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

Month: August 2013

The diversified uses of biological samples

As a reminder of how diversified the collection and use of biological samples is, I recommend a paper by Takako Tsujimura-Ito, Yusuke Inoue (currently a guest researcher at CRB), and Ken-ichi Yoshida:

Departments of forensic medicine obtain samples from autopsies in order to secure evidence that can be used in court. These samples, often whole organs, typically need to be stored for long periods, since cases sometimes require re-examination of the evidence. The samples are stored also for secondary use in research advancing both clinical and forensic medicine.

The problem addressed in the paper concerns the communication with bereaved families. Families are often not contacted by the forensic departments in Japan, since such contacts can be seen to threaten the neutrality of the evaluation of the evidence.

Emphasizing that stored samples from autopsies benefit bereaved families, patients and society as a whole, the paper recommends more effective ways of communicating with families, to avoid damage to public confidence when families inadvertently get to know that samples from deceased family members are stored or used in research.

Pär Segerdahl

We recommend readings - the Ethics Blog

Save humanity from the human

We must enhance the human; or else humanity will come to an end. Thus dramatically one could summarize the bioethicist Julian Savulescu’s TEDx-talk in Barcelona in July.

The talk lasts fifteen minutes; you can watch and listen to it yourself: The Need for Moral Enhancement.

The idea is that we urgently need medicine and technology to enhance our moral skills; otherwise we will not be able to handle the global threats that we ourselves created: climate change, nuclear weapons, terrorism, starvation, escalating violence.

Globalization, in short, created a world with dimensions to which our hunter-gatherer morality isn’t adapted. Only a moral pill can save us now.

Listening to the talk, I’m struck by how archaic it sounds, despite references to modern medicine and technology. Thus fire-and-brimstone preachers always made people feel the proximity of the end of the world. Thus fire-and-brimstone preachers always made people feel that the cause of the despicable state of the world is their own moral failure. Thus preachers always forced a new awakening:

  • “You’re on the wrong path; I can show you the way!”

The difference is the use of what could be termed the modern rhetoric of empirical justification, in which all claims must be supported by evidence… that is to say, by PowerPoint slides. The rhetoric seems to direct the use of evidence, however, for evidence pointing in undesired directions isn’t cited.

Neither does Savulescu explore alternative ways of thinking. Has globalization really produced a world so big that we cannot handle it? Couldn’t one just as well claim that globalization created a world so miserably tiny and manageable that one might grieve for the death of all that is great?

In the talk, the most archaic form of moralizing is provided with a modernized rhetorical façade, in order to persuade us that only conversion to a biomedically perfected morality can save us now. It is slightly paradoxical.

No wonder the audience looks dejected.

Pär Segerdahl

The temptation of rhetoric - the ethics blog

Characterizing reality

Reality is on the move, and so are we. Therefore, we are continuously challenged to characterize it, and us, anew. What is it like today? What have we become?

I believe that Nietzsche made such a renewed characterization of reality, or of what we became in the nineteenth century, when he said: God is dead.

How does such a characterization work? Is it a statement of fact? Did Nietzsche go out into the backyard and found God lying dead on the ground, as one can discover a dead bird? Hardly, Nietzsche’s characterization of reality can be contested in a way that the death of a bird cannot.

Is it an ideological position, then, one that Nietzsche invented out of the blue and tried to impose on reality? Hardly, for it is connected with numerous factual features of nineteenth-century life, such as the steam-engine, newspapers, industry, exploration expeditions, science, democracy… I’m not enough of a historian to enumerate them all.

Taking the issue to our own times: Can you imagine a Bach writing music for the glory of God alone… living in a suburban row house area, with the car parked outside, just after shopping in the mall? It is difficult to imagine such a Bach, and Nietzsche’s statement could be said to characterize that difficulty.

If we accept Nietzsche’s statement as a striking characterization of the difficulty of imagining a modern suburban Bach, it appears almost factual. It is what reality is like; what we have become. And yet, someone could contest the characterization, and that reality, and see it as a degenerated frame of mind to resist.

So what do statements of Nietzsche’s kind do? Do they describe reality or do they merely express individual perspectives?

I find the task of characterizing our characterizations of reality as one of the most challenging philosophical problems. Its urgency is obvious in bioethics, which deals with realities that certainly are on the move. New biomedical practices continuously challenge our characterizations of embryos, of stem cells, of health and disease, of research participation…

As I indicated on The Ethics Blog last week, research participation is “on the move,” due to developments in biobanking. It no longer solely means participation in specific studies. It will more and more mean also contributing to biobank infrastructures that are constructed to support future, not yet specified studies.

Is that a fact or a position? I think we need a more nuanced characterization of our continuously renewed characterizations of reality!

Pär Segerdahl

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

The specific study misconception of biobank infrastructure

It is comprehensible that a patient who agrees to participate in a clinical trial expects to get access to a new effective therapy that will restore health. It is comprehensible that it is difficult to convey objective, dispassionate information that such an expectation is unrealistic, given randomization and other features of clinical trials.

Participation in biobank research ought to be simpler to understand. How can you expect to get healthy by giving a blood sample and allowing future research to combine the genetic data that can be obtained from the sample with data accumulating over time in health registries? The therapeutic misconception ought to be less tempting in biobank research, making the relationship between researchers and participants more straightforward.

For this reason, I was surprised to read on the Science Codex Blog about a study indicating difficulties to understand participation in biobank research; difficulties similar to those that more comprehensibly arise for participation in clinical trials.

What surprised me even more, however, was the discussion about this finding that was quoted on the blog. The fact that participants in biobank studies cannot expect a new and better therapy was presented as a shortcoming vis-à-vis clinical trials, as if such an expectation was not a misconception. Moreover, hopes were expressed that a change is underway:

  • “Some new models for biobank studies are more inclusive of the research subject, offering on-going contact and return of results that may impact their health, says Dr. McBride.”

I do not exclude that such models might work for some restricted biobank studies about specific diseases, which might require on-going contact with a particular patient group to get the research done.

But biobanking is more and more about building infrastructures where samples are stored indefinitely for future research that cannot be specified in advance. Making participation in such infrastructures more like participation in specific clinical trials – supporting the therapeutic misconception where it ought to be most distant! – appears fundamentally misguided.

The infrastructural nature of modern biobanking remains to be understood. It needs to be freed from what might be termed the specific study misconception.

Pär Segerdahl

We challenge habits of thought : the Ethics Blog