Tag: bioethics (Page 8 of 10)

Culturally sensitive ethics

3 November, 2015 / Pär Segerdahl / 0 Comments

Health 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

Scientists shape how the media portray synthetic biology (by Mirko Ancillotti)

27 October, 2015 / Pär Segerdahl

Most of us learn about scientific developments through the media. Journalists and newspaper editors not only select what to bring to public attention but also the way the contents are conveyed. But how can we be sure that what they report is well researched?

There are some new studies on how media portray synthetic biology in different countries. It turns out that reports are both unbalanced and uncritical. Most of the stories use the same terminology, figures of speech and envision the same fields of application. This is because they rely on the same sources: press releases, press conferences or interviews with a few prolific American scientists, with Craig Venter doing the lion’s share. Stories are often optimistic and future oriented. The promising applications of synthetic biology are connected to subjects that people already prioritize like health and environment. But it also means that the possible risks are omitted or presented in a few choice words close to the end.

Scientists have a public role and a duty to perform science outreach and science communication in a responsible way. This duty is amplified by the interaction with mass media. Indeed, there are a number of national and international regulations and guidelines that provide indications on what kind of relationship and communication scientists should entertain with the media and what pitfalls they should avoid. Is it a problem that the media copy their framing and present the field with their words? If scientists can reach the public directly, does that mean that we should increase our demand on their communication? Maybe not. Managing to popularize and frame science in a way that attracts media’s attention and an inattentive and unengaged public is already a communications feat.

Journalists have ethical responsibilities and a strong professional ethics. This resounds in a remarkable amount of national and international guidelines and regulations. Did the journalists do a good job when they kept the message and vision the scientists provided and spread that to the public? Should we ask journalists to be more critical and filter the voice of the scientists involved?

Well, we would of course prefer to receive balanced information filtered by knowledgeable science journalists. But science news is not always handled by them. Perhaps the real problem is the logic of the current media landscape. There is no time to research a press-release: the news have to go out, otherwise someone will beat you to it. In the extreme, this logic allows for hoax press releases to become news (like the one that made the Emulex stock plummet in 2000). If we want journalists to do a good job, we have to give them time. Because the idea that media basically “retweet” what a few scientists and entrepreneurs decide is of course a bit disturbing.

If you are interested to read more about this topic have a look at Mirko Ancillotti’s recent publications:Uncritical and unbalanced coverage of synthetic biology in the Nordic press that was just published in Public Understanding of Science, or Synthetic Biology in the Press: Media Portrayal in Sweden and Italy.

Mirko Ancillotti and Josepine Fernow

The challenge to simulate the brain

7 October, 2015 / Michele Farisco / 0 Comments

Is 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

Ethics research keeps ethical practices alive (new dissertation)

25 August, 2015 / Pär Segerdahl / 0 Comments

I have in two posts complained about a tendency of ethical practices to begin to idle, as if they were ends in themselves.

A risk with the tendency is that bioethics is discredited and attacked as no more than an unhappy hindrance to novel research.

Like when Steven Pinker recently wrote that the primary moral goal for bioethics today should be:

Get out of the way!

But there is a way to go: self-scrutinizing ethics research.

Bioethics is often misunderstood as merely a fixed and finished framework of ethical rules, principles and review systems: as a cumbersome bureaucracy. I guess that is how Pinker understands it.

But first, the “framework” is the result of novel ethical thinking at a time when we had reason to rethink the position of science. Doing research is important, but it does not justify exploiting research participants. There are other values than Science, which scientists should take seriously.

Secondly, this ethical thinking will never be finished. There are always new problems to subject to self-scrutinizing ethics research.

Not infrequently these problems are occasioned by the bioethical framework. Pregnant women and children are routinely excluded from research, on ethical grounds. But does not the protection of these groups as research participants mean that they are exposed to risks as patients? If new drugs are tested only on adult males, we don’t know what doses a pregnant woman or an infant should receive.

We need self-critical ethics research, to keep ethics alive and to avoid idling.

Therefore, I formulate a different imperative than the one Steven Pinker suggests. Bioethics main goal should be: Think anew, reflect critically, do ethics research!

We follow that imperative at CRB. An example is Tove Godskesen’s thesis,

Patients in Clinical Cancer Trials: Understanding Motivation and Hope,

which will be defended on Friday, August 28, at 09:15, in room A1:107a at BMC (Biomedical Centre, Husargatan 3, Uppsala, Sweden).

This thesis is not about standing in the way of cancer research, but about doing empirical-ethical research to examine how well the ethical practices work when cancer patients are recruited as participants in such forms of research.

Do the patients understand the information they receive about the research? Do they understand that the possibility that they will be cured through research participation is extremely low? Do they understand that cancer research involves certain risks? Do they understand what a randomized study is?

And why do they volunteer as research participants? Because they hope for a new miracle drug? Because they want to help future patients? As thanks for the help they received? Because they feel a duty towards relatives, or because of (perceived) expectations from the doctor?

All these questions are empirically studied in the thesis.

Godskesen’s dissertation also contains reflections on the concept of hope. Her empirical studies show that it is precisely the patients with the least chance to be cured – those who don’t have much time left, and who usually are asked to participate in Phase 1 clinical studies – who primarily are motivated by the hope of a cure, at the last moment.

How should we view this fact? Does it mean that these participants misunderstand the study they have chosen to participate in, and thus participate on false premises? Or is it a hope which gives meaning at the end of life, a hope which might be nourished even if you understand the study design?

These are questions we cannot “step out of the way” of. Tove Godskesen does not step out of their way. Come and listen on Friday (but observe that the examination will be conducted in Swedish)!

Pär Segerdahl

Where is consciousness?

26 May, 2015 / Michele Farisco / 0 Comments

Would it be possible to use brain imaging techniques to detect consciousness and then “read” directly in people’s brains what they want or do not want? Could one, for example, ask a severely brain injured patient for consent to some treatment, and then obtain an answer through a brain scan?

Together with the philosopher Kathinka Evers and the neuroscientist Steven Laureys, I recently investigated ethical and clinical issues arising from this prospective “cerebral communication.”

Our brains are so astonishingly complex! The challenge is how to handle this complexity. To do that we need to develop our conceptual apparatus and create what we would like to call a “fundamental” neuroethics. Sound research needs solid theory, and in line with this I would like to comment upon the conceptual underpinnings of this ongoing endeavor of developing a “fundamental” neuroethics.

The assumption that visualizing activity in a certain brain area can mean reading the conscious intention of the scanned subject presupposes that consciousness can be identified with particular brain areas. While both science and philosophy widely accept that consciousness is a feature of the brain, recent developments in neuroscience problematize relating consciousness to specific areas of the brain.

Tricky logical puzzles arise here. The so called “mereological fallacy” is the error of attributing properties of the whole (the living human person) to its parts (the brain). In our case a special kind of mereological fallacy risks to be embraced: attributing features of the whole (the brain) to its parts (those visualized as more active in the scan). Consciousness is a feature of the whole brain: the sole fact that a particular area is more active than others does not imply conscious activity.

The reverse inference is another nice logical pitfall: the fact that a study reveals that a particular cerebral area, say A, is more active during a specific task, say T, does not imply that A always results in T, nor that T always presupposes A.

In short, we should avoid the conceptual temptation to view consciousness according to the so called “homunculus theory”: like an entity placed in a particular cerebral area. This is unlikely: consciousness does not reside in specific brain regions, but is rather equivalent to the activity of the brain as a whole.

But where is consciousness? To put it roughly, it is nowhere and everywhere in the brain. Consciousness is a feature of the brain and the brain is more than the sum of its parts: it is an open system, where external factors can influence its structure and function, which in turn affects our consciousness. Brain and consciousness are continually changing in deep relationships with the external environment.

We address these issues in more detail in a forthcoming book that I and Kathinka Evers are editing, involving leading researchers both in neuroscience and in philosophy:

Neurotechnology and Direct Brain Communication (Routledge)

Michele Farisco

Neuroethics: new wine in old bottles?

7 April, 2015 / Michele Farisco / 0 Comments

Neuroscience is increasingly raising philosophical, ethical, legal and social problems concerning old issues which are now approached in a new way: consciousness, freedom, responsibility and self are today investigated in a new light by the so called neuroethics.

Neuroethics was conceived as a field deserving its own name at the beginning of the 21st century. Yet philosophy is much older, and its interest in “neuroethical” issues can be traced back to its very origins.

What is “neuroethics”? Is it a new way of doing or a new way of thinking ethics? Is it a sub-field of bioethics? Or does it stand as a discipline in its own? Is it only a practical or even a conceptual discipline?

I would like to suggest that neuroethics – besides the classical division between “ethics of neuroscience” and “neuroscience of ethics” – above all needs to be developed as a conceptual assessment of what neuroscience is telling us about our nature: the progress in neuroscientific investigation has been impressive in the last years, and in the light of huge investments in this field (e.g., the European Human Brain Project and the American BRAIN Initiative) we can bet that new striking discoveries will be made in the next decades.

For millennia, philosophers were interested in exploring what was generally referred to as human nature, and particularly the mind as one of its essential dimensions. Two avenues have been traditionally developed within the general conception of mind: a non-materialistic and idealistic approach (the mind is made of a special stuff non-reducible to the brain); and a materialistic approach (the mind is no more than a product or a property of the brain).

Both interpretations assume a dualistic theoretical framework: the human being is constituted from two completely different dimensions, which have completely different properties with no interrelations between them, or, at most, a relationship mediated solely by an external element. Such a dualistic approach to human identity is increasingly criticized by contemporary neuroscience, which is showing the plastic and dynamic nature of the human brain and consequently of the human mind.

This example illustrates in my view that neuroethics above all is a philosophical discipline with a peculiar interdisciplinary status: it can be a privileged field where philosophy and science collaborate in order to conceptually cross the wall which has been built between them.

Michele Farisco

Bioethics behind the facade: research and new thinking

28 January, 2015 / Pär Segerdahl / 0 Comments

The finished result easily becomes a picture of the process of achieving it. For example: We hear a Beethoven symphony and think that the genius had this magnificent composition in his head. He just needed to write it down.

As if the result existed from the beginning and only needed to be put on paper. I don’t know much about Beethoven’s working process, but doubt that it consisted in writing down already completed symphonies. Maybe, during a walk, a tiny idea entered his mind: a theme that made an impression on him, but that definitely was not the finished symphony. Thereafter, he explored the theme, attentive to where it wanted to go and letting it evolve in different forms and variations. Maybe he examined the theme at the piano.

Only gradually did this creative work shift to actually sitting down and composing. But still, as an exploration of the theme, albeit in the final phase of the process. And maybe it turned out that the theme worked better for a string quartet instead.

Bioethics is often misunderstood as we misunderstand Beethoven. We identify bioethics (and research ethics) with the finished result: with ethical guidelines, with the declaration of Helsinki, with models of consent, with the system of ethical review etcetera.

Bioethicists then appear like people who just put ethical rules on paper and establish bureaucratic systems to check that they are followed by researchers.

Bartha M. Knoppers recently questioned that image, in an article with the significant title:

Does policy grow on trees?

Ethical frameworks for biomedical research originate in processes of ethical research and thinking, often in dialogue with researchers in the field, and with patients and the public. Behind the facade, bioethics is an art of conversation as well as explorative research and new thinking. This work is not the least self-critical, for the ethical frameworks need to be constantly modified and sometimes partially dismantled.

An example of this work behind the facade is a new book on the regulation of biobanking, edited by Deborah Mascalzoni at CRB:

Ethics, Law and Goverance of Biobanking

In this book, a number of researchers present their explorations. It gives you insight into the work processes and the conversations and debates behind the regulation of research.

One principal problem raised in the book is that regulatory systems have become increasingly complex and opaque. Should we then create even more regulation?

Deborah Mascalzoni thinks that ethical research is more than just researchers following rules written by bioethicists. Instead of facing new challenges with even more regulation, she points out that all of us can think ethically, and that scientists have a moral responsibility to reflect on how they develop their research practices.

Ethics need not be a burden for research but can be a living concern within it. It can grow and flourish with the research practices, if we dare to do what Beethoven did: trust that seemingly insignificant thoughts and ideas can grow into something beautiful and real.

Pär Segerdahl

The Ethics Blog soon as a book

15 October, 2014 / Pär Segerdahl / 0 Comments

As you may have noticed, I have for some time not posted quite as often as before. That is because I’m right now compiling previous posts, turning the Ethics Blog into a book.

I thought it would go quickly to make a blog book. But it takes time to choose appropriate texts and arrange them around different themes. And then edit the texts so they are nice to read in printed form.

Actually, I’m working on two books. There is a Swedish version of the Ethics Blog: “Etikbloggen” (link in the right margin). The text for the English book was sent to a graphic designer just a while ago. It will be exciting to see the results!

Both books will be printed in December. Hopefully we can also make them available in PDF format.

Now you know! Perhaps posting will be a bit sporadic for a few weeks, while I continue to work with the text for the Swedish blog book.

Pär Segerdahl

Does bioethics understand the family?

30 September, 2014 / Pär Segerdahl / 0 Comments

Traditional bioethics does not pay sufficient attention to the role that family relationships can play, for example, in decisions about organ donation. New opportunities in healthcare create moral problems that bioethics therefore cannot identify and manage. To identify and understand these moral problems requires a specific ethics of families, writes among others Ulrik Kihlbom in an article in the Journal of Medical Ethics.

The authors are members of the “Network on ethics of families.” In the article, they use a striking example of a moral problem that becomes invisible in standard bioethics. I believe the example is authentic.

Annie’s brother Stewart has kidney problems. Annie would like to donate one of her kidneys to her brother, but cannot because she does not have matching blood or tissue type. Thanks to a new healthcare initiative, she can however join a donor pool. If the computer can identify a suitable person in the pool who can receive her kidney and another suitable person who can donate a kidney to her brother, the result is the same: Annie donates, Stewart receives.

But Annie does not perceive it as the same thing. She cannot explain why she suddenly becomes hesitant to donate her kidney, when the healthcare team treats indirect donation to the brother via the pool as completely analogous to direct donation to her brother.

Annie does not reason according to the professional logic that the healthcare team and many bioethicists use. She is willing to donate a kidney to her brother. To donate to a stranger to thereby enable her brother to get a kidney is not the same thing.

Understanding Annie’s problems with the healthcare team’s proposal requires a different form of ethical thinking, a family ethics.

Another aspect of Annie’s willingness to donate a kidney to her brother that is made invisible by traditional bioethics is its unconditional character. Donating an organ to a needing member of the family can strike families as a given responsibility. They can feel they have no choice. This is difficult to understand from a traditional bioethical perspective that emphasizes individuals’ autonomous and rational choices between alternatives.

I would like to add that the professionally well-motivated donor pool possibly even plays on the family ethics that one does not understand. Are not new donors recruited by appealing to the unconditional willingness to donate within the family?

The article moreover contains a discussion about problems of justice, requiring a perspective from family ethics to be seen. Read it!

Pär Segerdahl

Open biobank landscapes

14 May, 2014 / Pär Segerdahl / 0 Comments

Last week I wrote about the transition from organizing science as a tree of knowledge that once in a while drops its fruits onto society, to organizing research as part of knowledge landscapes, where the perspective of harvesting, managing and using the fruits is there from the beginning.

That the proud tree is gone might seem sad, but here we are – in the knowledge landscape, and I believe the development is logical. As a comment to the previous post made clear, many fruits fell from the old tree without coming into use.

The notion of knowledge landscapes sheds light on the attempt by BBMRI.se to build infrastructure for biobank research. The initiative can be viewed as an attempt to integrate research in broader knowledge landscapes. Supporting research with an eye to the interests of patients is a new way of managing research, more oriented towards the fruits and their potential value for people than in the era of the tree of knowledge.

The novelty of the infrastructural approach to biobanking isn’t always noticed. In Sweden, for example, the biobank initiative LifeGene was met with suspicion from some quarters. In the debate, some critics portrayed LifeGene as being initiated more or less in the interest of a closed group of researchers. Researchers wanted to collect samples from the population and then climb the tree and study the samples for god knows which purposes.

Those suspicions were based on the old conception of science as a high tree, inaccessible to most of us, in which researchers pursue “their own” interests. The aim with LifeGene, I believe, is rather to integrate research in a knowledge landscape, in which research is governed more by the interests of patients.

We mustn’t underestimate the challenges such a reorganization of research has to deal with, the forces that come into play. I merely want to suggest a new way of surveying and thinking about the transition – as a change from approaching science as a high tree of knowledge to integrating research in open knowledge landscapes.

If you want to read more about research in knowledge landscapes, you find Anna Lydia Svalastog’s article here, and the network where these ideas originated here.

In September 2014, the third conference, HandsOn: Biobanks, is organized, now in Helsinki. Academics, industry, doctors, patient groups, policy makers, public representatives and legislators are invited to share knowledge and experiences. As in previous conferences in the series, there is an interactive part, The Route, in which biobanking processes can be followed from start to finish, with ample opportunities for discussion.

View the conference as part of maintaining open biobank landscapes, with research as one of several integrated components.

Registration is open.

Pär Segerdahl

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Tag: bioethics (Page 8 of 10)

Culturally sensitive ethics

Scientists shape how the media portray synthetic biology (by Mirko Ancillotti)

The challenge to simulate the brain

Neuroethics: new wine in old bottles?

Bioethics behind the facade: research and new thinking

The Ethics Blog soon as a book

Does bioethics understand the family?

Open biobank landscapes

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