud in the sky and think that the cloud is up there (I indicate “where” with a pointing gesture). Thereafter, I think more abstractly that the same can be said about the part of space that the cloud fills. That part of space is also up there (I point again).

– But where is space itself, as a whole?

Here it is tempting to make a sweeping gesture and say, “Space is everywhere; it surrounds me.” But precisely that I cannot do, say or think. Because then I would treat space as if it were somewhere. I would treat space as if it existed, in space.

My thinking took me to a limit of language, which it is tempting to transgress. So far, so good. But then it struck me that Kant also has a definite interpretation of his method.

He interprets the limit he acknowledged as if it were fundamental and primary: as if it were a source that enables our seeing of clouds and other things (here and there). Space itself does not exist (in space): space is the possibility of seeing things (here and there). This possibility is subjective, “within us,” Kant says; but that cannot be meant in the ordinary spatial sense.

Kant thus interprets limits of language as sources. Speaking, writing and thinking about these sources, he develops purified philosophical prose. He develops extra-ordinary forms of language, possessing absolute authority since they speak of what comes first: the sources within us of what we ordinarily experience and chatter about.

So although Kant indeed acknowledges the limit (by pointing out that space does not exist in space), he nonetheless contrives esoteric language to systematically present its nature and function as a source. The limit inspires, as if it were a philosophical starting line.

Is there an alternative to Kant’s interpretation? The alternative is that the limits of language hold for all of us, not least as thinkers. Thinking to the limits of language, as we did, does not lead to sublime discoveries of “first truths,” although it sounds profoundly true to say: “space does not exist in space.”

Paradoxically, it is when we reach the limit, and acknowledge it as a limit, that the temptation to transgress it arises. For our acknowledgement of the limit appears profoundly true and worth its own investigation. It strikes us as an “original” truth preceding all ordinary truths about, for example, that cloud in the sky.

And in that spirit we move onwards, as if summoned by the perceived profundity of the limit.

Pär Segerdahl

The Ethics Blog - Thinking about thinking

The challenge to simulate the brain

Michele FariscoIs it possible to create a computer simulation of the human brain? Perhaps, perhaps not. But right now, a group of scientists is trying. But it is not only finding enough computer power that makes it difficult: there are some very real philosophical challenges too.

Computer simulation of the brain is one of the most ambitious goals of the European Human Brain Project. As a philosopher, I am part of a group that looks at the philosophical and ethical issues, such as: What is the impact of neuroscience on social practice, particularly on clinical practice? What are the conceptual underpinnings of neuroscientific investigation and its impact on traditional ideas, like the human subject, free will, and moral agency? If you follow the Ethics Blog, you might have heard of our work before (“Conversations with seemingly unconscious patients”; “Where is consciousness?”).

One of the questions we ask ourselves is: What is a simulation in general and what is a brain simulation in particular? Roughly, the idea is to create an object that resembles the functional and (if possible also) the structural characteristics of the brain in order to improve our understanding and ability to predict its future development. Simulating the brain could be defined as an attempt to develop a mathematical model of the cerebral functional architecture and to load it onto a computer in order to artificially reproduce its functioning. But why should we reproduce brain functioning?

I can see three reasons: describing, explaining and predicting cerebral activities. The implications are huge. In clinical practice with neurological and psychiatric patients, simulating the damaged brain could help us understand it better and predict its future developments, and also refine current diagnostic and prognostic criteria.

Great promises, but also great challenges ahead of us! But let me now turn to challenges that I believe can be envisaged from a philosophical and conceptual perspective.

A model is in some respects simplified and arbitrary: the selection of parameters to include depends on the goals of the model to be built. This is particularly challenging when the object being simulated is characterized by a high degree of complexity.

The main method used for building models of the brain is “reverse engineering.” This is a method that includes two main steps: dissecting a functional system at the physical level into component parts or subsystems; and then reconstructing the system virtually. Yet the brain hardly seems decomposable into independent modules with linear interactions. The brain rather appears as a nonlinear complex integrated system and the relationship between the brain’s components is non-linear. That means that their relationship cannot be described as a direct proportionality and their relative change is not related to a constant multiplier. To complicate things further, the brain is not completely definable by algorithmic methods. This means that it can show unpredicted behavior. And then to make it even more complex: The relationship between the brain’s subcomponents affects the behavior of the subcomponents.

The brain is a holistic system and despite being deterministic it is still not totally predictable. Simulating it is hardly conceivable. But even if it should be possible, I am afraid that a new “artificial” brain will have limited practical utility: for instance, the prospective general simulation of the brain risks to lose the specific characteristics of the particular brain under treatment.

Furthermore, it is impossible to simulate “the brain” simply because such an entity doesn’t exist. We have billions of different brains in the world. They are not completely similar, even if they are comparable. Abstracting from such diversity is the major limitation of brain simulation. Perhaps it would be possible to overcome this limitation by using a “general” brain simulation as a template to simulate “particular” brains. But maybe this would be even harder to conceive and realize.

Brain simulation is indeed one of the most promising contemporary scientific enterprises, but it needs a specific conceptual investigation in order to clarify its inspiring philosophy and avoid misinterpretations and disproportional expectations. Even, but not only, by lay people.

If you want to know more, I recommend having a look at a report of our publications so far.

Michele Farisco

We like challenging questions - the ethics blog

Idling normativity

Pär SegerdahlI recently wrote about the tendency of ethical practices to lose their vital functions and degenerate into empty rituals. Why is there such a tendency?

The tendency is not unique to ethics: it is everywhere.

Suddenly, patients and students are to be called “customers” and be treated “as” customers. This can be perceived as an imposed language, as empty rituals that demean all concerned.

Since the edict to treat a variety of relationships “as” customer relationships can be experienced as demeaning, expanding customer normativity has become a problem even where it has its rightful place: in our stores, where we really are customers.

A retail chain – I will not say which – is now instructing their employees to call their customers “guests” and to treat them “as” guests!

The retail chain “solves” the problem of expanding customer normativity by decreeing guest normativity at precisely the place where customer normativity should work authentically.

I don’t know why we so easily go astray in our own forms of normativity, but I have a name for the phenomenon: idling normativity.

Pär Segerdahl

Minding our language - the Ethics Blog

Openness as an ethical ritual

Pär SegerdahlBarbara A. Koenig wrote last year about how informed consent has acquired a “liturgical feel” in biomedical research ethics. Each time the protection of research participants is challenged by new forms of research, the answer is: more consent!

The procedure of informing and asking for consent may feel like assuming a priestly guise and performing an ethical ritual with the research participant.

The ritual is moreover sometimes practically impossible to implement. For example, if one is to inform participants in genetic research about incidental findings that might be made about them, so that they can decide whether they want to be re-contacted if researchers happen to discover “something” about them.

If it takes one hour to inform a patient about his or her actual genetic disease, how long would it take to inform a research participant of all possible kinds of genetic disease risks that might be discovered? Sorry, not just one participant, but hundreds of thousands.

How then can research participants be respected as humans, if informed consent has become like an empty ritual with the poor participant? (A ritual that in genetic research sometimes is impracticable.)

In the August issue of Nature, Misha Angrist suggests a solution: we treat participants as partners in the research process, by being open to them. How are we open to them? By offering them the researchers’ genetic raw data, which can be handed over to them as an electronic file.

Here we are not talking about interpreted genetic disease risks, but of heaps of genetic raw data that are utterly meaningless for research participants.

Openness often has important functions. Making scientific articles openly accessible so that everyone can read them has a function. Making researchers’ data available to other researchers so that they can critically review research, or use already collected data in new research, has a function.

But offering files with genetic raw data to research participants, what is its function? Is it really the beginning of a beautiful partnership?

Openness and partnership seem here to become yet another ethical ritual; yet another universal solution to ethical difficulties.

Pär Segerdahl

We think about bioethics : www.ethicsblog.crb.uu.se

When writing becomes investigating

Pär SegerdahlWe write for many reasons. To remember, to instruct, to tell, to amuse…

Sometimes we write to investigate. Investigate what? Of course, something that we don’t really understand and therefore wonder about.

Writing is also a prestigious linguistic medium. Printed products (books and articles) often express the opposite of incomprehension and wonder. This is not surprising, since the printed product is the end result of long work.

This creates problems for the investigating beginner. One of the difficulties of writing about difficult things is to dare express your lack of understanding. You have to put your finger (or pen tip, or keys) precisely on your incomprehension.

Instead, one tends to quickly write up an impressive facade that hides one’s incomprehension. One mimics the style of the finished printed matter. One then starts at the wrong end. One starts at the end.

If you just slow down and ask yourself: What do I really understand here? What don’t I understand? And then honestly write it down – in the form of questions – you soon begin to write in a way that explores what needs to be clarified.

The moment your writing makes contact with your incomprehension, the writing becomes explorative. It will also come alive, because you don’t write as if you already were finished with everything. You make discoveries and you change during the work.

I would liken it to daring to ski down the slopes for the first time and dare to trust that you can turn back and forth so as to maintain a speed that you yourself can keep up with.

The equivalent of “turning back and forth” are the questions you regularly ask based on your incomprehension. Without the questions, you soon rush downhill and risk breaking your neck.

To write in an explorative way is to think. Therefore, philosophy doesn’t resemble a profession, because here it is your lack of competence that drives the work.

Pär Segerdahl

The Ethics Blog - Thinking about thinking

Laboratories interpret genetic test results differently

Pär SegerdahlA new study suggests that the results of genetic tests are not always as reliable as we want to believe. A comparison between laboratories providing these tests shows that the same genetic variant can be interpreted differently.

A single gene variant can thus be interpreted as an increased risk of breast cancer by one laboratory, but as no increased risk by another.

Given that the results of genetic tests can motivate a person to undergo, or not undergo, preventive surgery, this is quite alarming.

Genetic risks are not literally written in our genes. They require interpreting the significance of different genetic variants. The interpretation requires research that can show whether the variant is associated with increased risk of disease or not.

Most variants cannot be interpreted at all. Many are so rare that there is no data to even begin interpreting their meaning.

If I understand correctly, interpretations differ partly because laboratories do not always share their data. Their interpretations are based on limited studies using their own data. Such studies may point in different directions.

In addition to emphasizing the importance of open data, all this shows that we cannot take genetic tests or effective healthcare for granted. They require ongoing research work with large amounts of data.

We easily neglect this: how research continuously underpins healthcare.

But even with better interpretations of genetic tests, it will be difficult to interpret what the results mean for the individual.

Genetic risk continues to be a complex concept.

Pär Segerdahl

Following the news - the ethics blog

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