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

Author: Pär Segerdahl (Page 37 of 43)

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

LifeGene and participation of minors in biobank research

One of the issues preceding the Swedish Data Inspection Board’s decision to stop the population-based biobank LifeGene concerned participation of minors.

LifeGene had planned to collect samples from half a million Swedes, including children. A regional ethical review board, however, decided against collecting data from children. Only data collection from adults was approved of.

LifeGene saw participation of minors as essential to their purposes and therefore appealed against the decision.

Unfortunately for LifeGene, the central ethical review board took the fateful decision that LifeGene couldn’t even undergo ethical review. LifeGene’s broad purpose – “future research” – indicated that LifeGene was infrastructure for research and not a specific research project. (According to the law, only research projects are ethically reviewed.)

The broad future-oriented nature of LifeGene’s purpose later became the main reason for the Data Inspection Board to stop LifeGene.

The fact that the stopping of LifeGene was preceded by the issue of children’s participation in biobank research makes a recent publication on this problematic all the more relevant for biobankers to read.

The article by Kristien Hens, Kris Dierickx and colleagues, published in the European Journal of Human Genetics, aims towards an ethical policy for minors’ participation in biobank research.

The authors emphasize that relevant ethical concerns differ from those of adult participation in biobank studies as well as from those of children’s participation in clinical trials. There is therefore a need for principles that apply uniquely to minors’ participation in biobank research.

I will not summarize the authors’ conclusions since they are so neatly summarized at the end of the article in the form of eight principles about, for example, subsidiarity and consent.

The eighth and final principle, however, deserves special mentioning, since it introduces a new policy concerning return of individual results. If I understand it right, the principle states that parents have a limited right to decide not to receive genetic information about their children. If an incidental finding concerns a preventable or treatable early-onset disease and it has clinical validity and utility, then parents should be informed about the finding regardless of their wishes.

The right not to know is overruled in this particular case.

The article is well worth reading as a constructive discussion of concerns that need to be addressed when children are included in biobank research.

Pär Segerdahl

We recommend readings - the Ethics Blog

Extended deadline for Researcher in Health Economics: January 7, 2013

Ethical questions about health care and medical research often require empirical input, to make arguments valid for real conditions.

Many of the future issues that engage us at CRB need empirical basis in so called Discrete Choice Experiments (DCE). We are therefore recruiting a researcher with a doctoral degree in health economics and documented skills in DCE.

We are looking for a creative person who likes multidisciplinary collaboration and is fluent in English, and who can start working as soon as possible.

Read more and submit your application!

Pär Segerdahl

ethics needs empirical input - 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

Wanted: two researchers to join our team

The Centre for Research Ethics and Bioethics (CRB) is currently recruiting two researchers. We are looking for creative persons who like multi-disciplinary collaboration and are fluent in English.

1. Researcher in health economics (UFV-PA 2012/2684): We are looking for a person with a doctoral degree in health economics with documented skills in Discrete Choice Experiments.

2. Researcher in ethics/biobank/registry research regulations (UFV-PA 2012/2683): We are looking for a person with a doctoral degree in ethics or law, or someone with a doctoral degree in medicine or life sciences with an interest in ethical issues.

Both positions are 2-year appointments, with possible prolongation.

Application deadline: November 29, 2012.

(Job descriptions and information about the applications in the links above.)

Pär Segerdahl

We transgress disciplinary borders - the Ethics Blog

Commercial gene tests and incidental findings

I read Arthur Caplan’s criticism of the personalized gene tests that some companies insist we must buy to gain control over our future health. I could not help wondering if his criticism is applicable also to the idea that biobanks should inform research participants about incidental findings about their genes.

Caplan rejects the crystal ball view of genetic information that is utilized in the marketing for commercial gene tests: the image that genetic information is uniquely predictive about YOUR future health.

The crystal ball image is a prejudice. It is a gene myth that makes people believe they MUST get genetic information to control their future health. It is a myth that makes people think they have a RIGHT to look into the crystal ball, now that this uniquely powerful instrument is available.

But disease risk is the result of complex interactions between genes and environment, and “no one knows how a single person’s lifestyle, upbringing and environment interacts with their particular genes to create risks,” Caplan writes.

If this is true and genetic information in abstraction is far from predictive, then I cannot avoid worrying about how the crystal ball image shapes also the ethical discussion about incidental findings in genomic biobank research.

In this discussion, accidentally discovered individual genetic variation is sometimes described as a good that participants have a right to be informed about, in return for the biological material they donate to the biobank.

If Caplan is right and such information typically is not worth the money, how can it be a good that participants have a right to receive such information from the biobank in return for their sample?

Do well-meant ethical arguments sometimes resemble unethical marketing campaigns?

Pär Segerdahl

Approaching future issues - the Ethics Blog

Is there a need for a retractions database?

I wrote a while ago about drug companies as whistle blowers. Evidently, the pharmaceutical industry wastes more and more resources unsuccessfully trying to replicate published research studies.

The amount of irreproducible published research surprised me. If there is such a trend, questions accumulate. Are researchers becoming increasingly careless, or even fraudulent? Are researchers acting under too heavy pressure to publish positive results? Do many researchers lack sufficient skills in statistics?

Or has research in the life sciences entered such complex terrain that it has become virtually inhuman to survey all factors that may influence the results?

I’m not competent to answer these questions and welcome helpful comments.

A way to handle at least part of the problem has been suggested: set up a centralized retractions database. Such a resource would help scientists and the industry to exclude at least some of the most unsuitable candidates for replication.

An ambitious study of retractions used secondary sources when the journals’ own reasons for the retractions seemed incomplete or vague. According to this study, fraud or suspected fraud caused 43% of the retractions. Duplication accounted for 14% of the retractions, and plagiarism for 10%; only 21% of the retractions had to do with error.

If you want to read more about the study on retractions, it is summarized in this recent Nature News article.

Pär Segerdahl

Following the news - the ethics blog

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