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

4 Responses to The specific study misconception of biobank infrastructure

  1. Ernst Mecke says:

    I should agree that the new (electronic) possibilities of handling vast amounts of data lead to research habits which are not easy to fit into traditional ideas what clinical trials are and are about. And certainly the main expectation of for whom the whole business is good has presumably shifted quite a bit from “good for the patient” towards “good for future patients” (although that would mostly also be true for “classical” clinical trials) – somehow comparable to signing the card which allows medics to use your organs and tissues in case of your death.
    But I see still the possibility that even the modern type of research can be good for the patient her/himself, e.g. if s/he is found to carry a gene which makes certain (avoidable) living habits very risky. In this case one result of the investigation could be a written message to the patient that it would be highly recommendable for her/his health and life expectation if certain habits could be avoided (a list of institutions where better habits could be learned and trained to be added …).

    • Thanks a lot! The question of how to handle incidental findings about individual participants in biobank research is much discussed today. I hope to be able to return to it on The Ethics Blog soon.

  2. […] I indicated on The Ethics Blog last week, research participation is “on the move,” due to developments in biobanking. It no […]

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