Bioethics behind the facade: research and new thinking

The finished result easily becomes a picture of the process of achieving it. For example: We hear a Beethoven symphony and think that the genius had this magnificent composition in his head. He just needed to write it down.

As if the result existed from the beginning and only needed to be put on paper. I don’t know much about Beethoven’s working process, but doubt that it consisted in writing down already completed symphonies. Maybe, during a walk, a tiny idea entered his mind: a theme that made an impression on him, but that definitely was not the finished symphony. Thereafter, he explored the theme, attentive to where it wanted to go and letting it evolve in different forms and variations. Maybe he examined the theme at the piano.

Only gradually did this creative work shift to actually sitting down and composing. But still, as an exploration of the theme, albeit in the final phase of the process. And maybe it turned out that the theme worked better for a string quartet instead.

Bioethics is often misunderstood as we misunderstand Beethoven. We identify bioethics (and research ethics) with the finished result: with ethical guidelines, with the declaration of Helsinki, with models of consent, with the system of ethical review etcetera.

Bioethicists then appear like people who just put ethical rules on paper and establish bureaucratic systems to check that they are followed by researchers.

Bartha M. Knoppers recently questioned that image, in an article with the significant title:

• Does policy grow on trees?

Ethical frameworks for biomedical research originate in processes of ethical research and thinking, often in dialogue with researchers in the field, and with patients and the public. Behind the facade, bioethics is an art of conversation as well as explorative research and new thinking. This work is not the least self-critical, for the ethical frameworks need to be constantly modified and sometimes partially dismantled.

An example of this work behind the facade is a new book on the regulation of biobanking, edited by Deborah Mascalzoni at CRB:

• Ethics, Law and Goverance of Biobanking

In this book, a number of researchers present their explorations. It gives you insight into the work processes and the conversations and debates behind the regulation of research.

One principal problem raised in the book is that regulatory systems have become increasingly complex and opaque. Should we then create even more regulation?

Deborah Mascalzoni thinks that ethical research is more than just researchers following rules written by bioethicists. Instead of facing new challenges with even more regulation, she points out that all of us can think ethically, and that scientists have a moral responsibility to reflect on how they develop their research practices.

Ethics need not be a burden for research but can be a living concern within it. It can grow and flourish with the research practices, if we dare to do what Beethoven did: trust that seemingly insignificant thoughts and ideas can grow into something beautiful and real.

Pär Segerdahl