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

Category: In the media (Page 5 of 7)

Athletes’ feeling that doping is okay is socially created

Doping is often discussed as the individual athlete’s own decision. The athlete wants to win and strategically chooses to take drugs to reach the goal.

When the cyclist Lance Armstrong recently confessed that he used performance enhancing drugs while he won Tour de France seven times, he personally took responsibility for his actions and presented doping as his own decision.

Simultaneously, he said in the interview with Oprah Winfrey that he didn’t feel like a cheater while he was using the drugs. Doping was experienced as part of the job. It didn’t feel wrong while it went on!

He suddenly spoke of doping not in terms of individuals making strategic choices, but as a doping culture to which he had belonged without reflecting or making conscious choices, and which he now wanted to change.

In a recent article in Sport, Ethics and Philosophy, Ashkan Atry investigates, with Mats G. Hansson and Ulrik Kihlbom, this easily neglected collective origin of individual athletes’ feelings of right and wrong.

Lance Armstrong confessed doping and took full responsibility for it as his own choice. It belongs to the dramaturgy of the responsible confession. But perhaps this dramaturgy presents doping in a misleadingly individualistic light?

Ashkan Atry thinks so. Doping is a culture, materially and emotionally. The phenomenon reaches beyond the individual athlete, and involves not only team-mates but also coaches, doctors, sponsors and fans (with their demands for superhuman performances).

The feeling that it is okay to dope is socially created. To successfully handle doping, we must avoid tempting individualistic perspectives and focus more on social processes and what Atry calls emotional cultures in sport.

I recommend the article as a refreshingly realistic approach to a phenomenon that otherwise easily evokes ineffective moralizing gestures.

Pär Segerdahl

We transgress disciplinary borders - 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

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

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

Project Nim: a tragedy that was interpreted as science?

Last week I wrote about the significance of negative results in science. This week I saw one of the saddest documentaries I’ve ever seen, featuring the tragic context of an often cited negative result in science.

The documentary, Project Nim (2011), was about the psychologist Herb Terrace’s attempt in the 1970:s to teach American sign language to a young chimpanzee, in a specially designed classroom at Columbia University in New York City. “Specially designed” here meant bare and small in order to avoid suggesting activities that are more exciting for a young ape than reproducing the teacher’s hand movements.

Terrace’s personal stance to the language project struck me as odd. Scientifically, he wanted to test the hypothesis that an ape can be taught to construct sentences. This would disprove Chomsky’s view that language is an innate and uniquely human trait. From a more “personal” point of view, what excited Terrace most was the prospect of experiencing a nonhuman animal communicate ape thoughts.

It would be like meeting an alien from outer space who miraculously communicated foreign thoughts to humankind. Treating young Nim as such an alien research subject strikes me opposed to the very idea of human language and communication.

The whole project was a mess, ill-planned and dysfunctional from the start. And yet there were happy moments where good relationships developed between Nim and responsible caretakers/teachers/surrogate parents outside the classroom.

In these more “distractive” real-life situations, where the point wasn’t about reproducing the teacher’s signs but about doing meaningful things together and communicating about them while doing them, it seemed Nim used signs to talk. The caretakers were optimistic, as was Terrace.

However, as Nim got bigger and stronger and approached adolescence, new problems appeared. He began to attack and bite his teachers, and Terrace feared being sued. These troublesome behaviors developed more rapidly than Nim’s signing abilities, and Terrace was worried.

One day, Terrace called his staff to a meeting and declared that the project was over. They had collected suffient data, and Nim could be sent back to the primate research center in Oklahoma where he was born.

The rest of Nim’s life was was awful, terrifying (although responsible caretakers did try to make a difference).

Simultaneously, Terrace started reporting the project; in a book as well as in an article published in Science. He sat down, watched videotaped interactions between Nim and his teachers, and came to the conclusion that Nim had not acquired the ability to use signs linguistically in genuine communication with humans. He was merely mirroring the teacher’s signs (or begging for things).

The negative result that Terrace published perhaps received more attention than any other scientifically published negative result. In spite of the fact that the project was dysfunctional from the start, Terrace’s publications were welcomed as presenting hard scientific evidence that apes cannot learn to communicate in language.

I’m not so sure what conclusions can be drawn from a research project that could just as well be described as a dysfunctional family history ending in tragedy. Moreover, as Peter Singer observed when he watched the documentary, Terrace could hardly end the project and send Nim away without reporting negative results.

Can we trust Terrace’s judgment when we watched the videotapes and decided that the ape he sent away did not speak with the fellow humans with whom he interacted?

Anyway, the book that Terrace wrote, Nim: a Chimpanzee Who Learned Sign Language (1979), is fascinating and well worth reading. It contains vivid descriptions of Nim’s life with humans; recollections that often seem to contradict the conclusions that Terrace finally reached.

Pär Segerdahl

Understanding enculturated apes - the ethics blog

Drug companies as whistleblowers

Some years ago, John Ioannidis warned that most published research findings probably are false.

More recently, the drug companies Bayer and Amgen reported that their attempts to replicate scientifically published studies that could be a basis for new drug development most often fail. Amgen, for example, failed to replicate 47 of 53 oncology and hematology results that they initially deemed interesting for their purposes.

We are used to seeing drug companies under attack by right-minded critics. Now they are in the position of delivering the critique. They invalidate most scientifically published findings in the field of medicine. By going public about this embarrassing fact, they act as whistleblowers revealing emptiness in current scientific practices and ways of supporting and awarding high quality research.

A solution to the problem is now being proposed, though not by the research community, but by a company: Science Exchange. They offer researchers a new service. For a fee, they attempt to reproduce the researchers’ studies. If the studies can be successfully replicated, the company issues a certificate of reproducibility.

Can such a proposal contribute to a transformation of current scientific practices, towards an order where peers not merely read and assess papers, but practically try to validate results?

But shouldn’t validation be internal to the research work, rather than outsourced?

If I interpret Karl Popper right, a scientist should actively try to achieve negative results. Only by failing to produce negative results can she tentatively claim positive results.

Do current ways of measuring and awarding scientific quality undermine the self-critical spirit of scientific work?

Pär Segerdahl

Following the news - the ethics blog

What do donors need to know about future research?

I’m reading a Scientific American Guest Blog, on the ethics of future-use DNA sampling. Donating DNA to research is described as a more lasting donation than donating organs or embryos: DNA is information and information can last longer.

That donating DNA is such a lasting donation seems to imply that the future use to which the DNA can be put to use is more open. Who knows what information future researchers might be able to obtain from DNA donated today?

The author of the guest blog, Ricki Lewis, asks how consent can be obtained for DNA sampling intended for future genetic research.

She rejects the view that researchers must know in advance where the research might lead and inform donors about it; and if research takes unforeseen directions years or decades after the donation, researchers must contact donors again for renewed consent.

This view is rejected because knowing where research might lead “is not how science works.” And renewed consent would be “confusing, disturbing, and likely expensive.” – I agree.

Ricki Lewis’s own solution is the following:

  • “…informed consent documents should state that the sample might be used in the future to get information unknown today. Participants or patients can agree, or not sign.”

Both solutions seem to operate on a level that strikes me as less relevant to DNA donors.

People who donate DNA to science probably want to contribute to research that can improve prevention, diagnosis and treatment of various diseases. That is the level at which they are concerned about the future use of their DNA: the level of the practical significance of the research.

The exact scientific path that future research takes is less relevant to donors, I believe, as long as the research has the kind of practical significance that motivates their donation. And to ask for consent to do science as science is done – without knowing in advance where it might lead – could be confusing.

I also wonder: could a consent form that emphasizes the open and unpredictable nature of scientific research be misused on the practical level that probably concern donors more?

Pär Segerdahl

Approaching future issues - the Ethics Blog

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