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

Category: Musings (Page 16 of 18)

Ethical principles causing moral hallucinations

I want to continue the discussion in my previous blog post. It concerned an article raising the question whether researchers in genomics have a duty to actively look for incidental findings.

Joanna Forsberg aptly remarked that the notion of looking for findings that one isn’t looking for is strange. She also pointed out that healthcare doesn’t have a duty to look for incidental findings:

  • “In fact, in the context of healthcare incidental findings are (in general) deliberately avoided, by not doing tests when there is no clinical reason to do them. Is the duty of care more extensive in biobank research?”

This pertinent remark ought to worry ethicists. How can the ethical debate have reached a point where it is asked if researchers have duties to provide more healthcare than healthcare itself?

I couldn’t free myself from this problem that Joanna’s remark revealed.

I now believe it has do with the professionalization of ethics. It has become the ethicists’ professional duty to apply ethical principles to medical research. This works tolerably as long as it is possible to identify the traits that make the principles applicable. The application of the principle of beneficence, for example, presupposes that one can identify beneficial traits.

The reason why incidental findings in biobank research are debated so hotly, it seems to me, is precisely the difficulty of identifying traits in this complex terrain to which relevant ethical principles are applicable. Ethicists try hard to find aspects of genetic risk information and participation in biobank research that would make it possible to apply the principles of

  • respect for persons
  • beneficence
  • non-maleficence
  • reciprocity

so that the ethicists can fulfill their professional duty to guide biobankers by proposing an ethical policy for incidental findings.

The risk, however, when ethical principles are applied in desperation precisely because their application is unclear is that the principles begin to steer the description of reality… and to such an extent that they make us hallucinate moral duties.

I think that Joanna’s remark should act as a reminder of that risk.

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

Public ethics and human morality

Is ethics universally valid or can we act differently as moral individuals than as ethical representatives of public institutions?

I just read a well-argued article in Science Policy Forum, discussing whether patients should be paid for their tissue. As their point of departure, the authors cite the (by now) famous case of Henrietta Lacks.

Contrary to the many readers and reviewers of the bestseller who thought that Henrietta Lacks was exploited by the medical establishment, the authors arrive at the following conclusion. In cases similar to that of Henrietta Lacks, patients (or their families) are NOT entitled to payment for their tissue. – Why not?

First of all, there are no property rights for human bodies, people don’t own the tissue they leave: no one has the right to demand payment for their tissue.

People should, however, be compensated for the effort of giving the tissue. But there is no such effort associated with patient samples, since the samples were taken for the sake of caring for the patients. There is no effort to compensate for.

But what about the revenue generated by the tissue? Can people make millions of dollars on patients’ cells, as in the Henrietta Lacks case, without sharing the profits with the patients (or with their families)?

Once again, the authors argue convincingly that patients have no right to demand payment or part of revenue streams. The tissues are only raw material for developing cell lines. It is the intellectual work of the investigators that creates value. Moreover, since so few donors have tissue that can be used to generate profitable medical products, the end result of trying to be fair by sharing profits with these few lucky donors would be injustice vis-à-vis the majority of donors.

What interests me here is that although I consider the ethical policy proposed in the article as well-argued and right, I can still understand if a morally concerned individual saw injustice in a case like that of Henrietta Lacks and decided to donate money to her family.

Consider this passage from the article:

  • “Christoph Lengauer, a cancer drug developer and former Hopkins faculty member, articulated this sense of inequity when he reportedly told Lacks’s daughter that he thought Hopkins had ‘screwed up’ by not sharing some of the proceeds from the HeLa cell line with the Lacks family.”

The Science Policy Forum article demonstrates that this accusation is not as reasonable as it might seem.

Still, if a concerned individual (like Lengauer) saw injustice in a destiny like that of Henrietta Lacks and personally donated money to the family, I think I could see that as a perfect moral action and not necessarily as deluded.

Can one appreciate the ethical arguments for a policy not to pay patients for their tissue, and still, as an individual, experience injustice and personally donate money?

Unless we demand that human beings should be like representatives of public institutions through and through, I think we can admit such a possibility. It would even make me uncomfortable if we didn’t acknowledge such freedom.

Pär Segerdahl

We like challenging questions - the ethics blog

Human and animal: where is the frontline?

Yesterday I read Lars Hertzberg’s thoughtful blog, Language is things we do. His latest post drew my attention to a militant humanist, Raymond Tallis (who resembles another militant humanist, Roger Scruton).

Tallis published Aping Mankind: Neuromania, Darwinitis and the Misrepresentation of Humanity. He summarizes his book in this presentation on YouTube.

Tallis gesticulates violently. As if he were a Knight of the Human Kingdom, he defends humanity against an invasion of foreign neuroscientific and biological terms. Such bio-barbarian discourses reduce us to the same level of organic life as that of the brutes, living far away from civilization, in the rainforest and on the savannah.

Tallis promises to restore our former glory. Courageously, he states what every sane person must admit: WE are not like THEM.

Tallis is right that there is an intellectual invasion of biological discourses, led by generals like Richard Dawkins and Daniel Dennett. There is a need to defend one. – But how? Who would I be defending? Who am I, as a human? And where do I find the front line?

The notions of human life that Tallis defends are the ordinary ones belonging to everyday language. I have the impression, though, that Tallis fails to see the material practices involved in language use. Instead, he abstracts and reifies these notions as if they denoted a sublime and self-contained sphere: a uniquely human subjectivity; one that hopefully will be explained in the future, when the proper civilized terms of human intentionality are discovered. – We just have not found them yet.

Only a future genius of human subjectivity can reveal the truth about consciousness. Peace in the Human Kingdom will be restored, after the wars of modernity and bio-barbarism.

Here are two examples of how Tallis reifies the human world as a nature-transcendent sphere:

  • “We have stepped out of our organic body.”
  • “The human world transcends the organism Homo sapiens as it was delivered by Darwinian evolution hundreds of thousands of years ago.”

Once upon a time we were just animals. Then we discovered how to make a human world out of mere animal lives. – Is this a fairy tale?

Let us leave this fantasy and return to the forms of language use that Tallis abstracts and reifies. A striking fact immediately appears: Tallis is happy to use bio-barbarian discourse to describe animal lives, as if such terms literally applied to animals. He uncritically accepts that animal eating can be reduced to “exhibiting feeding behavior,” while humans are said to “dine together.”

The fact, then, is that Tallis does not see any need to pay closer attention to the lives of animals, or to defend animals against the bio-barbarism that he fights as a Knight of the Human Kingdom.

This may make you think that Tallis at least succeeds to restore human glory; that he fails only on the animal front (being, after all, a humanist). But he fails to pay attention also to what is human. Since he abstracts and reifies the notions of human life, his dualistic vision combines bio-barbarian jargon about animals with phantasmagoric reifications of what is human.

The front line is in language. It arises in a failure to speak attentively.

When talking about animals is taken as seriously as talking about humans, we foster forms of sensitivity to hum-animal relations that are crushed in Raymond Tallis’ militant combination of bio-barbarian discourses for animals with fantasy-like elevations of a “uniquely human world.”

The human/animal dichotomy does not reflect how the human world transcends the animal organism. It reflects how humanism fails to speak responsibly.

Pär Segerdahl

Minding our language - the Ethics Blog

Moral tipping points

Yesterday, I read a thought-provoking article about biosecurity. It suggested novel ways of thinking about infectious diseases. According to traditional thinking, infectious diseases strike us from outside. Therefore, we protect us from such external threats by building more effective borders. We secure pure healthy spaces and protect these spaces from impure, diseased ones.

The alternative thinking is less geometrically oriented and does not make a sharp distinction between “pure” and “diseased” spaces. Here is an illustration. If I understood the article right, a certain microbe, Campylobacter, is typically present in the microbial flora of farmed chickens. This bacterium does not become a health threat until there is a balance shift in the chickens’ intense relations with their farm circumstances.

Campylobacter “infection” in chickens, then, does not necessarily occur from outside, since the microbe always is present, but through balance shifts at what the authors called “tipping points.”

I was struck by the notion of tipping points. They remind me of processes of moral change:

It is well-known, to most of us at least, that our moral perceptions sometimes undergo dramatic change. Consider the following example, discussed in our CRB seminar series earlier this autumn: sex disambiguation surgery on newborns, when their sex cannot be unequivocally determined by a doctor.

Our present social circumstances are such that being boy or girl, being man or woman is profoundly significant. Being neither, or both, is being in trouble. Legally, for example, you must be male or female, and that’s only one aspect of the demand.

If we live in happy balance with these circumstances, sex disambiguation surgery might strike us as a blessing. Through surgery, the child is “helped” towards becoming unambiguously boy or girl. This is of such importance that “correction surgery” can be allowed even on newborns that haven’t yet developed their way of being in the world. Early surgery might even be preferable.

If, in the other hand, there is a balance shift; if we open ourselves to the possibility that present circumstances can be troublesome and changed – must we legally be male or female? – a tipping point may occur where the helpful correction of a bodily deformation can start to look like… genital mutilation performed to adapt newborns to our culture’s heterosexual norms and dualistic beliefs.

The new ideas may appear foreign to the old ones, as if they came from outside: what have we been reading lately? But they need not be as foreign as they appear and they need not enter our thinking “from outside.” Moral thinking is in dynamic relationships with our circumstances: if these relationships shift, so may our moral perceptions.

At moral tipping points what previously was perceived as “helping” may suddenly look like “mutilating.” What previously was “reality” may turn into “culture” and further into “norms and beliefs.” Changes at moral tipping points can be dramatic, which fools us into thinking that the new ideas necessarily entered our territory from another moral space. But they emerged right here, in our exchanges with our own circumstances.

Why is this important?  I think it suggests paths beyond the age-old relativism-versus-absolutism controversy.

We habitually view opposed moralities as distinct; simply distinct. You have one view on the matter; I have another. When I heard about tipping points, it struck me that opposed moral views often are dynamically connected: one view becomes the other at the tipping point.

Thinking in terms of tipping points can negotiate some sort of peace between standpoints that otherwise are exaggerated as if they belonged to opposed metaphysics.

Someone who speaks of male and female as realities is not necessarily in the grips of the metaphysics of substance, as Judith Butler supposes, but may speak from the point of view of being in untroubled balance with present circumstances.

Someone who speaks of male and female as produced by norms is not necessarily in the grips of relativistic anti-metaphysical doctrines, as realist philosophers would suppose, but may speak at a tipping point where the balance with present circumstances shifted and became troubled.

My proposed tipping point negotiation of peace between apparently foreign moral views and stances does not make the opposition less real; it only avoids certain intellectualist exaggerations and purifications of it.

Moral language functions differently when the circumstances are untroubled compared to when they are troubled. Moral thinking is in dynamic relationships with the world (and with how we inhabit it).

Pär Segerdahl

The Ethics Blog - Thinking about thinking

Logical laws and ethical principles: appendices to human reasoning

We tend to view logical laws and ethical principles as foundational: as more basic than ordinary discourse, and “making possible” logical and ethical reasoning. They set us on the right intellectual path, so to speak, on the most fundamental level.

I want to suggest another possibility: logical laws and ethical principles are derived from ordinary discourse. They constitute a schematic, ideal  image of what it means to make truth claims, or ethical claims, in our language. They don’t make the claims and forms of reasoning possible, however, but reflect their familiar presence in daily discourse.

Consider the logical law of non-contradiction, which states that a proposition and its negation cannot both be true simultaneously. Does this law implicitly set us on the path of non-contradictory talk, from morning to night? Or does it have another function?

Here is an alternative way of thinking about this “law of thought”:

The impression that others contradict themselves is not uncommon. When this occurs, we become uncertain what they actually say. We ask for clarifications until the sense of contradiction disappears. Not until it disappears do we recognize that something is being said.

The law of non-contradiction reflects this general feature of language. As such a reflection, however, it is derived from language and doesn’t function as a foundation of human truth-telling.

I want to make a similar proposal for ethical principles. Ethical principles – for example, of beneficence or respect for persons – reflect how people already view certain aspects of life as morally important and use them as reasons.

Ethical principles don’t “make” these aspects of life moral reasons. They just highlight, in semi-bureaucratic language, the fact that they are such reasons for people.

Consider this way of reasoning, which is perfectly in order as it stands:

  • (A) “I helped you; therefore you should help me.”

This moral reasoning is familiar to all of us. Its presence could be acknowledged in form of an ethical principle, P; a Principle of Reciprocity (“Sacrifices require services in return” etc.).

According to the view I want to leave behind, the fact that I helped you doesn’t constitute a reason until it is linked to the ethical principle P:

  • (B) “I helped you; according to Principle P, you therefore should help me.”

Ethicists typically reason the latter way, (B). That is alright too, as long as we are aware of its derived nature and don’t believe that (B) uncovers the hidden form of (A).

Ethical principles summarize, in semi-legislative language, how humans already reason morally. They function as appendices to moral reasoning; not as its backbone.

Why do we need to be aware of the derived nature of ethical principles? Because when we genuinely don’t know how to reason morally – when there are no convincing arguments of kind (A) – it is tempting to use the principles to extrapolate moral arguments of kind (B)… appendices to claims that no one makes.

Viewing ethical principles as foundational, we’re almost forced to turn to them for guidance when we are in genuine moral uncertainty. But perhaps we should rather turn to the real-life features that are at stake. Perhaps we should focus our attention on them, try to understand them better, engage with them… and wait for them to become moral reasons for us in ways we might not be able to anticipate.

As a result of this open-ended process of attentive and patient moral thinking, ethicists may discover a need for new ethical principles to reflect how forms of moral reasoning change in the process, because new aspects of life became moral reasons for us when we attended to them.

Consider as an example the ethical problem whether incidental findings about individual participants in biobank research should be returned to them. At this very moment, ethicists are working hard to help biobankers solve this genuinely difficult problem. They do it by exploring how our present canon of ethical principles might apply to the case.

Is that not a little bit like consulting a phrase book when you discover that you have nothing to say?

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

Research for the sake of the patient

We regularly tell strangers about sensitive aspects of our lives. We do it every time we visit the doctor. We do it without hesitating, in spite of the fact that the information won’t stay with the doctor to whom we give it.

The information is archived and will be read by health care staff in the future, when we visit a hospital again. As patients, we are satisfied with this state of affairs. Typically, we are happy that our samples are saved for future use, and that research is being done on our data to improve the quality of the care.

It is obvious to us that these actions are taken for our sake as patients, or as future patients.

However, when the same kind of data is collected for similar overall purposes, but outside of the health care sector, in the construction of biobanks and registers for future medical research, it suddenly becomes more tempting to worry about the safety of our data.

In spite of the fact that the researchers’ information about us

  1. normally is less comprehensive than in the doctor’s journal,
  2. is coded so that the connection to us is as safe as in a bank vault,
  3. isn’t used to do research on us individually, but to explore human patterns of disease,

a tendency to imagine nightmarish scenarios of surveillance appears. – Why?

One reason could be an assumption that researchers only want to answer their own questions. They don’t do research for our sake. They are curious and need our support to realize their own research goals.

Another reason could be an assumption that if medical research has commendable purposes related to health and health care, these purposes are very general and societal: Improved Public Health; Decreased Health Care Costs; A Flourishing Pharmaceutical Sector etc.

Who cares about little me?

When I visit the doctor, the connection to my own health and care is obvious. When I donate blood to the biobank for future research, on the other hand, the connection to me as a patient, or as a future patient, is less obvious.

Still, today’s health care depends on yesterday’s research.

The information I give the doctor would not help me a bit as a patient, if millions had not already provided medical research with their data. My doctor wouldn’t even be able to suggest a diagnosis, or recommend an effective treatment.

I believe we need to defuse the issue of personal data in biobanks and research registers; calm down our tendency to think that the information is collected without regard to us, and for wholly different purposes than in health care. Even in research, our data are collected for our sake: so that we, the day we visit the hospital and tell the doctor about our troubles, can expect well-founded diagnoses and effective treatments.

If you want to reflect more about our interest as future patients that there is ongoing biobank and register research, I want to recommend a coming dissertation:

  • Biobank Research – Individual Rights and Public Benefit

Author is Joanna Stjernschantz Forsberg at CRB, who defends her dissertation the 6th of October in Uppsala.

I also want to recommend the interactive conference, HandsOn: Biobanks, in Uppsala 20-21 September, which tries to illuminate the values of biobanking. You can register for the conference until the 11th of September.

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

Genetic exceptionalism and unforgivingness

What fuels the tendency to view genetic information as exceptionally private and sensitive? Is information about an individual’s genetic disposition for eye color more sensitive than the fact that he has blue eyes?

In Rethinking Informed Consent in Bioethics, Neil C. Manson and Onora O’Neill make heroic efforts against an avalanche of arguments for genetic exceptionalism. For each argument meant to reveal how uniquely private, how exceptionally sensitive, and how extraordinarily risky genetic information is, Manson and O’Neill find elucidating examples, analogies and comparisons that cool down tendencies to exaggerate genetic information as incomparably dangerous.

What fuels the exceptionalism that Manson and O’Neill fight? They suggest that it has to do with metaphors that tempt us to reify information; temptations that, for various reasons, are intensified when we think about DNA. Once again, their analysis is clarifying.

Another form of genetic exceptionalism strikes me, however; one that has less to do with information. I’m thinking of GMO exceptionalism. For thousands of years, humans improved plants and animals through breeding them. This traditional way of modifying organisms is not without environmental risks. When analogous risks appear with GMO, however, they tend to change meaning and become seen as extraordinary risks, revealing the ineradicable riskiness of genetic manipulation.

Why are we prepared to embrace traditionally modified organisms, TMO, when basically the same risks with GMO make us want to exterminate every genetically manipulated bastard?

Unforgivingness. I believe that this all-too familiar emotional response drives genetic exceptionalism, and many other forms of exceptionalism.

Consider the response of becoming unforgiving. Yesterday we laughed with our friend. Today we learn that he spread rumors about us. His familar smile immediately acquires a different meaning. Yesterday it was shared joy. Today it is an ugly mask hiding an intrinsically untrustworthy individual who must be put in quarantine forever. Every trait of character turns into a defect of character. The whole person becomes an objection; an exception among humans.

Manson and O´Neill are right when they analyze a tendency to reify information in genetic exceptionalism. But I want to suggest that what fuels this tendency, what makes us more than willing to yield to the temptation, is an emotional state of mind that also produces many other forms of exceptionalism.

We need to acknowledge the emotional dimension of philosophical and ethical thinking. We don’t think well when we are unforgiving towards our subject matter. We think dogmatically and unjustly.

In their efforts to think well about genetic information, Manson and O’Neill can be understood as doing forgiveness work.

They calm us down and patiently show us that our friend, although he sometimes does wrong, is not that intrinsically bad character we want to see him as, when we are in our unfortunate unforgiving state of mind.

We are helped towards a state of mind where we can think more freely and justly about the risks and benefits of genetics.

Pär Segerdahl

We want to be just - the Ethics Blog

Ethics before the event

It is easy to be wise after the event. This easily accessible form of wisdom is also a painful accusation: you should have been wise before the event.

If you are extremely sensitive to the pain of these attacks, you might want to become someone who always is “wise before the event.” If you let your life be governed by such an ideal, you’ll become an ethical perfectionist.

Ethical perfectionism may seem like the most demanding form of ethical attitude. If it derives from oversensitivity to the pain of being wise after the event, however, which is ridiculously easy, I’m more doubtful about the value of this attitude.

The ethical perfectionist runs the risk of avoiding life altogether, until even the slightest chance of moral complexity has been eliminated. “Postpone life; I’ve discovered another possible ethical problem!”

My reason for bringing up this subject is that research ethics seems to be in continual danger of succumbing to problematic forms of ethical perfectionism. The dependence on research scandals in the past and the demand to avoid them in the future makes it especially vulnerable to this strange ideal.

Don’t for a moment believe that I recommend living without reflection. But ethical problems must be confronted while we live and develop our activities: “as we go along.” We cannot postpone life until all ethical complexity has been eliminated.

The risk is that we fancy ethical problems without reality and postpone urgent research initiatives on the basis of derailed demands, while we fail to face the real ethical challenges.

Pär Segerdahl

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

What is philosophy?

Someone asked me what philosophy is. I answered by trying to pinpoint the most frequently used word when one philosophizes.

What does a philosopher most often say? I believe he or she most often says, “But…”:

  • “But is that really true?”
  • “But shouldn’t then…?”
  • “But can’t one imagine that…?”
  • “But how can anyone know such a thing?”
  • Etc.

Always some unexpected obstacle! Just at the moment when your reasoning seems entirely spotless, an annoying “but…?” knocks you to the ground and you have to start all over again.

Confronted with our spontaneous reasoning, a philosopher’s head soon fills with objections. Perplexing questions lead into unknown territory. Maps must be drawn the need of which we never anticipated. A persistently repeated “but…?” reveals challenges for which we lack preparedness.

But the goal is not that of interminably objecting. Objecting and being perplexed are not intrinsic values.

Rather the contrary. The accumulation of objections is a precondition to there being a goal with philosophizing: that of putting an END to the annoying objections.

Philosophy is a fight with one’s own objections; the goal is to silence them.

But if that is so, what point can philosophy have? An activity that first raises annoying objections, and then tries to silence them: what’s that good for!?

Try to reason about what “consent to future research” means. Then you’ll probably notice that you soon start repeating “but…?” with regard to your own attempts to reason well. Your objections will annoy you and spur you to think even more clearly. You will draw maps the need of which you had not anticipated.

Even if we prefer that we never went astray, we do go astray. It pertains to being human. THEN we see the point with persistently asking “but…?”; THEN we see the purpose with crisscrossing confusing aspects of life until we survey them, haunted by objections from an unyielding form of sincerity.

When we finally manage to silence our irritating objections, philosophy has made itself as superfluous as a map would be when we cross our own street…

…until we go astray again.

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

Who, or what, becomes human?

Our long childhood and dependence on parental care seem to leave no doubt about it: we are not born as humans, we become human.

I want to highlight a particularly tempting metaphor for this process of “becoming human” – the metaphor of:

  • “Order out of chaos.”

According to this metaphor, human infancy is abundantly rich in possibilities; so abundant, in fact, that it is a formless chaos – a “blooming, buzzing confusion,” as William James characterized the infant’s experience of being alive.

To acquire recognizable human form, the child’s inner chaos must be tamed through the disciplining efforts of parents and society at large (the metaphor suggests). The child’s formlessly rich inner life must me narrowed down, hardened, made boring… until, finally, it becomes another obedient member of society.

Society does not acknowledge a real human subject until the norms of “being human” are confidently repeated: as if the child easily would slip back into its more original state of blooming, buzzing confusion, the moment the reiteration of the social norms of humanity terminates.

The “order out of chaos” metaphor makes life and growth look like death and atrophy. To become human means aborting limitless possibilities and gradually turning into that tragic effect of social forces that we know as “the mature adult.”

Perhaps the intriguing topic of the “deconstruction of the subject” is nothing but rigorous faithfulness to the logic of this tempting metaphor? If becoming human is anything like what the metaphor presents it as, then “no one” becomes human, strictly speaking, for before the disciplined human is formed, there is nameless chaos and no recognizable human subject.

But how can the proto-human chaos – I mean, the child – be so responsive to its non-chaotic parents that it reduces its inner chaos and becomes… human? Isn’t that responsiveness already a form of life, a way of being human?

Dare we entertain the hypothesis that the newborn already is active, and that her metamorphoses throughout life require her own creative participation?

I believe we need another understanding of human becoming than that of “order out of chaos.” – Or is human life really a form of colonization of the child?

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

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