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

Year: 2013 (Page 5 of 5)

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

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