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

Category: Musings (Page 14 of 18)

Open biobank landscapes

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogLast 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

We like broad perspectives : www.ethicsblog.crb.uu.se

Perplexed by autonomy

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogDuring the seminar this week we discussed an elusive concept. The concept is supposed to be about ordinary people, but it is a concept that ordinary people hardly use about themselves.

We talked about autonomy, which is a central notion in ethical discussions about how patients and research participants should be treated. They should be respected as persons who make their own decisions on the basis of information about the options.

The significance of this is evident if we consider cases where patients are given risky treatments without being informed about the risks and given the opportunity to refuse treatment. Or cases where vulnerable persons are forced to function as research subjects in various experiments.

“Respect people’s autonomy!” is comprehensible as a slogan against such tendencies.

What makes the concept more elusive, however, is that increasingly it is used more speculatively as the name of a valuable quality in the human, perhaps even the superior and most distinctive one. Instead of functioning as a comprehensible slogan in a real context, the notion becomes utopian, demanding that individuals constantly be informed about options and making decisions.

Autonomy becomes the superior imperative in all areas of human life.

Such a totalized imperative displaces the meaning of these areas of life, for example, the meaning of health care. Health care no longer seems being primarily about treating people’s diseases (while respecting their autonomy), but as being about developing diagnoses and treatments that give individual patients more information and options to choose between.

The concept of autonomy becomes a utopian construct that does not face the real-life challenges that made the slogan comprehensible, because it aims towards an ideal solution without need of the slogan. Every human practice is turned into an arena that first of all supports autonomy.

The speculative concept is somewhat self-contradictory, however, since it is imposed paternalistically as the essence of the human, while the humans concerned hardly use it to understand themselves. Well, then we’ll have to turn them into such individuals!

No, I confess I’m quite perplexed by the utopian-intellectual refinement of otherwise comprehensible slogans like autonomy, justice and freedom. These efforts appear like the noblest efforts of humankind, and yet they run amok with our words and displace the meaning of every human practice.

Pär Segerdahl

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

The claim of thoughtfulness

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogPhilosophy has an aura of pretentiousness. Philosophers seem to make such ambitious claims about the essence of everything. About morality, about mind, about language… usually without doing any empirical research!

From where do they derive their claims? Are they sitting in armchairs just awaiting “truths” from out of nowhere? Is philosophy a form of “easy science” where one goes straight to the results without doing the research work needed to substantiate them?

But there are certain peculiarities in the claims, and in the style of address, which disappear in this image of philosophy as “easy science.”

Researchers can write didactically, informing the reader about results of their research. Science writers thus typically adopt a “von oben” attitude that is perfectly legitimate, since research sheds light on states of things that are unknown to the reader.

If philosophers adopt the didactic style of a science writer, the result is comical: “My thought processes during the past ten years demonstrate that morality basically is…,” and then follows information about the essence of morality!

The image of philosophers as pretentious “armchair researchers” expresses this comedy.

Philosophers certainly make claims, but these are claims that can be questioned by a reader who thinks further than the author. Philosophical writers expect readers to make objections that possibly are as powerful as the writer’s own. This “detail” is overlooked in the image of the pretentious armchair philosopher.

Philosophical writers expose their entire thought processes, so that the reader can think with – and against – the author. Philosophical writers address readers as peers in thinking. Together, we think for ourselves.

Perhaps the claim of scientific expertise has become so dominant that we no longer hear the claim of thoughtfulness.

Pär Segerdahl

The Ethics Blog - Thinking about thinking

Better not to know? (by Mirko Ancillotti)

Inmirko-ethicsblog medical ethics a distinction is commonly made between negative and positive autonomy. One’s negative autonomy is exercised in refusing medical care or refusing some specific treatment. Positive autonomy is the right to choose a specific treatment (within what is available and allowed). Expressing a preference for not being informed about some medical condition seems to exercise negative autonomy.

Several criteria define the autonomy of a person in medical ethics, including knowledge. The knowledge a person has is not simply derived from the quantity of information made available, but by the real information that the subject is able to understand and use in the assessment. It can be said, then, that under this perspective, the more knowledge one has the more autonomous one is.

To illustrate the role of knowledge in autonomy, consider two couples with a family history of genetic diseases. In both cases the woman is pregnant. Couple 1 doesn’t want to make any genetic test, because “whatever the result we would never consider abortion an option.” Couple 1 has a set of values that is not compatible with abortion. Couple 2 has the same values and does not consider abortion as a feasible option. Nonetheless, couple 2 chooses genetic testing and the result of the test is a very high likelihood of an impaired offspring. Though knowing this, couple 2 decides to have the baby too.

The decision (to have the baby) of couple 1 and couple 2 is the same, but is reached through different paths. Couple 1 didn’t wish to know, it exercised a kind of negative autonomy. Couple 2 exerted a kind of positive autonomy deciding to gain knowledge about the condition (actual or likely) of its offspring. They displayed different attitudes toward knowledge, but both made a kind of autonomous choice. Couple 1 didn’t want to test its offspring, and one may be tempted to say that it didn’t put its values to test in the light of knowledge possible to attain, whereas couple 2 in testing its offspring also gauged the strength of the values on the basis of which they made their decision.

I would say that the couples’ first choices to know/not to know are equally autonomous. Henceforth, however, the couples’ paths diverge and couple 2’s final decision (to have the baby) is a more autonomous one, because it uses more relevant knowledge. Couple 1’s preference for negative autonomy (not to know) leads, on this account, to a less autonomous final decision (to have the baby).

Mirko Ancillotti

We like ethics : www.ethicsblog.crb.uu.se

Is it human fan club mentality?

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogPhilosophers often put humans on display as beings that have some unique quality, like rationality or conceptual powers. And conversely they present animals as beings that lack that quality.

What comparison underlies such a notion of “human positivity” and “animal negativity”?

One could suspect that the dualism arises through a human-centered comparison. As if intellectual football fans treated football as the sport with which all sports are to be compared, which would turn football into the sport that has the unique qualities of full-fledged sport, while all other sports are grouped together as hollow sports that lack what football has.

One could thus suspect that philosophy implicitly employs a human standard for its comparisons, as if philosophy was a human fan club, busy to secure power and exclusive membership rights.

I have my doubts, though, since football can be surveyed in a way that human life cannot be. It is hardly possible to place “us” at the center, since we don’t know who “we” are as football fans know what football is.

Whatever is placed at the center, it will have to be an idealization; not actual human lives.

This implies that the philosophical dualism might be unjust not only to animals, but also to humans who breathe and talk and live independently of philosophical ideals and claims about their essence.

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

Self-contradictions of anti-movements

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogOne cannot say, “I’m the humblest person in the world,” without displaying arrogance. One cannot protest, “How dare you call me arrogant? My whole life I’ve served individuals who don’t even deserve to tie my shoelaces!” without once again displaying arrogance.

Or listen to this: “Nothing is certain; here is the proof.”

Anti- and post-movements – anti-metaphysics, post-humanism etc. – display similar difficulties of avoiding comical self-contradiction. It is difficult to reject the grandiose ambitions of metaphysics to describe the world order, without trying to describe a world order that evades description.

That is to say: it is difficult to resist the temptation.

Rhetorically brilliant anti-metaphysicians compete contriving the most awe-inspiring neologisms to unveil the world’s essential evasiveness… a nomadic world of quasi-objects, hybridization and crossings of borders.

“How dare you call me a pretentious metaphysician? I know everything about the world’s inexplicability!”

Pär Segerdahl

The temptation of rhetoric - the ethics blog

Scholastic reasoning versus modern cell biology

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogEmbryonic stem cell research can find effective treatments for a wide range of currently untreatable diseases. No wonder embryonic stem cell research can be perceived as an important practice.

A human embryo can develop into someone’s child, who breathes, talks and lives. No wonder embryonic stem cell research can be perceived as a controversial practice.

What interests me here is how these two in my view humanly comprehensible perceptions of stem cell research are translated into an intellectual arena called “ethical debate.”

On this arena, forms of reasoning with different historical roots meet to combat each other. The idea is that here finally the issue shall be settled: is embryonic research, as a matter of fact, morally controversial, or is it not?

Or are we rather debating Aristotle versus modern cell biology?

Attempts to prove that the research is controversial bear witness of a legacy from the metaphysics of Aristotle. The human embryo is supposed to have a unique potentiality to become a person: a potentiality so actively present in the embryo that the embryo is to be understood as a “prenatal person” or as a “potential person.”

Attempts to disprove such scholastic claims instead rely on the latest scientific evidence in cell biology. In 2012, Shinya Yamanaka and John B. Gurdon were awarded the Nobel Prize in Medicine for their work on what is called “dedifferentiation.” Stem cells derived not from embryos but from, for example, skin cells can be genetically induced to regress into less differentiated states that in turn can differentiate into various directions.

These findings are invoked in an article in The American Journal of Bioethics to finally take leave of the argument from potentiality:

  • “Technically speaking, fertilized egg cells (earliest embryos), iPSCs (induced pluripotent stem cells), and skin cells are all potential ‘baby-precursors,’ in part due to modern cell biology.”

So much for the unique potentiality of the human embryo: a skin cell will suffice.

To what extent do such debates concern the two perceptions of stem cell research in their human comprehensibility?

Pär Segerdahl

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

Some considerations on the creation of artificial life (by Mirko Ancillotti)

mirko-ethicsblogIt is hard to understand and explain why new biotechnologies often are so upsetting. I am inclined to think that many people accord a special value to nature and to what is considered natural. This stance is held in spite of the fact that human beings have purposively modified nature, e.g., through the selection of plants, since they started with agriculture and breeding about 10,000 years ago. It should be admitted that these interferences have highly improved their (our) quality of life. Biotechnologies alter what is naturally occurring and these changes are felt as being particularly dangerous for human beings (directly or through fatal modifications of the environment). In my opinion, what is natural is morally neutral and it would be paradoxical to assume “naturalness” as a guiding principle.

The paper of Douglas, Powell, and Savulescu investigates whether the creation of synthetic life is morally significant and concludes that it is not. As mentioned in the original post, they consider three attempts to establish the moral significance of creating artificial life. I would like to focus on the third attempt, the one claiming uncertainty about the ontological and moral status of synthetic products because of their uncertain functional status.

The ontological status of synthetic products is regarded as being problematic because these products don’t clearly fit the organism-artifact dichotomy. The worry about ontological status is understood by the authors as a worry about functional status. According to the etiological account of functions, those expressed by an organism are the result of evolution and it can be thought that a living entity has an interest in expressing its functions, and be alive.

In what the authors call “Moral Prudentialism,” the moral status of an organism depends on interests and interests depend on functions. An artificial organism may have interests in remaining well-functioning, but what is problematic and gives rise to functional uncertainty is that its functions are not the result of evolution. Instead, they have been purposively designed and built into it by an external rational agent (an artificial organism’s function satisfy human purposes).

I agree with the authors in rejecting the attempt to give moral significance to the creation of artificial life on account of functional (and ontological) uncertainty. The moral assessment of an entity should be based on what the entity actually is and expresses. The etiological account of functions seems to be a poor help in assessing individuals, but I think that it should still be taken into account. Indeed, there is to consider the fact that synthetic organisms have not developed through natural or slightly modified (by humans) selection in an evolutionary equilibrium with other species and ecosystems (naturally occurring organisms are not necessary in harmonious equilibrium, but they are typically at least tolerated without provoking an ecological havoc).

If their genealogy is not considered a central factor in assessing their value or significance, it is nevertheless worth noting that, given the extreme potentialities of synthetic biology to give rise to forms of life completely different from existing ones (possibilities that are much more prominent than in genetic engineering), it seems reasonable to investigate the moral significance of creating artificial life by looking at the whole picture and not at the individual capacities of an organism considered in isolation.

Mirko Ancillotti (MA, Philosophy, CRB)

Human and inhuman

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogThe words “human” and “inhuman” are often used as moral judgments. For example: reasoning is (brilliantly) human; violence is (terribly) inhuman.

Such forms of speech are perfectly in order. Yet, we easily go astray if we use the same forms of speech in attempts to diagnose war and conflict, or the path to peace. (Which is extremely tempting, especially for sensible people.)

The human is purified as rational being. Violence and conflict are understood as results of inhuman interference with human reason. Can such idealized analysis illuminate real problems?

What occasions these thoughts is a review in the Guardian, which in terms of blogging was published ages ago. Stuff worth thinking about was written already in 2006. The British philosopher John N. Gray then reviewed Amartya Sen’s book, Identity and Violence: The Illusion of Destiny.

Sen explains violence between groups as caused by inhuman interference with what is properly human. A proper human makes rational choices in a plurality of group belongings. But ill-disposed propagandists make gullible people think that their human identity already is fixed through a singular group belonging. This short-circuits reason and causes them to blast car bombs and commit genocide against people with other narrowly defined identities.

Without denying the reality of identity-driven violence or the danger of propaganda, Gray questions the innocent intellectualism of Sen’s diagnosis. Sen makes it sound as if people resort to violence because a false theory of human nature was drummed into them. He presents violence as if it were caused by inhuman factors disturbing human nature.

But people hardly lynch each other because of “erroneous beliefs.” And the fear, despair and cruelty of their actions are only too deep-rooted human traits, Gray observes grimly.

It is difficult to think clearly about the human. Perhaps even Gray, in spite of his clear-sightedness, occasionally starts out from a moral delimitation of the human: a more disillusioned one that prefers blaming rather than exalting the human.

(Gray’s own new book, The Silence of Animals, was reviewed last summer by Thomas Nagel.)

Pär Segerdahl

Minding our language - the Ethics Blog

What are absolute borders made of?

I return to the question in my previous post. I was wondering why biotechnological developments repeatedly invite moral responses in terms of borders that shouldn’t be transgressed by humans. (Think of stem cell research using human embryos.)

What is fundamental in these responses? Is it the absolute border? Do people already have stable notions of borders that shouldn’t be transgressed by humans, as part of semi-metaphysical views of life? Do they respond, “Controversial!”, because they deem some new practice to be transgressing a border that already is in place within their view of life?

Or is the notion of the border itself part of the reaction? Is “the absolute border” reactive rather than the source of the reaction?

I’m inclined to say that the “absolute border” arises with and through the reaction. Let’s call it the intellectual part of the reaction. It is how the reaction presents itself as legitimate; it is how the reaction transforms itself into a reason against the new developments.

The notion of an “absolute border” is how the reaction translates itself into the “space of reasons.”

If so, the recurrent reaction is almost bound to misunderstand itself in accordance with my first suggestion: the border will be perceived as basic, and the reaction will present itself as rational verdict: “The absolute border is being transgressed here; therefore, a moral response is in order!”

We must not forget that entire views of life can be reactive. Even when they are beautiful and admirable human achievements, their function can be that of digesting reactions and providing them with meaning.

My conclusion is that if we want to understand these recurrent reactions, we must not be fooled by how they spontaneously translate themselves into “the space of reasons.” We need a practice of back-translation.

We seem bound to repeatedly misunderstand ourselves. Our much praised faculty of understanding easily becomes a faculty of misunderstanding.

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

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