Fruitful uncertainty

February 27, 2013

We tend to imagine the minds of great thinkers and scientists as fountains of knowledge, intelligence and certainty. That is what their brilliant works make us believe. The products are perfect; therefore, the minds that produced them must have been perfect.

Well, the opposite may also be true. Brilliant works can stem from an ability to endure ignorance, lack of clear-sightedness, and uncertainty – because such shortcomings motivate serious counter-attacks and hard work. Striving to overcome uncertainty and shortcomings can result in the most brilliant works.

These so-called “great minds” may have been people who loved their uncertainty because it alerted them to what requires more attention: “Here is a difficulty I must take more seriously!” But that is a moral quality rather than an intellectual one!  I just read some fascinating quotations from Linnaeus in Giorgio Agamben’s book, The Open, making me sense that moral quality in Linnaeus.

It must have been confusing for Linnaeus that he couldn’t find a given characteristic that clearly separates humans from apes. Still, he seemed to enjoy this uncertainty about our humanness and even teased those who couldn’t accept it by suggesting that the only difference he could find was a ridiculous dental detail without systematic significance:

  • “… just as the shoemaker sticks to his last, I must remain in my workshop and consider man and his body as a naturalist, who hardly knows a single distinguishing mark which separates man from the apes, save for the fact that the latter have an empty space between their canines and their other teeth.”

Linnaeus’ ability to stay with this uncertainty is further reflected in the name he gave our species: he didn’t add a given identifying characteristic to the generic name Homo.

I always believed that sapiens was meant as a given characteristic, just as Aristotle saw rationality as the distinguishing mark of the human. Agamben points out, however, that Linnaeus used the philosophical imperative nosce te ipsum, know yourself. The name Homo sapiens doesn’t appear until in the tenth edition of Systema naturae, and probably retains the sense of an imperative rather than a given characteristic.

In the absence of a given distinguishing mark, being human was for Linnaeus a task, Agamben suggests. The breathtaking name that Linnaeus originally gave our species, then, was:

  • Homo-know-yourself!

Only someone who is at home in uncertainty and is able to think in it would dare to “classify” our species as an imperative.

Although I’m sure that Descartes had the same moral character and derived nourishment from his own doubts, he was confident about what separates him as a human from the animals. He had mind, reason, while the animals were automata.

Linnaeus couldn’t share Descartes’ confidence and teasingly wrote:

  • “Surely, Descartes never saw an ape” (Cartesius certe non vidit simios.)

Don’t be ashamed of your uncertainty but value it as an asset!

Pär Segerdahl

The Ethics Blog - Thinking about thinking


Ethical principles causing moral hallucinations

February 20, 2013

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


An obligation to look for incidental findings in genomics research?

February 13, 2013

A new article in The American Journal of Bioethics attempts to take the discussion about incidental findings in genomics research a step further by asking:

  • “Assuming there is a duty to disclose significant incidental findings, might there be an obligation for researchers to actively look for these findings?”

The authors use an ancillary care model as a framework for their discussion. Ancillary care means care for research participants that is not required directly by sound science; not required to conduct a trial safely, for example, or to manage subject injury. The model was originally developed for research in developing countries.

The authors see ancillary care as the best perspective on incidental findings: a duty to disclose incidental findings is best justified as an ancillary-care obligation. The question in the article, then, is the following. If the ancillary care model implies a duty to disclose stumbled-upon incidental findings, does it imply also a duty to actively look for such findings?

To answer the question, three criteria are formulated all of which must be satisfied simultaneously to support a duty to look for incidental findings:

  1. Benefit: the genetic information sought must be beneficial for the patient.
  2. Uniqueness of access: researchers must be in a unique position to look for, assess and provide the genetic information.
  3. Burden: analyzing the genome for incidental findings must not take too much time, effort and resources from research.

Using these criteria, the authors conclude that currently there is no obligation to look for incidental findings in genomics research. Although uniqueness of access is high (genomic techniques are available primarily through research), benefit is low and burden high.

This may change in the future, the authors speculate, when better knowledge and technology make benefit high and burden low, and the technology still is available primarily through research. In such a scenario there would be an obligation to look for incidental findings. In the distant future, however, when genomic techniques are available also in clinical care, the obligation to look for incidental findings once again disappears.

In my view, this attempt to take the discussion a step further suffers from two major shortcomings that pertain already to the assumption that the ancillary care model could imply an obligation to disclose stumbled-upon incidental findings in genomics research.

Genomics research often is carried out as biobank research where the researcher’s relation to participants does not resemble a doctor-patient relationship. The researcher is not necessarily a physician and may work with samples collected years ago by others. The basic idea in the ancillary care model that “medical researchers must strike a balance between their obligations to medicine and those to research” is not obvious in many forms of large-scale biobank research.

Moreover, incidental findings in genomics research typically mean highly complex genetic risk information. It is not entirely clear, at least not to me, if the notion of, for example, actionability, has the same meaning for a discovered disease as for a discovered increased genetic disease risk.

An illuminating and realistic discussion about incidental findings in genomics research must, I believe, specifically address the biobank-infrastructural context of much genomics research, and the complex nature of genetic risk information.

If the ancillary care model generally is the best perspective on incidental findings, the applicability of this model to characteristic forms of genomics research would have deserved more careful attention.

Pär Segerdahl

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


Solidarity and biobanking

February 6, 2013

The concept of solidarity is currently receiving attention in bioethics and inspires new approaches to ethical problems.

The Nuffield Council on Bioethics recently published a report – Solidarity: reflections on an emerging concept in bioethics – initiating the development of a systematic solidarity framework for approaching difficult ethical questions in biobanking, biosecurity and health inequalities.

Concerning biobank participation, for example, one of the authors of the report makes this interesting statement:

  • “In the spirit of solidarity, we believe that it is acceptable to ask participants to agree to their sample being used in any future research that is within the broad aims of the biobank and has been approved by a research ethics committee. The risks to the participant are very low yet it would save valuable time and resources for the biobank.”

It is furthermore suggested that participation agreements should replace traditional consenting procedures. – I will study this suggestion and hope I can comment on it soon.

Continuing the work in the report, the Nuffield Council on Bioethics and the Brocher Foundation organize an international symposium:

The report and the symposium appear very interesting!

Pär Segerdahl

We recommend conferences - the ethics blog


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